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Fibromyalgia

edited 30 November -1 at 1:00AM in Disability Money Matters
2.7K replies 83.5K views
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  • SteveCatSteveCat Forumite
    106 posts
    Part of the Furniture 10 Posts Combo Breaker
    welshbit wrote: »
    Hi Steve, I get pain around my rib cage, I get pressure points there, can feel the tough muscle in spasm with my fingers/hand (physio showed me how). From what you describe though, if it's your Right side, and when in your back the pain seems under your shoulder blade, it could be gallstones. Obviously no-one can diagnose online, but have you been to your GP about this? (I have gallstones myself)

    Hi there, thanks for that. Its not really any side as such but all over, its hard to describe the pain however at first I thought it was something to do with stopping smoking but the pain itself feels just like the pain associated with Fibromyalgia. Sharp and sometimes intense, also like FM it moves around and never seems to be in one place at a time.
  • septemberbluesseptemberblues Forumite
    838 posts
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    Hi I have fibro too (as well as other things - we don't seem to get fibro on its own!). Most people have not heard of this illness, and yet there are a lot of sufferers. As you all know, it's difficult having an illness no one has heard of, and getting IB or DLA for fibro is hard going. I get IB and DLA - but not for fibro - which is what I would consider my "main" condition. :rolleyes:

    Anyway, nice to meet you all. Keep taking the tablets :D
    KEEP CALM AND keep taking the tablets :cool2:
  • Snap..fibro sufferer for over 20yrs now & its true you always seem to get a ton of other things to weigh you down if FMS wasnt' enough on its own! I suffer with osteo arthritis & mental health problems as well on top of all, i've been on incapacity benefit nearly 2yrs now since finishing work due to my condition getting worse (and had a car accident that also crushed a disc in my back affecting my neck/shoulders & poor grip in my hands) dont know where i'b be if I didnt have my motability car for sure.....one thing I dont like though? medication! i've never taken so many tablets in my life! one tab for this one for the side effects etc :D never been to so many self help / CBT/ Councelling / Pain management clinics sadly none of any benefit to me....although since I changed my GP she's been brillilant & started me on better tabs to help control the pain...

    All in all?? one day at a time works for me!......and i'm only 38!! :eek:

    Phil
    We all die. The goal isn't to live forever, the goal is to create something that will
  • poohbear59poohbear59 Forumite
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    yellowrock wrote: »
    Hi All
    Anyone tried the epileptic drug - gabapentin I have heard it is really good for fms.

    try to keep positive,

    Hi, I take gabapentin and it has really helped me a lot. I still get flare ups though. I decided it wasn't working and gradually came off it but my pain got worse so I am back on it. It does seem to help but my GP said that it had to be recomended by a specialist. I have seen two rheumatologists, one of whom specialise in FM.

    I was really intersted in what you have said about low blood sugar. I have the same thing and after seeing numerous doctors have been told to eat six small meals a day.

    I passed out in Debenhams, recently, due to blood sugar problems. Very embarassing!!:o I hadn't eaten all day as I was busy and forgot and I hadn't been out to a big store for about two years. I had lunch in Debenhams and then about 5 minutes later passed out in the bra department:rotfl: :rotfl: . Apparently its called 'dumping'.

    I blame the forgetting to eat on 'fibrofog'.
    Grocery challenge £35/£200 business mortgage £13798))''(+ Barclay's business kitchen loan £7116=Total of £20914, 69% paid off was £68105 Weight to lose [STRIKE]42lbs[/STRIKE] 0 to go!! :D PPI claimed and received £13527 Save 12k in 2017no 116. £0/5000
    'I had a black dog, his name was depression".
  • septemberbluesseptemberblues Forumite
    838 posts
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    Wow, I never, ever forget to eat!! I'm on Amitriptyline, I've got an appetite like a horse :p .
    KEEP CALM AND keep taking the tablets :cool2:
  • Hi, I too have fibro. I was fine until 2002 when I had 'sudden onset' rheumatoid arthritis. I was a teacher of a very active class of 9-10 yr olds. That was in feb half term. By Easter I had 2 weeks off in addition to the holidays to get my head round the whole thing and solve the pain issues, and never went back!

    I've got raynauds syndrome (cold, white then red fingers, toes,nose and ear tips)
    sjogrens syndrome
    fibro

    I've recently come to the decision that although I didn't ask for this and it's not my fault, I still have to deal with it day to day and with regard to my mental state too. Since having a ltc I've put on a lot of weight, and been angry and frustrated and couldn't do anything about it. I've now decided that yes it's going to be difficult, no it's not my fault but it's still up to me to tackle it. I've started off by aiming not to put on any more weight this year, so far on track. I'm now trying to do similar with exercise, seeing a physio for help.

    I have a lovely GP, I too have worked out my dose for amitryptylene, and for tramodol (pain) and have a 'normal dose' and a higher one for when I know I'm going to be pushing it (when I had to get my Dad to hosp in Liverpool for a heart op) so I could do what I had to (not driving lol!) I also take anti inflams and really do work hard to keep positive. The thing that is hard is the fibrofog and the sort of mental mush I seem towade through sometimes, repeating what someone just said to try and work out the reply!

