The NHS put out a little booklet put together by ARC the Arthritis Research Campaign about Fibromyalgia. Although Fibro comes under the umbrella of rheumatology, it has very little to do with arthritis so I am at a loss as to why ARC produce the booklet in the first place.
It’s not a very accurate booklet in lots of ways but this quote really gets me:
There is no cure for fibromyalgia but with the help of your doctor and family, it may be possible to find ways of managing your symptoms so that you can continue with your normal activities. Your doctor may be able to help you by making the diagnosis of fibromyalgia and reassuring you that despite all the pain, you don’t have a condition that will cause permanent disability.
The bold is my emphasis. The first time this was read to me I was sitting in my wheelchair!
Most people with fibro only get their dx once “normal activity” has become next to impossible. We just have to learn to adjust to a new “normal” for us. Being in daily pain for the rest of your life IS a permanent disability- and that’s before so many of us need crutches and wheelchairs.
The booklet also assumes that all fibro sufferers also have depression. In fact around half of those dx with fibro also have depression, some before the onset and some in reaction to the constant pain. As around 50% of us don’t have depression there has been some initial research into whether those of us without depression suffer less pain or are able to deal with it better – but there are no answers yet.
The last flare took a little more away from me. It’s harder to walk and I’ve had to get used to more pain on a daily basis. I can do it. But to have some “expert” write that I can have “normal activity” (it took me 3 hrs to make a shepherd’s pie yesterday) and that it wont disable me is not just inaccurate. It’s shockingly cruel.