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pain from Fibro

livonia
livonia Member Posts: 74 Courageous
edited September 2018 in Cerebral palsy
hello I am  new here.  I am struggling with pain from fiibromyalgia.  Nothing seems to work including the drugs my gp has given me.  I am have severe anxiety.  how do others cope?  Do  you find that a lot of people don't understand.  I feel that my friends are getting fed up of me which is isolating me.  I have tried telling them to google my condition.  Another friend thinks all my problems will go when i go back to work - she said you need to get a job.  makes me so sad.
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Comments

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @livonia and welcome to the community! Thank you for taking the time to share this with us and I am sure many community members will be able to relate! I am sorry to hear that you are struggling, the community can try and support you during this time. Hope you are having a good day, if you need anything then please be in touch!
    Scope

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Beautifully put, @drb78!
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    I do that to too I say my battery is running low lol. Have just heated up a fleece blanket in the dryer to comfort my painful body and recuperating on the sofa after tackling housework. Ugh!
  • Misscleo
    Misscleo Member Posts: 647 Pioneering
    Iv also had fobro.for years and yes friends and family cant be bothered.
    There will always one who says "cant you walk any faster"
    Iv starting reminding them they may get fibro themselves 
  • Brett_Babs
    Brett_Babs Member Posts: 2 Listener
    My wife got tested for Fibromyalgia and scored 18 on the pain point test..I've been through a work accident,cancer,spinal collapse,life threatening anaphylaxis to both local and general anesthetics.
    My wife helped me through it all and now it's my turn.
    She has hypermobility in both arms and legs, Chronic pain all over (waiting for the pain clinic ) severe asthma(verging bad COPD, high blood presure ,her thyroid is going ape swelling to the point of chocking(awaiting c.t. or MRI scan)
    Got a PIP interview in a week or so....
    And that's not even all of it....
    No family support, no friends to help...surprising how fast they disappear!!
    Fun Times ahead...
     :s  :s


  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Thanks for sharing this with us @Brett_Babs. I hope you find support in being a part of our community among others who understand- and if we can be of any assistance, please do let us know.
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    I was just at a physio assessment and they said I can’t help you with fibro it’s a mystery to us. But I can help you with one symptom in one area. Typical NHS! Yes I will take any help please. 
  • maud
    maud Member Posts: 10 Connected
    Hello
    I have just joined. I have been diagnosed variously with Lyme Disease (definitely had it twice when working in Africa for many years), ME, CFS and fibromyalgia, ‘it’s all in your head dear’.
    I am really struggling with chronic pain, all over my body. On a good day I can walk for about 10 minutes until the pain stops me. On a bad day I struggle to get out of bed.
    I’ve given up on the NHS. Too unwell to attend pain clinic. Physio made me much worse as they insisted I ‘work through the pain’. GP treats me like a junkie for taking cocodamol.
    I am retired, don’t think I will ever get better. Luckily have a husband but feel guilty about how much he has to do for me.
    I have tried CBD which initially helped but doesn’t seem to any more despite advice from a very good fb group.
    Sorry I sound negative but going through a very bad flare and it is so difficult to feel positive when pain is dominating my life and I can’t even recognise the person I have become.

  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    Feel your pain fellow fibromyalgia warrior
  • Peridot
    Peridot Member Posts: 9 Connected
    I'm really sorry to hear that. I totally understand how hard it is to stay positive during a bad flare up. I have just come out of a bad one, and I just completely gave up with everything. Stopped caring for myself, distanced myself from my family - I just had no energy or patience for anything. And the pain was intolerable!
    The one thing that worked for me during that God awful period was CBD in a vape pen that I got off the internet. I used to use a dropper and put it under my tongue, but like you it stopped working pretty quickly. But this CBD pen was an absolute lifesaver for me! Worked so much better on me than the dropper and works out cheaper too :smiley: Started off on the 300mg strength, and really helped me out, and I'd tried pretty much everything to ease my symptoms with varying degrees of success haha. Can give you the site name if you want it. Just let me know :smile: I have also found mindfulness to be very helpful, but didn't have the patience for it this flare up lol

    I really hope you start feeling better soon. Sad to hear what a bad time you're having, but it sounds like you have a lovely supportive husband which is fab! Sometimes one person who understands what you're going through can make all the difference.

    Sending gentle hugs to all! <3 
  • maud
    maud Member Posts: 10 Connected
    Thank you Peridot and glad the vape pen is helping you.
    i have been thinking about vaping as you don’t need to leave a gap between it and other Meds so info about what you are using would be so helpful.

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