Accessing treatments and therapies yourself

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

In this article we discuss:

1. Complementary therapies
2. Exercise
3. Supplements
4. Diet

Key points about accessing treatments and therapies yourself:

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

Private complementary therapies

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

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

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

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

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

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

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

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

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

Exercise

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

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

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

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

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

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

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

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

Supplements

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

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

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

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

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

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

Diet

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

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

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

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

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

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

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

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

Written by Lindsey Middlemiss