FIBROMYALGIA

i went for my follow up appointment with my new consultant yesterday she said she wants to keep me on the enbrel and methotrexate the only downside to my visit was to be told ive got Fibromyalgia she explained it to me then gave me a book about it which i started reading last night the symtoms are very true in what it says the fatigue at the minute is terrible,i spent last thursday and friday in bed nearly all day and also this monday i put the extra tiredness down to the stress of my dla appeal shame i didnt know about it then.while i was with my consultant i asked her to go through the medical evidence she gave dwp for my appeal there was none given as none had been requested i was well and truely peed off so i went to my local cab office for the opening times and although it was nearly time for them to close i was actually seen by an adviser which really surprised me i was put onto another lady who deals with this type of work and although she cant see me until the last week of july she told me what letters to write and also of what to ask them to send me back so again im feeling abit more positive and keeping my fingers crossed its not about the money although that would help its about the principle so anyone out there going through the same dont give up it is very stressful at times but if you believe in what your fighting for my advice is to carry on and dont let the buggars win

6 Replies

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  • Hi Mildy and welcome to the world of fibromyalgia and RA, you will find that there a quite a few on here with fibromyalgia and RA me too unfortunately, there are a few places you can get advice from, fmauk is a good place to start with their web site fmauk.org.

    Unfortunately fibromyalgia is the same as any other illness when claiming benefits, it all depends how your illness affects you.

    FMA uk have been in talks with DWP and they now say it will take into consideration the full effects that fibromyalgia has on people, there are a few support groups around the country that I'm sure would do their best to help you with your fibromyalgia problems.

    Plus there are some really nice peeps on here too and like I say there are some fibromyalgia sufferers too.

    Good luck with your appeal I hope it goes in your favour.

    Philip

  • I have both, and the fatique is the worst thing. I am always tired and i lack energy as well.

    I can't work now due to both the ra/fibro. This is the hardest thing i find not being fit for work because of the diseases that i have. Sometimes i find it hard to type on here. Best of luck.xx

  • Hiya Mildly,

    Rotten news for you but I absolutely admire and salute you for your determination to be seen and heard. Well done girl. xx

  • thanks for your replies at the minute i am very determined but there have been days when ive wanted to give up because of the stress ive been under and i thought the days ive felt washed out and extra tired were because of the r.a and not because of the Fibromyalgia,ive always worked in care before i married i worked looking after physically handicapped on a young diabled unit so i dealt with everything from gps to social workers i only moved back to looking after the elderly when i transferred to another area when i married so i think thats where ive got my strength from(my husband says stubborness)ive had 25yrs doing this work it was hard to come to terms with when i finally had to give in and go off sick im just waiting for my employers to make a definate decision on whether they are finishing me on ill health or not but as theyve already said theres no other work they can offer me i know the decision and i dont think i could cope with the daily commute on the busy a roads,anyway enough going on for now my hands and fingers are stiff and they are hurting this morning.x

  • Hi Mildy,

    I can completely understand how you feel (read blogs) I worked looking after people and caring for their needs to the point managing a home for them. Sadly this only last 16 months as I was diagnosed RA from the start of this work and it got progressively worse as the work got more stressful, I too was told by the Nurse that I was suffering Fibromyalgia which really explains why the pains and weakness seem so severe at times, I went for a sloooow walk yesterday and obviously to far as I had old (really old) people run pass me as I struggled to return to my car! How frustrating. I haven't got as far as you on the DLA front yet as my form has only just gone in, but I reallly hope I don't have to fight like you as I don't think I have the energy. I am living on SSP only as my charity had no sickness benefit planned and there was no one else who wanted to do my job, so the house closed down and I have no job to go to even if I was well enough. I hope things get better for you as you really are working so hard to keep above the circumstances. Well done keep your chin up...if you can. Ps I woke with a completely cold frozen knee! that's a first.

  • hi caggy when i first came off work i was on ssp then i went onto esa i must admit the drop in my wage coming into the house was quite a shock the little extras you take for granted had to stop along with the holidays and other luxuries when i worked we had no money worries but now we find ourselves struggling but at least we have a roof over our head which is more than some do,i hope you get your dla but if they do happen to refuse my advice is to keep fighting until you get what you think you deserve so good luck i hope everything goes ok for you theres always a light at the end of the tunnel its just that sometimes it takes some longer than others to get there,mildy xx

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