Introduction and Links

First, and most importantly, this is NOT a medical page about fibromyalgia, although there is a brief description of what it is for those of you who don't know (and I suspect that there are many who have no idea what it is). If you wish to find out more information about  Fibromyalgia (or FMS, as it is often known), and live in the UK, I suggest that you contact:
The Fibromyalgia Association UK, PO Box 206, Stourbridge, West Midlands DY6 8YL. Tel: (01384) 820052.
Website: http://www.fibromyalgia-associationuk.org/   Or try:   http://www.ukfibromyalgia.com/frames.html
Both can supply extremely useful leaflets and books on the condition as well as offering support. Otherwise, try  the following links:
Health World Online  or the news:alt.med.fibromyalgia newsgroup.

So, what it this page about? It aims to bring FM to the attention of a wider public, and to give a personal account of the condition. Hopefully by doing so it will help others who have the condition, but don't realise it, to recognize what they MIGHT have - I want to stress that I am NOT medically qualified, and that I'm very much against self-diagnosis, but in the case of FM it still seems that luck and knowledge can help in getting a correct medical diagnosis. Also, for those who have FM or have only recently been diagnosed, I hope that my personal account will help them come to terms with it, knowing that there are others 'out there' who have the same, or very similar, symptoms and experiences.

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FIBROMYALGIA - a brief description

Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The name is made up from 'fibro' - fibrous tissues eg. tendons and ligaments; 'my' - muscle; and 'algia' - indicating pain. ARC (the Arthritis and Rheumatism Council for research) describe it in their leaflet as "a type of rheumatism which affects the muscles and ligaments but not the joints". The pain may feel as though it affects the whole body, whilst the fatigue can range from general tiredness to sheer exhaustion.

It's sometimes known as a syndrome because of the collection of symptoms that sufferers often experience. These can include unrefreshing, or non-restorative, sleep; stiffness; numbness; tingling; headaches; poor concentration and poor circulation. The symptoms and/or the severity of them can, and do, vary from day-to-day and from week-to-week.

The condition is diagnosed mainly by a rheumatologist or trained medical practitioner checking for the presence of multiple tender points at certain precise locations in the body.

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Fibromyalgia and Me

General Background

Many people with FMS develop the condition after an accident, a fall, an illness or a sudden hormonal change such as giving birth. My own symptoms have worsened since I started the menopause in my late thirties (yes, I know, early but then that's a family trait!). However, I've had FMS to some extent since childhood. The origins of the condition are, it seems, still unknown, but a genetic tendency towards FMS may be a possible factor: no-one else in my family has been diagnosed with it, but both arthritis and rheumatism are not uncommon ailments in my family.

Although I've suffered from tiredness and (originally) occasional pains in my neck, shoulder or hands or general aches since childhood, I was only diagnosed with FMS in January 1998. By that time the condition had become so severe that I had been retired through ill-health from my clerical job in March 1997 (at the age of 45). The medical diagnoses that I'd been given in the 5 years up to that point had varied from Carpal Tunnel Syndrome to Repetitive Strain Injury (RSI) or Work-Related Upper Limb Disorder (WRULDS) to Spondylosis. Previous diagnoses were usually very vague but included trapped nerves, pulled ligaments or more often hints that I was imagining it all.

The latter was the most difficult to come to terms with as I knew the pain and the fatigue were real. It's partly because of the emotional and mental problems that not knowing caused me that I decided to write this page...

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From childhood to January 1998

As a child, my parents often called me lazy and thought I was 'trying it on' when I complained of tiredness. One doctor assured my mother that the aches and tiredness were just a normal part of growing up, and that I'd eventually 'grow out' of them. That, of course, never happened!

I first went to the doctor by myself to complain of dizziness and neck pain when I was about 17. When he could find no obvious physical condition, he became very dismissive and patronizing but did  prescribe me some tablets.  I later discovered that these were similar to Valium: in other words, he'd decided that I was suffering purely from nervous tension and the pills were tranquilizers.

My faith in doctors destroyed, I put up with the continuing discomfort and frequent pains for several years. I was in my mid-20's before I returned to a different doctor to complain of increasing neck and shoulder pain. Although he was sympathetic, the diagnosis, after X-rays had shown nothing, was a trapped nerve. I was told to take Aspirin and wear a collar. The latter didn't help at all, and it became obvious that I was allergic to Aspirin. As the pain had decreased slightly and become liveable with, I didn't bother going back.

During my late 20's I began to suffer with frequent numbness, tingling and pain in my hands and wrists as well as the pain in my neck and shoulder. My wrists, which have always been weak, often ached continuously and I found it more and more difficult to undo jars, wring out wet clothes and turn on taps. Carrying bags of shopping and other heavy items became quite painful. Visits to doctors were never satisfactory. When I asked if the pains in my hands could be linked to those in my neck, I was told no. Possible rheumatism, trapped nerves and pulled ligaments were some of the more frequent causes listed for my problems. It was also during this time that frequent headaches and migraines occurred, again both regarded as a separate problem.

In my early 30's I had a course of treatment from a massage therapist after my shoulder 'froze' when playing tennis. He noted that my shoulder muscles were extremely knotted and recommended some exercises (some of which I still do). He also advised me to stop playing racket games such as tennis and badminton, and to rest when the pain became bad. His turned out to be the best advice from a  medical practitioner until 1998...

