Ok, so the title’s not entirely true. I do still have colitis – that’s never going anywhere, unfortunately – but, it now seems that the last eight months of ill health have been the result of fibromyalgia not a colitis flare.
The diagnosis of fibromyalgia, which was mentioned a few times by my gastroenterologist and also at a first rheumatology appointment, was confirmed by my rheumatologist a week ago today. I knew it was coming, because the rheumatologist had already called to reassure that my spinal MRI was clear and that there was no suggestion of inflammatory arthritis in my blood test results. Even so it was a shock to hear it confirmed. I ended up shedding tears of relief that the symptoms I’d been experiencing since February finally had an explanation, because I knew that my – and everyone else’s – initial assumption that they were colitic in origin was not correct. In fact, my bowel has, throughout, been very well behaved and it just didn’t *feel* like colitis.
I’ve not really had time to think about it much, because work has been relentless, and I’m still not sure how I feel about the diagnosis. The other options were something I knew how to deal with…autoimmune disorders, like my colitis, with effective treatments that I’ve regularly written about in my work over the last four or five years. Ok so the inflammatory arthritides have long-lasting effects and complications, but they’re ‘solid’ diagnoses. Some of the treatments can also be used to treat colitis – two for the price of one, as it were.
Fibromyalgia, on the other hand, is a wishy washy diagnosis. The name means pain in the muscle and connective tissue, but why it develops isn’t really understood. It produces a vast range of seemingly unrelated symptoms, which wax and wane for no apparent reason. I am positive for at least 12 of the 18 tender points used to diagnose it, but I’m actually feeling the best I have for some time, so I also feel a bit of a fibromyalgia fraud at the moment. Which also perhaps explains why it hasn’t properly sunk in yet. My doctor has advised that I increase my physical activity and exercise ‘aggressively’. I have to take measures to improve my sleep ‘quality’, as there’s a belief that lack of restorative deep sleep may be involved. A low-dose antidepressant may be an option to help with pain and inevitable depression. But it’s all very ‘vague’!
The other frustration is the possibility that the increase in azathioprine dose, multiple courses of evil steroids and a new-to-me drug – sulfasalazine – that was introduced to help my joint problems but makes me nauseous may have been unnecessary. Which also means that the weekly blood tests to monitor my erratic liver function may also have been unnecessary. I’ll only have the answer to this when I next see my gastroenterologist.
In the meantime though, I have been very touched by the good wishes of friends – with and without fibro – and the offers of support and advice from previously unknown people with fibro who have seen my tweets about the diagnosis. Thank you all x