FibroAction News Feed

Travelling With Fibro

Tue, 27 May 2008 12:00:00 +0100

Travelling can be stressful at the best of times, but when you have Fibro it can be a complete nightmare.

Getting organised ahead of time for any significant journey can make a world of difference. As well as planning and investigating various aspects of the trip, you can also try and make sure you are as physically prepared as possible.

Although it is often hard to avoid rushing around before a trip away, making sure you get as much rest as possible beforehand can make a big difference to how you physically cope.

If you have problems with myofascial tension and trigger points, then getting a myofascial release massage done shortly before the journey will mean that you don't start off with myofascial problems that will only be worsened by travelling. However, make sure that you leave yourself enough time to recover from any after effects of this, or any other treatment you have.

If IBS is a particular issue for you then being especially careful in the run-up to the trip away can help to avoid problems. Make sure you avoid any foods you are intolerant of, as well as general IBS triggers, such as too much insoluble fibre or high fat foods.

No matter how you are travelling, there are some preparations that will always be useful:

Make sure that you have enough of all your medications for the whole trip away, and include over-the-counter medications in this. Make a kit of all the meds you might possible want during the journey so this can be kept close to hand; a pencil case or small wash-bag often make ideal medication kit bags. If you are travelling abroad, keep all medications in their original packaging, take copies of actual prescriptions with you and make sure that none of your medications are illegal in the country you are visiting – for example, there are heavy penalties in some countries for carrying codeine or even having it in your blood stream.

Work out everything that could help you deal with your pain on the go. TENS machines can be useful for some people and are portable. If heat works for you, then get some of the patches that heat up on their own, as you won’t be able to rely on having access to either a microwave or electricity socket.

Take your own snacks and drinks so that you don’t have to rely on being able to stop and find something suitable for you in a rush.

Dress comfortably. Even if you want to look smart or elegant on arrival, this is possible. There are some wonderfully cut leisure clothes available these days and even if you need to arrive wearing a suit, you’ll look better if you travel in comfortable clothes and then change right before you arrive. Layers are always a good idea for travelling, but especially when Fibro means you don’t know when you will go from hot sweat to shivering cold.

Take everything you might need for comfort. A small blanket and either a feather pillow (which compress well), small cushion or blow up cushion can make a world of difference. If you use them to rest at home, then take an eye mask and ear plugs.

Pack a small wash kit with toothbrush and toothpaste, facial cleansing wipes and a packet of tissues (in case there is no toilet paper). When you are exhausted, being able to clean your face and teeth can perk you up and travelling tends to make everyone feel grimy.

Make sure that, no matter how you are travelling, everything that you could need on the trip to help you cope with your Fibro is either right next to you or easy to access.

TOP 10 TIPS FOR TRAVELLING WITH FIBRO

Plan. Work out what the specific problems associated with travelling are going to be for you, whether it’s sitting still, needing a toilet frequently or having to walk long distances in an airport. If you know something will be a problem beforehand, you can try to work out a solution.

Accept help. It’s all very well being independent, but if it means you arrive at your destination in a major flare, it’s unlikely to be worth it.

Try and be in the best shape possible physically before you even start.

Have a medications kit. You don’t want to have to stop and unpack everything when you need a painkiller or, even worse, not be able to get at the medications that could help you because they are out of reach in an airplane hold.

Take travel supplies of pain relieving products, such as self-heating heat pads.

Take your own snacks and water.

Dress comfortably.

Take comfort items, such as a blanket and travel pillow.

Choose your seating position in the vehicle, whether it is a car, train or ‘plane, so as to make it as easy as possible for you.

Take plenty of breaks and stretch regularly.

Remember to relax, take it easy and enjoy what you can. The whole point of preparing for a journey when you have Fibro is to make it easier for you, not to stress you out.

When travelling by car with Fibro...

Find out where all the service stations on the route are, and where it is easy to get off the main road and find an alternative if needed.

Make sure you stop frequently, even if it is only for five minutes to enable you to get out and stretch.

Make sure you have enough leg room in the car to adjust your position.

Try and sit in a seat with a good head rest.

If you get nauseous, then sitting in the front may help.

When travelling by train with Fibro...

Book a seat to ensure that you get one. An aisle seat will make it easy to move around frequently.

If you need help with your luggage or with getting on and off the train, then let the station(s) know beforehand. This can make a big difference, especially in the larger stations where just the walk to the train can be a real effort and getting a ride there with your luggage can save you energy and pain.

Give yourself plenty of time to find the train and get on board.

When you board the train, locate the nearest toilets. If it is to be a long journey, then checking they are in useable order before you need them can give you time to find an alternative.

Get up and walk up and down and stretch regularly.

If you sometimes use a walking stick, then take it with you as it will likely make people give you more consideration.

When travelling by aeroplane with Fibro...

Make sure you have everything you need in your hand luggage.

Check with your airline what security measures are currently in place. For example, you may be unable to take liquids on board over 100ml or if they are not in clear containers. This can include toiletries, bottles of water and even yogurts. You may also need to have a doctor’s letter to take some forms on medications, especially anything injectable, on board the ‘plane.

Try and book a seat with extra leg room. Be aware that people with disabilities are not allowed to sit by the emergency exits: if you genuinely think that you would struggle to open an emergency exit if needed, then you should not ask for one of these seats. However, there are often other seats that have more space than usual that do not have these restrictions.

Try and get a seat next to the aisle so you can get up without bother.

Ask either the airline or the airport how far you will need to walk to your gate. This can be a very long way in some airports. If you think this is long enough to tire you, then arrange beforehand to get a lift in the electric cars they use.

During the flight, get up and move around regularly.

Stay hydrated – ‘planes are very drying for everyone.

If you are concerned about catching something because of the recirculated air, then you can buy portable air filters that hang quite unobtrusively around your neck and help to clear the air in front of you mouth and nose.

Get some rest on the ‘plane. Your comfort items will help with this, but it may also be a good idea to discuss with your doctor whether a sleep supplement or medication could help you travel better. Something to help you sleep can both help you rest on the plane and also help you avoid jet lag.

Explaining the Tender Point Test

Fri, 30 May 2008 12:00:00 +0100

The American College of Rheumatology (ACR) published a set of criteria for the diagnosis of Fibromyalgia Syndrome (Fibro) in 1990. For this, you need to have had pain in all four quadrants of the body (i.e. on both the left and right sides and above and below the waist) for at least 3 months. For the ACR criteria, you also need to have 11 out of 18 specifically chosen tender points. The tender points are spots on the body where everyone is more sensitive and so where it is easiest to test for the hypersensitivity to pain that characterises Fibro.

There can be many more points on the body in which you are sensitive, but these were chosen as the standard 18 to test.

The location of the 18 tender points described in the 1990 ACR criteria for the diagnosis of Fibromyalgia Syndrome are as follows (note that the tender points are located in the same place on either side of the body):

Back of the neck, either side of the spine at the base of the skull (the Occiput Tender Points).
At the front of the neck, either side of the windpipe, just above the collar-bone (the low cervical Tender Points).
Midway between the base of the neck and the shoulder, on the back edge of the big muscle there (the Trapezius Tender Points).
On the upper back, just above either shoulder blade (the Supraspinatus Tender Points).
Either side of the breast bone, just below the second ribs (the second rib Tender Points).
On the inside of the elbows, 2cm down from the elbow crease (the lateral epicondyle Tender Points).
Just above the buttocks (the Gluteal Tender Points).
On the back of the upper thighs, just below the hip joint (the Greater trochanter Tender Points).
On the knees, just inside of the knee cap (the knee Tender Points).

The doctor examining you may also press other points of the body which are less painful, in order to judge your pain baseline.

The tender point test can be very subjective and you may have experienced that different doctors carry out the test differently – and get very different results. Some doctors do not consider the tender point test to be accurate, but the inaccuracy of the test results is often down to it being poorly understood and performed. In order for the test to have most meaning, the doctor examining you needs to follow some common-sense guidelines for doing the test:

They need to tell you before beginning the test that you have to respond to each tender point examination and say if the point is painful (the points must be painful not just tender), because everyone responds differently in terms of grimacing and at what point they say “ouch”. Ideally the doctor doing the test should get you to rate the pain on a scale of 0 to 10, and record each response.
They should only press each tender point once as repeated pressing on sensitive areas can affect the result. It is easier if you are in a standard, easy access hospital gown and are in a comfortable position, either sitting or lying down. The doctor doing the test should locate the tender point position visually before applying any pressure and should then apply a force equivalent to 4kg, which should be sufficient to whiten the nail bed of the thumb used. The tender point should be pressed for long enough to give you time to respond.
They need to be able to tell the difference between tender points and myofascial trigger points which are also painful when pressed. The most obvious signs are that a myofascial trigger point, unlike a tender point, will feel like a knot in the muscle and will refer pain or other symptoms elsewhere.

As most doctors will have had no training in performing the tender point test and as there are no official NHS guidelines on performing the test, it is unfortunately not unusual to have a doctor that doesn’t know how to most accurately perform the tender point test. This doesn’t necessarily mean that the doctor is not a good doctor to manage the treatment of your Fibro, but it is worth keeping the above guidelines in mind, especially if your diagnosis is questioned simply because a poorly performed tender point test doesn’t result in you having a high “score”.

The Spoon Theory

Thu, 05 Jun 2008 12:00:00 +0100

Many people with a lot of different invisible illnesses, not just Fibro,struggle to explain to the people around them just how difficult a normal day can be.

This was the problem faced by Christine Miserandino (now Christine Donato) when a close college friend asked her what it was really like to live with Lupus, when sitting in the college diner one evening. This was a friend who had seen Christine on bad days as well as good, but who knew enough to know that she didn't really understand what it was like to have a chronic illness day in and day out.

In a moment of inspiration, Christine came up with the idea of representing her limited amount of energy in units of spoons and asked her friend to describe what she did on a normal day. Breaking down each task into its individual parts, and taking away a spoon for every task done, helped show her friend that these tasks, that healthy people take for granted as being easy, could be a huge use of limited energy for someone with a chronic illness.

Christine explained that "the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted."

The story of this explanation became known as 'The Spoon Theory' and is a central part of the community Christine has built up for other people with invisible illnesses at butyoudontlooksick.com. The Spoon Theory is now loved by thousands of people worldwide, not only as a way of explaining to their own friends and family how difficult normal tasks can become, but also because the essay shows that someone else truly understands what it can be like to live with a chronic invisible illness.

To read the Spoon Theory, click here.

Clinical trials

Sun, 08 Jun 2008 12:00:00 +0100

One way in which Fibromyalgia Syndrome (Fibro) patients can help further knowledge of the condition, and sometimes also get access to medications that they would not be prescribed otherwise, is through participating in a clinical trial.

Research into Fibro and treatment for it is going on all the time, and although much of the clinical trials are carried out in the US, some are carried out in the UK as well. Finding out about clinical trials can be difficult unless you know where to look. If you are interested in seeing what research into treatments is being carried out, here are some sources of information on clinical trials in the UK:

The British Medical Association (BMA) has got an article here on how to find about clinical trials that is a useful overview, including how to find information on how clinical trials are run.

The Medical Research Council (MRC) Clinical Trials Unit's website here has information about the studies being run by the MRC.

The UK Clinical Research Network (UKCRN) was established to support clinical research and to facilitate the conduct of trials and other well-designed studies across the UK. It is building a complete picture of the clinical research which is currently taking place across the UK and the portfolio of trials is searchable via the UKCRN website here. However the search function is not user friendly - you can't just search for a keyword for example.

One good site is the IFPMA Clinical Trials Portal here. Although you have to register (for free) it is simple to use. However, the location search function has some problems - for example, it recognised UK but didn't recognise USA as the American studies are listed by state.

Another good site is Current Controlled Trials, here, which allows you to search from multiple registers of trials easily and quickly. To do so you simply click on 'Search across multiple registers' under 'Search for trials', input your search criteria, select the registers you want to search (or all of them) and hit Go.

One of the best websites for searching clinical trials generally is clinicaltrials.gov, here, which, although it is an American site, provides information about ongoing clinical trials around the world. When comparing it to the other search websites listed here, it managed to come up with ongoing trials that didn't come up in the other searches. Using the Advanced Search function, you can choose your country and whether to only include Open Trials, as well as being able to enter multiple keywords.

These links are provided for information only. FibroAction does not recommend or endorse any clinical trial. Participation in any trial is entirely at the participants risk. FibroAction aims to include links to websites that provide relevant and useful information for people living with and interested in Fibromyalgia Syndrome. We will not knowingly provide links to sites that contain illegal, offensive or misleading information. Links will be provided based on the above criteria and at the discretion of FibroAction. Although we endeavour to check sites for high quality, accurate and appropriate information, FibroAction does not endorse nor accept any responsibility for the content of other websites. Please see our Disclaimer for more information.

Getting to know Christine Donato

Fri, 27 Jun 2008 12:00:00 +0100

Christine Donato (nee Miserandino) is the founder of the e-magazine and message boards at ButYouDontLookSick.com and the author of “The Spoon Theory”. A hugely popular advocate for people with all kinds of invisible illness, she is loved the world over for her positive attitude and big heart. Here we take the chance to get to know a bit more about Christine and what she does.

Can you tell us a little about ButYouDontLookSick.com?

Christine: "ButYouDontLookSick.com is a collection of articles, stories, personal essays, book and product reviews, with health resources and an active message board for the disabled, or those living with chronic pain or illness. We also have a chatroom, and an online store."

Some online support facilities can actually be negative and depressing, but ButYouDontLookSick.com is a very positive place. Any ideas on what the secret recipe is?

Christine: "I think that ButYouDontLookSick.com is a positive place because it started from the essay “The Spoon Theory” which is a positive story. The idea of sharing, networking, support and friendship grew from there. If I keep those goals in mind, then we never loose focus of building friendships and support through our illness."

People around the world adore “The Spoon Theory”. Can you briefly explain what “The Spoon Theory” is for someone who has yet to realise they are a “Spoonie”?

Christine: "The Spoon Theory was the first essay I ever wrote. It is a true account of when I was trying to explain what life was like living with a chronic condition. I used a normal every day item — a spoon - that people would see every day and so be reminded of the small struggles and choices we make every day. When you are healthy you do not have to think about every detail, like what you are eating, how long a walk to a store is, or how far it is back to your car. It is a story about using your energy, choices and consequences."

You are known for having Lupus, but you have Fibro as well, don’t you? How do you deal with the complications of having two conditions?

Christine: "Yes, I do have Lupus and Fibromyalgia. It is common for many autoimmune diseases to overlap and to overlap with Fibromyalgia as well. I also have Sjogrens Syndrome too. I just take one day at a time, one symptom at a time. In my struggle with these diseases, I have found that it doesn’t matter what you call a particular symptom, as long as you treat it. Whether Lupus, Fibro, or Arthritis causes the pain in my hands, the pain is there and needs to be addressed."

Lupus and Fibro are well known to mimic or overlap with other conditions, which can make accurate diagnosis very difficult. Have you got any advice for someone with Fibro who is concerned they may have Lupus as well?

Christine: "I would first recommend finding a doctor you like and trust. I also would keep a journal or a list of symptoms, when they occur etc. That way when you do go to the doctor you can explain exactly why you have the concerns you do have and you can work as a partner in your health journey."

You always look great in photos! On the one hand I want to know how you manage it, but on the other hand how do you cope with the comments of “but you don’t look sick!” when you don’t feel good?

Christine: "Well, thanks for the compliment... I guess lip gloss and blush go a long way! But seriously, I find that if you look good, you feel good. So when I can, I do try to do something, even if it is one thing, to make myself look better. I can be in pyjamas, on bed rest, but sometimes I will smack a little lip gloss on. Even when I lost my hair due to illness, I found funky hats, and fun wigs to wear. You have to be positive or you can really drowned in depression due to these illnesses. When I was stuck in the hospital for 2 weeks with my last pregnancy I wore funny polka dot pajamas every day! Even if all you can do is brush your teeth or put your hair in a headband, sometimes it is the smallest thing that just might perk you up."

I know you were diagnosed with Lupus in your teens and you’re still a young woman. Have you got any advice for someone young who is coming to terms with having a condition for life?

Christine: "I was diagnosed at 15, and I am now 30. I have officially had lupus for half my life. That was a hard thought to come to terms with. I know can say I can hardly remember life without lupus. The hardest thing I ever had to deal with is the thought that this might not go away. I think it is still something I struggle with every day. At times when I found it hard to deal with, I participated in my local support groups. I thank god that I am blessed with a great support system in my family and friends. I also have great support from the online friends I have met through butyoudontlooksick.com. My advice would be to reach out and talk to others with the same issues. Keep the lines of communication open."

In the time that ButYouDontLookSick.com has been running, the community there has been delighted to see you get married and then, last year, to have your baby Olivia. Has having Lupus and Fibro affected your relationships? How do you cope?

Christine: "Yes, I have had a busy few years! A new marriage, a new house, a new baby! All good things, but they all took their toll. I would love to say that I breezed through it all, but I didn’t. There were bad days, and hospitalizations, along the way. But I would never change a thing. It is all about choices. I was on bed rest for most of my pregnancy, but my precious baby girl has made it all worth it. My marriage is wonderful and I love my husband, but we work at it. We have made our marriage a priority. We have learned to have dates even if they are movies on the couch when I don’t feel well. When we moved we learned to ask for help, since I couldn’t lift boxes etc. It is all about balance."

As well as running the message boards at ButYouDonLookSick.com and making sure the e-magazine has daily content, you also volunteer for the Lupus Alliance and were recently honoured for your work for them. What drives you to spend so much time helping others?

Christine: "I am very passionate about helping others who live with lupus or other chronic conditions. I feel that when I was younger there were not as many resources out there to help. I always had this desire to help, but when I had my daughter Olivia, it renewed my spirit. I want her to not have to take care of me. I want to teach her that philanthropy is something we all should incorporate in our daily lives. We can all help each other so much. Even with small little random acts of kindness, or by helping with big fundraisers. We can all do something."

And finally, it’s what ButYouDontLookSick.com is all about, so do you have any tips for living life to the fullest with a chronic condition?

Christine: "1. Be as positive as possible. Of course having lupus or any other disease sucks! but try your best to be as positive as possible. Not only is your attitude contagious, but it also does effect your overall health. There is definately a mind / body connection.

2. Network. Whether it is talking with your doctor, support groups, going online, etc. Do your research and be an active participant in your health. Find other patients who are taking the same medications, or dealing with the same symptoms. Learn as much as possible.