    Take care
    xx
  • Wazz42 wrote: »
    Hi, I too have fibro. I was fine until 2002 when I had 'sudden onset' rheumatoid arthritis. I was a teacher of a very active class of 9-10 yr olds. That was in feb half term. By Easter I had 2 weeks off in addition to the holidays to get my head round the whole thing and solve the pain issues, and never went back!

    I've got raynauds syndrome (cold, white then red fingers, toes,nose and ear tips)
    sjogrens syndrome
    fibro

    I've recently come to the decision that although I didn't ask for this and it's not my fault, I still have to deal with it day to day and with regard to my mental state too. Since having a ltc I've put on a lot of weight, and been angry and frustrated and couldn't do anything about it. I've now decided that yes it's going to be difficult, no it's not my fault but it's still up to me to tackle it. I've started off by aiming not to put on any more weight this year, so far on track. I'm now trying to do similar with exercise, seeing a physio for help.

    I have a lovely GP, I too have worked out my dose for amitryptylene, and for tramodol (pain) and have a 'normal dose' and a higher one for when I know I'm going to be pushing it (when I had to get my Dad to hosp in Liverpool for a heart op) so I could do what I had to (not driving lol!) I also take anti inflams and really do work hard to keep positive. The thing that is hard is the fibrofog and the sort of mental mush I seem towade through sometimes, repeating what someone just said to try and work out the reply!

    Take care
    xx

    Hi Wazz, I was on tramadol, then dihydrocodeine, then back to tramadol but neither one suited me. I found that I was taking the max dose every day and was still in too much pain, totally spaced out, unable to function, and dangerous driving so I couldn't. For the last 6 months I have been on Buprenorphine which are very strong but I don't get any side effects from them, they are the best painkiller I have tried yet.
  • tattytatty Forumite
    28 posts
    Hi i was diagnosed in 2002 ,from being quite healthy and working as a senior nursery nurse to a complete wreck .i have IBS, raynaulds disease and have had many visits to physio more in the past 10 weeks as i have got horrific pain which is different than normal in back which also radiates down leg i saw a consultant (about 4 or 5th one )on tues and have to have another mri tomorrow which i am dreading as i panic and end up with palpitations .Its so hard to have a 'normal ' life i have a 7yr old and a 1yr old and have to rely on my mam during the day and my husband when he comes in from work .I am only 33yrs old and feel like the fibro has once again overtaken my life and i have lost control of it .My son has his harvest festival assembley tomorrow morning and im terrified i wont be able to stay and watch it all as the pain will take over but i will keep on fighting this no matter how much it gets me down .good luck to everyone who has this horrible fibro take care claire x x
  • emilytemilyt Forumite
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    This poem was sent to me. Hope you don't mind me sharing.

    'Ode to FibroFog'

    Just a note to say I’m still living
    That I’m not among the dead
    Though I’m getting more forgetful
    And mixed up in the head.

    I've got used to being tired
    I get it all the time
    I can manage my frustration
    But, Oh God, I miss my mind.

    For sometimes I can’t remember
    When I stand at the foot of the stairs
    If I must go up for something
    Or have I just come down from there.

    And before the fridge so often
    My poor mind’s filled with doubt
    I have just put food away
    Or have I come to take it out.

    And there are many times when it’s dark
    With my night-cap on my head
    I don’t know if I’m retiring
    Or just getting out of bed.

    So, if it’s my turn to write to you
    There’s no need for getting sore
    I may think that I have written
    And don’t want to be a bore.

    So, remember I’m always thinking of you
    And wish that you lived near
    But its nearly mail time
    So, I must say goodbye my dear.

    There I stand before the mail box
    With my face so very red
    Instead of mailing my letter to you
    I opened it instead......
    When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile :D
  • SteveCatSteveCat Forumite
    106 posts
    Part of the Furniture 10 Posts Combo Breaker
    emilyt wrote: »
    This poem was sent to me. Hope you don't mind me sharing.

    'Ode to FibroFog'

    Just a note to say I’m still living
    That I’m not among the dead
    Though I’m getting more forgetful
    And mixed up in the head.

    I've got used to being tired
    I get it all the time
    I can manage my frustration
    But, Oh God, I miss my mind.

    For sometimes I can’t remember
    When I stand at the foot of the stairs
    If I must go up for something
    Or have I just come down from there.

    And before the fridge so often
    My poor mind’s filled with doubt
    I have just put food away
    Or have I come to take it out.

    And there are many times when it’s dark
    With my night-cap on my head
    I don’t know if I’m retiring
    Or just getting out of bed.

    So, if it’s my turn to write to you
    There’s no need for getting sore
    I may think that I have written
    And don’t want to be a bore.

    So, remember I’m always thinking of you
    And wish that you lived near
    But its nearly mail time
    So, I must say goodbye my dear.

    There I stand before the mail box
    With my face so very red
    Instead of mailing my letter to you
    I opened it instead......

    I don't know where you got that from but God it is spot on :T
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