‘It’s all in your head’: a 16 year wait to be diagnosed with fibromyalgia

Guest post by Sarah Cope

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SarahCope

“You’re just getting old, Sarah.” The words of a young trainee physiotherapist, as he explained why I was in so much pain with my back. I was 23 at the time.

Since April 2002, I haven’t had a day when I wasn’t either in discomfort or pain. Over 16 years later, and I still haven’t had a firm diagnosis. In the meantime, I have pursued myriad treatments (osteopathy, acupuncture, the Alexander technique, Pilates, yoga, orthoses, plus all manner of seating options and supplements), all of which have had the effect of either doing nothing in terms of my pain levels, or giving me minimal and short-lived amounts of relief.

I have also pursued a diagnosis via the NHS, having three MRI scans (one of which after I had blacked out with the pain and had to be taken to hospital in an ambulance). The MRI scans showed two bulging discs, but no diagnostic label nor treatment plan came from this.

Sent to the Pain Clinic at UCLH, I was told my a clinician that they’d send me on a CBT course so that I could learn to manage my pain in this way. “It’s not quite like we’re saying it’s all in your head,” the man told me, “but it is, basically.”

Having already attended a ten week CBT course for anxiety (for which I was on a waiting list for three and a half years), I was skeptical about how useful this would be to me.  I had spent ten sessions mindfully examining a raisin and being vicariously traumatised by the stories the other members of the group had shared. If anything, my mental health was in a worse state at the end of the course than it had been in the beginning. I therefore decided not to attend the CBT pain management course.

Last year a neurologist diagnosed me with “chronic pain syndrome bordering on Fibromyalgia” and duly discharged me with no advice about how to look after myself. Having heard about a Fibromyalgia clinic at a London hospital, I asked my GP to refer me. After several rounds of chasing up this referral, I was told that because I didn’t have a ‘concrete’ diagnosis of Fibromyalgia, they wouldn’t see me at the clinic.

I’m now 40. This year, having steeled myself for being belittled and dismissed, I’m having a renewed effort to get a firm diagnosis, and, I hope, a treatment plan. A few weeks ago I saw a neurologist who actually listened to me, took me seriously, and together we came up with a plan. I will have an MRI to rule out Multiple Sclerosis (I have many of the symptoms), and then, as the neurologist put it, “if it’s not M.S, I can give you a firm diagnosis of Fibromyalgia, and refer you to the Fibromyalgia clinic. Because you’re not well. And we need to do something about that.”

I nearly wept with gratitude. Sixteen years of pain, of being dismissed and sent away, still in pain. Sixteen years of trying every treatment available, several of them multiple times (let’s not even think about the thousands of pounds I have spent in the process).

I’m cautiously optimistic that I might be about to turn a corner. But should it have taken this long to get the help I need? It most certainly shouldn’t have. Have I been dismissed because I am – or was, at the start of this long journey! – a young woman, possibly seen as neurotic and clearly ‘coping’ enough to get through life? Most certainly. And that makes me sad, though mostly it makes me angry.

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