3. Follow your dreams, but learn to adapt. Do not ever think that just because you are sick, that you have to cancel all those dreams and plans you had for your life. You might have to change, edit, or alter them but you can still be involved in whatever passions you had before. I loved to write, when my hands hurt, I talk into a tape recorder. For those who like to do sports, maybe you can coach, or still go to games as a hobby. These are just examples, but if you learn to adapt, you can participate in a lot of the things you loved before you got sick, just differently."

Many thanks to Christine for participating. For more information, see ButYouDontLookSick.com

Research articles from June

Tue, 01 Jul 2008 12:00:00 +0100

Some of the most interesting research relevant to Fibromyalgia Syndrome (Fibro) that has been published over the last month and discussed in the FibroAction Research section is summarised here.

Fibromyalgia and normalising behaviours

At the end of May, FibroAction discussed a study that suggested Fibro patients may not seek help to manage their symptoms because the symptoms seem normal to them. A problem with invisible illnesses, such as Fibro, which have no outward sign of illness, is that even the patient can doubt whether the symptoms are really there. Fibro patients may also try to lead a normal life for some time after the onset of the condition, maintaining careers, relationships and lifestyles as far as possible for as long as they physically can, despite the immense struggle this can be. According to the study, this "normalization" contributes to Fibro patients not seeking medical attention.

The role of central dopamine

Dr Patrick Wood MD had an article published in which he discusses the role of the neurotransmitter dopamine in pain and analgesia. Dr Wood is a respected authority on the cause and treatment of Fibro and the originator of the Dopamine Theory of Fibromyalgia. He spearheaded the use of advanced imaging technologies to investigate fundamental changes within the central nervous system relating to Fibro. In the article, Dr Wood says that dopamine has an important role within the brain in dealing with how our brains perceive pain and also with natural pain-relief. Studies carried out by Dr Wood and his colleagues in the past have shown that people with Fibro have both reduced dopamine activity in the central nervous system and an abnormal response to pain, where dopamine is not released in response to pain, meaning that pain stimuli are felt as being more painful. Dr Wood says that several new classes of medication with analgesic properties have an effect on dopamine. The role of dopamine in Fibro, the potential treatments relating to that and the knowledge that is being discovered in these studies is extremely exciting and could lead to more effective use of medications to treat Fibro. Some doctors are already using medications that affect dopamine - such as Acupan (Nefopam) and Mirapex (Pramipexole) to treat Fibro, with a promising level of success.

City of Hope Fibro Study

Preliminary results from the City of Hope Fibromyalgia Study were e-published this month. The "City of Hope Fibromyalgia Study" is a three-year investigation taking place at City of Hope Hospital in California, USA, involving patients of Dr R Paul St Amand, the originator of the Guaifenesin Protocol for Fibro. The purpose of the City of Hope study is to look for links between Fibro and autoimmune, inflammatory and genetic factors. The study found that people with Fibro, whether they were on the Guaifenesin protocol or not, had high levels of substances that are usually associated with autoimmune and inflammatory conditions, suggesting that they may be an inflammatory or autoimmune connection with Fibro. Family members of the Fibro patients also had raised levels of some of these substances, suggesting that Fibro might have a family or genetic link. Dr St Amand has suggested that the particularly raised levels of one of the immune system substances found in the patients on the Guaifenesin Protocol may be of significance for the validity of the Guaifenesin Protocol. However, there were some flaws in the study and possibly in the conclusions drawn. The study remains a very interesting piece of research, but its significance may unfortunately be diluted by the flaws in the study and its significance to proponents of the Guaifenesin Protocol as evidence of the protocol is debatable.

Fibrofog mimics 20 years of aging

An article has been published recently suggesting that the cognitive problems associated with Fibrofog mimic around 20 years of aging. The article says that the difficulties with memory and concentration associated with "Fibrofog" have been shown in studies, and that the problems associated with Fibro with specific types of memory mimic the effects of around 20 years of aging. According to the article, the cognitive difficulties associated with Fibro may be exacerbated by the presence of depression, anxiety, sleep problems, hormonal disturbances and pain.

Sleep disturbances and Fibro

A recent article discusses a study that looked at the relationship between sleep problems, pain, depression, and physical functioning in Fibro patients. The study highlights how often Fibro patients have sleep problems and it also suggests that, over a period of 1 year, poor sleep could contribute to more pain, more pain could contribute to poorer physical functioning, and poorer physical functioning could contribute to depression. It is often thought that many Fibro patients have symptoms of depression, but it is not always considered whether problems due to the Fibro were the direct cause of the depression. This study suggests that this is so, corroborating many anecdotal reports that depression is a result of Fibro.

Becoming an Expert Patient

Mon, 21 Jul 2008 12:00:00 +0100

This is the first in a series of articles on Becoming an Expert Patient.

In this series we will look at a number of topics that should help with any Fibromite's journey towards becoming an expert patient.

Topics covered will include:

1. Why Become an Expert Patient?

2. Knowing your Diagnosis

3. Dealing with Doctors

4. Medications and staying in control

5. Listening to your Body

6. Helping yourself

7. The importance of looking after your Mental Health

8. Personal relationships

9. Being proactive

Why Become an Expert Patient?

Expert patients are patients who are expert in their own condition and how it affects them.

Patients are in charge of their own healthcare and have to make decisions, so it is good to be well informed.

Expert patients have better health outcomes.

Expert patients are more likely to take control of their health.

First of all, what is an expert patient?

An expert patient is a patient who is expert in their own condition and how it affects them. They do not need to be an expert in their condition as it may affect anyone, but are experts on their own bodies.

A patient expert is someone who is an expert on a subject, but also happens to be a patient, such as renowned author and Fibro and Myofascial Pain patient expert, Devin Starlanyl MD.

Why would anyone want or need to become an expert patient?

Well, however good your doctor is, they have one major disadvantage: they cannot be inside your body, feeling what you feel. Healthcare professionals in general, whether they are GPs, consultants, nurses or pharmacists, also see many different patients and they cannot always be concentrating on you. They cannot follow you around all day and check just how and when you take your medications and exercise. Only you know all this.

The other side to the argument for becoming an expert patient is that the patient is in charge of their own healthcare. In the UK, we have a history of thinking "doctor knows best", but even with the best doctor in the world, there wil come a time where you have to make decisions. Which hospital do you go to? Do you try this more effective medication even though the side effect risks are higher? Do you have this procedure or that? Do you assume your doctor is right or get a second opinion? Anyone receiving healthcare will have to make decisions at some point and if you are not informed, if you are not an expert patient, then this can be extremely difficult.

Expert patients are also known to have better health outcomes. They are more likely to follow a treatment regime, whether it's medications, exercise or lifestyle changes, because they will have had input into its choice and will have a better understanding of why the treatment was chosen. They are more likely to get accurate diagnoses as they do sit quietly back and wait for something to be obvious to all. They are more likely to pick up on prescribing errors, both interactions between medications or conditions and genuine dispensing mistakes by a chemist. They also feel more in control of their health, making them less likely to suffer from depression and anxiety.

Getting to know Rosalind Joffe

Sun, 27 Jul 2008 12:00:00 +0100

Rosalind Joffe is author of the popular blog, ‘Working With Chronic Illness’, and co-author of the blog ‘Keep Working Girlfriend’. She founded the career coaching practice, cicoach.com, building on her experiences living and working with MS and ulcerative colitis, and is dedicated to helping others with chronic illness develop the skills they need to succeed in the workplace.

Together with her ‘Keep Working Girlfriend’ blog co-author, Joan Friedlander, Rosalind has written a book ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’, which encourages women with chronic illness to stay employed to preserve their independence and sense of self, and helps teach them the knowledge and skills they need to do so. In the book, Fibromyalgia Syndrome (Fibro) is included along with autoimmune conditions such as Lupus and Rheumatoid Arthritis, as the impact and variable nature of the conditions are very similar.

FibroAction founder, Lindsey Middlemiss, herself a blogger, here takes the opportunity to interview Rosalind and find out a bit more about her, her job and her book.

Lindsey: Hi Rosalind, thanks for letting me interview you. First of all, congratulations on a great book: I really enjoyed reading it!

I'm delighted that you found the book useful. I can honestly say that writing it was a fantastic experience for me. I found writing a book, however, much more difficult than I'd imagined. I'd been writing newsletters for years and published several short booklets and that fooled me. I had no idea of how much more complex a book would be.

Lindsey: What does an executive career coach actually do? I think it is a role more common in the US, but it sounds like something I could have used in the past!

There are several parts to that answer. First as a career coach, my role is to help a person develop the competencies he or she needs to be more successful on the job. Sometimes that means in their current job. Sometimes it means finding a new job or even a new career. As a career coach for people who live with chronic illness, it inevitably includes a clear assessment regarding how the illness impacts their ability to do that job so a person can make the best decisions looking ahead. It often includes working on how you talk about symptoms, accommodations and the other issues that come up when you live with unpredictable and debilitating health. We also work on how to use your networks to get a new job, how to assess an organizational or job fit and so on - all with chronic illness as the backdrop to these decisions. I've developed a home study program that's a compendium to my book and it's called 'The Working with Chronic illness Workbook' - it's on my website, cicoach.com. It includes many of these assessments. But I do want to clarify that although I was an executive coach at one time, I don't classify myself as an executive career coach because I work with anyone who cares about work as a career. That's why my tagline is: The resource for professionals who live with chronic illness.

Lindsey: Do you work with clients in person, or can your role be performed with email and telephone?

Rosalind: All of my work is on the phone. I find that's most efficient (many coaches work that way) and it also saves my clients energy. Furthermore, I have clients all over the world so face to face wouldn't be a good business model here.

Lindsey: Many people with chronic illness really struggle at work: I know I have done and I’m sure many readers are thinking that work is not good for their health and maybe they shouldn’t be working. You obviously feel very strongly that women with chronic illness should be able to keep working – and should keep working. It’s something that you discuss from a number of different angles in ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’, but can you summarise why you think this is so important?

Rosalind: Well, to begin with, as we say in the book, when you stop working, you become financially vulnerable, unless you're independently wealthy. Even if you have a spouse or parents to support you, you're relyling on others and that leaves many people feeling vulnerable and hurts their self esteem. And illness leaves you feeling vulnerable enough - and lowers your self esteem. Unemployment usually compounds those negative feelings. Then, there is the social and emotional feedback we get from working that you lose when you're unemployed. Most of us have had jobs in which we felt we'd rather be anywhere than here, but it's easy to forget how long a day can be when you're unemployed. Especially if you're under 60 and most of the people around you are at work. Also, no doubt, work can be a burden but it can also be a distraction.

That said, I had two children and was so sick with ulcerative colitis that I couldn't work for two years and could barely get out of bed to get them to school. So I know that there are times when you just can't work. And there are jobs that are so 'toxic' that they are bad for you. Finally there are some people who don't easily fit into the "working world" and perhaps they wouldn't have been happy being employed (or self employed) regardless of their health. The book was written for people who want to keep working - to encourage them because there are many factors that make it so difficult, particularly for women.

Lindsey: Do you feel that finding something you love doing is more important in choosing a career when you have a chronic illness?

Rosalind: Interesting question. First I think we have to talk about the economics. Some people simply feel that they can't afford to look for work they love while trying to pay the bills - and that's a reality. But if you have the opportunity and the space in your life to focus on finding work that you really enjoy or are passionate about, I'd be hard pressed to argue that it wouldn't be a smart thing to pursue. Living with a chronic illness is tough - physically and mentally. If you're spending your days doing tasks that are enjoyable in a rewarding environment, that's one less hurdle and it can be a great distraction.

Lindsey: In your experience, does working for a large company, a small business or self-employed best suit more women with chronic illness? Or is it entirely individual and if so, are there traits that you pick out that let you know that a certain work environment is likely to be better for someone?

Rosalind: There are pros and cons to each. Large companies can offer you great benefits and sometimes can offer the most opportunities for reinventing yourself. But they can also be inflexible because they need to be bureacratic. Small companies get to know who you are and often will be more loyal to individuals when times get tough - if they can afford it. But they can also be limited in terms of career advancement and benefits. Self employment gives you the benefit of not having a boss or anyone to answer to - obviously it offers schedule and occupational flexbility. But it can isoltating and there's no fall back system when you get sick.

Regardless of where you are, I suggest that anyone with chronic illness look for an environment that offers maximum flexibility. This is generally reflected the mission and culture of the organization. I also think that you have to look for an organization that respects a worker's limits - in terms of hours. That's particularly a problem in the US where working more hours than the job description is considered normal.

Lindsey: ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’ is mainly aimed at people who are already employed in some way. Do you have any tips for someone with a chronic illness who stopped working because of their health, but has not had a positive experience of being unemployed and would like to get work again, but does not know where to start as their health problems are still there?

Rosalind: Both Joan and I know people with chronic illness often have to look for jobs, probably more than the healthy population. We certainly did. But we decided at the outset that the book could be informative and inspiring - some 'tips". But the situation you describe requires developing new competencies for yourself. That's what I do with my clients. And that why I created my Workbook - it's filled with assessments and excersises for looking for a job. But, since you asked, I can offer a place to start. Figure out what you CAN do - do a self assessment of your skills, talents and interests and, your debilitating symptoms that wax and wane. Then seek friends and colleagues who know and value you to brainstorm with you so you can get out of limited thinking. Finally, be really honest with yourself about your capabilities and limitations so you can find work that you can do for the long haul. Most importantly, decide if it's necessary to ask for accommodations - and if you can do a particular job successfully, because if you can't, you won't be there long.

Lindsey: In ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’ your co-author Joan discusses the importance of getting a good work-life balance. Can you share with us some of the things you like to do outside of work?

Rosalind: I love spending rainy weekends watching movies on dvd at home with my husband - and reading novels. We've grown to be fans of opera and listen and go to that - but I like all music and find it both fun and relaxing. I've always loved to cook very complex dishes and love cooking for family and friends but when I'm tired and not well, standing is tough so as the years have gone on, I just do simpler and less. Also this is one hobby that that my business has impacted - just don't have as much time. I loved gardening but as the years go on, I'm also less willing to live with the pain after hours of bending. I exercise daily - long walks with our dog, pilates and strength training. I used to meditate but in the past few years, I spend more time doing a technique called Focusing. I've gotten into kayaking in the past few years and find that's something that I can usually do regardless of how I feel. And finally, I spend a lot of time with people I love - my husband and grown daughters, extended family and good friends. That gives me the best "juice" of all.

Thank you to Rosalind for this interview. For more information on ‘Women, Work and AutoImmune Disease: Keep Working Girlfriend’, see Rosalind's website, cicoach.com.

Becoming an Expert Patient Article 2

Mon, 28 Jul 2008 12:00:00 +0100

Knowing Your Diagnosis

Before you can become an expert patients, a patient who is expert in their own condition and how it affects them, you need to know what your condition is. You need to know your diagnosis.

There are essentially 3 parts to knowing your diagnosis with Fibromyalgia Syndrome (Fibro):

Making sure as far as posible that you have the correct diagnosis.
Identifying which symptoms are Fibro, and which are due to other conditions you may have.
Finding out what Fibro is.

Correct Diagnosis?

Very few doctors have received any training at all in the recognition and diagnosis of Fibro, and little more have kept up-to-date with current knowledge of the condition. It is therefore not all that surprising that mis-diagnoses are made.

Fibro is only a "wastebasket" diagnosis when doctors use it as such, giving the diagnosis to the patient because they simply do not know what it is wrong. If there is a possibility that you could have something other than Fibro, it should be tested for, but this can be difficult on the NHS.

Because of the lack of training given to doctors about Fibro, it can be hard for doctors to diagnose the condition based on recognising the symptoms and performing a tender point test, which is how Fibro currently has to be diagnosed. For more information on the diagnosis of Fibro, see the About Fibro section of the website.

Another major problem in ensuring you have the correct diagnosis is that having Fibro doesn't stop you from having anything else. In fact, having many other chronic conditions would make it more likely that you would develop Fibro and it is possible that you had something else first, even if it was diagnosed later.

It is very important that both you and your healthcare team keep this is mind and do not assume that all symptoms are down to the Fibro and stop doing investigative procedures because a diagnosis of Fibro has been made. Any new symptom should be checked out with your doctor, possibly with tests being run and even referrals made, and any major new symptom should be checked out as well as it would be if you didn't have Fibro. You may have developed another condition on top of the Fibro.

There are also a number of conditions that may be hard to diagnose from tests, especially early on in the disease process, and conditions such as Rheumatoid Arthritis and Systemic Lupus may get easier to diagnose with the passage of time. Conditions that can be tested for but are not appearing on blood tests are described as being "sero-negative". It is common sense that, if your symptoms worsen significantly, if you develop new symptoms or if you show signs of something not quite like Fibro, that tests - a blood test panel at least - should be run, which may pick up on developing conditions other than Fibro that could not have been picked up on before. If you have a family history of other conditions, such as Systemic Lupus or Rheumatoid Arthritis, then it is especially important that you check that you are not developing these conditions too.

Some of the tests used are known to be inaccurate and so should only be used as an aid to making decisions anyway. The Rheumatoid Factor blood test, for example, which is used to test for Rheumatoid Arthritis and Systemic Lupus, is notoriously inaccurate and a negative result does not mean that you cannot have either of those conditions. Although blood tests are extremely useful diagnostic tools, they are not perfect and if you are showing signs and symptoms of something else going on, this should be investigated fully, even if the blood tests do not show anything.

There are also conditions other than Fibro which can cause similar or overlapping symptoms and do not appear in standard blood tests, but which may be picked up if a physical exam is done by a knowledgeable healthcare professional. Hypermobility Syndrome and Myofascial Pain Syndrome are 2 examples.

There are certain signs and symptoms that could suggest something other than, or as well as, Fibro may be going on. Examples include:

Regional symptoms. Fibro pain is characterised by being widespread and unpredictable. If you have pain that is localised and predictable, then that may mean you have a specific problem causing the localised pain. Some regional pain conditions, such as tendonitis or myofascial trigger points, can be symptoms of Fibro themselves, but they often need a different approach to treatment than the Fibro itself. Other regional pain conditions, such as degenerative spinal discs, can exist alongside Fibro.

Inflammation, whether noticeable in yourself, or showing up in the blood tests ESR and CRP. Responding well to treatment with corticosteroids, which are not recommended for Fibro (as stated in the EULAR recommendations for the management of Fibro) is often a sign of inflammation as these medications work by reducing inflammation. Some patients find that their pain and fatigue improve dramatically when given corticosteroids, such as Prednisolone, for other problems such as allergic reactions and this is usually a sign that something other than Fibro is going on.

Vision problems. Although Fibro may be associated with easily tiring eyes that find it harder to focus because of tired muscles, actual vision loss is not a symptom of Fibro. Having regular eye check-ups is a good idea for anyone, and as well as helping to pick up on eye problems, the eye check-ups can be helpful as eye problems may be a symptom of something more general that could be having an impact on your overall symptoms. Glaucoma is associated with Stage II Diabetes for instance, which also has fatigue as a possible symptom, and Multiple Sclerosis can cause vision problems as well as pain and fatigue.

