Fibromyalgia Action UK
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I was diagnosed with fibromyalgia the beginning this year after years of pain. But over the last 5 years it's been the constant fatigue, depression and unbelievable depletion of physical strength I now have that invades every aspect of my life to the point I don't know which way to turn anymore.

When I'm not in work I'm curled up in agony or unconscious. I don't class it as sleep anymore as it is nothing like the sleep I remember.

It's now got to that 'catch 22' situation where I can't afford to stop working and sit around worrying myself in to a grave for a PIP claim that my never be successful or work until I literally collapse.

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Hi I was so so fatigued when I was first diagnosed with fibromyalgia- use to lay about all the time no interest in anything - awful pain - and the more I went to bed more I hurt - - I developed an awful cough and sinus problems as well and high temperature (then cold). Anxiety and itchiness - it was a bad time - then I found out you can develop intolerance with fibromyalgia- over the pass 3 years I have changed my diet completely - I now have no wheat, gluten , sugar ,and process foods - my health is so much better - fibromyalgia is still a big problem but fatigue is nearly gone (except if I overdo it). - all I can say it worked for me - as soon as I go back to any of these I get so tired. good luck. Neese

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You are the first person who has ever said anything about what I call the hot and cold spells, out of all of the people I have spoken to who have Fibromyalgia I was the only one who had these. My mother had been diagnosed with MS for 42 years and after being given an MRI and CAT scan for a routine check on how her MS was progressing she was told that there was no evidence that she had ever had MS. She was tested for Hughes Syndrome and told that she had that instead. she was the only other person who I knew who had these hot and cold spells. I did read somewhere that there was a connection between Hughes Syndrome and Fibromyalgia, and that if somebody in the family had Hughes then it was quite likely that somebody else in the family would have Fibromyalgia. I am learning so much from this forum that I didn't know.


I can feel very very cold in my bones need a hot shower and heating up and a blanket to get warm - I have had no episodes of it since strict diet x


I go from freezing cold, then suddenly boiling hot, I am going to look into the diet thing. thank you


Its pretty straight forward - no gluten, wheat process foods and minimal sugar , I do all my own baking I use date syrup instead of sugar and rice and polenta flours etc - I eat pretty plain - fruit, eggs veg ,white meats and lots of fish - I fall off the wagon now and then but then I pay for it (I get extremely tired and hot or cold and sometimes flu like symptoms). good luck Neese x


Hi Nick10 welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.

I'm sorry your in so much pain and struggling so much at the moment. If you are this bad my friend you are just driving yourself into the ground. I know there are a lot of horror stories about benefits my friend but there are also a lot of good stories too. Only thing is, they don't publicize those because they don't want you to claim them & it's all a deterrent.

Your health really is more important and no one is saying its an easy journey but maybe you could have your doctor sign you off sick for a month and see how you are then.

You can assess a disibility advocate to help you with the whole process or CAB help with benefits advise.

Please do go look at the mother site where you will find all the information you need and lots of useful links on Fibro and I look forward to chatting to you on the forum.

Peace, luv n light

Jan xx

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Hi Nick10

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you


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