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Thread: Fibromyalgia

  1. #1
    Senior Member susieboots's Avatar
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    Fibromyalgia

    Hi all. Does anyone suffer with Fibromyalgia? I would like to hear your experiences re fatigue, pain, brain fog etc.

    I am having a particularly bad day today, the exhaustion is overpowering. I can't think straight. Typing is rather challenging, because I can't seem to concentrate on the words or figure out where the keys are, yet I am a 100 words per minute typist!

    I had a great night's sleep - really unusual, I got 5 hours. However, I am falling asleep at the sink washing dishes, on the loo, standing up. My sister phoned me not long ago (always does because she keeps a mirror diary for me to tell me if I have to do anything each day - appointments etc). This is because my memory is poor since having Fibro. Anyway, I fell asleep on the phone, and she had to phone my mobile to wake me up. It's like having narcolepsy, I just can't control it.

    My muscle pain is always present, and don't support my legs and back. There is no way I could leave the house today because I wouldn't be able to hold myself up. My Rheumatologist has stated I have a particular severe case of Fibro.

    Sadly I am unable to find a support group locally, and the only support I can get on NHS is the Fibro hydrotherapy group which I start on 8th July. This is only 6 sessions, but my Physio said I can go on a self help basis afterwards. But, there just isn't anyone to talk to in a similar position, no-one to compare my condition with or offer advice on how they deal with it. It's always helpful I think to 'bounce off' someone in a similar position.

    So, here's hoping some of you can identify. Jeez I can't believe how long it is taking me to type, and I don't even know if it is making sense!

  2. #2
    Senior Member deebee's Avatar
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    Hi Susie, sorry you are feeling so rotten today,

    I have fibro and can sympathize with everything you have just said, however, the degree of sleepiness you are experiencing today sounds as though something else may be going on and perhaps you would be wise to have a chat with your gp.

    I will forward you some details later of an online fibro group, cant comment on its usefullness as all I ever did was register and have never actually used it

    hope you feel better soon x

  3. #3
    Senior Member deebee's Avatar
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    here it is, I don,t know how to do links :/

    http://www.fmauk.org

  4. #4
    Senior Member deebee's Avatar
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    Oh wow, I typed that in by hand and was surprised when it came up blue, so I clicked on it and it works!, that,s certainly not the way my son showed me once lol

  5. #5
    Senior Member susieboots's Avatar
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    Aw thanks deebee, the only one I have found is American, and on reading the posts, their treatments etc are different to ours. Were you able to identify what brought your Fibro on. Apparently it's usually either a trauma or viral illness. Mine was viral encephalitis. My ANA (anti nuclear antibodies) were extremely high. My Rheumatologist wasn't convinced I didn't have Lupus, he hasn't "ruled it out" but I don't have rashes, sun sensitivity etc.

  6. #6
    Senior Member acheron's Avatar
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    Hi Susie yes I got diagnosed with fibro mine started after a very powerful drug cause my immune system to attack all my muscles and nervous system always had bad joint's and exhaustion through crohn's but after the trauma with the biological drug my muscles wouldn't stop hurting or the nerve damage I use to say to doc's my skin hurts

    I get the foggy brain which pisses me off as the old body wasn't functioning anyway but a least before my brain worked (well I was never einstein) I've had hydrotherapy for my joint's and would love to go again but with stoma couldn't

    Do agree with you not much support out there for fibro I use to take an anti depressant combined with the gabapentine and it made it work so much better but had to come off it as it was playing havoc with my gut

    has your hospital got any pain management courses I went on one with crohn's and joints it was very gentle movements and relaxation technechs (sorry can't spell nothing to do with fibro just thick lol )

    if you ever want to chat don't hesitate firbo is horrid and well very strange when I first looked what the esa thing was and people with fibro were getting a rough ride my youngest said "why are they picking on people with fibro" so I told him it was hard to diagnose and there was no real standing proof he said just give em a good poke if they scream they got it life is so simple in a childs eyes

    speak to you soon xx

  7. #7
    Senior Member deebee's Avatar
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    Hi acheron,isn,t it funny how our children "just get it"

    going off topic now but whilst I am chatting to acheron I will let you know a thing I have recently learned,, you know when you get the red wavy line,, if you right click on the word it will correct you,, have you not noticed that my spelling has improved lately lol

    And Susie, have you been tested for APS? also regarding rash, when I first became unwell I didnt have butterfly rash (9 years ago ) but have recently began to get it, going to tell the prof when I see him, as for what brought it on, no idea, I have obviously been harboring the APS all my life as all my children were prem. and with two of them I threatened to miscarry, however my symptoms didnt emerge untill 2004 and then only very mildly,, but by 2006 I was very poorly

    As far as I know I didnt contract a virus that brought it on, and there was no specific traumatic event either,, my own theory,, maybe a series of traumatic events possibly built up untill my body said "no more"

    I had a "colorful" childhood, followed by a violent marriage, followed then by a 15 year relationship with a man who had problems with gambling and alcohol so there have been many tramas

  8. #8
    Senior Member susieboots's Avatar
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    Hi Acheron. I didn't realise you had Fibro too. I am not up to chatting at the mo, so will go and rest, and speak to you all later ok. Thanks by the way to both of you.

  9. #9
    Senior Member acheron's Avatar
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    Sounds like you've had a raw deal deebee life is so cruel sometimes

    The biological agent I had for crohn's brought on a drug induced type lupus but with no rash and hospital at first thought it would go eventually once the drug had been taken away but no so it then got put down to fibro

    I also had some form of sepsis but as my consultant said the cleaver doc's (the ones in the labs) haven't got a clue what's going on

    The worse thing for me at that point was when I went into hospital late on a Saturday night the DR who still had nappy rash just said it will be you're arthiris I said no I can't move it's my muscles and I knew that with a sepsis this drug can kill he left me on a trolley them high ones in a treatment room switched of the light and only left the door ajar

    I though I was gonna die in there and I'm not being dramatic I ended up in intensive care and at one point nurses question my anti biotic as they had never given that amount before they thought the point had been put in the wrong place it haden't

    But one good thing come out of it my consultant said they now give out cards so that the hospital can treat them straight away

  10. #10
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    Hi Susie fibro is one of my probs was diagnosed about 10years ago my mom and my aunt as it, so did my other aunt before she passed, sorry you're having a bad day sometimes the meds make you feel worse which i know sounds mad but we've all found that in my family. Just rest when you feel it's a really bad day, the hydrotherapy as acheron said can help, it didn't help me but that was because of one of my other probs was aggrevated by it but my aunt found it helpful, also as previously mentioned some find pain management places helps, some docs don't fully accept fibro and others are very supportive and i think for a lot of people that's half the battle at least you are getting some help. I would say with 4 of us having it in my family you have some of the same probs tiredness, pain and the head fog as you say but then other things 1 will have but not the others and I think that's the same for all fibro sufferers to be honest, as with all conditions it varies from person to person. I think it is still more recognised in the usa than here. Take care hope the weekend will be better for you

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