Positive test results! Fibro does not show up on any standard blood tests, so any positive results may mean that something else is going on. At the very least these should be monitored.

Learning about your test results is an extremely effective way of staying in control of your healthcare. Some doctors do not immediately tell patients they have had positive test results because they do not think that they are significant, but it is good to make sure that you know what is going on. When you get sent for blood tests, write down a list of which tests the doctor has checked on the form so that you can look them up. When the results come back, you can ask your doctor for a copy of the actual results so as to keep your own record and make sure that when the doctor says "they're fine", they actually mean all the tests had negative results. Websites such as medicinenet.com and labtestsonline.org can be very useful in looking up what tests are for and what the results mean.

Which symptoms are what?

It can be extremely hard to work out what symptoms are Fibro and what symptoms are other conditions, even if they are themselves caused by the Fibro, but doing so enables you to tailor your treatments effectively. The task of working out which symptom is what is made even harder by the long list of symptoms of Fibro available on the internet that include the symptoms of all possible secondary conditions too.

Often the best way to learn to tell which symptoms are what is by noting what happens when you take or use an effective treatment for one condition or one part of your condition. If myofascial release massage relieves your headaches and the weakness in your arms, for example, then you can learn that these symptoms may be due to this rather than the Fibro itself and get treatment accordingly. If you have an inflammatory condition as well as Fibro, then corticosteroids will help the inflammatory condition, but not the Fibro.

What is Fibro?

Many people come away from being diagnosed with Fibro without much of an idea what the condition is. Finding out details can sometimes take patients years and often required them to see a Fibro expert of some kind.

It is generally agreed that the condition develops, often after a trigger event or series of events, and changes how the brain and central nervous system work, which then leads to further changes in the central nervous system. These changes disrupt levels of various neurochemicals, which then cause many of the symptoms, as well as leading to more disruption of the central nervous system. How the central nervous system processes pain is a key part of Fibro, and it is generally agreed that Fibro is a central processing disorder, sometimes called a central sensitisation syndrome because the changes mean the central nervous system becomes overly sensitive.

For example, raised levels of the chemical substance P, which helps transmit pain signals, contributes to you feeling pain when you shouldn't and feeling more pain than you should from painful stimuli. Low levels of available dopamine contribute to or cause many of the symptoms of Fibro, affecting movement, cognitive function, mood, sleep and pain. Dysregulation of the HPA (hypothalamic-pituitary-adrenal) axis affects your reactions to stress, as well as disrupting digestion, mood, and energy usage. Reduced availability of opioid receptors in the brain means that opioid medications are less effective. These are just some examples of what is happening with Fibro.

Next in the series of articles on Becoming an Expert Patient will be Dealing With Doctors.

Research articles from July

Fri, 01 Aug 2008 12:00:00 +0100

Some of the most interesting research relevant to Fibromyalgia Syndrome (Fibro) that has been published over the last month and discussed in the FibroAction Research section is summarised here.

Online Group Lurkers may not get the most benefit

If you go to an online support group but "lurk" rather than participating, it may be preventing you from getting the most benefit out of the group, according to the recently published results of a Dutch study. The researchers found that lurkers were significantly less satisfied with online support groups compared to posters and that their social well-being wasn't enhanced.

GPs can treat Fibro just as well as consultants

A recently published study compared how effective the treatment of Fibro was that was available in both primary care - the healthcare provided at GP surgeries for example - and specialised settings - such as with hospital consultants - as well as looking at things that helped to improve how well patients did. The researchers found that the treatments used in the studies were mostly effective, but that patients treated in specialised settings did not get noticeably more efficient treatments compared to those patients that just saw GPs.

Another aspect of Fibrofog measured

People with Fibro have trouble reading words and naming colours quickly, according to a recently published article. This is yet another aspect of the problems with thinking, nicknamed "Fibrofog", experienced by Fibro patients, that has actually been measured. The researchers studied people with Fibro and memory problems and people who had memory problems but not Fibro and got them to do 10 timed tasks designed to measure various aspects of how fast their brains worked. They found that people with Fibro were especially slow at reading words and naming colours, but did okay at the other taks.

Becoming an Expert Patient Article 3

Mon, 11 Aug 2008 12:00:00 +0100

Dealing with Doctors

Something many people with Fibromyalgia Syndrome (Fibro) find difficult is working out how to best deal with doctors. Establishing a good working relationship with your healthcare team is often a crucial part of getting control of your condition and keeping control of it.

Getting a good healthcare team that you can work with may involve:

Finding a doctor or doctors, and other healthcare professionals, that you can work with.
Understanding the doctor (or other healthcare professional) - patient relationship.
Learning how to talk to and deal with doctors and other healthcare professionals.

Finding a Healthcare Team

"Healthcare team" is a phrase not often used in the UK, but many people with Fibro need a multidisciplinary approach to best get control of the condition and this requires a healthcare team rather than just one doctor. Personal recommendation is extremely useful when finding a healthcare team for Fibro as so few people are really specialised in it. If you have a doctor or other healthcare professional who has a good understanding of, and actually treats, Fibro, then recommend them for the FibroAction Recommended Healthcare Professionals list.

Although your GP may refer you for various other treatments and forms of assistance, patients often need to push to get referrals and, with the funding limits of the NHS in the UK, many people with Fibro end up using some kind of private healthcare. As an expert patient, you will need to learn how to find a healthcare team yourself: you can't expect that the best healthcare team will always be found for you.

Tips for finding a healthcare team:

Get personal recommendations. Local support groups may know of Fibro-friendly GPs and other healthcare professionals in your local area, as well as recommended specialists within reach. Or check out the FibroAction Recommended Healthcare Professionals list.
Finding a GP you can work with is usually the first step and they do not need to have much specialist knowledge of Fibro, as long as they are willing to learn and to accept suggestion, such as from specialists or from reputable information sources.
The NHS Choices website can help you find NHS GPs and hospitals in your area.
The Yellow Pages will have local GP surgeries and complementary therapy clinics/centres and practitioners listed.
Try to find healthcare professionals you have an interest in Fibro, even if they don't have specialised knowledge. Ask if any of the doctors or practitioners at a surgery or clinics/centres has an interest in Fibro. When you first meet, ask them about Fibro to judge their level of knowledge and attitude towards the condition.
Check the qualifications of all complementary healthcare professionals, as well as how long they have been practising. The internet can be extremely useful in finding out what letters after someone's name mean and you may find the qualifications are not relevant to the service they provide.
Ask for referrals, don't wait to offered them - or not offered them.
Remember that the NHS Choose and Book system now means that patients referred to see a specialist are able to choose where they are treated from any hospital that meets NHS standards, which includes many private hospitals as well as all NHS providers. So you can now choose, for example, to go to the NHS FM Clinic at Guy's and St Thomas' Hospital in London instead of your local hospital.
Find out what is available to you on the NHS or through social services. Physiotherapy, hydrotherapy, counselling and nutritionists may be available on the NHS: check with your GP. Occupational therapy and exercise programs may be available through your local social services, but again your GP should know of such schemes if you ask.
Remember that going private is an option in many cases, whether this is private doctors, private physiotherapists, or complementary therapists.

Understanding the Doctor - Patient Relationship

You, the patient, are in charge of your healthcare. This is something that many patients in the UK often forget because of a culture of "doctor knows best". If you are unsure about a treatment, you have the right to ask for more details, to have an input into what treatments are chosen and how you take them, and also to veto treatments. If the doctor (or other healthcare professional) isn't prepared to listen to you and address any concerns, then you may not be able to have a good working relationship with them. You need to have this two-way relationship, otherwise you could end up risking your health in some way, by either stopping seeing a healthcare professional that could help, by not following their instructions (e.g. not taking medications they have prescribed, which can be dangerous as they will assume you are taking them) or by being stressed by following a healthcare regime of some kind that you are not comfortable with.

The optimum management of Fibro often requires a multidisciplinary approach that includes lifestyle adaptations and support or complementary therapies such as physiotherapy and counselling, as well as medications. It is extremely unlikely that you will be able to take one pill and have all your symptoms go away. Managing Fibro can be extremely difficult and many patients struggle to carry out their treatment and management plan. However, it is important that you remember that what you do can have a real impact on your health and how effective your healthcare team can be. If your healthcare team prescribes a treatment plan, whether it is medications, exercises, lifestyle adaptations, counselling or dietary changes, it is your responsibility to carry out the plan. If you expect your healthcare team to do their best to control your Fibro, then it is only fair that you acknowledge that you have some responsibility too.

Specialists are specialist. In the UK, we so often see our GPs instead of specialist doctors that it can be easy to forget that most doctors are not general doctors. If you see a specialist, then don't expect them to be able to work outside their speciality. This is especially important with Fibro because it can cover so many medical disciplines and need input from so many different therapists as well: remember that the perfect multi-disciplinary clinic for Fibro is unlikely to exist. Even if you see a doctor that has specialised in Fibro, they are unlikely to be specialists in gastroenterology, cardiology, gynaecology, counselling and physical therapies, but these specialities are some that may be needed for Fibro. On the other hand, because of a doctor's specialism, especially if they are specialised in Fibro which most doctors will have had no training in, what they suggest may be surprising to your GP. This can be disconcerting, but remember that you see a specialist for their specialist knowledge: if your GP knew all that, then you wouldn't need to see a specialist.

Doctors are not infallible and you shouldn't expect them to be so. It is important to remember, for a number of reasons, that doctors are only human and that they may err in a number of ways. Doctors, like the rest of us, can have bad days and make mistakes; they do not know everything and do not get on well with everyone - no-one does.

Doctors and other healthcare professionals need your input as no-one knows your body as well as you do. You are more likely than any doctor or healthcare professional to remember any allergies or intolerances, the details of past experiences with medications and treatments and your whole medical history. And only you can know how any treatment makes you feel.

Things to remember about the Doctor - Patient Relationship:

You, the patient, are in charge of your healthcare.
If you expect your healthcare team to do their best for you, then do your best for yourself as well.
Specialists are specialised.
Doctors are not infallible - don't expect them to be so.
Healthcare professionals need your input as no-one knows you like you do.

Talking to & Dealing with Doctors

Doctors are busy people. If you know that you have a lot to discuss with your doctor, then ask when booking the appointment if you can have a double appointment or can have the last appointment of the morning or afternoon when it will be less rushed. Make sure you are prepared for your appointment and know what you want to ask (a list for yourself may help with memory): if you cannot remember everything you wanted to ask, the doctor is unlikely to have time enough to sit and wait. Also do not turn up to your appointment with pages and pages of information printed out from the internet or journals that you want the doctor to read: they are unlikely to have the time. If you find information you want them to consider, then note down the main points and where they came from.

Remember that doctors and many healthcare professionals are only going to be interested in reputable information sources. The gold-standard of evidence in medicine is being able to back up any statement, especially as regards treatments, with multiple double-blind placebo-controlled scientific trials. Peer-reviewed medical journals (such as those that appear on PubMed) are considered reputable sources of information, as are NHS publications, national charities and some other internet sources such as netdoctor.co.uk, although these may not always have accurate information. If you find some information on the internet that you want to discuss with a healthcare professional, specify where you found it, rather than just just saying you got it off the internet.

Some doctors like lists to be given to them, others don't. It can be helpful, especially at new appointments, to take a list of all your symptoms, what tests you have had done and when and what medications and treatments you have tried. However, don't insist that the doctor takes this. They may get you to fill in a questionnaire that goes through those points anyway, or they may prefer to ask you questions and make their own notes, but in either case, your lists can help your memory.

Taking someone along to appointments, especially at first, can be very helpful, but taking too many people along can make the appointment confusing and in some cases the doctor may want to talk to you without your companion - for example, if asking about family stresses, they may prefer for your spouse to not be in the room. You need to be able to concentrate on the appointment, so taking children along can be an issue. Remember that you can always ask for a nurse or other staff member to be present if you are uncomfortable.

Try and stay calm when talking to healthcare professionals. Although seeing you in tears may help them to realise how badly you are doing, shouting rarely helps. Showing healthcare professionals respect can mean they are more likely to show you respect.

Learn how to talk about your symptoms. If a healthcare professional asks you to describe your pain, then saying "it hurts" doesn't help them to work out what sort of pain it is. Use descriptive words, such as burning, stabbing, aching, agonising, etc for pain, and learn to work out how to separate your symptoms so as to describe them - if you are getting migraines or headaches for example, then make sure you mention this instead of just saying "everything hurts" as specific treatment may be of more use than painkillers.

Tips for talking to & dealing with doctors:

Doctors are busy people. Learn how to work around this.
Remember that doctors and many healthcare professionals are only going to be interested in reputable information sources.
Some doctors like lists to be given to them, others don't, but they may still be of use to you.
Taking someone along to appointments, especially at first, can be very helpful, but do not overdo this.
Try and stay calm when talking to healthcare professionals. If you show them respect, they are more likely to show you respect.
Learn how to talk about your symptoms.

Top Ten Supplements for CFS and Fibro

Sun, 17 Aug 2008 12:00:00 +0100

Many Fibromyalgia Syndrome (Fibro) patients try nutritional supplements in order to try and control their symptoms, but it can be confusing as to where to start when so many supplements are available. Dr Jacob Teitelbaum wrote an article for his newsletter last year, answering a common question - "Could you list the top ten supplements you would consider a priority?" - and he has kindly given us permission to reprint this.

The notes in italics are FibroAction's notes, not Dr Teitelbaum's.

Dr Teitelbaum's Top Ten Supplements for Chronic Fatigue Syndrome (CFS) and Fibro (note that not all of these supplements are suitable for all Fibro patients):

Nutritional Treatments

1. Energy Revitalization System - vitamin powder - - ½-1 scoop a day (as feels best) blended with milk, water or yogurt with 1 capsule of the included Daily Energy B-Complex (also available separately). If gas or stomach upset occurs, mix the powder with milk and/or start with a lower dose and work your way up to the dose that feels best or divide the daily dose into smaller doses and take 2-3 times a day. These products are made by Enzymatic Therapies and are available from our web site at www.Vitality101.com and most health food stores (in the USA). One drink and 1 capsule replaces over 35 tablets worth of supplements. They include, among others: vitamins A, B1, B2, B6, B12, C, D and E; Magnesium; Zinc; Manganese; Malic Acid; Inulin (a fibre supplement sometimes used for IBS); Folic Acid; and 19 different Amino Acids..

2. D-Ribose (Corvalen) - 1 scoop of powder 3x day for 3 weeks, then 2x day. If too energizing, take with milk or food or lower the dose. Effects are usually seen within 2-3 weeks. D-ribose is a "simple sugar" supplement that can be used to combat fatigue. Dr Teitelbaum recommends the Corvalen brand as some of the D-Ribose supplements on the market are inferior quality.

Sleep

3. Revitalizing Sleep Formula (Enzymatic Therapies & Integrative Therapeutics) - Valerian 200 mg, Passion Flower 90 mg, L-Theanine 50 mg, Hops 30 mg, Piscidia 12 mg and Wild Lettuce 28 mg. Take 2-4 capsules each night 30 to 90 minutes before bedtime. It can also be used during the day for anxiety. If Valerian energizes you (occurs in 5-10% of people) use the other components. It is also excellent for anxiety. Do not take more than 8 capsules a day. These components are also available in a number of other supplements - ask at your pharmacy or health food store.

Anti-Yeast Treatments

4. Acidophilus Milk Bacteria - Acidophilus 'Pearls' form (by Enzymatic Therapy/ Phyto Pharmica). Take 2 twice a day for 5 months. Then consider 1 a day to help maintain a healthy bowel. Do not take within 6 hours of taking an antibiotic (e.g., take it midday, if you take the antibiotic morning and night). The Enzymatic Therapy/Integrative Therapeutics Acidophilus or Probiotic Pearls form contains approximately 2.8 billion units per pearl - even though box says only 1 billion. I use only this brand, as in many other brands the bacteria are not viable. Similar supplements are also available at good healthfood stores - check the number of bacteria listed and ask about viability.

5. Anti-Yeast (Ultraceuticals) - An excellent natural antifungal mix. Take 2 twice a day for 3-5 months. This product contains a number of supplements used to combat yeast infections, including, among others: Coconut Oil (50% Capryllic Acid); Oregano Powder Extract; Garlic Powder (deodorized); Grapefruit Seed Extract; Milk Thistle Extract; and Olive Leaf Extract.

Hormonal Support

6. Adrenal Stress End (Enzymatic Therapies or Integrative Therapeutics) - Take 1-2 capsules each morning (or 1-2 in the morning and 1 at noon). Take less or take with food if it upsets your stomach. This product contains a number of vitamins and amino acids, as well as hormonal supplements.

7. BMR Complex (Standard Process) - 1 tablet is the approximate equivalent of 15 mg Armour Thyroid (a prescription hormonal supplement). Take 1 tablet 3 times a day. If natural prescription Armour Thyroid is available I would use that instead.

For Pain

8. End Pain by Enzymatic Therapy or EndFatigue Pain Formula by ITI- Developed by Dr Teitelbaum. Contains Willow Bark, Boswellia, and Cherry. Take 2-4 tabs 3x day. It takes 2-6 weeks to see the full effect. At that time, you can often lower the dose to 1 tab 3x day or 2 twice a day. This product is designed to have an anti-inflammatory effect, that may be more suitable if you have widespread myofascial pain (or another condition) on top of the Fibro itself.

For Chronic Sinusitis/Nasal Congestion (If Present)

9. Silver Nose Spray - 5-10 sprays in each nostril three times a day for 7-14 days until the sinusitis resolves. If your doctor will prescribe it, I strongly recommend the "Sinusitis Nose Spray."

10. The above 9 are helpful for most people with CFS or Fibromyalgia. The items below are only if you have the specific problem listed.

10.1 For Osteoporosis or Osteopenia (loss of bone density).

Bone Health (Ultraceuticals). Take 3 capsules 1-2 times per day as directed by a physician. Do not take calcium products within 2 hours of thyroid medications. Bone Health contains Strontium, which is much more effective than Fosamax for building strong bones, but safe. This product also contains vitamins D and K, Calcium, magnesium, and manganese for maximum benefit. It is outstanding for building bone density.

10.2 For High Cholesterol

Statin drugs like Mevacor can severely flare Fibromyalgia, and Co-enzyme Q10 200-400 mg a day should always be taken with it. Better yet, I substitute the natural formula below (which can also be taken with cholesterol lowering meds if needed).

