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By (user no longer on site)
over a year ago
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My best friend has this. It’s very hard to live with. She literally has to take each day as it comes. If I said do you fancy going out Friday night she can never say until the actual day as she has no idea how she’ll feel. Good days and bad days. Is that how it is for you? |
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By (user no longer on site)
over a year ago
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"Is it effective? I just need my muscles.to work again"
Maybe google it or look on Facebook for a group or something. I’ll ask my friend if she knows of any. Not sure we can talk about the C word on here even in this context x |
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By (user no longer on site)
over a year ago
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What is that condition? I hear more and more people being diagnosed with it these days.
Sure I could Google it, but rather hear it from someone who suffers from the condition. |
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By (user no longer on site)
over a year ago
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It is not just one symptom/set of symptoms - everyone experiences different issues.
Some doctors don't even acknwledge this - and most are unable to line up all the ducks in a row to see the links in the issues.
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By *ky19Man
over a year ago
Plymouth OYO Hotel |
I've lived with someone who had a severe case of this.
She was on disability but had it taken away (in the name of Tory austerity cuts, what a swizz) and is in a difficult position to say the least.
But the happier she is able to be, the more she feels able to do, like even walk 10 miles. I agree very gentle exercise, trying to be moving about most days is good for gently building the immune system, even if sometimes it can be too overwhelming. Being out with people if possible, anything to lift you up a little, all these little things can help build you up.
An approach of if you can't do it all, do what you can do (because anything x 0 = 0) has greatly helped me during my own struggles. x
I agree with Fibromyalgia is definitely real. I don't have it but have been ill enough a few years ago that just lifting my arm up in a simple bicep curl (just on it's own without anything in my hand) was crushingly painful, it was unbearable, I'd never felt so overwhelmed like that before. I think in that moment I experienced what it's like for myself.
Yes it needs treating as a disability. And I believe it's linked to deeper issues which need healing (i.e. not just something you can take a pill for). |
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By (user no longer on site)
over a year ago
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"Are there any other sufferers out there? If so how do you deal with it? I feel as if month by month im getting worse  "
I was on a whole load of pain killers....tramadol, co-codamol, shit like that....and diazepam and amitriptyline.
Now that I’m pregnant I can take co-codamol if I’m absolutely desperate, but when I get to my 3rd trimester I can’t take any at all.
I’m in constant agony. So currently, I don’t deal with it at all |
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By (user no longer on site)
over a year ago
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A lot of fibro and ME is actually low b12 levels.
Unfortunately the NHS is very poor at remedying it but I would recommend you get copies of your blood tests from the GP and join a b12 group on Facebook. Someone there will help unravel the results. |
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