My Journey with Fibromyalgia

fibromyalgia and sound therapyFibromyalgia is an illness that has become increasingly common; it seems every week I meet someone new who has FMS (Fibromyalgia Syndrome) or knows someone who has. It can be debilitating, frustrating, scary, even soul-destroying sometimes and yet so little is known about it. Whilst assessment, diagnosis and treatment are usually carried out by rheumatologists, current medical thinking is moving towards a neurological cause for FMS. There is talk of it being an auto-immune disease too.

I was 20 years old when I was diagnosed with Fibromyalgia, in my last year at university and living 300 miles away from home. In many ways I was lucky; it only took around 18 months from the very first symptoms to get my diagnosis; I lived in Bath, the home of the Royal Hospital for Rheumatic Diseases and my GP referred me there after all the tests he’d done showed nothing. I didn’t have a hugely long wait for an appointment, and it took less than an hour to get my diagnosis. So yes, in that sense, I was lucky.

However, at 20 years old, having just been told I had an incurable, lifelong illness, I was given a leaflet (literally one piece of A4 paper) and told to see my GP if I wanted to look into treatment. And that was that. That’s all the information I was given about what I’d just been diagnosed with. My GP offered me amitriptyline to help with pain and sleep. I tried it. It made me black out. And that was the sum total of the help I got with it.

That was 23 years ago and things have improved a little since then. More people have heard about fibromyalgia. More people have it (which isn’t an improvement in itself, but at least there are more of us able to support each other). Treatment hasn’t moved on that much though, has it? Two or three years ago, I went to my GP begging for help because my symptoms had become so much worse. I’d heard from a Facebook support group that more treatments are on offer these days. So off I went.

I found that there are treatments we can use to help with individual symptoms, but since no-one knows the cause of the illness, treating the root cause is impossible. And so we’re stuck with taking a tablet for this, a tablet for that. I can’t count how many different painkillers I’ve tried. All of them successfully knocked me for six and rendered me incapable of carrying out every day tasks, but none of them actually did a lot for the pain I was in. Perhaps because it’s the wrong sort of pain? I’ve read recently in a medical article that the pain may not really be there, but the brain is receiving erroneous messages telling it that the pain is there.

At their peak, my symptoms had me incapable of walking more than a few metres. I started using a walking stick, but pretty soon I needed a mobility scooter to do the shortest of trips. I’d already given up my teaching career because the stress of teaching was making my symptoms much worse and I was off sick more than I was at work. This was a real low point for me. Fibromyalgia was stopping me from doing things I wanted to do.

A gong bath from Lyz Cooper at BAST changed everything. I had gone for the first part of my CPD training and we were asked to think of something that was holding us back. Of course, I thought of FMS; it was ruining my life. That gong bath was a real journey for me. What I learned (after a day of processing what happened in that session) was that it was not my illness holding me back, but my attitude. Of course, fibromyalgia was causing me problems, and stopping me from doing plenty of things, but I was focusing only on that and ignoring all the things I could still do. It was a real eye opener for me. I was the biggest obstacle in my path.

Since then, I’ve been working with sound much more again. I restarted my sound therapy business. My first client was a lady with fibromyalgia. Her response to sound and the way it eased many of her symptoms was amazing. At first, I was marvelling at the changes in her and didn’t notice the changes in me. These days, I rarely use my scooter (I still get pain when I walk because I also have spinal issues unrelated to FMS). I have more energy and sleep better. I continue to make improvements with my health and I think I’m unrecognisable from the person I was two years ago.

With this in mind I wondered if I could develop a sound therapy session for people with fibromyalgia and although I knew which symptoms caused me most problems on a day-to-day basis, I wanted to see if I was typical. After surveying over 200 people with Fibromyalgia the top three issues came back as pain, sleep issues and “Fibro Fog”. I knew I could make a difference here. Click here to find out how sound may be able to help you.

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