Chol-Less (Ultraceuticals) - This natural mix of cholesterol lowering herbs is excellent to optimize cholesterol levels. Give it 6 weeks to see the effects. Take 3 capsules a day.

10.3 For Heartburn, Indigestion or Reflux

For detailed information on getting off acid blockers, read my article "Getting off of acid blockers naturally". Chronic acid blockers (e.g., Prilosec) are a poor long-term solution for these problems, as it worsens digestion and your defense against bowel infections. Use the treatment(s) checked off below. After 1 month you can stop your prescription acid blocker and switch to Tagamet (cimetidine - over-the-counter), up to 400 mg 3 times a day as needed, then taper off the Tagamet as able. Use Complete Gest Digestive Enzymes as well and sip warm liquids with meals instead of cold water (digestive enzymes work poorly at cold temperatures). Taking a minute to relax before eating and chewing your food will also help digestion. Coffee (including decaf), colas, Aspirin and/or alcohol can markedly worsen indigestion and reflux.

Complete GEST Enzymes (Enzymatic Therapies)/Similase (Integrative Therapeutics) - 2 capsules with each meal to help digest your food properly. If you have ulcers or they irritate your stomach begin with GS Similase.
Mastic Gum - 500 mg 2 capsules twice a day for 2 months, then as needed.
Heartburn Free - by Enzymatic Therapies. 1 every other day for 20 days (may initially aggravate reflux).
Rhizinate (DGL Licorice) (Enzymatic Therapies/Integrative Therapeutics) - 380 mg (not the sugar free one). Chew 2 tablets 20 minutes before meals.

10.4 For Anxiety.

Calming Balance (Health Freedom Nutrition) or Tranquility (Ultraceuticals) - Vitamin B1 500 mg, passion flower, theanine, magnolia, B vitamins, and magnesium. 1-3 caps 1-3x day is outstanding for anxiety (the effect increases with 1-4 weeks of use).

Please note that these recommendations are Dr Teitelbaum's opinion and that they are not intended to all apply to every Fibro patient. Before taking any new supplement, check with your healthcare team to make sure that it is safe for you personally to do so.

Please note that Dr Teitelbaum also recommends the use of medications where needed for the treatment of Fibro and CFS.

For more information on Dr Teitelbaum, see his website endfatigue.com.

Becoming an Expert Patient Article 4

Thu, 21 Aug 2008 12:00:00 +0100

Medications & staying in control

When you have a chronic condition that means you need a variety of different medications, and sometimes a number of medications at once, it can be easy to feel that you are losing control of what is happening to you.

Whether you take paracetamol on an occasional basis, or strong opioids on a daily basis, it is likely that at some point, you will need some help from medications. Part of becoming an expert patient is learning what you need to know to ensure that you can take medications and stay in control.

In this article we discuss:

Who to Discuss Medications with
Where to go for more Information
Some hard truths about Medications

When you start taking a medication, as an expert patient, you should know:

What you are taking the medication for.
Why you are taking that medication instead of another medication.
When and how you should take the medication.
What side effects are likely and are there any side effects to watch out as they could be dangerous.
If you get side effects, are they likely to ease off. And what, if anything, you could do to reduce side effects.
Is there anything - such as driving, climbing ladders - that you should avoid doing until you know how you react to the medication.
How long the medication is likely to take to kick in.
Whether the medication is likely to interact with any other medications you take.
Whether the medication could interact with any supplements, food or drink you take.
If you need to come back to discuss your progress, and if so, when.

Who to Discuss Medications with

The doctor who prescibes you a medication is the obvious first place to get information. At the very least, you should find out from this doctor what the medication is being prescribed for, why they have chosen this particular medication, when and how you should take the medication and whether you need to come back to discuss your progress. Ask about side effects and how long the medication should take to kick in, but some doctors are not very knowledgeable about the individual side efefcts of medications and you may be able to get more information either yourself or from your pharmacist.

If the doctor who prescibed you a medication was a specialist, then talk to your GP if you have any questions or concerns about the medication. Remember though, that presumably you saw the specialist because they had more specialised knowledge than your GP, so it is possible that your GP will not be familiar with a medication or with its use for why you are taking it.

Pharmacists are often helpful people to discuss medications with. They may have more information about the medication to hand, especially about side effects, as medications are their speciality. Always using the same pharmacy has the advantage that they should have records of everything you take and so can more easily check for interactions between your medications. Many pharmacies now offer medication reviews to patients where they can check and discuss your medications in more detail.

Support groups, whether online or in real life, may let you hear about other patient's experiences of the medication you have been prescribed. However, you do need to take into account that people who have had bad experiences are likely to be more vocal than those who have had neutral or good experiences, and so you may not get a balanced view. If talking to other patients causes you concerns about the medication, discuss these with your healthcare team. You may have nothing to worry about.

Where to go for more Information

The patient information leaflet that comes with medications can be extremely useful. If one has not been supplied with your medication, just ask the pharmacist to give you one. When starting a new medication you should always read the patient information leaflet as they are a good source of basic information about the medication.

The internet has opened up the possibilities of finding out about medications. However, you do need to make sure that you stick to reputable sites. Using a search engine can be useful if you cannot remember a good website to go to, but something as simple as mis-spelling the medication name can cause you to only find less reputable sites, which may give you unhelpful information. When using reputable sites, you do have to be aware that they only publish accepted information, so if the medication hasn't yet been licensed for use for the condition you have got it for - and Fibro does not yet have any medications licensed for it in the UK - then that condition will not be listed as a use for that medication.

Netdoctor.co.uk is one of the more useful UK sites for looking up medications and their medicine database is often useful. Being a UK based site has the advantage that the common names of medications will be what are used by UK GPs and that medications that are licensed in the UK, but not the US, will be listed.

The British National Formulary (BNF) is the book that healthcare professionals use to look up medications and the medication information is now available online. However, it often doesn't provide much in-depth information and the online version can be complicated to use.

Medicinenet.com is a good USA based site with a comprehensive Medications database, as well as databases of Diseases and Conditions, Symptoms and Signs and Procedures and Tests. If you search using the generic or medication name, then confusion because of the differences between UK and USA brand names will be avoided. However, there will be the occasional medication that is licensed in the UK but not in the US.

RxList.com has far more in-depth information about medications than most other websites. Although some of this information, such as the chemical composition of a medication, may not be of interest to many people, the detail given about side effects, drug interactions, warnings, precautions and contrindications is excellent.

When looking for information about medication interactions, DrugsDigest.org provides an easy comparison tool. You select medications from a list, add them to an interaction list and then click Check Interactions. Although this shouldn't be relied upon as being 100% accurate - it doesn't allow you to add in conditions or foods for example - it can be useful.

Some hard truths about Medications

Remember that all medications - and, in fact, many supplements and even some complementary therapies - have potential side effects. Many of the side effects of medications tend to be worse when you first start on a medication, so if you try a medication or other treatment and get some side effects, do not immediately dismiss that medication or treatment as an option, but instead discuss your concerns with your healthcare team. It may be likely that the side effects will ease with time or there may be something you could do or take that could help. You may also want to start one medication at a time, even if it’s just a short time - like a few days or a week - apart. Do not stop medications without discussing this with a doctor first as there are withdrawal issues with some medications.

Some medications can take quite a long time to kick in and you have to be patient. Ask your doctor or pharmacist how long the medication usually takes to kick in, but for some medications, such as anti-depressants, this can be up to 4-6 weeks. If you do not see any effect at first, be patient and give it time. If, however, after more than a month you are not noticing any effects, then go back to the doctor that prescribed the medication.

Other medications need to have their dosage increased slowly and this can take some time. Discuss with your doctor if this will be needed and decide on a plan of when you will increase the dose and by how much. You may also want to discuss whether you can increase more slowly if you get side effects, particularly if you cannot get a follow-up appointment with that doctor at short notice. You may need to be very patient, but it is likely that, if you have to increase the dose slowly, that this is for a good reason.

Fibromyalgia Syndrome Research articles from August

Sun, 31 Aug 2008 12:00:00 +0100

Some of the most interesting research relevant to Fibromyalgia Syndrome (Fibro) that has been published over the last month and discussed in the FibroAction Research section is summarised here.

Physical functioning limitations with Fibromyalgia Syndrome

Women with Fibro may have more physical functional limitations than the average 80-year old woman, according to a survey carried out by the American National Fibromyalgia Association (NFA). An article was published describing a study of the survey results, in which they found that: more than 25% of the women reported having difficulty taking care of personal needs and bathing; more than 60% reported difficulty doing light household tasks, going up/down 1 flight of stairs, walking half a mile, and lifting or carrying 10 lbs; and more than 90% of the women reported having difficulty doing heavy household tasks, lifting or carrying 25 lbs, and doing strenuous activities.

Hydrotherapy for Fibromyalgia Syndrome

Hydrotherapy is useful in managing Fibro, according to a study from researchers at the Health and Rehabilitation Sciences Research Institute at the University of Ulster. The researchers carried out a search of the medical literature and found some good quality trials that showed that the use of hydrotherapy as a treatment for Fibro caused positive outcomes to be reported for pain, health-status and tender point count. The EULAR evidence based recommendations for the management of Fibromyalgia Syndrome also recommend that "Heated pool treatment, with or without exercise, is effective."

Pain Related Cognitive Behavioral Mechanisms and Fibro

An article by Dutch researchers has suggested that screening for pain persistance and pain avoidance patterns in Fibro patients can lead to finding more effective treatments for individual patients. Pain avoidance is characterised by avoiding activities because they may cause pain (even though, in some cases, e.g. with exercise, this can lead to more pain in the long-term), and pain persistance, characterised by continuing with activities in spite of pain (even though this may lead to more pain).

Juvenile Fibro and Anxiety

A recent article has suggested that children with Fibro are more likely to suffer from anxiety disorders, and that anxiety is linked to poorer functioning in these patients. However, major depression is reported less in children with Fibro than in adults with Fibro. According to another article, Fibro affects between 1.2%-6.2% of children, with prevalence being higher in girls than in boys, and peaking at the time of puberty. The development of the condition in children is related to many factors, such as genetic and anatomic factors, disordered sleep and psychological distress.

Statins and muscle pain

An article from a team of researchers at a Harvard teaching hospital has suggested that statin users are more likely to have musculoskeletal pain. Statin use may be problematic for Fibro patients because of the risk of increased pain, but another article suggests that these risks can be reduced through proper monitoring, individual tailoring of doses and the use of treatment alternatives, such as particular statins that are less likely to cause side effects.

High Dose Amitriptyline not for Fibro

A study was published this month that reviewed trials of Amitriptyline as a treatment for Fibro and that suggested that Amitriptyline is only effective for Fibro when used at low doses for a short period. The researchers carried out a search of the medical literature and then compared the results of the moderate-good quality trials of Amitriptyline as a treatment for Fibro. They found that Amitriptyline at a dose of 25mg/day was effective as a treatment for Fibro when taken for 6-8 weeks, but that when taken for longer periods it lost its effectiveness. They also found that Amitriptyline at a dose of 50mg/day was not effective as a treatment for Fibro, compared to placebo. Given the frequency with which Amitriptyline is prescribed for Fibro in the UK, often for long periods and at high doses (50mg or more: a high dose for Fibro), this review could be hugely important.

Getting to know Dr Jacob Teitelbaum

Mon, 18 Aug 2008 12:00:00 +0100

Jacob Teitelbaum MD is the author of 'From Fatigued to Fantastic!' a popular book on managing chronic fatigue, and 'Pain Free: 1-2-3', a step-by-step program to help identify the source of pain and understand how to alleviate it.

He frequently speaks on chronic fatigue, Fibro and on the use of supplements to manage these conditions, and has previously appeared on CNN, FOX News and the Oprah and Friends Show with Dr. Oz in the US.

FibroAction founder Lindsey Middlemiss, was given the opportunity to interview "Dr T", allowing us to get to know a little more about him and what he does.

Lindsey: Dr T, I know that you had personal experience of the conditions you talk about, having had to take a year out from med school after becoming ill. Do you consider that you suffered from Fibromyalgia Syndrome (Fibro) or Chronic Fatigue Syndrome (CFS)?

Dr T: Both. The majority of people who have one of these have both, though they may not necessarily fill all of the criteria.

Lindsey: What would you consider to be the differences – or similarities – between Fibro and CFS?

Dr T: Different people fall in different patterns on the spectrum, and no 2 cases are exactly the same. In the fibromyalgia pattern, the widespread pain is the dominant symptom. With CFS, the post-exertional fatigue and sometimes flu-like Symptoms may predominate. Though some have pure CFS without the pain (often with ongoing viral infections), the majority also have pain.

Lindsey: On your website, you talk about myofascial pain being a cause of Fibro pain. Do you consider Fibro and Myofascial Pain to be different conditions or the same?

Dr T: Widespread Myofascial pain (or muscle shortening as I sometimes call it) is a component of Fibro. That it is widespread suggests that there is an underlying biochemical cause (as it affects the whole body). When it is localized and affecting only one area - for example, with low back pain - although the biochemical factors need to be treated, there is more likely to also be a structural component - such as one leg being shorter than the other.

Lindsey: I know that you recommend extra testing for patients, above what may be done normally by a GP. What would you normally test for?

Dr T: The tests I recommend patients get include:

A chemistry panel which checks 12 to 20 different basic chemistries - it is critical to check for diabetes, kidney function, liver function, electrolyte disorders and other common problems, but it should also include sodium, potassium, magnesium, calcium and glucose.
Free T4 (not a T4 Index.) This is the most important Thyroid test, as it checks the actual active hormone level which is much better for CFS/Fibro patients.
Vitamin B12 Level.
DHEA-S, a test for DHEA-Sulphate. The regular test just checks the DHEA level which is usually not reliable.
Cortrosyn Stimulation Test, to check adrenal function. This test requires an injection and many places can't do it, in which case I recommend a morning cortisol level test.

There are other tests that are less important, but that can be helpful, such as:

Stool Test, checking for ova & parasites. However, this test is easily ruined and I only use 2 labs in the US for it. Checking for for Clostridium Difficile is also useful if diarrhoea is a severe problem.
Urine Analysis.
Free Testosterone. This must be the Free Testosterone level as a simple "Testosterone" test or "Total Testosterone" test is not adequate unless the result is below the normal range.
25 (OH) D (25-hydroxyvitamin D), a good indicator of Vitamin D Status, and 1,25 (OH) D (1,25-hydroxyvitamin D) which, if high, suggests infections and a possible need for decreased Vitamin D intake.
Lyme Titre, checking for Lyme Disease (a tick-borne disease).

Note: A full list of the tests Dr T recommends can be found on his website here.

Lindsey: The first part of your SHINE (Sleep-Hormones-Infections-Nutritional Supplements-Exercise) Protocol for restoring energy is to get enough sleep. What do you recommend for patients who are getting plenty of sleep, but it is non-restorative so they never wake up feeling rested?

Dr T: Check for sleep apnea, restless leg syndrome and Upper Airway Resistance Syndrome. Also, avoid valium family medications (benzodiazepines), except for clonazepam and Alprazolam, and use natural or prescription sleep aids that deepen sleep, instead of keeping you in light, stage 2 sleep. Once you've done this, and have made sure you are not sedated from medications, the rest of the "SHINE Protocol" usually restores energy.

Lindsey: I know you use medications as well as supplements with almost all patients. Would you recommend that traditional practitioners who are dealing with Fibro and/or CFS patients and only use medications learn about how to use supplements to help their patients?

Dr T: If they want their patients to get better!

Thanks to Dr T for this interview.

For more information on the supplements Dr Teitelbaum recommends, see his 'The Top 10 Supplements for CFS or Fibromyalgia', reproduced with permission in FibroAction's Patient Section.

For more information on Dr Jacob Teitelbaum, see his website www.endfatigue.com. On this website, you can also sign up for his newsletter, as well as checking out the free short online program which will analyze your symptoms and history using the same assessment criteria that Dr. Teitelbaum uses.

Getting to know Emily Maguire

Tue, 09 Sep 2008 12:00:00 +0100

Singer-songwriter Emily Maguire is a real Fibro success story.

Originally trained as a cellist and pianist, when Fibro struck her down Emily taught herself guitar from Bob Marley songbooks and started writing songs about life and the world outside her window.

Years later, back on her feet and fed up with grey skies and concrete, she gave up her flat in London for a shack in the Australian bush where she recorded and released her debut album ‘Stranger Place’ to critical acclaim by the Australian media.

Further success has followed and last year Emily was offered the chance to tour the UK and Ireland with legendary singer-songwriter Don McLean. From playing pubs and folk clubs, suddenly Emily found herself on stage at some of the biggest concert halls in the country, including the Royal Albert Hall at the end of October. This year she played on the acoustic stage at Glastonbury. Her second album 'Keep Walking' - financed by making and selling goats cheese on the farm in Australia - is available to buy from HMV and Virgin megastores in the UK & Ireland as well as from Emily's website.

FibroAction founder Lindsey Middlemiss was given the opportunity to interview Emily and learn a little more about her experiences with Fibro.

Lindsey: Emily, would you mind telling me a bit about your experience with Fibro?

Emily: I developed Fibro as a teenager, when I was 16 or 17, after a car crash. I was originally diagnosed with arthritis and it took 3 years before I got a Fibro diagnosis.

The major thing with Fibro is that when you've got it there seems no end to it. I just lived with it: ten years with constant pain. I wasn't able to work or go to University or anything like that. I felt like my life was over.

I was getting treatment at the Royal National Hospital for Rheumatic Diseases in Bath and they were very helpful with getting me physio. They also put me on a low dose of amitriptyline, which I still use to help me sleep. But I was still in pain.

When I was 27, 10 years after developing Fibro, I went to see a consultant rhematologist called Dr Peter Fisher at the Royal London Homoeopathic Hospital. With Fibro, you try everything and for me, homeopathy was the last in a long list of things I tried. Dr Fisher gave me a treatment and a month later, the pain had gone.

One other thing that helped to change things for me was that, when I was ill and stuck at home for months on end, I started writing music. It turned the illness into a real blessing in disguise: what could have been a very negative experience became positive.

The Royal National Hospital for Rheumatic Diseases NHS Foundation Trust is a Specialist Hospital in the centre of Bath with an international reputation for research, expertise in complex rehabilitation and rheumatology. There are outpatient coping courses for ME/CFS and Fibro patients, as well as intensive residential pain management courses for highly disabled, complex chronic pain sufferers.

The Royal London Homoeopathic Hospital is the leading centre for complementary medicine in the NHS and provides a range of complementary therapies, including: acupuncture, phytotherapy/herbal medicine, spinal manipulation, autogenic training as well as homeopathy and others. Peter Fisher is now clinical director of the Royal London Homeopathic Hospital, and homeopath to Her Majesty the Queen.

