It’s not very helpful.

The last time I saw a specialist regarding my chronic illness was back in February. I saw a rheumatologist who diagnosed me with fibromyalgia. Which she then told me was the same condition as Chronic Fatigue Syndrome. (hint: it’s not.)

Last July I finally received a referral to the local pain clinic. I was very pleased as finally I felt like I could begin looking at managing my condition, and finding strategies to get life as back on track as I could. I waited four months for this appointment and went in with questions about diagnoses, about medication, about referrals to other agencies who could help me.

I spent more time sitting on the number 501 bus to the hospital than I did in the pain clinic.

I was told calling my condition fibromyalgia “isn’t helpful” and I should call it “widespread pain” instead.

I was also told I was ineligible for a referral to the M.E. clinic as they don’t take people with chronic pain.

Let’s deal with the first point first. Fibromyalgia is classed by the World Health Organisation as being a soft tissue disorder”. I’m aware that there is extensive debate happening about the accuracy of this but the fact remains it is recognised as a condition. Changing the name of the condition de-legitimises the patient. It says, “if we give you a medical name you’ll think you actually have a problem. So we’ll give you a symptomatic name instead.”

Moving on.

For the second point I’m just going to put this link to the M.E. Association here and quote the first paragraph under “The typical symptoms of M.E./CFS” that states:

Muscle symptoms include exercise intolerance and post-exertional malaise (i.e. feeling shattered the day after undue physical activity), pain/myalgia (present in around 75% of people) and fasciculations (visible twitching of the muscles which sometimes includes blepharospasm/eyelid twitching).

Emphasis mine.

It’s at this point that I have to go and take a bit of a long lie down because the cognitive dissonance between professionals and departments astounds me. In February I saw a rheumatologist that told me I had fibro-which-is-also-CFS and last week I saw a pain clinic doctor who told me I had fibromyalgia “widespread pain” and I didn’t meet the criteria for referral to the M.E. clinic because I had a symptom that is present IN 75% OF M.E. PATIENTS.

I’m fully aware that those of you reading this who also have chronic conditions are probably going, “Bless her, she’s very new to all this, she’ll learn soon enough that you can’t get much out of doctors when it comes to chronic conditions”. I know. It’s sad, and I know.

But. I wanted this appointment to be the start of progress and in some respects it has been. I’ve been referred to the 12-week pain management course and I am going in with an open mind. Because at this point, what else can I really do?


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