Invisible impairments
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Fibromyalgia

ros1908ros1908 Member Posts: 1 Listener
edited February 2018 in Invisible impairments
Long term sufferer, 8 years . How do others cope ? 

Replies

  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Welcome to the community, we have lots of members with fibromyalgia and you can read their posts here.
    Scope
    Senior online community officer
  • CharlyCharly Member Posts: 9 Listener
    Hi I have fibromyalgia and osteoarthritis . I have had fibro for about pyre but doctors think I have had it longer. One thing I can say is to keep moving especially on your bad days . This can help with preventing stiffness and muscle locking.
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Just been diagnosed with fibromyalgia after years of chronic pain. Must admit I’m in shock as it was sudden. I’m applying for pip at appeal stage and asking my g p to update my supporting letter with new diagnosis. Don’t know if it’s going to help. This has led me here to find out what others are experiencing. Any tips on finding support groups of good web sites online please?
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • CharlyCharly Member Posts: 9 Listener
    From my experience with pip I was told to explain your worse day and to say that it fluctuates to just bearable to not coping at all. I've had fibromyalgia for about 20years and this is the first time I've found a group where people understand and encourage to keep going. Over the year's I've learnt to think not what I cannot do but what can I do. And have found I can do more stuff than I thought. Things like talking to others, listening, visiting people in there homes so I can sit down..Even helping at children's groups because I enjoy cutting out and making things which I can show children what to do.
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I started volunteering a year ago or so at a kids club once per week and I found it very rewarding in many ways. From there I have taken up supported employment part time but I couldn’t do both. That’s hard for me to take but I can only do what’s best for me. It’s working with kids and it’s so good for the soul. The kids are so full of life and make me smile every time. It’s important to do something you enjoy. I crash afterwards but it’s worth it.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • CharlyCharly Member Posts: 9 Listener
    Totally worth it. Love it when I'm at the shops and they recognize me and come running up for a hug
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
     :) 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
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