Lindsey: Do you get any symptoms now or do you consider yourself to be cured?

Emily: I think of myself as cured but in talking to other people with the condition, I really stress the fact that I was doing all the things you should do [to help manage Fibro] before - exercise, pacing, keeping stress levels down, taking something to help sleep (a low dose of amitriptyline in my case) and thinking positively. Without any of those things, I don't think the homeopathy would have worked. I continue to do all of those things and if I stopped doing any of them, then I would get ill very quickly. Even now, if I get really stressed or don't sleep well, then the pain starts to come back.

I look after myself a lot better now through being ill. For years I resisted making changes in my life. I wanted someone to give me a pill and that be it, but I realised that I had to take responsibility for my own health.

Lindsey: You talk about keeping stress levels down: do you find it hard to do that when you're on tour or recording? The music industry has a reputation for people "burning out".

Emily: Yes! I have to be very self-disciplined about it, especially in doing my meditation. I've been doing meditation for a few years now - I'm a Buddhist - and I find it incredibly helpful for clearing my head at the beginning and end of the day. I find a routine is needed, even if my home routine is disrupted [when on tour].

Lindsey: A lot of people are sceptical about homeopathy: what do you think about it?

Emily: Some people say that homeopathic treatments are just placebos. I don't care what it was, whether it was a placebo or something more: the pain went away and that's enough for me.

Lindsey: You're a very positive role model, especially for younger people with Fibro: not only are you suceeding, both professionally and in getting control of your health, but you seem to have a very positive and proactive outlook.

Emily: Getting your mind as positive as possible is important and it's a part of taking responsibility for your own health. You have to think "Okay, that was hard, but I learnt this, did that.." and it can become very positive.

When I was 20, I was feeling pretty desperate: mostly stuck at home and using walking sticks, feeling like my life was over. Then something clicked in my head and I thought "I can still do something". That's when I started learning guitar - I got one for my 21st birthday - and writing songs and a whole new world opened up.

Fibro can be an opportunity to change your life, to find something creative that you love doing.

Having been touring as a support act for the last year, Emily will be doing her first headline gig on October 16th at Bush Hall, Shepherds Bush, London. For more information, see emilymaguire.com.

Treating Candida and Fungal Infections in Fibro

Tue, 30 Sep 2008 12:00:00 +0100

Many people these days have heard of Candida, which has been blamed for a number of illnesses and other problems - a few people seem to think that it is the answer to everything! However, for some patients, it can be a real problem, and it is an issue rarely addressed as a possibility in Fibromyalgia Syndrome (Fibro) patients.

Dr Jacob Teitelbaum wrote an article for his newsletter recently, on "Treating Candida/Fungal Infections in CFS/FMS, Sinusitis, and Spastic Colon", and he has kindly given us permission to reprint this.

The notes in italics are FibroAction's notes, not Dr Teitelbaum's. Note that this article has been shortened, partly to remove information not relevant to UK patients. For the full article, see Dr Teitelbaum's website.

The following is reproduced with permission of Dr Jacob Teitelbaum. Copyright Jacob Teitelbaum MD 2008

Treating Candida/Fungal Infections in CFS/FMS, Sinusitis, and Spastic Colon

by Dr Jacob Teitelbaum MD

Have Chronic Fatigue Syndrome, Fibromyalgia, or even sinusitis or spastic colon? You probably have overgrowth of yeast or Candida. Though poorly understood by most physicians, treating this underlying infection can have profound health benefits!

Immune dysfunction (i.e., being more susceptible to infections) is a common part of both Fibromyalgia and CFS, and is becoming more common in the overall population as well. In earlier articles, we have discussed how to diagnose and treat chronic viral and antibiotic sensitive infections. The most common and important infections to treat in CFS and Fibromyalgia are yeast, fungal and Candida infections (I will treat these as a single infection for this article). Unfortunately, standard medicine does not recognize fungal infections unless they affect the nails, skin, hair or groin areas—or they are in the blood and can kill you. Because there is no test to clearly diagnose overgrowth of bowel or sinus Candida, many doctors say it doesn't exist. Reminds me of the little boy who thinks he's invisible because he's covered his eyes…

An Overview of Yeast/Candida Infections

I will use the terms yeast, fungi, and Candida interchangeably for this discussion. Fungal overgrowth may suppress the body's immune system. It is suspected that this occurs in part because the bowel yeast infections cause what is called "leaky gut syndrome." This means that food proteins get absorbed into the blood system before they are fully digested. Because of this, your immune system has to complete the digestion process, which often overtaxes it. Many physicians feel that yeast overgrowth causes a generalized suppression of the immune system. In other words, once the yeast gets the upper hand, it sets up a cycle that further suppresses the body's defenses.

Yeast are normal members of the body's "zoo." They live in balance with bacteria—some of which are helpful and healthy, and some of which are detrimental and unhealthy. The problems begin when this harmonious balance shifts and the yeast begins to overgrow.

Many things can prompt yeast to overgrow. One of the most common causes is frequent antibiotic use. Antibiotics kill off the good bacteria in the bowel along with the bad bacteria. When this happens, the yeast no longer have competition and begin to overgrow. The body is often able to rebalance itself after one or several courses of antibiotics, but after repeated or long term courses — and especially if the body has an underlying immune dysfunction — the yeast can get the upper hand.

Other factors are also important. Studies have shown that animals that are sleep-deprived and/or have increased sugar intake develop immune suppression and bowel yeast overgrowth. Many physicians feel that eating sugar stimulates yeast overgrowth in people as well. So as you prepare your meals, remember — sugar is food for yeast.

Diagnosing Yeast Overgrowth

There are no definitive tests for yeast overgrowth that will distinguish yeast overgrowth from normal yeast growth in the body. In my experience, using Dr. William Crook's yeast questionnaire is still the most reliable way to tell if a person is at risk of yeast overgrowth. A simplified version is part of our free web program which will analyze your symptoms to determine the cause(s) of your CFS/FMS, fatigue or pain and tailor a treatment protocol to your case. Dr T's web program is available here.

In addition, anyone with ANY of the following criteria should consider Candida overgrowth:

anyone with CFS or Fibromyalgia, OR
who has chronic nasal congestion or sinusitis, OR
has spastic colon (gas, bloating, diarrhea and/or constipation), OR
has been on recurrent or long term antibiotics (especially tetracycline for acne), OR
who intermittently has painful sores in the mouth (not cold sores on the outer lips) that last for about ten days at a time.

Treating Yeast Overgrowth

A number of very effective treatments can be used to eliminate a yeast problem. I find that the best approach is to combine dietary changes, natural remedies, and prescription medications.

Natural Yeast Treatments

The most important part of treating yeast overgrowth is avoiding sugar and other sweets, although I will add the three magic words, "except for chocolate." You can also enjoy one or two pieces of fruit a day, but you should not consume concentrated sugars like fruit juices, corn syrup, jellies, pastry, candy, or honey. Stay far away from soft drinks, which have ten to twelve teaspoons of sugar in every twelve ounces. This amount of sugar has been shown to markedly suppress immune function for several hours. Be prepared to have your CFS/FMS symptoms flare for about one week when you cut sugar out of your diet.

One of those dietary methods that can help restore balance in the bowel is the intake of acidophilus — that is, milk bacteria, a healthy type of bacteria. Acidophilus is found in yogurt with live and active yogurt cultures. Indeed, eating one cup of yogurt a day can markedly diminish the frequency of recurrent vaginal yeast infections. Acidophilus is also available in supplement form, but which brand you use is important. Many brands do not actually contain the amount that the label claims or contain dead bacteria—which do not put up much of a fight against the yeast. I like to use Probiotic Pearls by Integrative Therapeutics or Acidophilus Pearls by Enzymatic Therapy. The pearl coating acts like a little tank—which protects the milk bacteria as they pass through the acidic environment of the stomach. Without this coating to protect against stomach acid, it is estimated that 99.9% of these yeast fighting bacteria will NOT survive the trip through the stomach. This means that to get the number of healthy bacteria in 1 pearl to your colon, you'd need to eat around 3 gallons of yogurt! Once the pearl hits the alkaline environment of the small intestine, it dissolves and releases the bacteria to fight the yeast. I recommend that you take 2 pearls twice a day for 5 months, after which time many people choose to continue taking one a day for prevention. Although the box claims 1 billion bacteria per pearl, the laboratory assays actually show that these pearls contain 2.4 billion bacteria. If you are on antibiotics (not antifungals), take acidophilus at least three to six hours before or after the antibiotic dose. Note that many probiotic yogurt drinks contain sugars, so are not recommended here. Any yogurt may also aggravate IBS as it is a dairy product.

Many other natural antifungals can be helpful, but when used individually in a high enough dose to kill the yeast they also irritate the stomach. Because of this I like to combine multiple anti-fungal herbs. My favorite combination is Anti-Yeast by Ultraceuticals, which contains 240 mg of coconut oil powder (50% caprylic acid), 200 mg of oregano powder extract, 120 mg of uva ursi extract, 240 mg of garlic powder (deodorized), 160 mg of grapefruit seed extract, 80 mg of berberine sulfate, 200 mg of olive leaf extract, 50 mg of alpha lipoic acid, 50 mg of milk thistle extract, and 50 mg of N-Acetyl L-Cysteine.

Prescription Treatments for Yeast Overgrowth

Dr Teitelbaum considers it to be critical to add a prescription anti-fungal as well, because the natural products will normally only kill yeast in the gut and are not as strong. However, these medications are not widely available in the UK and Candida overgrowth is rarely recognised as a systemic problem (localised infections with positive test results are treated with medications however).

If you cannot get the [medications] from your physician, the rest of the program will still help, but will not kill off the yeast in the sinuses as [well].

Many books on yeast overgrowth advise readers to avoid all yeast in the diet. This advice is based on the theory that an allergic reaction to yeast is the cause of the problem. However, the yeast that is found in most foods (except beer and cheese) is not closely related to Candida, which is the predominant yeast that seems to be involved in overgrowth.

In my experience, trying to avoid all yeast in foods results in a nutritionally inadequate diet and does not substantially help most people. Although a few people do appear to have true allergies to the yeast in their food, they account for fewer than 10% of my patients with suspected yeast overgrowth. Interestingly, once adrenal insufficiency and yeast overgrowth are treated, most people find that their allergies and sensitivities to yeast and other food products seem to improve or disappear.

Nutritional deficiencies such as low zinc or low selenium may also decrease resistance to yeast overgrowth.10 A good multivitamin supplement, such as the Energy Revitalization System, should take care of these deficiencies. This is simply another example of how all the factors involved in CFS/FMS are closely interrelated.

What If the Yeast Comes Back?

It is normal for yeast symptoms to resolve after treatment. After six weeks on Diflucan, most people feel a lot better. If not, you may have Diflucan-resistant Candida, and a trial of Nizoral may be helpful. However, symptoms may sometimes also recur soon after you stop taking either antifungal. If this happens, I would continue taking Diflucan or Nizoral for another six weeks or for as long as is needed to keep the symptoms at bay. More frequently, people feel better after treatment and stay feeling fairly well. Although many people never need to be re-treated for yeast, others need to repeat a course of antifungals after six to twenty-four months, especially after eating too much sugar or taking antibiotics.

The best marker that I have found for recurrent yeast overgrowth is a return of bowel symptoms, with gas, bloating, and/or diarrhea or constipation, vaginal yeast, mouth sores, and/or recurring nasal congestion or sinusitis. If these symptoms persist for more than two weeks, especially if there is also even a mild worsening of the CFIDS/FMS symptoms, it is very reasonable to repeat treatment with six weeks of Anti-Yeast, Probiotic Pearls, and Diflucan. If a second round of treatment resolves the symptoms, you may opt to repeat this regimen as often as is needed, usually every six to twenty-four months. By using the Anti-Yeast and Probiotic Pearls, however, you may be able to avoid the need for repeated use of antifungals and the possible risk of becoming resistant to them.

More detail on the Candida issue and its treatment with supplements is available on Dr Teitelbaum's website or in his book "From Fatigued to Fantastic!" (Avery/Penguin Oct 2007).

Fibromyalgia Syndrome Research articles from September

Wed, 01 Oct 2008 12:30:00 +0100

Some of the most interesting research relevant to Fibromyalgia Syndrome (Fibro) that has been published over the last month and discussed in the FibroAction Research section is summarised here.

Hippocampal Dysfunction in Fibromyalgia Syndrome

Three articles published recently suggest that symptoms of Fibro may be explained by the dysfunction of an area of the brain called the Hippocampus. All of the studies showed abnormalities in the chemicals in this part of the brain, and these abnormalities were found to correlate with patient symptoms. The hippocampus is a brain center that is sensitive to the effects of stress exposure, when talking about stress as physical stressors, and it plays major roles in short term memory and spatial navigation. Although the causes of Fibro are poorly understood, a growing body of evidence suggests involvement of the central nervous system and this research provides yet more evidence for this.

Specialist Nurses can diagnose Fibromyalgia Syndrome

An article has suggested that the use of specialised nurses in the diagnostic process of Fibro is a trustworthy, successful and cost-effective approach that saves waiting time and provides greater patient satisfaction. Specialist nurses are used for a number of conditions, including neurological conditions such as Multiple Sclerosis. In general, they are found to decrease costs and increase patient satisfaction, partly because patients can been seen quicker, get to spend more time with the nurse and feel that they are listened to more.

Fibromyalgia Syndrome has greater impact on patients

The FibroAction article discusses 3 research articles that were first published in late 2007 concluding that Fibromyalgia Syndrome (Fibro) has more of an impact on patients' lives and has more consequences for patients than many other chronic conditions and forms of widespread pain. The first study found that, compared with chronic widespread pain without widespread allodynia, Fibro was associated with more severe symptoms/consequences for daily life and higher pain severity. The second study concluded that people with Fibro had an overall health status burden greater than that of people with other specific pain conditions that are widely accepted as impairing, including rheumatoid arthritis and osteoarthritis. The third study found that, at the individual level, Fibro or Chronic Fatigue Syndrome were associated with an increased risk of both activity limitations and a self-rated health status of fair or poor (as opposed to good) compared to other chronic conditions.

Scales and Assessments for Measuring and Recording Pain

Mon, 20 Oct 2008 12:00:00 +0100

Being able to effectively describe and quantify pain to healthcare professionals can be very difficult, and keeping track of your symptoms over time is even harder, especially with "Fibro-fog". However, being able to do so can be very useful and it is often recommended that patients keep pain or symptom diaries, but knowing where to start, what to include and how to quantify pain and symptoms can be complicated.

There are a number of scales, questionnaires and other assessments that can be used to quantify and record your symptoms in some way, which can be useful when keeping a symptom or pain diary, or in describing symptoms to a healthcare professional.

The Numeric Pain Scale is one of the simplest measures, with the pain at a particular time being assessed as being from 0 to 10, where 0 is no pain and 10 is the worst pain imaginable. This is sometimes used with the Visual Analogue Scale.

The Visual Analogue Pain Scale is a simple assessment tool consisting of a 10 cm line with 0 on one end, representing no pain, and 10 on the other, representing the worst pain ever experienced.

The Wong-Baker Faces pain Scale is recommended for children. Six faces showing expressions from a smile to sobbing are associated with simple pain descriptions for children to choose which best describes them.

The McGill Pain Questionnaire can be used to evaluate a person experiencing significant pain and it includes a number of useful pain descriptions. It can be used to monitor the pain over time and to determine the effectiveness of any intervention and it takes note of anything that worsens pain. However, it is quite lengthy.

The Pain Disability Index is a tool designed to help patients measure the degree to which their daily lives are disrupted by pain. It involves six 0-10 scales concerning the level of disability experienced with regard to Family/Home Responsibilities, Recreation, Social Activity, Occupation, Sexual Behaviour and Life-Support Activity.

The Fibromyalgia Impact Questionnaire is designed to quantitate the overall impact of Fibro over many dimensions including function, pain levels, fatigue, sleep disturbance and psychological distress. It looks at the past week, so would be suitable for a one-off assessment or as a weekly or monthly symptom diary. The FIQ is scored from 0 to 100 with the latter number being the worst case: the average score for patients seen by specialist consultants is about 50. The FIQ is widely used to assess change in Fibro status in research and it has been translated into several languages.

The Self-report Leeds Assessment of Neuropathic Symptoms and Signs (S-LANSS) Pain Scale is a modified version of the LANSS Pain Scale, which consists of five symptom items and two examination items usually performed by a doctor. The purpose of these scales is to assess whether the pain that is experienced is predominantly neuropathic or not. Both the LANSS and S-LANSS are scored out of 24; a score of 12 or more is strongly suggestive of neuropathic pain. These scales may be skewed by Fibro pain, which is neither purely neuropathic (from damaged nerves) or nociceptive (from damaged tissues).

The British Pain Society Pain Scales use 0-10 scales to assess pain at the time of assessment and during the preceeding week, how distressing the pain is/was and how much it inteferes with daily activities as well as how well treatments are working. They could provide a simple assessment for an effective weekly pain diary.

Becoming an Expert Patient Article 5

Sun, 02 Nov 2008 12:00:00 +0000

Listening to your body

By Lindsey Middlemiss

Learning how to listen to your body and find out what is important and what should be done are key parts of becoming an expert patient.

This is something of a balancing act between not ignoring your body and not over-reacting to every little thing. Learning how to get it right can ensure that you don't stress about symptoms, whilst also making sure that you don't put your health at risk by ignoring important symptoms. It also gives you the chance to have more control over your Fibro.

In this article we discuss:

Monitoring your health
Dealing with new symptoms
Recognising flares
How your behaviour affects symptoms

Key points about listening to your body:

Keep track of your Fibro related symptoms.
Know your vital signs.
Make sure any new symptoms are thoroughly checked out by your healthcare team, but don't worry too much over every little thing.
Learn to recognise flares and be pro-active about combating them.
Be aware of how your own actions affect your symptoms and take responsibility for that.

Monitoring your health

If you don't know what is normal for you, then it's tough to know if something has changed. Monitoring your health makes it easier to notice changes, such as flares, worsening symptoms or new problems, and also to pinpoint associations that may help you to control symptoms.

Keeping track of your Fibro related symptoms can be very useful for you both and your healthcare team. This is especially true if you are new to Fibro, or if you have yet to get any control over your symptoms. Keeping a symptom diary of some sort is the most obvious way of doing this, but it can be hard to stick to filling one in. In the long-term it also isn't a great idea for anyone to be focusing on how bad they feel all the time. Filling in a questionnaire or making a note of how you have been on a less frequent basis, such as once a week (at first) or even once a month, can enable you to keep a rough track of your symptoms without making this a priority.

