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FIBROMYALGIA

Cripple91
Cripple91 Community member Posts: 3 Listener
I HAVE BEEN DIAGNOSED WITH FIBROMYALGIA 
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Comments

  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    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
  • Cripple91
    Cripple91 Community member Posts: 3 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

  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    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_Alumni
    Lasian_Alumni Community member Posts: 659 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.
  • Cripple91
    Cripple91 Community member Posts: 3 Listener
    RichardVr i meant CBD OILS (HEMP)
  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    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
  • Ogmoose
    Ogmoose Community member Posts: 11 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!
  • ritaweaver
    ritaweaver Community member Posts: 3 Listener
    Fibromyalgia is much more common in women x I have it too and suffering narcoleptic episodes in this heat x
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    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!
    Scope

  • Ogmoose
    Ogmoose Community member Posts: 11 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_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    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 :) 
    Scope

  • Ogmoose
    Ogmoose Community member Posts: 11 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 
  • Daria
    Daria Community member Posts: 1 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_Calvert
    Francis_Calvert Community member Posts: 9 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. 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 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. 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    @Francis_Calvert please let us know how you get on. 
  • Francis_Calvert
    Francis_Calvert Community member Posts: 9 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_Calvert
    Francis_Calvert Community member Posts: 9 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.
  • cracker
    cracker Community member Posts: 324 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?
  • Ogmoose
    Ogmoose Community member Posts: 11 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. 

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