This is going to be blather about my health, so I advise everyone to skip it :)
I went to the rheumatologist yesterday, who was fantastic. He took a full history, looked at my test results, and we talked.
I do have fibromyalgia, as suspected. I probably did all along, it's just that I first went to my GP I think I put fatigue first on the list of symptoms and pain second. That was three and a half years ago. Since then I have had most of the blood tests repeated, to cgeck that I really really don't have various things wrong with me. I had several sessions with a therapist last year who taught me some really useful stress management techniques that I use regularly and that have really helped a great deal. Over the last six months the fatigue has receded very slightly. But the pain has got worse .... and worse....
Basically I feel like I am in the first stages of flu - every day. Most of my major joints hurt all the time and most of my muscles are stiff and sore. I can no longer climb stairs (in either direction) with any degree of ease. Even getting on and off buses requires me to move sideways like a crab. I can't kneel or sit on the floor (not without requiring a block and tackle to get me up again). Anything more than a tiny bit of walking makes me hurt so much it is not worth it. I feel like an old lady, and probably walk like one. I am held together by painkillers. Every day is a litany of generalised aching plus specific pains (the places move around from day to day - this morning I am hurting in my left knee and my lower back, as well as all over - they are different types of pain).
Yet I test negative for all the arthritic conditions, my thyroid function is fine, I do not have diabetes, and although I have a little ostearthritis in my knees it is not bad enough to cause all the problems.
Fibromyalgia is probably the same thing as chronic fatigue syndrome, and they are both labels for a very real condition that can't be properly tested for. There is no test to prove that I do or do not have it. It has been described as arthritis of the soft tissues, only it isn't arthritis. It is most probably a neurological condition.
I;ve been referred to a fibromyalgia clinic, which are apparently almost unknown in Australia but my rheumatologist has a real interest in the condition and knows these people. Hopefully they will come up with strategies to help me manage this. He's also prescribed Naprosin and told me that it is better to take that, plus pain killers as required, than to live on Panadol. It will be tomorrow before I can fill the prescription - I am hoping that it helps.
So, that's my boring health problems. A chronic, incurable, semi crippling condition that no-one really understands. On the other hand it supposedly does not cause degeneration of the joints or the major organs, and won't actually kill me.
5 comments:
So sorry your ill, it's never fun dealing with life's pains. Hope you find relief soon in some form or another.
As a friend of mine has fibromyalgia and I see what she has to cope with daily, I can truly sympathise with you.
I know what pain you're in. I've been diagnosed in 2002 with fibromyalgia. I wish you all the best and hope that the medicin the doc prescripted to you are going to help you
What a bugger!!!! But at least you have a label to put on it, and it won't directly kill you - a bit like CFS, and depression, and a few other 'syndromes'!! And, wonder of wonders, a Support Group!! I suspect you'll get all the ghastly 'this didn't work for me' stuff, as well as the 'have you tried xxxx? Miracle cure!!', but you know how to deal with this! Treatment still seems to be a bit of a black art, much like depression (how would I know, ha ha!), and I suspect you'll spend the next few years experimenting with assorted pharmaceuticals and other substances, alone or in various combinations, until you find the one which works (more rather than less, hopefully) for you! Will ring you and commiserate, when I find my round tuit!!!
My dear friend Taphophile told me you'd just been diagnosed — I got my fibro diagnosis about 3 years ago, but I've been sick for much longer than that. It's a bugger, what more can I say. I sympathise!
As they say the good thing about Fibromyalgia is that it won't kill you, and the bad thing about Fibromyalgia is that it won't kill you.
I've been very fortunate to find a wonderful doctor here in Canberra - my GP first told me I had lupus, and then the rheumatologist barely even looked at me, spoke to my husband, and didn't make any effort at ALL. My current doctor is wonderful. I'm on a whole variety of meds, in very small doses, but they're actually helping!
Invisible chronic illness is no picnic. If you want to discuss stuff off the Blog, post your e-mail on my Blog (http://jejunesplace.blogspot.com/) and I'll contact you. I'm a bit touchy about privacy on Blogger, sorry :)
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