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I suffer from fibromyalgia for over 11years.It started o...

Posted , 5 users are following.

Guest
Guest

I suffer from fibromyalgia for over 11years.It started off at first as a small uncomfortable pain,in under my shoulder blade like a burning feeling.Over the years it has spreaded all over my body,it is true when people say its like a bus ran over you.It has affect my whole life,each day i feel like i am a 90 year old women,i am now 36 years old,a good day for me is having a little less pain than others,I could be like this for the rest of my life,as well as pain their is lots & lots of other crippling symptoms,i feel like endding it all most days,just to be pain free,its my children that keep me going,it seems the spirt inside that was me has gone forever,never to return again.There is no cure for this diseases,just a lot of medication which might or might not work.I have been attending my local gp,who made me feel for years like a second rate patient,it was hard to get good infomation on fms,I found a local web site for people with fms it help me so much,to talk to people like me,to go to meetings about fms was great,i felt like a person again,they advised me to get a differnt gp who understands fms,which i did i found a wonderfull gp who treats me right.and most imporant he nows fms is a painfull life changing illness,to be treated and not just to get on with it attitued like my last gp.The point i am making let their be more help,understanding and most of all more edcation,and surport for fms by the medical and goverment for us,it took me 11years for me to get an understanding gp. sad

[i:c26d642d02]This message was automatically imported from the original Patient Experience[/i:c26d642d02]

0 likes, 7 replies

7 Replies

  • Guest
    Guest

    Posted

    I too have fibromyalgia and it has been sheer hell trying to live with it and also to try and cope with ongoing pain, fatigue, pins and needles etc etc. The only thing that has helped me and it has made ahuge difference is Pregabalin - anybody else had success with this?

    Mo

    [i:665f73f3aa]This message was automatically imported from the original Patient Experience[/i:665f73f3aa]

  • sonshine
    sonshine

    Posted

    What is Pregablin? I too have fibromyalgia and have good periods and then really bad periods sore all over, tired. pins and needles then last but not least depression cause doctor keeps saying oh it just your fibromyalgia and this is on going for 14 years.
  • Guest
    Guest

    Posted

    I too take pregablin ( lyrica) for fibromyalgia & it has made my life easier over the past year since taking them 600mg daily,i would recommend them,they are actually an epileptic drug although i don't suffer with epilepsy! i had to research them myself though as i cant take any painkillers! i also have ME-chronic fatigue syndrome & they seem to be good with ME too ;-)

    had fibromyalgia about 11 yrs before being diagnosed 3 yrs ago!

  • chalky
    chalky

    Posted

    Hi update on my experience with fibromyalgia and DLA for the second time. This time CAB helped me fill out my form and I got as far as having a medical on GOOD FRIDAY, only to be turned down once again . The doctor that came was only interested in my depression and fatique he said he understood fibromyalgia but he would not listen to the amount of pain I was in and the amount of medication for the [pain I take each day I am on 22 tablets a day for differnt illnesses. The reply that came back was that I could walk 200 metres well I live in a small 2 bedroom bungalow and I was asked to walk from my lounge to the bedroom all of 4 metres (that's being generous) and it was deterimed that I could walk 200 metres from that assessment. I have rung to request a GL24 which arrived 24hrs later. I have asked for a copy of the doctors report that was done at home to be told that it will take 1MONTH for me to receive this what a surprise when you only have a month to return your evidence for an appeal. Thanks for taking the time o read this if there is any ideas out there let me know thanks chalky
  • SES
    SES

    Posted

    Hi Chalky..... keep fighting them hun as it is this benefit is one that is not easily given, and as it is they reckon that its not the diagnosis that they are concerned about it is how you are effected on a day to day basis..... I am also appealing about my DLA so I understand where you are coming from..... I had an oral appeal and a written appeal which was the first and then my case went to commissioner ........ I was told that I can re-apply in the meantime and so I have and so I am awaiting a decision once again.

    Hope all goes well with you too x.

    Kind Regards

    SES x

  • sqaw2sqaw
    sqaw2sqaw

    Posted

    Hi

    I have been suffering from Fibromyalgia for 30 years.

    After receiving D.L.A for 8 years they are now stopping it. I am going to the C.A.B. but I don't hold out much hope, it's a case of wait and see.

    They are cutting right back on DLA.

    Anyone with good experience in 2009?

  • SES
    SES

    Posted

    Fight them all the way sqaw2sqaw xxxxx as it is your right as a disabled person to have this benefit!!!!!

    Take care x

    SES

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