There are a number of charts, questionnaires and other tools for recording your symptoms, ranging from a simple pain questionnaire (where does it hurt and how much does it hurt on a scale of 0-10) to something that looks at not just symptoms but also their impact, such as the Fibromyalgia Impact Questionnaire. At their most basic, these tools are looking to answer the questions: What are your symptoms? What is their severity? How frequently do they occur? Some examples of are discussed in this article: 'Scales and Assessments for Measuring and Recording Pain'.

It is also important to know your vital statistics, including your blood pressure, resting pulse rate, weight and bodily measurements. Not only is it good to keep track of these things for general health, but it can be very useful in monitoring side effects of medications or long-term problems that may be related to the Fibro (such as a change in body shape). Plus, many of these stats can be affected by what you do, in terms of diet, exercise, stress management, etc, and it is easier to keep them under control if you take action early, rather than later. Your GP will usually measure these things on a reasonably regular basis at check-ups, but it is worth asking what the results are and whether they have changed since last time.

Dealing with new symptoms

It can sometimes seem with Fibro, especially if you have recently developed the condition, that more and more symptoms are always cropping up. Learning how to deal with this can make you feel a lot more in control.

A list of Fibro symptoms, such as the one in FibroAction's About Fibro section, can be useful to check whether a new symptom is considered a normal part of Fibro. However, symptom lists, especially those that seem especially in-depth, often don't make clear which symptoms are due to Fibro and which are due to other conditions that may be linked to Fibro but that may require a different treatment. Tendonitis for example, is often seen in Fibro patients. However, it is caused by different factors - inflammation - and requires different kinds of treatments. Similarly, talking to other Fibro patients at support groups, whether online or in real-life can be helpful, but do check whether someone has other health conditions and whether they have had the symptom thoroughly investigated.

It is important to always check a new symptom with a healthcare professional - preferably one with experience of Fibro. Any new symptom should ideally be investigated as thoroughly as it would be if you didn't have a Fibro diagnosis because having Fibro doesn't stop you from getting anything else. And any new severe or potentially life-threatening symptoms, such as chest pain, should always be treated as they would be in someone without Fibro.

However, you have to find a balance between this and between stressing too much over every little thing. If you have a tendency to worry about new symptoms and often find yourself booking a doctor's appointment to discuss a symptom that is gone before you get to the appointment, then the 24-hour rule may be good for you. When a new symptom crops up, wait 24 hours and if it is still bothering you, then make a doctors' appointment. If a symptom comes and goes within 24 hours - and is not serious enough to require immediate attention - then just make a note to mention it to your doctor next time you see them.

Recognising flares

A flare is an increase in symptoms above what is normal for you.

Because what is normal for one person with Fibro may not be normal for another person with Fibro, one person's idea of what a flare is will be different from the other.

Recognising flares is one reason why it is good to know what it normal for you: if you have a gradual increase in symptom severity, it can be easy to miss the change, but recognising that you are going into a flare by noticing an increase in symptoms may give you the opportunity to act to prevent the flare or reduce its severity and how long it lasts.

Some people with Fibro find that, if nothing is done about a flare, then sometimes struggle to recover to whatever their "normal" pre-flare was. Because of this, it is good to be proactive about flares and have a plan in place about how to deal with them once you recognise that one is happening.

Things that may help to limit flares include:

Increased rest and stricter pacing.
Stress reduction & relaxation.
Stronger medications for sleep and/or pain.
Extra medications, such as muscle relaxants.
Vitamin or mineral supplements, usually if your vitamin or mineral levels are low.
Myofascial release massage and/or trigger point injections if myofascial tension and trigger points are an issue.
Complementary therapies that you find useful.

How your behaviour affects symptoms

Your behaviour can have a real impact on Fibro symptoms, partly because of the central sensitisation that is a part of the condition - and which makes your body over-react to many stimuli - and partly because of the many facets of Fibro.

Emotional or mental stress and anxiety impact negatively on many health conditions. Physically, stress and anxiety can affect blood pressure, hormone and neurochemical levels, muscle tension, and other factors. Its impact on some of the physical factors behind Fibro - such as low levels of endorphins - means stress can have a very real effect on Fibro, as it does with many other conditions. Stress also has a negative impact on many conditions that people with Fibro have as well, such as Irritable Bowel Syndrome (IBS) and Myofascial tension. Learning how to manage stress and anxiety better is very important for many people, but especially so if you have Fibro. Some people find that Cognitive Behavioural Therapy (CBT) or counselling can be very helpful. for others, biofeedback or learning relaxation techniques is helpful. Just talking about your problems can be very healthy and if you don't want to burden close family members or friends, then a diary or blog may help, as could an online or in real life support group.

Lack of sleep has a negative impact on Fibro symptoms. Although poor quality sleep and insomnia are both possible symptoms of the condition and possible side effects of medications, your behaviour can still have an impact. A good routine, going to bed at around the same time, not too late, every day can help, as can avoiding stimulants such as caffeine in the evening and winding down properly before bed. Something as simple as a more comfortable mattress and pillow can make a big difference when you have Fibro hypersensitivity - I well remember tossing and turning, feeling that every spring in the mattress was digging into me. Some Fibromites find memory foam helpful as it has no springs, and even if you can't afford a new mattress - Ikea does some at very reasonable prices by the way - then a mattress topper and new pillow could still help.

A healthy, well-rounded diet is good for anyone and although specific diets have not been definitely linked with helping Fibro, a bad diet certainly won't help! Getting good amounts of vitamins and minerals will help keep you generally healthy and may help you to avoid developing deficiencies that could impact on your symptoms as well as helping your immune system. Getting good amounts of protein and eating a reasonably low-GI diet, avoiding too much sugary foods, could help your energy levels. Alcohol (and some foods) may interact with medications so you have to be careful of this - and who needs a hangover when you already have Fibro? Diet can also have a big effect on IBS and Reflux problems, which many Fibromites have. And if you have any food intolerances, then they could be worsening what you think of as your Fibro symptoms.

Being pro-active is an essential part of becoming an expert patient. Even if you have a very good healthcare team, there won't always be someone there to remind you to take your medications or supplements, do your exercises, eat the right things, pace yourself and not get stressed. You have to take responsibility for your own actions. It isn't always easy, especially when Fibro-fog makes it hard to remember anything and pain and fatigue can mean you just don't want to do anything. But it has got to be done - if you want to take charge of your health and your healthcare and become an expert patient, then the first step should be to charge of your own actions.

Tender points Trigger points and Pressure points

Sun, 02 Nov 2008 12:00:00 +0000

Tender points, Trigger points and Pressure points (usually called acupressure points) are all different, but they are often mixed up, even by doctors.

Tender points (TPs)

Tender points, not trigger points, are part of the American College of Rheumatology's criteria for the diagnosis of Fibromyalgia Syndrome (Fibro).

The anatomic and physiological mechanisms accounting for the presence of TPs have received great attention, but nothing special about TPs has been found in research. Many experts now agree that they are just points on the body where everyone is more sensitive and so where it is easier to note and in some way quantify the hypersensitivity to pain of Fibro patients.

TPs occur in pairs on various parts of the body [1]. TPs hurt where pressed, but do not refer pain elsewhere and they are not hard knots (unlike Trigger Points)[2] - in fact there is nothing to be found at a TP site other than tenderness.

The American College of Rheumatology's guidelines for the diagnosis of Fibromyalgia [3] is that the patient should have widespread pain in all four quadrants of the body for a minimum duration of three months and tenderness or pain in at least 11 of the 18 specified tender points when a specific amount of pressure is applied (see figure below). Most healthy individuals experience pain in only a small number of tender points in response to this test. [4]

However, the criteria of “11 of 18" specific Fibro tender points were originally meant to screen patients for clinical study and not as diagnosis [1]. A range of things affect TPs including illness progression, injuries [2] and also gender - men with Fibro tend to "score" lower than women with Fibro, which is one factor behind the under-diagnosis of Fibro in men. For the tender point exam to have any meaning, you need a doctor who really knows what they are doing. See the article Explaining thr Tender Point Test for more details. A key part of this is knowing the difference between Tender Points and Trigger Points and being able to differentiate between them in the examination.

(Myofascial) Trigger points (TrPs or MTPs)

Trigger points are hard points in the myofascia that hurt to the touch and refer pain and/or other symptoms elsewhere.

There is no such thing as a Fibromyalgia Syndrome trigger point.[2]

Fascia is the semiflexible fibrous membrane of connective tissue that binds together the various components of the body. [5] The Myofascia is the fascia relating to the muscles - it covers individual muscle fibers, bundles them together and covers the whole muscles [5].

A substance within the myofascia is involved with the transfer of nutrients and removal of waste products in the muscles, and also keeps the muscle supple, preventing microadhesions from forming. If the myofascia is subjected to biochemical or mechanical trauma, then the fluids in it can thicken, even becoming hard, making the myofascia tighten. Microadhesions then form between the muscle fibres, which is what the tight bands or knots of the TrPs are. [2][6]

This fibrous myofascial adhesion affects the nerves around the muscle, disrupting their normal function, which is how the TrPs trigger symptoms away from themselves. [6]

TrPs seem to form as a response to things happening to our bodies, such as overuse, repetitive motion trauma, bruises, strains, joint problems, surgery, or stress. Pain creates a neuromuscular response, and the muscle around the pain site tightens, "guarding" the hurt area. Stress can cause you to tense muscles for no reason other than a stilled form of the fight or flight instinct. [6]

When muscles are in a state of sustained tension, they are working, even if you're not. A working muscle needs more nutrition and oxygen, and produces more waste, than a muscle at rest. And unlike when you exercise and work muscles that way, increased blood flow isn't supplied to deal with the demands. This creates an area in the myofascia starved for food and oxygen and loaded with toxic waste — a TrP. [6]

An active TrP not only hurts when it is pressed, but it "triggers" a referred pain pattern or other symptoms locally or elsewhere in the body. This pattern from specific TrPs is usually similar from patient to patient and charts are available depicting pain referral patterns from TrPs. An active TrP hurts whenever you use the involved muscle and if a TrP becomes very active, symptoms occur even when the muscle is at rest.[6]

TrPs can cause a wide range of symptoms including:

Stabbing pains.
Burning pain.
Stuffy sinuses.
Headaches & migraine.
Nausea.
Reduced mobility.

Acupressure points

Acupressure (a combination of "acupuncture" and "pressure") is a traditional Chinese medicine technique based on the same ideas as acupuncture. Acupressure involves placing physical pressure by hand, elbow, or with the aid of various devices on different acupuncture points on the surface of the body. Acupressure points can do a variety of things including relieve pain.

References:

Starlanyl DJ, 2003. Fibromyalgia and Chronic Myofascial Pain: Keys to Diagnosis and Treatment [website]. Available: http://www.sover.net/~devstar/physinfo.htm [Nov 2008]
Starlanyl DJ, 2004. Trigger Points and Tender Points: Why the Difference Is Important to You [online paper]. Available: http://www.sover.net/~devstar/TrPs_and_TPs.pdf [Nov 2008]
Wolfe F, Smythe HA, Yunus MB, Bennett RM, Bombardier C, Goldenberg DL, et al. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia: report of the multicenter criteria committee. Arthritis Rheum 1990;33:160---72.
National Fibromyalgia Association. Glossary of Research and Other Fibromyalgia Terms and Definitions [website]. Available: http://www.fmaware.org/site/PageServer?pagename=resources_glossaryTermsDefinitions#T [Nov 2008]
Clark GA. Fascia & Myofascia [website]. Available: http://www.painbustersclinic.com.au/body/fascia.htm [Nov 2008]
Starlanyl DJ, Copeland ME, 2007. Fibromyalgia and Chronic Myofascial Pain: Patient Information [website]. Available: http://www.sover.net/~devstar/define.htm [Nov 2008]

Fibromyalgia Syndrome Research articles from October

Mon, 03 Nov 2008 12:00:00 +0000

Some of the most interesting research relevant to Fibromyalgia Syndrome (Fibro) that has been published over the last month and discussed in the FibroAction Research section is summarised here.

Fibromyalgia Syndrome and physical trauma

There is still no agreement among experts as to whether physical trauma can cause Fibromyalgia Syndrome (Fibro) say a group of Israeli researchers in a recent article.

According to the researchers, 25-50% of Fibro patients report the occurrence of a physical trauma happening not long before their symptoms started, with whiplash often being given as a trigger for Fibro. However research studies looking for a direct link between physical trauma and Fibro have come to contradicting conclusions. Possibly factors such as genetic pre-disposition, people's past experience and how they respond to trauma have such an effect that larger studies are needed. In the meantime, the evidence for a direct link between whiplash injury and Fibro remains unclear.

Twin Study suggests that Fibromyalgia Syndrome has a strong genetic background

Fibro symptoms seem to have a strong genetic background, according to a recent article .

The researchers studied the prevalence of Fibro related symptoms in 12,502 like-sexed twins of the Finnish Twin Cohort to see whether there was evidence for a genetic link (as identical twins share the same genes). They concluded that symptoms known to be associated with Fibro seem to have a strong genetic background.

Altered brain activity during pain processing in Fibromyalgia Syndrome

According to a recent article, more evidence has been found that central mechanisms of pain processing in the brain play an important role in Fibro.

A group of researchers at a German university hospital took fMRI scans of both Fibro patients and healthy controls before, during and after acute pain. fMRI stands for functional Magnetic Resonance Imaging and is a type of MRI scan that looks at how the brain works, specifically which areas of the brain are being used and how much. They found that Fibro patients had different levels of activity in areas of the brain involved in pain processing.

Cognitive Issues correlate with changes in Brain Structure

The cognitive difficulties or "Fibro-fog" that Fibro patients suffer from correlate with changes in brain structure, according to a recent article.

Researchers carried out brain scans of Fibro patients, whilst putting them through assessments designed to test their cognitive function. They found that the Fibro patients had significantly reduced working memory and impaired non-verbal long-term memory and that these, and other problems, correlated with changes in their brain structure.

The study provides more evidence that Fibro is associated with Central Nervous System dysfunction and changes in both the brain's structure and how it works, as well as evidence for the link between changes in the brain and the cognitive difficulties experienced by Fibro patients.

Fibromyalgia Syndrome Research articles from November

Wed, 03 Dec 2008 04:00:00 +0000

Some of the most interesting research relevant to Fibromyalgia Syndrome (Fibro) that has been published over the last month and discussed in the FibroAction Research section is summarised here.

Spa Therapy in Fibromyalgia Syndrome

Spa therapy can be useful as part of a multidisciplinary approach to treating Fibromyalgia Syndrome, a recent article concludes.

A review of research confirmed that spa therapy (including mud packs and thermal baths) should be a valid tool in the multidisciplinary approach of Fibro, as it may be useful for pain that patients experience.

Autonomic Dysfunction in Fibromyalgia Syndrome

Dysfunction of the autonomic nervous system is common in Fibro and may play a part in a number of symptoms, according to a recent article by American Fibro expert Roland Staud MD.

Dysfunction of the autonomic nervous system can be a condition in its own right - Dysautonomia - and it is usually characterised by either Neurocardiogenic Syncope (fainting) and/or Postural Orthostatic Tachycardia (heart beat racing when moving from lying down to sitting or sitting to standing). Palpitations and dizziness are part of this condition and are also possible symptoms of Fibro. For more information on Dysautonomia, try the Dysautonomia Information Network.

Significance of trigger points and tender points

An article was published in a German journal that discussed the importance distinguishing between Myofascial Trigger Points and Tender Points in people with Fibro.

It is important that, in patients with Fibro and Myofascial Pain, both conditions be diagnosed, as their treatment is very different and they may be affecting and/or amplifying and perpetuating each other. Fibro often requires a complicated treatment program, but local, specific treatment of Myofascial Trigger Points, either by manipulative therapy or injection, is often dramatically effective with prompt relief of symptoms. For more information on tender points and trigger points, please see the FibroAction patient article 'Tender Points, Trigger Points and Pressure Points'.

Older simpler treatments effective for IBS

A recent article in the British Medical Journal, that was reported on by the BBC, suggested that old and often overlooked treatments for Irritable Bowel Syndrome (IBS) may be as effective as newer medications.

Older treatments for IBS are often recommended by patient experts, but are frequently overlooked or not considered properly by gastroenterologists, who often think there isn't any positive evidence for their use. A team of researchers has now reviewed the evidence and concluded that soluble fibre, antispasmodics (such as hyoscine), and peppermint oil are all effective.

Fibromyalgia Syndrome Sufferer Gift Ideas

Wed, 03 Dec 2008 12:00:00 +0000

Twelve gift ideas for someone affected by Fibromyalgia Syndrome (Fibro).

All under £20 and many of them helping raise funds for Fibro awareness.

Perfect for supporting someone with Fibro this festive season!

For more gift ideas, see the FibroAction a-store or the FibroAction Spreadshirt store.

'The Complete Idiot's Guide to Fibromyalgia'. This "Complete Idiot's Guide..." is written by American National Fibromyalgia Association founder and president Lynne Matallana, a Fibro sufferer herself. £8.71

A FibroAction Cuddly Christmas Reindeer, with a red Christmas hat and a t-shirt printed with the FibroAction Butterfly. £14.99

A Fibro SUCKS! t-shirt. Tell it how it is and get a white t-shirt or sweater with "Fibro SUCKS!" on the front. £13.90

Cozy Toes Microwave Heated Slippers.These soft, cosy slippers are perfect for soothing tired or chilled feet as they contain microwaveable wheat and lavender. £8.99

'Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties', a book ideal for any younger Fibro sufferer, written by a young woman with plenty of experience of dealing with chronic illness. £8.83

'The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief'. A how-to guide for dealing with Myofascial Trigger Points. It includes a new chapter specifically for massage professionals, as well as a chapter on systematic muscle relaxation techniques. £11.89

Hotties Soothing Backwrap Microwaveable Heat Wrap to help relieve lower back pain. £15.90

Passenger Pillow® (Car and Travel Pillow) with Restore® Memory Foam Crumb Filling From ExtraComfort for comfort and relaxation during any car journey. The travel pillow attaches to any seat belt using Velcro fasteners. £18.99

A memory foam pillow - good bedding can be helpful for Fibro sufferers and memory foam products are especially popular. £19.99

'The Fibromyalgia Coach: Strategies and Support for Your Personal Journey Through FM' by UK life coach and Fibro survivor Pam Wright. £14.99

A PolkaDotGals 2009 Calendar for Fibromyalgia Awareness. £9.99

'Eating for IBS', a book for Irritable Bowel Syndrome sufferers on what IBS is and how to use diet to help control it, by American IBS patient-expert Heather Van Vorous. £9.99

Becoming an Expert Patient Article 6

Tue, 03 Feb 2009 12:00:00 +0000

Accessing treatments and therapies yourself

There are a number of treatments and therapies that Fibro patients can access themselves, but many are not aware of what is available and how to best access it.

