My Fibromyalgia Diagnosis – 22 Years of Pain


I talked in my last post the odd dreams I have thanks to Fibromyalgia. After reading this article today, I decided to write a bit more about my experience of having FM, at least from a medical point of view.

When I went to university in 1992, I was a pretty healthy 18-year-old, looking forward to what lay ahead. I threw myself into uni life (and not just the drinking side of it, though there was certainly plenty of that!) and got involved with the student union. I was on the Entertainment Committee, tasked with cooking for the bands that came to play. It was good fun, and most memorably, I got to sit down and eat vegan chilli with Julian Cope (who also “borrowed” the last of my Rizlas). He was a really nice bloke, genuinely friendly. I was also appointed to be Women’s Officer, no small feat in a university that was 75% female. By the end of my first year, I was coordinating a national student campaign, briefing the NUT and the media about our cause. I was also working 16 hours a week in trying to make ends meet. Somewhere in amongst all that, I was just about holding my head above water in my degree too.

Julian Cope ate my cooking and shared my Rizlas!

Julian Cope ate my cooking and shared my Rizlas!

Not much changed in the second year except that things got busier, I was working more hours. Then a stomach bug went round at uni. Everyone I knew went down with it. Although the D&V lasted just two or three days, it left you feeling run down and lethargic for about ten days. So we all got it, and we all bounced back. Except that I didn’t. I just carried on feeling ill, and had incredible pain in my right elbow, which couldn’t be explained. I had no energy, and either couldn’t sleep at all, or could sleep for hours and hours and not feel rested. My GP started doing some tests. I can’t remember how many blood tests I had to have, but there were lots, not least because five vials of blood were lost and they had to be done again. Unfortunately, my veins started to collapse as soon as a needle came anywhere near me and blood tests became incredibly painful. I bruised up and down my arms and they struggled to fill even half a vial. After all that, every test came back clear.

The disease was first identified in the 1990s as a catchall for patients who reported experiencing life-disrupting discomfort but who seemingly had “nothing wrong with them,” pathobiologically speaking. To be diagnosed, a patient must exhibit pain in 11 of the 18 tender points when pressure is applied.

In January 1994 I was sent to see a consultant at the Royal Hospital for Rheumatic Diseases, known locally as The Min (it’s in Bath and used to be called the Mineral Water Hospital and is opposite the Roman Baths). I walked in to my appointment having no idea what to expect. After a quick chat with the doctor he said he wanted to do a test and asked me to stand up. He pressed his thumb into various points on my body – the 18 tender points associated with Fibromyalgia, and made a note of which ones I felt pain in, which was all but two. So much pain, that I came out of the appointment in a wheelchair. And that was it. I had a diagnosis of Fibromyalgia, which I’d never heard of, a leaflet telling me a bit about it and the doctor’s words “There is no cure for Fibromyalgia” ringing in my ears. I was 19.

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That was the last time I saw a specialist about my fibromyalgia. Referred back to the GP, I was given amatryptalene in a low dose because the side effects had proved to be useful in treating some of the symptoms of Fibro. It lowered my blood pressure and caused me to black out, so that was crossed off the list. There was nothing else on my GP’s list of possible treatments, except a letter giving me access to the hydrotherapy sessions at the local sports centre. It was a bit like swimming in a giant bath – the training pool was heated to 38°C which is kind to tender joints. It was generally me and a handful of OAPs, but I didn’t care. It was bliss and I went often. There was some grumbling among some of the other users who could still remember when the hydrotherapy sessions were held in the actual heated spa waters of the Roman Baths, just like in Austen’s books. But that had stopped and some weren’t happy. “They never did prove it was the water that killed that girl”, I was told!

Where the hydrotherapy sessions used to take place

I moved from Bath in 1998 and that was the end of my access to hydrotherapy. My new GP sent me to a sports injury clinic for some acupuncture. It worked wonders, ridding me of pain in my legs for a couple of years, but not before I had endured over two months of intense pain and bruising in my legs. (I had 6 sessions, and the pain lasted a couple of weeks after they ended. It’s not normally painful as I understand it, but for me it was agony).

