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carol_60923
carol_60923

Hiya does anyone know if you can get benefits for fibromyalgia. I work at the moment and I’m on lots of pain killers been sent to get physiotherapy.  I don’t think I can go on working much longer I’m in to much pain and tired all the time with the medication.

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  • cat61777
    cat61777 carol_60923

    Posted

    It’s not classed as a disability in this country, I have been in and out of hospital over the years and recently also with the chronic pain team as I also have Endometriosis. The hospital gave me lines for HRMC as I am self employed but lost lots of days each month through not working, unfortunately no disability allowance as of yet because so many people claim they have fibromyalgia but haven’t been tested or been diagnosed by a rheumatologist or neurologist. It’s very frustrating and hope you get well soon 
    • Lucyred
      Lucyred cat61777

      Posted

      Where do you live cat? The problem is the test for Fibromyalgia is so inconclusive and the the people that pay out the money are so tougher aout it but they don’t realize what the patient is going through every second of her life!! I’ve felt with it since 2010 and it took me over 3 years to receive mine. I did have to go before a judge and I waited at least 90 days after that to hear their decision. I did receive my full benefits here in the USA but you have to consider I was 60 years of age at the time and could collect SOCIAL SECURITY at age 62 anyways. So my age also had a lot to do with their decision, 2nd auto immune disease, carpal tunnel and a back problem. If it wasn’t for those other things who knows what the outcome would of been. I find it very unfair that they didn’t even look at the main problem. I beg you ladies to please make sure you know what your doctors and hospitals are writing down, ask for a copy it’s your right as a patient!! It only helps you in your case with all the evidence that you have of things that are goin on! I wish you all the luck!! It’s so frustrating!!
    • cat61777
      cat61777 Lucyred

      Posted

      I live in Scotland so it’s not recognised as a disability as of yet, I understand in America, NZ, Australia and Canada it is 
  • Lucyred
    Lucyred carol_60923

    Posted

    Carol I had a very hard time justifying my case with disability with the Fibromyalgia they tried to say I didn’t have all the pressure points but the first Rheumatologist I went to did verify it but she was no longer my dr do she probably would not stick up for me. My new Rheumatologist Wouldn’t do anything for me at all. I will tell you to make sure from my experience to ask your doctors to see if you can read your records after each visit as they are writing down what you are saying. My primary was interpreting that I was depressed and had anxiety. Well maybe I had some but I was telling him that my Fibromyalgia was killing me and what else could I do. Since then I have 2 more auto immune diseases! I won my case because of the second auto immune disease and carpal tunnel and back issues. I wish you the very best, I sympathize with you! Document everything and most importantly if you have pain that’s totally out of control go to emergency so it’s on record if you are starting a disability case. 
    • carol_60923
      carol_60923 Lucyred

      Posted

      Thank you. 

      I got told I had 16 pressure points and because my back is so bad they sending me for a mri scan, but that won’t detect fibromyalgia she said they go by pressure points and pain not really a test to give a definite. I also have depression I have had that for years.

      Thanks for advice I will do that.

      Take care x

    • Lucyred
      Lucyred carol_60923

      Posted

      They told me you have to have 18 pressure points to be considered to have Fibromyalgia if your Rheumatologist will stick up for you when it comes to legal documentation. I wish you all the luck the journey is way to long and unfair. When I did win my case I only received 5 months backpay out of waiting 3 years on them to make a decision from start to finish. It’s a crime!! I feel blessed at least that I finally got my disability because I almost gave up! 
  • Mary2017
    Mary2017 carol_60923

    Posted

    Hi where are you I'm UK based I have fybro I work and get benefit for it

    • carol_60923
      carol_60923 Mary2017

      Posted

      Hiya I live in Liverpool. I’m a child minder and finding it really hard at the moment I can’t mind younger children because I can’t pick them up change nappies etc. 

      What would I do to get benefit please ? I didn’t think I could work and get benifit. How was you diagnosed? 

      Thanks

  • Mary2017
    Mary2017 carol_60923

    Posted

    My doctor told me to apply, I have three jobs one is quite heavy a school caretaker in derbyshire, I have given my notice in on that one as it's a real struggle now, one is office based so sitting down. I was only doing 30hrs but finding it a struggle I'll soon be down to 15 hrs. Firstly get a diagnosis then apply for puip i looked up the number by internet they took my details and an appointment was made. Go on forums test yourself on the quizzes to see how many points you think you will be awarded, look on tips on how to fill the form in. At the assessment I basically said '' Look I can do anything you are asking but I am in a lot of pain while doing it and because I've been out to this I will be laid up all day tomorrow'' I had got brain fog getting there and was exhausted because I got lost, I fell asleep in the waiting room. I didn't think id get it, my medical records backed me up I'd struggled for nearly 30 years had no idea what was wrong, it was a new doctor that diagnosed it,I get the lower rate my son says I should go for the higher one now but I want to work as much as I am able otherwise i will just wallow in self pity, at least I have a purpose while working.

     

    • carol_60923
      carol_60923 Mary2017

      Posted

      Thank you. 

      I’m like you don’t want to give up work but every day getting that little bit more of a struggle. I’m knackered with the lots of tablets I’m on but I need them for the pain. I can do stuff but like you in lots of pain as well.

      Thanks take care

    • Mary2017
      Mary2017 carol_60923

      Posted

      Ive given up on meds trying CBD oil it is working better, I spoke to a professional and they told me paracetamol is the only thing that will work on fybro all the others are useless.

      take care

    • Lucyred
      Lucyred carol_60923

      Posted

      Carol  and Mary can you both work and make  a certain amount of money a month? Is it different limits in each country as far as money earned monthly in order to keep collecting Disabilty? Here in  America you are allowed to work but you are only and make a certain dollar amount each month but then over a certain number of months if they see you can work they will reevaluate you and possibly your benefits could be taken away from you. I’ve heard of it happening to people! 
    • carol_60923
      carol_60923 Mary2017

      Posted

      I’m on gapentin noratriplen 300 mg four times a day nortripyline 10 mg three  at night co codamol 500mg two three times a day for the pain, fluoxetine for depression. I have tried paracetamol because I got told co codamol was not good for pain, but I think paracetamol doesn’t do any think. 
    • carol_60923
      carol_60923 Lucyred

      Posted

      I’m not sure about over here. We have all new changes coming in for benifits and it’s making it really hard for people keep benifits even if thay have an illness that stops them working. I’m self employed but I have had to cut my hours down due to pain and tiredness with tablets .

      So at the moment in looking for options as I know this pain is making it difficult for me, also being self employed I can’t afford to take time off. 

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