In this article we discuss:

Complementary therapies
Exercise
Supplements
Diet

Key points about accessing treatments and therapies yourself:

There are a number of treatments and therapies available, some of which you can do yourself or for free.
Although the NHS provides many complementary therapies and treatments these days, it cannot afford to pay for these long-term.
When looking for a new complementary practitioner of any kind, be sure to go with someone who is suitably qualified and who preferably has plenty of experience in treating people with Fibro.
Exercise can be very beneficial to people with Fibro, but it needs to be done in an appropriate manner.
There is a level of exercise possible for anyone, even if it is only doing simple stretches in bed or from a chair.
Herbal supplements may be of use, but always use common-sense when trying something.
Vitamin and mineral supplements have most effect when you really need them and the symptoms of vitamin and mineral deficiencies can overlap with Fibro symptoms.
Eating a healthy diet is a normal part of taking care of yourself.
Food intolerances can have a real impact on Symptoms and you can check for them yourself.
Diet can help IBS and may be more effective than anything the doctor can give you.

Private complementary therapies

Many complementary therapies are now available on the NHS, in some areas at least, including physiotherapy, hydrotherapy, acupuncture, myofascial release and hypnotherapy. However, the NHS cannot afford to provide these on a long-term basis, so it is common to have to pay for some privately.

Going private for this kind of treatment also has the advantage that you get to choose where you go and who treats who, whereas with the NHS, it can be pot-luck as to whether you get, e.g. a physiotherapist, with any experience of Fibro.

There are a number of complementary therapies, such as heat/cold therapies, baths and aromatherapy that you can do yourself at home (although you should be careful of aromatherapy and try to get expert advice as to what is safe for you to use). Some books that may be helpful include: Leon Chaitow's Fibromyalgia and Muscle Pain: Your Self-treatment Guide; Jacob Teitelbaum's Pain Free 1-2-3; and Clair Davies' The Trigger Point Therapy Workbook: Your Self-Treatment for Pain Relief . These are all available from the FibroAction a-store and are often to be found in local libraries, where you can borrow them for free.

When you are looking for a new complementary therapist of any kind, take your time and be careful in who you choose.

Make sure that they are suitably qualified and try to actually check out how good their qualifications are. It is very easy for someone to do a course, that may not be good at all, or may not be relevant, and then impress potential clients with the qualification or even letters after their name. The title of "Dr" is especially confusing and you should be careful to not assume that this means they are a medical doctor - if you are seeing someone for massage, then them being a Doctor of Divinity or having a PhD in Physics really isn't relevant! The internet is a huge help in this manner. So check out what their qualifications actually are and, if possible, where they have trained and how long their training took - for example, having done an intensive and long massage course at a reputable advanced massage school is far better than having done a 12 week once a week evening class. This is especially important if they are recently qualified: you don't want to be a learning exercise for someone with poor training and little experience!

Similarly, check out which professional bodies they belong to and try to check out the professional bodies. Having to renew qualifications or do continued training in order to be eligible for membership, having scrutiny of members and having a complaints procedure are all signs of a good professional body.

Getting personal recommendations is a great way to find new complementary practitioners, but do take into account whether the person who recommended them has Fibro. A massage therapist that someone with a sports injury and no Fibro finds helpful may not be as helpful for someone with Fibro. Local support group members may know of someone with real experience of Fibro.

Talk to the practitioner before they do anything, preferably before you book a paying appointment. You may end up paying them a lot of money over a long period of time so don't be embarrassed to almost interview them. Ask them if they have experience of people with Fibro and how they help them. Be careful of people who misunderstand the condition, whether that is thinking it is a psychological problem or one that can be cured. In depth knowledge of Fibro is not essential, but it is helpful, particularly for any practitioner that will be hands-on, like a physiotherapist or massage therapist. However, if you feel that they are really taking on board what you tell them about hypersensitivity, exercise intolerance, etc, then that is also a good sign.

To find a complementary practitioner or hydrotherapy pool near you, ask your local support group and your GP. Looking in the local paper may be helpful, as may looking on the internet - you may get many of your questions answered without even having to call. Other support groups, for people with ME/CFS, Arthritis or Neurological Conditions may also be able to direct you. If you have a local branch of the Neurological Alliance then they be able to help you as they will deal with a lot of local support groups.

Exercise

Tell many people with Fibro that exercise can be beneficial and they may think you're crazy, wondering how they are supposed to exercise when they can hardly walk and are in agony, struggling to stay awake. However, doing exercise does not necessarily mean going to do a 'Bums & Tums' class straight away!

There is a good amount of evidence that exercise can help protect you from developing Fibro or from developing such severe Fibro. There is also a good amount of evidence to suggest that for some people with Fibro, individually tailored exercise programs involving aerobic exercise and strength training may be helpful. And not doing any exercise is not good for anyone, particularly people with Fibro: you are more likely to stiffen up, to lose muscle tone, worsening weakness issues, to have problems with sleep and to be more prone to depression. Also, because of the way exercise boosts endorphin levels, it can be very helpful as part of a long-term treatment program for Fibro.

Dr Roland Staud, a leading Fibro researcher at the University of Florida, has developed some guidelines for Fibro and exercise. The general guidelines include:

Choose activities that you enjoy doing, such as walking, swimming, bicycling, dancing and resistance training. Exercise should be fun and social; try to exercise with a friend.
You can exercise during a flare, but reduce the amount of exercise by half, decrease exercise time, resistance, and intensity.
Start slowly, doing 5 to 10 min of cardiovascular exercise and using minimal resistance for strength training exercises. Note - if you are deconditioned and haven't exercised at all for some time, you may need to start at even less time.
Warm up and cool down at every exercise session.
Employ proper technique, which is critical to safe and effective exercise. Concentrate on maintaining good posture while exercising.
Avoid too much exercise - you should feel energized, not exhausted, at the end of an exercise session. Note - this may be difficult if you are very deconditioned or have severe and uncontrolled Fibro. However, as you progress with an exercise program, this should become easier.

Whilst it is good to remember that pain from Fibro does not indicate an injury or damage, such as with a sprained muscle where the pain is to tell you to rest, there are a couple of issues that should be addressed.

A lack of restorative sleep is a common problem with Firbo and this will impact on your ability to exercise effectively, particularly as regards strength training and muscle building. Although a gentle stretching program can be helpful to most people, sleep issues should be addressed for more active exercise to be most beneficial. But do remember that exercise can help with sleep too.

Myofascial Pain is another common problem with Fibro. If you have active myofascial trigger points on a muscle, then not only will it be painful and difficult to exercise that muscle, but you are less likely to be able to strengthen the muscle effectively. If you think you may have myofascial trigger points, then a specialist doctor, or a physiotherapist or massage therapist with the specialist training in myofascial issues, should be able to check you out for these and help release them.

The Oregon Fibromyalgia Information Foundation has some very good DVDs for exercising with Fibro: one on Strength and Balance; one on Stretching and Relaxation; and one on Aerobic Exercises. They all have three differing levels of exercise, up from exercising in a chair for the more restricted patients. Click here for the DVDs.

Supplements

Nutritional or herbal supplements are often promoted to people with Fibro. There is limited research evidence for their use, but some people find them helpful.

It is worth using a few common-sense rules when considering supplements. Always check with your doctor(s) and pharmacist before starting something new - supplements can have side effects just like medications do and some supplements can interact with medications, food or other conditions. Make sure that supplements are helping and that you are not wasting your money - start supplements one at a time so that you can tell which one helps and which one gives you side effects and if you think a supplement may be helping, try coming off it to check - you may just be having a good month anyway. Beware of anything that says it can cure Fibro - it is likely a scam.

Vitamin and mineral supplements have the best effect when you really need them. An all round vitamin and mineral supplement may be helpful to compensate for lack of nutrients in diet, but there are a couple that should be considered more closely.

Vitamin D deficiency is very common, although many people don't have symptoms and may remain unaware of the problem. But as possible symptoms include fatigue, muscle pains and muscle weakness, it is easy to see how these could seem to worsen symptoms of Fibromyalgia Syndrome. It can be diagnosed through a simple blood test.

Low levels of magnesium may occur in people with chronic diarrhoea, conditions that cause poor absorption of nutrients from food, and those on long-term proton pump inhibitors (e.g. lansoprazole, omeprazole, etc). These risk factors are relatively common in peple with Fibro, so magnesium levels should be considered. Symptoms of low magnesium levels include fatigue, vomiting, muscle weakness, tremor and muscle twitches. However, because most magnesium is found intracellularly, a blood test may only show up a low magnesium level in severe cases. Magnesium comes in many forms and some are more easily absorbed than others. If magnesium is not well absorbed, it acts as a laxative (e.g. milk of magnesia). Some people find that chelated magnesium or magnesium malate are more easily absorbed.

Herbal supplements can be useful and may even be suggested by your GP - e.g. for helping you sleep. But do take into account the common-sense points above.

Diet

There is little evidence that a specific diet can help Fibro, but there are some things to think about in relation to diet.

A healthy diet is good for anybody, but it is especially important to consider this if you have Fibro. Not only are you already more at risk of getting run down, but you are more likely to notice the effects of low levels of vitamins or minerals or fatigue from a bad diet. Plus, when you are tired and in pain, it can be difficult to plan and organise healthy food, and it is easy to slip into habits of unhealthy eating. By "diet" I do not mean a weight loss program, but just the way that you eat.

Just as many people with Fibro seem to more sensitive than normal to many medications, some people with Fibro find that they are more sensitive to artificial additives too. Eating a diet with little additives can help some people with Fibro.

Fibro patients often find that stimulants are a double edged sword: although they might boost energy levels in the short term, they may cause more problems in the long-term. Caffeine and sugar are two dietary stimulants to be wary of. If you are noticing that you are needing more and more of these or that your symptoms worsen after consuming them or that you are becoming dependent on them, then it may be worth considering cutting down on these or even cutting them out completely. Some people with Fibro struggle with reactive hypoglycaemia: when you eat something sugary, your blood sugar will rise, but it will then fall, sometimes suddenly and this can cause problematic symptoms. Usually, this hypoglycaemia is outside the ranges considered dangerous with diabetes, but it can still be problematic for Fibro patients. Protein and long-chain carbohydrates release their energy more slowly into the bloodstream, so you don't get the highs and lows that you do with more sugary foods. A diet with plenty of protein, slowly absorbed carbohydrates and fruit and vegetables can help many people improve their energy levels - this kind of diet is known as a low GI diet.

Food intolerances can cause similar symptoms to Fibro and Irritable Bowel Syndrome (IBS), which can make the Fibro symptoms seem worse. Food intolerances are different to allergies. With an allergy, a histamine reaction is involved, with typical symptoms being rashes, swelling and breathing problems. With a food intolerance, symptoms are often more tenuous, making it harder to associate specific foods with specific symptoms, such as lethargy, bloating and headaches. Both allergies and intolerances can vary in strength: it is not that allergies are always worse than intolerances.

There are a number of complementary practitioners that offer food intolerance testing, but these tests are often unreliable. Even if you have a test done, it is best to confirm the results with an exclusion diet, where you cut all possible problem foods out of your diet completely and then gradually add foods back in, one at a time, monitoring symptoms as you do so.

IBS is one symptom of Fibro that diet can have a real impact on. There are a number of books and websites around suggesting various diets - from Atkins to the Stone Age diet - for IBS, but many of these are not applicable for the majority of IBS sufferers. One of the better sources of good information available on what happens with IBS and how what you eat and how you eat impacts on IBS, is the book The First Year: IBS, written by FibroAction Professional Advisory Board member, Heather Van Vorous.

Many doctors these days know to suggest fibre supplements for patients with IBS, but many do not know about what to look for or avoid in these supplements and some patients find that the supplements suggested or prescribed by their doctor can make them worse. This is not because fibre supplements are the wrong idea, but because you need to know what to look for and what kind of supplement is most likely to suit your symptoms. Someone with Constipation-predominant IBS is more likely to be able to cope with a harsher fibre supplement than someone with Diarrhroea-predominant IBS. IBS sufferers may also do better with supplements that do not contain common IBS triggers, such as artificial sweeteners.

Written by Lindsey Middlemiss

Fibromyalgia Syndrome Research articles from January

Tue, 03 Feb 2009 12:00:00 +0000

Some of the most interesting research relevant to Fibromyalgia Syndrome (Fibro) that has been discussed in the FibroAction Research section during the last month is summarised here.

Early menopause and hysterectomy may contribute to the development of Fibromyalgia Syndrome

Early menopause and hysterectomy may be one of the factors that can contribute to the development of Fibro, according to an article e-published this month ahead of print in the journal Clinical Rheumatology.

A higher proportion of Fibro patients had had early menopause (at 45 years old or younger) or hysterectomy when compared with patients with Rheumatoid Arthritis. It was also found that those patients who had early menopause, were more likely to develop Fibro within one year of menopause.

Impaired mobility in Fibromyalgia Syndrome patients

A study by Spanish researchers has found that people with Fibro have more mobility problems than healthy people, and that the more impact their Fibro has on their life, the more their gait is affected. A patient whose Fibro had a large impact on their life, was more likely to walk slower, more irregularly and hestitantly, with smaller steps.

Sexual Dysfunction and Fibromyalgia Syndrome

Two articles have been e-published this month discussing sexual dysfunction in people with Fibro.

The first article reviewed the medical literature on sexual dysfunction and Fibro and found that Fibro is associated with sexual dysfunction in women, with major findings including: decreased sexual desire and arousal, decreased experience of orgasm, and increased pain with intercourse.

The second article was an overview of the impact that rheumatic diseases have on sexual function. The researchers concluded that sexual dysfunction in patients with Fibro could be principally associated with depression, but the characteristic symptoms of Fibro (generalized pain, stiffness, fatigue and poor sleep) may contribute to the problem. The article went on to say that the treatment of sexual dysfunction will depend on the specific patient's symptoms. However, there are some general recommendations made in the article, including: exploring different positions, using painkillers, heat and muscle relaxants before sexual activity and exploring alternative methods of sexual expression.

Impact of tobacco use on people with Fibromyalgia Syndrome

Tobacco use is associated with more pain and other symptoms in people with Fibro, according to a recent article that has been published in the January edition of the Clinical journal of Pain by a team of researchers from the Mayo Clinic and Mayo Foundation in the USA.

The researchers found that tobacco use was associated with greater pain intensity, more impact from Fibro, fewer good days and more days of work missed per week.

Positional cervical spinal cord compression and Fibromyalgia Syndrome

FibroAction Professional Advisory Board member Dr Andrew Holman MD is investigating a possibly important new factor in Fibromyalgia Syndrome: positional cervical spinal cord compression (compression of the spine in the neck when the head is tilted back). His initial paper on the research was published in the Journal of Pain last year.

Dr Holman's research has shown that people who are given the all-clear from a normal MRI of the neck may show compression of the spinal cord if an MRI is done with the patient's head tilted back. This intermittent compression could be enough to disrupt the Autonomic Nervous System and cause Fibro.

For further discussion of this research by Dr Holman, including some of the MRI images, please see the Videos and Podcast section here where there is a recording of a lecture Dr Holman made on December 22nd 2008 at Guy's Hospital, London.

Fibromyalgia Syndrome and cervical trauma in patients with cervical myofascial pain syndrome

A study looking at other findings in patients with cervical myofascial pain syndrome (where the patient has myofascial trigger points in the neck) came to the conclusion that patients, especially younger women, who have had a whiplash injury and who are also displaying symptoms suggesting that the Autonomic Nervous System is disrupted (e.g. skin reddening, weeping eyes, tinnitus and vertigo), should be examined for cervical myofascial pain syndrome and also Fibromyalgia Syndrome.

Doing housework with Fibro

Sun, 08 Mar 2009 12:00:00 +0000

By Lindsey Middlemiss

One topic that seems to come up a lot when people with Fibro get together is "how do you cope with the housework?". If you have Fibromyalgia Syndrome (Fibro) and are working or looking after young children, often you may not have the energy to do housework as well and if your Fibro is more disabling and you are at home all the time, you may feel that you should do the housework, even if you are too ill to work.

It is pretty normal to find a clean, tidy house more relaxing and being able to relax is important when you have a long term health condition like Fibro. So finding ways of coping with the chores can be important for many people.

Here are some tips on how to cope better.

Professional cleaning services. If you can afford a regular cleaner, then this has got to be one of the best options. A professional cleaner will know how to clean thoroughly and quickly - and they will have a lot more energy than you! Often you don't need someone to come in very often to make a huge difference: having someone come in once a fortnight or even once a month to clean the whole house really makes a difference. Some companies send two or three people and in a few hours, your entire house can get cleaned. Getting professional cleaners in is not that expensive: often hourly rates are around £9-12/hour. Even if you can't afford this regularly, why not consider it on an occasional basis for a "spring-clean"?

Social services help. Social services do not provide a cleaning and housework service automatically as they are concerned about maintaining your safety, not making sure you live in a beautifully tidy and clean house. However, if your disability means that you cannot keep the house at all hygienic (which is a long way beyond clean and tidy), then this may be considered. If housework is providing a significant stress to your primary carer, then this is also sometimes considered. If you haven't had a social services assessment, then you can self-refer for one - contact the Adult Physical Disabilities team at your local council.

Pacing. Pacing is an important skill to learn with Fibro: it isn't always easy but it can help avoid a boom-then-bust cycle of energy and pain. If you can work out how to do some housework without causing a major flare in symptoms, then you're going to be able to do it more often. Taking it slowly, taking plenty of rest and stretching breaks, spreading out tasks over multiple days or weeks and trying to do little and often are all things that can help with this.

FlyLady. The FlyLady system is used by countless people around the world with long-term health conditions, as well as many people without any health conditions. FlyLady is a free motivational online service to help people organise and manage a home and their lives better, using a website and daily email reminders. The FlyLady system is based on the concept of daily routines and a focus on small, time- and space-limited tasks so it is often suitable for people with long-term health conditions like Fibro. For more information, see FlyLady.net.

Having the right tools makes all the difference in doing housework with Fibro.

Vacuum cleaners can often be heavy and cumbersome. If you're buying a new one, make sure you try lifting and carrying them in a store before buying. A lightweight vacuum cleaner can be very helpful, especially if you have steps in your house. If you live in a multi-storey building, consider getting a vacuum cleaner for upstairs and one for downstairs so you never have to carry it on the stairs and can just wheel it out.

Electric sweepers are not as powerful as vacuum cleaners, but they tend to be very lightweight and can be ideal for a quick whip round or for keeping things under control between cleaner visits.

Long-handled dustpans can make a surprising difference, enabling you to sweep hard floors without bending or kneeling.

