1. Community
  2. Bones, joints and muscles
  3. Fibromyalgia Syndrome

Fibro pain & fog

Posted , 8 users are following.

jules02268
jules02268

Hi everyone I'm new here and need some advice please. I was diagnosed with Fibromyalgia last year and after being put on Gabapentin then Pregabalin then back to Gabapentin again. I am now back on Pregabalin. I seem to be better than I was regarding the leg pains but the pain in my back just won't go away. I take Tramadol and even that doesn't help. I can't take morphine as it gives me headaches. My GP told me to apply for PIP and after lots of help filling out the forms I sent them off. I had a letter this week offering me an appointment in February but I am scared to go as I have heard you practically have to be bed bound before they will help. I walk with sticks ( on a good day I can use just one) and can't walk far as my back starts to hurt. If I stand in my kitchen to prepare food after a few minutes I find I am leaning on the work counter. This is how I seem to spend most of my life, either leaning on something or having to lay down. I hate everything about my life as I used to be such an active person. I have put on so much weight and am finding it so hard to shift. Sorry to go on but I can't talk to people face to face. Xx

0 likes, 8 replies

8 Replies

  • pollmadoll64
    pollmadoll64 jules02268

    Posted

    Have courage I am both on ESA  and PIPS. And have just had my second assessment at home as I have just had shoulder surgery and have had Fibromyalgia for over 8years so  was feeling very anxious beforehand .Luckily on both occasions the assessors were very kind and compassionate and very patient which made me relax. It is worth applying for . 
  • jeanne81532
    jeanne81532 jules02268

    Posted

    Hi Jules, I too have had positive experiences at assessments for ESA and PIP. I would suggest you also ask your GP for an occupational therapy referral, where the OT will come to your house and see what AIDS you can be provided with to help you. I have a perching stool in my kitchen which I use when washing up, and for food preparation. I just couldn't manage without it. And you are not alone in mourning the loss of the active person you used to be, or in experiencing weight gain. The drugs and the inactivity both contribute to this. Don't despair; you will find support on this forum. x
  • lisa52101
    lisa52101 jules02268

    Posted

    Hi Jules, 

    trynot to worry about the pip assessment, my own experience of the assessments has always been positive. The advice I would say is to be honest about how bad the bad days are, after all these are the days that you need support with the most. I also agree with Jeanne in that you sound like you would benefit from an OT referral. They are great with helping you to get the aides and addaptations to help you at home. 

    You are not alone with grieving for your past, active life. I too was very active working full time, raising children and engaging in competitive sports. I've gone from a fit, active size 10 to an inactive size 20. Granted I also have other health conditions that impair my mobility which doesn't help. As far as the medications go I'm on both pregabalin and gabapentin as well as amatriptalin, paracetamol and fentanyl patches. It still doesn't deal with all my pain but I know I wouldn't be able to get out of bed without. 

    Take care xx

  • cherl450
    cherl450 jules02268

    Posted

    Hi Jules I just read your mail can I ask is the pain you get just in your legs and back ? the reason I asked is I'm like that I used to be able to walk with one stick but now I have to walk with with a frame and can only do a few steps as the pain in my lower back and legs is shocking ,I was diagnosed with fibro last year but it seemed strange that the pain was just in legs and back so they relooked into it and it turns out it isn't fibro but a disease called archonditis I have probably spelt that wrong but if you look it up it just affects the legs and back .in on morphine which like you is giving me headaches tramdol and pregablin also have injections so if that's the only place you are getting pain please check it out as fibro you might have but could be undeliying the other disease and yes get pips you need it in on DLA as mine hasn't changed over yet sending love and best wishes cherl.xx

    • ayjayster
      ayjayster cherl450

      Posted

      Hi my name is Apryl and I've been having pain since I don't know when. In 2007 I started taking more days off of work. Eventually I got fired because of all the days I was taking off. I at the time didn't know what I had. In 2008 I started trying to get on Social Security. I wasn't approved so I started trying to get another job. I was walking in bent over and limping into job interviews. I tried again in 2009 for Social Security when my legs started bothering me more. I was turned down again but this time I tried again because my legs started getting weak. So in 2011 I finally got Social Security Disability. I never heard of PIP, ESA or GP. I don't know if I qualify for any of those or not. I live in California so I don't know if it's available here.
  • kaz_40
    kaz_40 jules02268

    Posted

    Hi Jules002268 You can ask pip for an assessment to be done at home. I did as I have trouble with stairs and steps Im also very anxious when Im out. My gp got ocupational therapy to come out and see me. They assess you and get aids to help you. I have a bath board for a cross the bath. I have walking frame walking stick perching stool 2 commodes 1 up 1 down as ive been bed bound for 3 years running needing carers in. Ive got rails in bathroom. special cuttlery cups to help me grip better. get as much help support as you can and aids to help you.But I would definitly ask for assessment to be done at home take care gentle hug
    • christine75357
      christine75357 kaz_40

      Posted

      I had an o.t assesment, she gave me nothing!! Said that I couldn't have a bath chair and to use my mums, as I'd told her my mum had one!! Iv got rails ect that we had put in, she was useless!!
    • kaz_40
      kaz_40 christine75357

      Posted

      sorry to hear the OT you saw was so useless, and to tell you to use your mums thats terrible.She should not of said that to you, The ot provided me with a bath board my gp sorted out commodes for me the physio sorted out walking frame and stick. My bath rail I bought my self along with the cutlery I use. 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.