I had acupunture in my left knee

I had acupuncture in my left knee

That was the last treatment I had. In moving around the country, I had a number of doctors and met some of those who don’t know much about Fibro, including the ones who told me I should start cycling (about the worst thing I could do for my knees) and the one who asked why I hadn’t grown out of it yet!

I’ve had the same doctor now for a little over ten years, and he’s a fantastic GP, but he’s told me several times there is nothing he can do for me with regard to the Fibro. Earlier this month, in the worst pain I’ve ever had in 22 years of having this illness, I went back. I saw a trainee, who was very knowledgable about Fibro and gave me a choice of medications to try to work on the pain. Unfortunately, I wasn’t able to see her again and saw someone else this week, who told me to start walking and swimming and seemed surprised when I told her swimming in normal water makes my pain worse, as does walking. Hey ho.

Treatments have progressed very little in the last 25 years and not much more is known about Fibromyalgia, but it seems to be becoming more common. When I was first diagnosed, no-one seemed to have heard of it, but now I know lots of people with it.

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7 comments on “My Fibromyalgia Diagnosis – 22 Years of Pain

  1. Very informative post, thank you for sharing, I hear a lot about Fibromyalgia but know very little about how it affects people, know I know a little more about it, thanks to you.
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    • thanks for your comment. It does seem to becoming more well known, but it’s such a “big” illness, in that it affects people in so many ways, that really we all know so little about it.

  2. I was diagnosed with Fibro some years after I first became ill in 1992. I got worse and worse and the NHS was no help. Eventually in late 2006 I saw a photo of a rash the same as one I had had in the 90s, investigated and it turned out to be caused by Lyme disease. The NHS aren’t really interested in that so I want to a private doctor, had blood tests sent abroad and tested positive. After sixteen months fairly aggressive treatment I was substantially recovered. Research in the USA is finding that ME, Fibro and a few other illnesses are actually caused by Lyme disease. Might be worth you getting checked out. The Facebook group LymeDisease UK is a mine of information and their discussion group had numerous members who have been diagnosed originally with Fibro. God luck.

    • interesting to read this – I got similar information from a completely different source just a couple of weeks ago. Sounds like it might be worth me looking in to. Thanks

  3. Hi, I was just reading your blog about craft fairs then found this one about Fibromyalgia which is interesting. I have had it for 15 years since being given Statins at the age of 55 when the NHS started giving them out as preventatives. Within 3 months I was flat on my back with similar symptoms to a stroke, muscles collapsed could hardly walk for a year, could barely think as head so bad, I had to shut down my business and stop teaching, I was a nutritional therapist and taught nutrition, but was incapable of functioning. We moved to the coast and I took a year out, but it has been an uphill struggle ever since on and off. I saw rheumatologists who tried to get me to take statins again, and one who told me to exercise until I was red in the face, it seems doctors just have no understanding of the condition. I started a supplement plan which I still continue including aloe Vera which really helps with pain and just pace myself, do things when I can and rest when I can’t. I had several years with barely a flare up until this year when I stupidly agreed to have the flu jab after resisting for a couple of years. Really bad leg muscle problems, fatigue, skin lesions, all the things I had forgotten, but the immune system is less able to cope now. Let’s hope some day there is a more research on these conditions to find help, but we seem to be on our own

    • doctors who understand FM are few and far between. At a recent visit to the GP it was described as “a bit of pain and you’re quite tired”, by the same doctor who suggested I go cycling despite the fact that climbing stairs is a movement my knees often struggle with. She also suggested swimming, but when I said I need a heated pool for that, she looked at my blankly, rather than refer me to the local hydrotherapy sessions!

  4. @ Ros. To the best of my knowledge, it is not an established test for Fibromyalgia, although it has been heavily marketed on the basis that it is such a test. I agree that it may be a big win for somebody but not necessarily for people in pain. I suggest you wait until Dr Gillis publishes the results of his latest research in a peer-reviewed medical journal.

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