When I was 38, I started a job as clerical assistant at the Sheffield Hallam University. It quickly became obvious that word-processing (supposed to account for only 40 to 50% of the work) was to be the main task. After several weeks of probably 90% or more of my working day being on the keyboard, the pains in my wrists, hands, neck and shoulders became acute. I was also getting extremely tired, so much so that to do anything after work was an extreme effort of will.

Between then and the time I finally gave in and retired from work, I changed doctors (due to moving house) 3 times. I spent many fruitless hours seeing specialists in the osteopath departments of the hospital - one of them was so patronizing that he almost convinced me that all the pain was purely 'in my mind'. I increasingly struggled to keep my job and to ignore the problem. One bright spot was the physiotherapist at my (current) doctors surgery. She was sympathetic, recognized my pain for being real (although like others was unaware of the cause) and tried various treatments (including acupuncture) to help me. It was because of her that a new doctor at the surgery eventually took note of my complaints of fatigue and referred me to the rheumatologist.

Before that, however, my lower back and legs also started to cause problems. In October 1996 I suffered similar symptoms to sciatica and was forced to take time off work. My employers, whilst sympathetic, made me see an occupational therapist and put pressure on me to return to work. Although the pains in my legs and back had actually increased, I did go back for a short time. But, even working fewer hours, it soon became obvious that I wasn't going to be able to continue, and I had to take more time off. The decision to finish work came in March 1997. It wasn't until January 1998, however, that I eventually got to see the rheumatologist and was finally given the correct diagnosis for my condition: severe fibromyalgia.

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Since January 1998...

Having a name for the condition has helped. I also have it confirmed that the pain, tiredness and other symptoms are all linked and not figments of my imagination. At least now I know what I'm fighting, although I had to research on the net and write to the UK Fibromyalgia Association for detailed information.

The first thing the consultant did was to make an appointment for me with the specialist physiotherapist at the hospital. Liz helped me a great deal: not just by giving me a set of stretching exercises but by allowing me to discuss the problems and to set out an agenda for coping on a daily basis. It gradually became apparent that returning to work was not an option; that I needed to learn to control my condition by accepting my limitations, not pushing myself too much and by pacing myself carefully. The sessions were extremely useful: but like all good things, they eventually came to an end when Liz was unable to help me further.

My GP has been more understanding now that a correct diagnosis has been reached as well - like me, he was probably struggling as to how to treat the symptoms. But visits to the GP are limited. When it comes down to it, I'm on my own. The hard work of self-help, self-control and sticking to the exercise routine is down to me, and no-one else.

That feeling of being alone is probably the hardest part. My partner is wonderful, as are my family and close friends but, like anyone else who doesn't have FMS, they can't fully understand how it feels. I don't think anyone without the condition can. I'm not ashamed to admit that I do get depressed: it's not a symptom of FMS but it is caused by the continuing frustration, pain and fatigue. The anti-depressants subscribed by the specialist to help improve the quality of my sleep (disturbed sleep is another common factor amongst those with FMS) were helpful for a short while, but their effects soon diminished and, after consulting my GP, I stopped taking them.

I try not to let FMS dominate my life, but there are times when I have no choice: I have 'non-days' when trying to do anything is beyond me. Then I just have to relax and let sleep take me or listen to music - sometimes even watching TV becomes an effort.

But there are good points: because I don't go to work  I don't get the stress or hassle and can read, play on the PC, watch TV, meditate, do my exercises, go for short walks when able and am generally my own 'boss' (though I miss the social side of work a great deal and part of me would love to be in paid employment again). I can also study and concentrate on my writing: albeit on 'average' to 'good' days only. Life may be difficult at times, but what the hell - like the poster on my wall says:
"Don't take life too seriously: it's only a temporary situation"

UPDATES
October 2003
I have recently had acupuncture at the local hospital, and this has helped to ease the pain in my back, allowing me to walk further than before without having to rest. I'm also going to be starting on a Pain Management Programme, again at the local hospital, that I'm hoping will help me improve my relaxation techniques as well as give me general assistance with coping.

December 2003
Changed my medication from Ibuprofen to Co-Codamol on advice of GP, and occasionally use Ibuleve gel or cream. However, I try not to take any pain-killers as I don't want to become dependent on them.

July 2004
The Pain Management Programme was extremely helpful, and the physiotherapist was able to give me some extra exercises to try. Meditation and new relaxation techniques have helped me to manage my pain better. Also, I no longer feel so isolated, as the clinic encourage people to keep in touch. I've joined their patient user group in the hope that I can give something back to the clinic, and I am still having acupuncture every 3 or 4 months.

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My symptoms
 

• Pain, general flu-like aches, from head-to-toe: often very specific pains in eg. back, neck, legs, hips, hands, wrists, shoulder, including 'burning' pain.
• Fatigue - not just tiredness, but exhaustion.
• Numbness, tingling, pins & needles: especially in arms, hands, neck and face.
• Difficulties walking.
• Stiffness, especially first thing in the morning and after sitting in the same place for any length of time.
• Headaches and migraines, occasional dizziness & vertigo.
• Disturbed sleep.
• Poor concentration.
• Difficulties with writing; opening jars, bottles; turning on taps; getting coins from my purse etc.
• Carrying and lifting is painful, as is typing for long periods, cleaning, ironing etc.
• Have 'bad', 'average', 'good' and sometimes 'non' days or weeks - condition is so variable that it's impossible to plan anything with certainty.
• Have to rest frequently.
• Oh, and I'm also dyslexic - but that's another story! 

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