Living with ME, Chronic Fatigue Syndrome or Fibromyalgia

Tips and Hints

This new section has been introduced in September 2007 to allow those suffering from chronic conditions to share their tips and hints on living with ME or FM.

• Amanda recommends turning the TV subtitles on, if you find trying to concentrate on both the sound and the picture difficult.
• Mary recommended getting an information sheet to give to your dentist. FMAUK no longer have this on their website, but Devin Starlanyl’s website has handouts to give to all the people who may be involved in your healthcare team, from dentists to pharmacists: http://www.sover.net/~devstar/sheets.htm. They are written with FM and CMP (Chronic Myofascial Pain) sufferers in mind, but given the similarities between FM and ME and the likelihood that many ME sufferers also have CMP even if they don’t know it, I think they could help all members.
  

The Expert Patients Programme (EPP)

The Expert Patient Programme (27 Kb PDF) is a NHS-based training programme that provides opportunities to people who live with long-term chronic conditions to develop new skills to manage their condition better on a day-to-day basis. It aims to give people with long-term illness the confidence, skills and knowledge to manage their condition better and be more in control of their lives.

The Spoon Theory

"The Spoon Theory" describes an ingenious method (using spoons!!) devised to explain the experience of living with a chronic illness. It is worth reading whether you are a sufferer of a chronic illness, such as ME, CFS or FM, or their carer, family, friends or work colleagues.

I got ill in my final year of University. Until then I'd been pretty healthy, although I'd had migraines since childhood and had been intermittently affected by what one physio diagnosed as "weak joints". I was in the University skiing team, I was in the sailing club, I raced yachts and planned to do so professionally, I went to the gym a few times a week, I did yoga.

But then, in the November of my final year, I was in a car accident and got whiplash. Over the following Christmas vacation, I went with my family to Sydney where I caught a really bad stomach bug. As per standard thinking now, I wasn't given antibiotics, but just got over it (or seemed to!) and came home. I went straight into revising for my finals and had some other stress too. By the time finals came I had indigestion almost permanently and had to have special provisions for my exams because the whiplash was causing such problems. I put a lot of it down to the stress of finals.

However, that summer, the gastrointestinal (GI) issues just got worse and worse. I went to the GP, but nothing really got organised or decided until I was quite seriously ill and relying on drinking rehydration drinks all the time to stave off dehydration. One doctor tried to tell me that this was my new normal and there was nothing wrong. Another told me I most likely had a kidney infection and gave me antibiotics. And finally I found someone who listened and tested and who thought I might have Irritable Bowel Syndrome (IBS). He referred me to a gastroenterologist who thoroughly checked me out before confirming the diagnosis. From the results of the colonoscopy, he could tell that until recently (remember those antibiotics for the non-existent kidney infection?) I had had a GI infection - I had basically had had the Australian bug for over 9 months!

A few months later (though it seemed like years), having tried a selection of medications with little positive response, I discovered helpforibs.com and Heather Van Vorous, the chief IBS patient-expert in the US and author of "IBS: The First Year". Her diet, supplement and lifestyle guidelines allowed me to finally stabilise my IBS.

It was Heather who first told me that joint and muscle pain with IBS flares, contrary to what I had assumed, was not a normal part of IBS. Knowing that I had been very thoroughly checked out for such differentials as Crohn's Disease, she suggested I look up Fibromyalgia Syndrome. At this time I was working in London and was getting increasingly ill, with a worse than useless GP. My symptoms ranged from bouts of extreme fatigue and pain to memory loss and fainting. I looked up Fibromyalgia and couldn't believe it - it was me, all my symptoms, every single one. I eventually made sure I had all the blood tests that would be used to diagnose the differentials to Fibromyalgia, such as Rheumatoid Arthritis, and satisfied myself that this was what I had. When we moved house, I went to the new GP and said "I think I have Fibromyalgia" and explained why. She did more tests and sent me to a rheumatologist (at the time I was lucky enough to have BUPA cover) who confirmed the diagnosis.

However, he didn't treat Fibromyalgia and only had a few suggestions of medications to make to my GP. She referred me to the Expert Patient Programme, but by that point I was already using almost all of the techniques taught there, having found alternative means of helping myself through sheer desperation. I had some physio through the NHS, which consisted almost entirely of the physio practising his acupuncture on me for 6 sessions. I eventually started seeing a private physio, which my parents paid for as I no longer had BUPA coverage. This helped me a huge amount and it turned out I have both Chronic Myofascial Pain and Hypermobility Syndrome as well as the Fibromyalgia. However, it didn't help the fibro pain or my fatigue all that much. My GP then referred me to the Pain Management clinic and although I saw the doctor once at the West Berks Hospital, I was then sent to the Royal Berks where I was told that the only thing they would offer me was a place on a course, which they admitted would teach me nothing new; also it was early in the morning meaning I would have to drive through the dark winter rush hour. Refusing to do this pointless course meant I was discharged from the Pain Clinic. The pain management doctor then told my GP that medications do not work for Fibromyalgia. I think he may have been referring to the fact that opiates do not work very efficiently with Fibromyalgia, but that isn't what he said and my GP chose to take him at his word and refused to prescribe me anything further. At this stage I was in severe pain every single day, badly fatigued, with a host of other neurological symptoms, completely unable to work and with no quality of life.

My parents' then stepped in again and offered to somehow pay for me to see someone, anyone, privately if only I could find someone. I had vaguely known about the FM-ME clinic in London for some years but it had slipped my mind. Looking it up again, I learnt about Professor Davies, how he uses a wide range of approaches, many cutting edge. I went to see him in Bristol and liked him from the start: he can seem brusque and his appointments aren't long, but I came out of that first appointment knowing that finally I had found a doctor who knew at least as much as me and feeling that there might be hope. He didn't disappoint. His preferred treatment for Fibromyalgia is dopamine agonists, research having proved that "Fibromites" have low dopamine levels in the brain and that dopamine agonists are a promising treatment. I was warned about the side effects, which are pretty horrible, and in fact you have to start on a very low dose and slowly work up to a decent therapeutic dose because the side effects are so bad. It wasn't much fun, but it also wasn't that long after I started the medications that I noticed a significant improvement in my pain levels and other symptoms: the first real improvement I had had in three and a half years. I have continued to improve, so much so that it has been amazing. I have gone from pain of 8 or 9 out of 10 every day despite pain killers, to rarely needing pain killers at all. I have gone from being so fatigued I could do very little at all to doing major DIY and running rings around my husband. I have gone from having no hope and very little future, to working towards a career, a happy marriage and a full life. All that in less than six months. I still have Fibromyalgia, will always have Fibromyalgia, will always need to pace and to accept that sometimes I will have flares no matter what I do. But now I have a life!

Katy's Story