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.