I have my diagnosis at last. Saw the rheumatologist and she confirmed what I thought – Fibromyalgia. Plus widespread arthritis (I knew about my knees already, but was surprised about my hands, elbows and feet, even though I should really have guessed given my knowledge over the years of treating patients). It’s a funny old word Fibromyalgia. What does it really mean?  As a physio I got lots of referrals with this word written on the form. I will be honest, and say that my heart used to sink, knowing that the patient (more than often a woman in middle age) would have widespread pain, fatigue, and was usually deconditioned from not moving much since the pain hit.

Now it’s me! And my God do I understand now………

I don’t know whether to feel better or worse now that I have a diagnosis.  Even though Fibromyalgia has been extensively researched, it is still poorly understood.  I have read and researched it endlessly in my quest for health, along with Chronic Fatigue which is very similar, and there are no clear cut answers.  It is definitely a ‘brain’ condition, rather than tissue damage, and is affected by all sorts of things, emotion and stress being my two challengers.  It can be triggered by huge emotional happenings (my dads death), and physical trauma (jarring speedboat ride the same year).  All I know,  is that for me,  I bloody hurt, ALL the time…  When patients used to say that their pain was ‘constant’, part of me wanted to say “but surely, not all the time?”  Thank god I didn’t say that to my patients, thank goodness I tried to help them to become more functional, better conditioned, more positive, and increase their ability to contribute and enjoy life.

Fibromyalgia is one of the cruelest ‘invisible’ conditions, because I am told constantly how well I look (sometimes on my worst days).  The symptoms can fluctuate even minute by minute, one time I can stand up and my legs work ok, the next, especially after sitting for a while, I can only hobble for a few steps, before I get going into my proper walking stride.  I try not to limp, I try not to moan out loud with pain, I try not to make grimacing faces when the pain hits.  Sometimes I can appear to do loads, then spend the next 2 days wiped out.  Sometimes I can do loads and feel much better.  Sometimes I can do bugger all and feel terrible…… There is absolutely no sense to any of it.  The more I try to make a sense of it, the more distressed I become.

In my dark and painful hours, usually in the early hours when I can’t sleep, I try and talk to myself in the way I used to with my patients.  Sometimes it helps, other times it doesn’t.

Onward with my journey to re-discover my fitter self!