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FIBROMYALGIA

Cripple91Cripple91 Posts: 3Member Listener
edited January 2018 in Invisible impairments
I HAVE BEEN DIAGNOSED WITH FIBROMYALGIA 

Replies

  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hello @Cripple91 and welcome to the community. I've just read up a little on fibromyalgia 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
  • Cripple91Cripple91 Posts: 3Member Listener
    I am struggling. Chronic fatigue and all the other awful symptoms that comes with it! Medication no longer is helpful! Want to look into CBT but I don' want to vape... can anyone give me any advice on who I can talk to about this xx

  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hello again,@ Cripple91  
    I've had a look around and there are clearly quite a few fibromyalgia sufferers within the community. This link goes to one conversation on the subject https://community.scope.org.uk/discussion/36148/help-with-fibromyalgia-stiffness-and-pain and if you use the search box you may well find others. I had a quick look online too and found a couple of promising support sites, including one that might get you into contact with a local support group. Assuming you haven't already found them - and you probably have - you might want to have a look at the following:
    http://www.fmauk.org/contactsmenu/supportgroups and http://ukfibromyalgia.com/
    Forgive me; I'm not familiar with CBT (other than Cognitive Behaviour Therapy) and don't quite get the connection with 'vaping' :) Perhaps you could tell me more?
    You might find this Scope resource useful too: https://community.scope.org.uk/categories/chronicpain
    Please, please let me know if any of this helps or if there is anything further I can do.
    Warmest best wishes to you
    Richard
  • Lasian_ScopeLasian_Scope Posts: 660Member Pioneering
    Hi @Cripple91, welcome to the community!

    @RichardVR has given some great advice and resources to look at!

    Were you talking about CBD oil?

    We would suggest talking to medical professionals about possible treatments. Community members are welcome to share their own experiences but they can't offer or request medical advice.
  • Cripple91Cripple91 Posts: 3Member Listener
    RichardVr i meant CBD OILS (HEMP)
  • JennysDadJennysDad Posts: 2,308Member Pioneering
    Hello again,@ Cripple91  

    and thank you for the clarification. I'm learning a lot today :smile:

    And, as @Lasian_Scope advises, you need to consult medical professionals about something like this.

    I DO hope you find something soon that helps.

    Warmest best wishes, always,
    Richard
  • OgmooseOgmoose Posts: 11Member Connected
    Hi  all. Just been diagnosed within 12 months, that seems really quick compared to some so clearly lucky to have a really switched on Consultant. Don't seem to be many men on here! Does that make me a wimp! NOPE! This is bloody awful so my best wishes to you all. I have fibro and CFS. Buy on get one free!
  • ritaweaverritaweaver Posts: 3Member Listener
    Fibromyalgia is much more common in women x I have it too and suffering narcoleptic episodes in this heat x
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    Hi @Cripple91, @Ogmoose & @ritaweaver! How are you all doing? I know heat can make symptoms worse, especially fatigue! @Cripple91, do you have a better treatment plan in place now?
    Hope you all have a good day!
    Chloe
    Online Community Officer
  • OgmooseOgmoose Posts: 11Member Connected
    Hi Chloe, you're right about the heat. I've bought a set of pillows from Amazon designed for pregnancy comfort. Don't know if anyone might benefit  but I've found they really help support me in bed.
  • Chloe_ScopeChloe_Scope Posts: 4,668Administrator Scope community team
    Hi @Ogmoose, this sounds like an amazing idea!!! I too have chronic pain and really struggle to get comfy on a night. I will definitely look into this :) 
    Chloe
    Online Community Officer
  • OgmooseOgmoose Posts: 11Member Connected
    Hi, tried to copy the link https://www.amazon.co.uk/gp/product/B078W1WJKZ/ref=oh_aui_detailpage_o06_s00?ie=UTF8&psc=1 

    See if it works otherwise it's a Chinese company called JYKJ. A bit expensive but it's a teddy bear for grown ups!

