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FIBROMYALGIA

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  • Francis_Calvert
    Francis_Calvert Community member Posts: 9 Connected
    Ogmoose I am a man with fibromyalgia. We need to get the message out that men are affected more than is currently thought to be the case. 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    No one told me about  c f s and I’m sure I have it as I crash after short bursts of activity and spend days recuperating. Why do g p s not tell you this? Of is it just classed as fibromyalgia?
  • Francis_Calvert
    Francis_Calvert Community member Posts: 9 Connected
    My neurologist told me that ME/CFS is an outdated term for fibromylagia. I do not know whether that is just his opinion or medical fact. They do share 70% of the same symptoms though, Fatigue is a big part of fibromyalgia. 

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi all, as far as I know M.E and fibromyalgia are still defined as separate conditions with differing causes (I'm diagnosed with one and not the other myself!), however as you say there's a lot of overlap with the symptoms.

    @debbiedo49, you can find out more about ME/CFS on Action For ME's website. Hope it helps!
  • PIPnewbie
    PIPnewbie Community member Posts: 298 Pioneering
    My girlfriend was diagnosed with it yesterday after experiencing the symptoms since early childhood.
  • Ogmoose
    Ogmoose Community member Posts: 11 Connected
    My consultant made a clear distinction between ME and fibromyalgia even though I cannot remember how he defined it. They're both as bad as each other. I'm currently going through a sickness management process at work and it's pretty depressing that no one really knows or understands how debilitating and unpredictable it is. It's maddening when they think that working a three day week will mitigate things. Their view is to work Monday, Wednesday  and Friday and use Tuesday, Thursday and the weekend as recovery days. Duh! If only it was that simple.
  • Lisa1968
    Lisa1968 Community member Posts: 3 Listener
    Hi I was diagnosed a year ago the pain and fatigue make it very life altering. I wake up 6 times a night and am drenched in sweat all night. I want to do the things I used to but it takes me all my time just to exist. I'm on lots of pain killers but none help 
  • Ogmoose
    Ogmoose Community member Posts: 11 Connected
    Hi Lisa, sorry to hear you've  got this. I can relate to the waking up, its a bit of a vicious cycle. With the sweating you might want to try a wool based duvet. They're  nice and heavy, a really comforting feel, lighter but equivalent to weighted blankets, but they're not too hot, they seem to disperse body heat well. I only use cotton sheets and covers now. Don't try and fight the waking up, go with the flow and no electronic devices at bed time. They overstimulate your system and repress the sleep mode. Have a comforting drink by the bed so when you do wake, you can take a sip. Mine's a Ribena with full fat tonic, the quinine helps ease the jangly feelings. Aspartame and artificial sweeteners are not recommended apparently. Alcohol doesn't help, I've tried that too! Keep your head up, we can adjust, honest.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Anyone want to message me about fibro please do x
  • Tarbatness
    Tarbatness Community member Posts: 17 Connected
  • Tarbatness
    Tarbatness Community member Posts: 17 Connected
    The diagram above shows how similar illnesses interlock, all of them cause pain, but each have their own symptoms too - there maybe other symptoms not listed, too. However, it gives sufferers and their carers an idea of how difficult it is for doctors to diagnose and for everyone to understand !

  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    What’s r s d please? That’s a good way to look at the issues
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    @Ogmoose yes I mostly wear cotton as my skin is so sensitive and cotton helps regulate the heat or cold. I use a heavy duvet as I like the weighted feeling which usually ends up scrunched up as z body pillow which I also have. One half of body covered one not lol. 
  • Tarbatness
    Tarbatness Community member Posts: 17 Connected
    RSD = Reflex Sympathetic Dystrophy also known as CRPS = Complex Regional Pain Syndrome !
  • cracker
    cracker Community member Posts: 324 Pioneering
    JennysDad said:
    Hello @Cripple91 and welcome to the community. I've just read up a little on debbiedo49 said:
    Anyone want to message me about fibro please do x

    RSD = Reflex Sympathetic Dystrophy also known as CRPS = Complex Regional Pain Syndrome !

     and, clearly, it is very unpleasant. How are you coping? 
    You'll probably make contact with other sufferers here, so stick with us and let us know of any way you can think of in which the community might help.
    Warmest best wishes to you,
    Richard
    I was diagnosed with this years ago (when it was not believed in by the medical profession) - but with lll the other medical issues I have, I am never sure what's what. My own diagnosis is chronic pain, bones and muscles deteriorating, general health going down.

    Many doctors call it a "waste basket" disorder and blame it on women's messed ;up emotions. If they only knew.


  • Francis_Calvert
    Francis_Calvert Community member Posts: 9 Connected
     https://goo.gl/Btrj8s
    I have contributed to this book. This is a pre-order for the Kindle version it will be out in paperback soon. I do hope it is okay to post this. 
  • Francis_Calvert
    Francis_Calvert Community member Posts: 9 Connected
    edited October 2018
    https://www.amazon.co.uk/Many-Faces-FIBRO-struggling-FIBROMYALGIA-ebook/dp/B07J2TT36T/ref=sr_1_1?ie=UTF8&qid=1538850706&sr=8-1&keywords=the+many+faces+of+fibro
    I have contributed to this book it is different people's experiences of living with fibromyalgia. I thout it may be interesting. 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Ooooooh a celebrity lol ? 
  • susielockett
    susielockett Community member Posts: 53 Courageous
    I too have fibromyalgia and like most I wake in the night, cannot get comfortable whatever I do or whether I sit or lie. One doctor had said to me its a name for something that doctors cannot diagnose, another said its all in the mind! Mine is stress related and have found that since I have now been through the appeal system and come out the other side, I feel better within myself. Yes, the pain is still there as strong as ever but the stress has been alleviated which in turn helps. I have just won my appeal for PIP and am on enhanced ESA so I can now take the time (at my own pace) to try and get myself right. I never thought I would be in this position at my age (64) and am just glad it has come on now and not when I was younger. You are all right, its invisible and unless you suffer with it I dont think anyone understands how debilitating it can be. 

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