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Fibromyalga

hunnybunny123
hunnybunny123 Member Posts: 13 Connected
edited April 2019 in Cerebral palsy
Please help me if you can. I have fibromyalgia. I was diognised with it nearly 20yrs ago  I am in so much pain every single day  pain all over my body  I have pain in my ankles  they swell up and I get stabbing pains in my heels, and shooting pains through the top of my feet from my ankle  Doctor just says it's fibro. But it's getting so painful to walk now. Is there anything you think I can do ? 

Comments

  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @hunnybunny123 Sorry to hear you are in a lot of pain! :( Have you consulted a different GP for a second opinion?
    Disability Gamechanger - 2019
  • pixie61
    pixie61 Member Posts: 67 Courageous
    Hi, I have fibro & Rheumatoid disease. Was wondering if you’ve ever had blood tests done. RA & Fibro feel more or less the same, except RA is degenerative & Fibro isn’t. I’d also ask to be referred to a Rheumatologist. Hope you get some help soon, 20 years is a long time to suffer without much help & support from the medical profession xx
  • hunnybunny123
    hunnybunny123 Member Posts: 13 Connected
    Seen 3 different doctors, as soon as I mentioned anyt they just tell me there is nothing can be done for me except pain meds  I even changed my doctors  I can't sleep I'm awake every night by  2 30. I sleep in a recliner chair in my front room  so I don't disturb my hubby  he works 12 hr shifts up at 5 not home till 6.30pm  S he is 64, and gets really tired so needs his sleep. I've been sleeping I my chair for over a Yr think probably nearly 2. I've applied for a 2 bed flat or Bungalow. But council says that my needs are not enough for me to have a bedroom of my own  ?
  • hunnybunny123
    hunnybunny123 Member Posts: 13 Connected
    I've had blood tests done and I have had a x-ray. They said I have osteoarthritis in my knees. But obviously as they keep telling me fibro doesn't show up in blood tests  I just get so low  Im sure there is something else going on with my ankles  I have to wear loose socks otherwise they cut into them  And one size bigger in shoes  
  • pixie61
    pixie61 Member Posts: 67 Courageous
    I’m sorry to hear this, the medical profession can be cruel & heartless & I wonder why they do the job they do. Clearly devoid of any sympathy or empathy. Very often my rheumatologist just tells me it’s fibro, knowing my inflammation markers are raised! It’s soul destroying! Wish I could be of more help! Gentle hugs xx
  • hunnybunny123
    hunnybunny123 Member Posts: 13 Connected
    It is. Sometimes I feel very alone, know body seems to understand .. I feel even my family don't believe how much pain I'm in. everyday. ?? Because you don't look disabled people just think your putting it on.. I. America its a known disability  Hugs to you as well ??
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Have you considered looking into Fibromyalgia UK - they have a medical pack which can be sent to your GP which enables them to learn more?
    Disability Gamechanger - 2019
  • hunnybunny123
    hunnybunny123 Member Posts: 13 Connected
    That sounds like a plan... Thank you. ?
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    No problem! Other than suggesting to check out our dealing with chronic pain message board, I am not sure what else to suggest. However, I can assure you that whenever you need to talk, we will be here for you :)
    Disability Gamechanger - 2019
  • hunnybunny123
    hunnybunny123 Member Posts: 13 Connected
    Thanks so much for your kind words. I'm waiting to hear back from a occupational therapist  but it's 26 weeks or more to see her. ? Hoping she might be able to help me with getting moved  ? 
  • Waylay
    Waylay Member Posts: 971 Pioneering
    Sleeping in a chair: Are you raising your feet up? Might help. (My aunt has swollen feet and ankles due to heart probs, and sleeps in a chair. She raises her feet.)

    Swollen extremities can be a sign of other issues - can you bring someone with you and ask for a full checkup to make sure?
  • hunnybunny123
    hunnybunny123 Member Posts: 13 Connected
    They have checked for heart problems it's all fine  I have my feet raised all the time I'm in my chair  Still doesn't make any difference  ?
  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
    My feet and ankles swell up, I tried loose socks but didn't make any difference. I now wear pressure stockings similar to the ones you have to prevent DVT when flying. My GP had my measurements taken and had them made on prescription. They are a nightmare to put on but they do work
    Be all you can be, make  every day count. Namaste
  • hunnybunny123
    hunnybunny123 Member Posts: 13 Connected
    Thanks I'll go and see my doctor again see if she will be able to get me some  Do you wear them all day or just at night ? 
  • CockneyRebel
    CockneyRebel Member Posts: 5,216 Disability Gamechanger
    I only wear them during the day. I have found that after a few weeks I don't need to wear them every day. The important thing that my nurse told me is the ammount of compression. I tried ordinary DVT stockings from the chemist but they did not help, they were to much compression
    Be all you can be, make  every day count. Namaste

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