Stupid quote of the day on Fibromyalgia.

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.

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7 responses to “Stupid quote of the day on Fibromyalgia.

  1. Ah, darling, it sounds terrible.
    They should really make sure that all their stuff is accurate. I think whosoever writes these things should speak to people with Fibro and not just parrot rubbish. It’s bad enough having the blighted thing without being told a load of old codswallop too!

    • The best stuff on just about anything whether fibro, cancer or type 1 diabetes that I have ever read, was written by people who have been through it or have it.
      Or at least by people who, as you say, talk to those who know what it’s like.

  2. There is nothing more frustrating that reading information about a condition you have/one of your loved one has that is incorrect or misleading. It drives me up the wall when I have to spend time correcting misconceptions even with other health professionals. There is so many misconceptions about type one diabetes especially with nurses that treat type two patients. So many of them think they are treated in the same way.

  3. I totally agree! One of the hardest parts about this disease is dealing with the people (especially “experts”) who tell you that you’re “fine” – or that your life can be perfectly normal again if you just ______ -( fill in the blank). I would love to be able to live like I used to… I’d even love to be back at the quality of life I was at just a few years ago — which plenty of people would not enjoy… but compared to now, I was just able to *do* so much more. Today I did 2 loads of laundry and a load of dishes, and I’m so wiped out just sitting here is exhausting… typing etc… none of this should be so hard. There has to be a way to get people (especially doctors) to understand the reality of life with Fibro… the idea that it’s “not debilitating” needs to be wiped from all records everywhere!

  4. Oh Nonna the outright nuttiness of some medics. The ideas they have on fibro are “all in their heads”. I’ve been told it will just go away; it can be cured and that it isn’t autoimmune- all by doctors. One doc recently told me I should take paracetamol as it’s a much underrated drug. I spent a years take co-codamol and that didn’t work at all so how paracetamol alone is supposed to work escapes me.
    God bless you and bless you a little extra for each day you get through and for each thing you do for your husband and children.

  5. *hugs* I’d expect this kind of ignorance from some randomer on the internet, but it’s APPALLING that this is coming from NHS-endorsed so-called-experts. How dare they dismiss your problems! 😦

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