Reacher Grabbers - similar to what litter wardens use - can make it easier to tidy up if bending is a real issue.

Roomba/Scooba. If you can afford them (and it's worth considering if you have to replace your vacuum cleaner) then a Roomba or Scooba is a futuristic way of saving energy. The robotic vacuum cleaners (the Roomba) and floor washers (the Scooba) can be set to automatically vacuum or clean your floors. Click here for more information on these.

Long-handled sponges can be useful for cleaning the bathroom if bending is an issue. They are often available from online disability aids shops.

Cleaning wipes are now available for almost any housework task and they can be very useful in saving time and energy. As well as general cleaning wipes, you can now get kitchen wipes, bathroom wipes (which are often great at lifting limescale), window/mirror wipes, wood polish wipes and leather cleaning wipes. Having a pack for every task and having them available in every room where you regularly need them, such as the kitchen, bathroom and loo, is a good plan. If you can get into the habit of having a wipe round on a regular basis, then heavier cleaning won't be needed nearly as much.

Task specific cleaning products. There is now a huge range of cleaning products to make specific tasks easier, from leave-on limescale preventing sprays for the bathroom to vacuum off carpet-cleaning foam for heavy use areas. If you have chemical sensitivities as part of your Fibro, then check out the eco ranges available in most supermarkets which have fewer chemicals and more natural scents.

Tub trugs. are very useful around the house and their soft, flexible design that allows them to be carried with one hand (and means they don't hurt so much if you knock yourself on them!) makes a real difference. Using them to transport laundry or carry toys means that you can have one hand free for the banisters. And as they come in a multitude of colours, you can even buy Tub trugs to match your colour schemes and use them to throw things into to tidy up.

Storage baskets and boxes. Having plenty of storage items makes tidying up so much easier. Everything from potatoes to remote controls can have a basket or box and hiding things away like this makes your house look tidier straight away.

Some of the items mentioned here available in the FibroAction a-store. This store is powered by Amazon and all products are sold by Amazon or their partners, so you can get the same great prices and offers available on Amazon. However, FibroAction get a referral fee whenever a sale is made through this store, so you can support the charity whilst shopping.

Fibromyalgia Syndrome Research articles from February

Mon, 09 Mar 2009 12:00:00 +0000

Some of the most interesting research relevant to Fibromyalgia Syndrome (Fibro) that has been discussed in the FibroAction Research section the last month is summarised here.

Objective evidence that Fibromyalgia Syndrome patients are as disabled as they say they are

A recently published study has found that patients with Rheumatoid Arthritis and Fibromyalgia Syndrome, displaying similar levels of self-reported disability, have objective evidence of similar levels of activity.

The patients were given a questionnaire with which to self-assess their level of disability and then researchers measured how active they were over the course of 24 hours. They found that those patients who self-reported as being more disabled, using the questionnaire, were seen as being more disabled through the measurement of activity.

Use of resources and costs profile in patients with Fibromyalgia Syndrome

A recently published study has found that Fibro patients attending 5 primary care (GP) clinics in Spain use a considerable amount of health resources and costs.

The economic burden of Fibromyalgia Syndrome compared with arthritis

Another study, carried out in the US, has concluded that the economic burden of illness in Fibromyalgia Syndrome is substantial and comparable to that of rheumatoid arthritis (RA), with Fibro patients having more Emergency Room, physician, and physical therapy visits than RA patients.

Impulse Control Disorder Behaviors Associated with Pramipexole Used to Treat Fibromyalgia

Dr Andrew Holman MD, a member of the FibroAction Professional Advisory Board, has published the first report of compulsive gambling and shopping among patients taking dopamine agonists for the treatment of Fibro. In a retrospective look at patient histories, Dr Holman found that around 1.5% of the patients taking dopamine agonists had problems with compulsive behaviours.

Compulsive behavioural problems have previously been associated with use of dopamine agonists used to treat Parkinson's disease.

Pramipexole remains a useful medication for the management of Fibro in a specific subset of the patient population.

Prevalence of Fibromyalgia Syndrome in five European Countries

An article has been e-published this month discussing the results of a Fibromyalgia Syndrome prevalence survey carried out 5 European countries (France, Germany, Italy, Portugal, and Spain).

The study found that, depending on which measure was used, the estimated overall prevalence of Fibro in the general population was either 4.7% or 2.9%

Fibromyalgia Syndrome and Food

An extended abstract has been written by researcher Jacqui Mayes on her research project using questionnaires to look at links between Fibro and food.

A large proportion of the Fibro patients surveyed in the study perceived that many of the foods contained in the survey affected their Fibro symptoms either negatively or positively, with the foods that brought the highest rates of response being; potatoes 40%, artificial sweetener 43%, beer/cider 45%, white wine 50%, aspartame 50%, sugar 53%, red wine 55%, mono-sodium glutamate 56%, coffee 58%, and bread 59%.

Fibromyalgia Syndrome Research articles from March

Sat, 04 Apr 2009 12:00:00 +0100

Some of the most interesting research relevant to Fibromyalgia Syndrome (Fibro) that has been discussed in the FibroAction Research section the last month is summarised here.

Low levels of antioxidant vitamins in plasma of patients with Fibromyalgia Syndrome

A recently published study has found that the concentrations of vitamins A and E in the blood plasma of patients with Fibromyalgia Syndrome are significantly lower than in healthy controls.

The aim of the study was to investigate the levels of antioxidant vitamins in the blood of patients with Fibro compared to healthy people, as well as the levels of lipid peroxidation (how much fatty acids in the body have been damaged by free radicals, which antioxidant vitamins work against), and the levels of nitric oxide.

The researchers found that concentrations of vitamins A and E were significantly lower in patients with Fibro, and lipid peroxidation levels were significantly higher, suggesting a role for the fat-soluble antioxidant vitamins A & E in Fibro. Concentrations of vitamin C and beta-carotene and levels of NO were not significantly different in the Fibro patients.

Sleep Apnoea can cause Fibromyalgia Syndrome type symptoms in partners

A recent study by researchers in Brazil has shown that the wives of men with sleep apnoea are at risk of developing disturbed sleep and other symptoms of Fibromyalgia Syndrome.

Decreased corneal sensitivity and tear production in Fibromyalgia Syndrome

A recent study by researchers in Spain has shown that people with Fibromyalgia Syndrome suffer from dry eyes and that their corneas do not respond as well to a number of stimuli, including chemicals, heat and cold.

Intravenous lidocaine for Fibromyalgia Syndrome

A recent study has found that intravenous lidocaine infusions are safe and effective in the management of Fibro.

Twenty-three Fibro patients took part in the study, and received 5 intravenous infusions, one a day for 5 days. The dosages of lidocaine given in the infusion were increased over the 5 day period. Significant improvements were seen after the fifth infusion, with the benefits lasting for ast leat 20 days.

Review of Guidelines for the management of Fibromyalgia Syndrome

An article has been e-published reviewing the available evidence based guidelines for the management of Fibro.

Three evidence-based guidelines for the management of Fibro published by professional organisations were identified: The American Pain Society (2005), the European League Against Rheumatism (EULAR), and the AWMF (2008). The researchers found that although they differed slightly, all three recommended a multi-disciplinary treatment, involving both medications and non-medications therapies, such as hydrotherapy, exercise and cognitive behavioural therapy (CBT).

Book Review of The Fibromyalgia Coach

Fri, 01 May 2009 12:00:00 +0100

The Fibromyalgia Coach

By Pam Wright

This is not a book that tells you what Fibromyalgia Syndrome is, no lists of symptoms, no lists of medications or magic tricks that will make it go away or cure it forever. What it is, is an immensely accessible and practical book within which Pam takes an holistic attitude, offering a small steps approach with multiple tools to aid us in coming to terms with the many and often conflicting feelings we have about ourselves as people with Fibro. Its aim is not only to offer help in overcoming the sense of loss which many of us experience on diagnosis and beyond, but to assist towards developing a life that is enabling and empowering in terms of managing Fibro successfully.

This book is practical and accessible on every level. The language used contains no jargon thankfully, it is straightforward without being either patronising or condescending, she uses plain English and she gets the balance just right in my view.

The tools given to aid through the process are well thought through and designed for ease of use and understanding. They range from symptom charts aimed at helping the reader deal with GPs, work situations, benefit claims, etc in a clear and factual manner, to the more personal, addressing the person as a whole, not just the person you are with Fibro, and therefore enabling greater understanding of what will help you best as an individual.

Also, at the end of each chapter, she recaps and reviews the skills and action points already learned which I found very useful given that Fibro fog often disables memory.

The approach is very positive without being unrealistic. The goals talked about really are manageable and achievable. It is up to the individual entirely to decide how much or how little they wish to take on at any given time.

Reading it through when I was feeling particularly miserable and being very pessimistic about my future, it helped me feel more positive in that it showed me there are things I can do to help myself to make my experience and, indeed, my daily life better and more manageable. We are often told we have to pace ourselves, this book shows you how by giving exercises and alternatives and does so in a manner which encourages us to cultivate a kind and gentle attitude to self.

Overall I would recommend this book to anyone with Fibro, whether you are recently diagnosed or whether you have been dealing with it for many years.

Review by Jill Sullivan, Fibro sufferer

Pam Wright is a Life Balance and Health Coach and also a Fibro sufferer herself. For more information on Pam Wright or how to buy 'The Fibromyalgia Coach', please see www.amethystaccordlifeservices.com.

Getting to know Pam Wright

Wed, 27 May 2009 12:00:00 +0100

Pam Wright is a Fibro sufferer, a life coach and author of 'The Fibromyalgia Coach', which Fibro sufferer Jill Sullivan reviewed here.

Jill also interviewed Pam about living with Fibro as a life coach.

Jill: How long have you been living with Fibro?

Pam:How long is a piece of string? The short answer is 2001 when I had to give up teaching because of it, and life changed radically. However, now knowing more about it I realise that I have had individual symptoms at different times since I was a child with ‘restless legs’ and ‘growing pains’. I had glandular fever when I was 18 and an operation on both feet a year later after which I now realise that my pain levels at that time were well out of the ordinary. I have always been aware of certain tender points physically which could be painful when pressed. So the more considered answer is that although the full effect of Fibromyalgia stopped me in my tracks in 2001, I’d probably been building up to that moment since I was a child.

Jill: For many people it seems a grieving process ensues once the diagnosis has been given. Would you say this is accurate and if so, do you think it is useful to acknowledge this?

Pam:A diagnosis can be a relief and a shock at the same time. How you feel is tied up with how much you already know, what health issues you have already experienced, and also in what way the diagnosis is presented to you. The relief of knowing that you haven’t got some terminal illness is tempered by the shock of realising that you are into a time of sudden and unplanned change where nobody can give you definitive answers. Frequently people are left to fend for themselves with very little tangible help. Communication with friends, family, workmates, employers, medical people and benefit agencies is still the single most difficult issue. You are still coming to terms with what’s happening to you on an ever-changing daily or even hourly basis, so explaining how you feel in a way that others can understand is difficult particularly as everyone has their own agenda. The feelings of loss of control and sudden lack of reasonable self-expectation are very real. I would say that it is useful to acknowledge that and to give yourself the space when you need it, but learning to take back control as quickly as you can is a great way of minimising the time that might be spent in a ‘woe is me’ downward spiral. With the right positive support many people move through the stages of grief quite quickly and realise that although life is different, the new way of living is can be even more balanced and fulfilling than before!

Jill: What do you think is the most important first step towards cultivating a positive attitude in relation to dealing with Fibro?

Pam:Fibromyalgia is manageable, but you need to start understanding yourself emotionally, mentally and physically so that you learn to recognise how to improve your lot. Emotionally as well as physically. Think of getting yourself better as very important work at this time. I regarded myself as my own work project (which helped me deal with the loss of going out to work). Take time to work on the real you by getting back to the basics of what makes you tick, what you really want to keep, and what you can let go of either temporarily or permanently. Make a list of what really matters to you. Put ‘My Health’ at the top of any priority list. There are many useful questions to ask yourself, but basically it’s time to bring the real you forward, and take the opportunity to think of redesigning your life and to plan what you need and want. I felt much better once I accepted that Fibro was now part of the new Pam. The old Pam believed that her needs weren’t important in the scheme of things, and that in any event, she was indestructible! Remember that no two people are exactly the same (even siblings) and what works for you may not work for someone else and vice versa. There’s no right or wrong way to deal with this, just your way. You have choices all the way, but remember it is your life, so it’s important to be as informed as possible and make those choices in line with what really matters to you personally at this time.

Jill: For many of us, dealing with GPs etc. has been quite problematic even after diagnosis. What would your approach be to effecting change in this area?

Pam:GPs are people. People are all different. Experience, values, character, self-expectation, life pressure, self-confidence and self-worth come into play in everyone’s daily life. There are lots of ways to effect change, most of which come from a shift in expectation or perception of the problems we are all faced with. We all became so used to being given a prescription when we are ill, that it is a huge shock both for the doctor and the patient when no such ‘magic cure’ is available for conditions such as Fibromyalgia. Some doctors are purely science-based creatures needing proof before believing even the existence of a problem. The fact that a diagnosis involves a process of elimination supports this view. If it can’t be proved, it doesn’t exist, does it? Wrong! Some take the easy way out by prescribing cocktails of drugs in a hurry that really need more time, discussion, careful planning and thought, particularly as trials have shown that two people may respond very differently.

Thankfully, science is constantly moving forward and so is an increase in the enlightened medical view that working together, sharing information and responsibility can help everyone move forward. There are an increasing number of NHS surgeries providing holistic therapies and other complementary medical help which support the idea that the mind, body, spirit connection is a force to be reckoned with on the path to becoming well and getting life back on track. It is up to all of us to take responsibility for as much as we can on our way back to better health, but also to keep lines of communication open. If you have a doctor who can’t or won’t listen, then change your doctor. There are many out there who will listen and whose support is helpful and affirming.

Most of the change will come from over 2 million people in this country becoming empowered enough to speak out when it matters. Plenty of them have already done so, which is why the understanding, acceptance and knowledge of how FM affects lives is forever growing. Much has improved, but there’s still a great deal to do. Communication is the key.

Jill: What have you found the most useful tool in helping you live your life with a positive attitude in spite of having Fibro?

Pam:No hesitation – Life coaching! Choosing to become a coach (even before I’d had coaching myself) was the best thing I could have done. As a divorced woman in my fifties living alone, I remember getting very angry. I love my teaching career, which had been a way of life more than a job! I had come through lots of medical operations and had survived breast cancer a few years earlier. I understood that Fibromyalgia is not clinically life-threatening, but is life changing so there was no way that I was ready to believe that I should just give up and be an invalid for ever more! I decided to take control at a pace I could manage. It took time but I was too ill to do anything else, so what did that matter? Coaching gave me a framework within which I discovered who, what, and how I am, as well as the skills to make realistic goals and plan the small steps to achieve those goals. Along the way I learnt not to be so hard on myself, to have fun, give myself credit for achieving things and to have a focus, enjoy feeling supported (not least of all by myself!), to cope better with conflict and to dare to speak up for myself effectively when necessary. My writing and “The Fibromyalgia Coach” came about through a longterm longing to write. I also had a goal about wanting to share more widely all the positive skills, real-life stories, understanding and experience I had gained from working with many great people across the UK all of whom initially just dared to pick up the phone for a chat. My style of coaching is a down-to-earth, positive way of moving forward which is particularly suitable for anyone who is having a hard time at the moment. The book is like having my support beside you when you need it. Some families are now finding it helpful to work on as a team approach to managing the effect of Fibromyalgia in their lives.

Coaching enabled me to become true to myself in all things, to worry less about competition, other people’s expectations, or how I may be perceived by an outsider. It enabled me to recognise that there are always options and solution-based questions to ask myself in order to move forward. Life challenges don’t disappear when you are ill, you still have to deal with so-called ‘ordinary’ issues, but of course when you feel ill, everything is magnified and seems more difficult than it would be otherwise. I continue to use all the coaching methods on myself, and feel privileged to be well and able enough now to work with others either on a one-to-one basis by phone, through my countrywide talks and workshops, or indirectly through “The Fibromyalgia Coach” book.

Jill: If there was one area that you would like to see changed in order to make life easier for those living with Fibro, what would it be?

Pam:There needs to be a best-practice, co-ordinated approach available in every town in the land in which up-to-date information, choices and options are given, an individual’s (and their family’s) needs and reality are taken into account and a plan of action, care and support is drawn up. Alongside that, a whole raft of complementary and helpful therapies from which to choose according to their preference, and other support (including employment and/or benefit help) would be available in what in effect would be a One Stop Shop. Self-help groups, workshops and fun stuff would be available too, not completely free, but certainly subsidised so as to include everyone who is dealing with the issues of a long term pain and fatigue condition such as Fibromyalgia. That’s the goal, now let’s work out the small steps to achieving it! Everything is possible.

Pam's book'The Fibromyalgia Coach' is available from her website - click here.

Jill's review of 'The Fibromyalgia Coach' is here.

Book Review of Chronic Pain for Dummies

Sun, 29 Nov 2009 12:00:00 +0000

By Jill Sullivan

Chronic Pain for Dummies

By Stuart S. Kassan, MD.FACP, Charles J.Vierck Jr. PhD, Elizabeth Vierck MS

For those familiar with the 'For Dummies' series this one will come with no surprises. It is a great reference book taking the reader through the many and varied causes of chronic pain, what constitutes chronic as opposed to acute pain, whilst also describing in detail how pain works, all written using plain language making it easy to understand, even for those of us not versed in the sciences.

The authors also use a variety of symbols throughout to signify practical suggestions, important facts you need to know, things that can harm and a 'jargon alert' -the latter warning that this part of the text contains medical terminology.

The book is set out in such a manner allowing for dipping in and out, as every good reference book should be. Simply look up the specific topic and area of the body and go from there, although it is written in such a way as to make it attractive to read from beginning to end.

The main premise seems to me to be education founded on the belief that sufferers and those around them should be knowledgeable about their pain, the triggers and what works best for them. In short, empowerment of the patient. I would wholeheartedly endorse this book for achieving that goal - it is up to the individual to take control of their own health and this book could be an invaluable aid.

The only downside is that for us in the UK the medical management section is based on the US medical system. I am not sure how achievable it would be here to "put together an anti-pain team". However, having said that, the information and advice/suggestions contained therein does focus a lot of attention on choosing/finding a good doctor which relates to us all as we can always change GPs if we are not satisfied.

It also addresses self-help in terms of lifestyle, including useful basic exercises, dietry and supplement advice, logs to help identify and subsequently deal with and/or avoid pain triggers, with warnings about bogus treatments included.

All in all a very good and extremely useful book, one I shall certainly be investing in.