    Moose 
  • DariaDaria Posts: 1Member Listener
    I believe that the right diet and discipline will help reverse it. Recently started taking CBD Oil and the results are amazing! I've added hemp tea and buds into my diet as well. The brand I use is www.cbdo.co.uk There is a lot of info on their website. I've done a lot of research and chose them because is organic and produced in the best way. Honestly, I don't have money to waste and I've realised that my body now deserves the best! 
  • Francis_CalvertFrancis_Calvert Posts: 9Member Connected
    I have been living with fibromyalgia, depression and anxiety since 2015, I am finding it all a real struggle at the minute. The pain is unrelenting. I no longer work which does not help. I have been referred to the Salford Royal Pain management centre, just waiting for an appointment now. 
  • debbiedo49debbiedo49 Posts: 2,874Member Disability Gamechanger
    @Daria hi I'm currently taking hemp oil not sure if it's making any difference. 
    @Francis_Calvert I'm right there with you, I currently returned to work about one year ago part time and I basically collapse afterwards and spend my days off recuperating. However, for me right now it's better for my wellbeing to be doing something I enjoy than to go back to being housebound and hopeless. I'm thinking about increasing my hours but terrified I lose the little balance I have in being well enough. 


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,874Member Disability Gamechanger
    @Francis_Calvert please let us know how you get on. 


    I am a fibrowarrior!
  • Francis_CalvertFrancis_Calvert Posts: 9Member Connected
    Thanks Debbiedo49, I will do that. Fibromyalgia is an awful condition and it has completely changed my life for the worse. We all need all the support we can get.
  • Francis_CalvertFrancis_Calvert Posts: 9Member Connected
    Debbie, my job was as a carer in a nursing home for the elderly so now I need care myself that is no longer possible. I truly wish it was. I have mobility problems because of fibromyalgia which is causing me a lot of pain and other issues.
  • crackercracker Posts: 285Member Pioneering
    Ogmoose said:
    Hi  all. Just been diagnosed within 12 months, that seems really quick compared to some so clearly lucky to have a really switched on Consultant. Don't seem to be many men on here! Does that make me a wimp! NOPE! This is bloody awful so my best wishes to you all. I have fibro and CFS. Buy on get one free!
    What is CFS?
  • OgmooseOgmoose Posts: 11Member Connected
    Hi. CFS is chronic fatigue syndrome. It manifests along with the fibromyalgia. Most fibro sufferers experience bouts of profound tiredness and my consultant explained that they're linked. 
  • Francis_CalvertFrancis_Calvert Posts: 9Member 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. 
  • debbiedo49debbiedo49 Posts: 2,874Member 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?


    I am a fibrowarrior!
  • Francis_CalvertFrancis_Calvert Posts: 9Member 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_ScopePippa_Scope Posts: 5,856Member 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!
  • PIPnewbiePIPnewbie Posts: 242Member Pioneering
    My girlfriend was diagnosed with it yesterday after experiencing the symptoms since early childhood.
  • OgmooseOgmoose Posts: 11Member 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.
  • Lisa1968Lisa1968 Posts: 3Member 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 
  • OgmooseOgmoose Posts: 11Member 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.
  • debbiedo49debbiedo49 Posts: 2,874Member Disability Gamechanger
    Anyone want to message me about fibro please do x


    I am a fibrowarrior!
  • TarbatnessTarbatness Posts: 17Member 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 !

  • debbiedo49debbiedo49 Posts: 2,874Member Disability Gamechanger
    What’s r s d please? That’s a good way to look at the issues


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,874Member Disability Gamechanger
    Thanks @Pippa_Scope


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,874Member 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. 


    I am a fibrowarrior!
  • TarbatnessTarbatness Posts: 17Member Connected
    RSD = Reflex Sympathetic Dystrophy also known as CRPS = Complex Regional Pain Syndrome !
  • crackercracker Posts: 285Member 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_CalvertFrancis_Calvert Posts: 9Member 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_CalvertFrancis_Calvert Posts: 9Member 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. 
  • debbiedo49debbiedo49 Posts: 2,874Member Disability Gamechanger
    Ooooooh a celebrity lol 😁 


    I am a fibrowarrior!
  • susielockettsusielockett Posts: 53Member 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. 
  • debbiedo49debbiedo49 Posts: 2,874Member Disability Gamechanger
    Well done and no it’s  a real condition and a chronic illness so I just tell people that. 


    I am a fibrowarrior!
  • susielockettsusielockett Posts: 53Member Courageous
    Thanks debbiedo49 at least on here we are not alone. The hardest thing for me is not being able to do the normal things. Yes I see family but the companionship of work colleagues is something I miss. I do think we become alienated somewhat and so I love to jump on here just to chat about stuff that affects so many.
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