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Wanting to connect with people who understand fibromyalgia

needavanneedavan Member Posts: 9 Listener
edited September 2019 in Disabled people
   I have multiple health problems and getting very little support, I am in pain all the time with fibromyalgia, disrupted sleep, tired often. I have a partner who looks after me.
I also have mental health issues but again getting little support from the NHS.
Anyway hello to everyone and hopefully will meet a few people who understand fibromyalgia.


  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi, I dont have fibromylagia, but do identify with you on fatigue, broken sleep and pain.
    Welcome to the gang x
  • Adrian_ScopeAdrian_Scope Testing team Posts: 8,001

    Scope community team

    Hello @needavan and welcome to the community. A lot of our members also live with Fibromyalgia, so hopefully you'll find lots of folks who can relate. :smile:
    Community Manager
  • April2018momApril2018mom Posts: 2,869 Member
    edited August 2019
    Welcome to the forum! 
    Hopefully someone with it will be along soon. In the meantime can you tell us a bit more about yourself? Feel free to look around the site. If you have other questions do ask them. 
    Have you introduced yourself yet? Regarding the lack of support, you might find this helpful- https://www.nhs.uk/conditions/social-care-and-support-guide/
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Welcome to the community @needavan

    Senior online community officer
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    Hi @needavan I'm new here & have already found this to be a very supportive community. Altho' I don't have this disorder, I have read a lot about it in the past (whilst researching to help my family) as often people with my neurological problems were misdiagnosed with fibromyalgia. I am in pain as soon as I'm upright, & pain all day just wears you down causing fatigue & often poor sleep. I'm sorry you have this & other issues as well. Might you ask your GP to refer you to a rheumatologist with an interest in fibromyalgia?
  • April2018momApril2018mom Posts: 2,869 Member
    How are you today OP? 
  • chiariedschiarieds Community Co-Production Group Posts: 9,160 Disability Gamechanger
    Just a thought, but could one of the team change the discussion title to include the word 'fibromyalgia'; altho' the OP has other issues, they are asking about this?'
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    edited September 2019
    Hi @needavan and a very warm welcome to the community! How are you feeling today?

    I have changed the name of your post and I hope this helps other members with fibromyalgia connect with you. :)

    Please do let us know if we can do anything else to help!

  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi, I visited a new friend yesterday and as well as degenerative crumbling bones, she has fibromyalgia. She is in awful pain with it. I `you tubed` it last night. My word! What a horrible condition.
    It was identified long ago...1860s....before that it was not believed..an attention seeking complaint. I dont think so!
  • needavanneedavan Member Posts: 9 Listener
    The problem is that you can't see fibromyalgia, you can't see the pain like mental illness, you can't see mental illness and there is so much hype about it.

    Everyone has heard of arthritus, everyone has heard of cancer, but fibromyalgia, never heard of it.
    I have had a look at our local hospital about fibromyalgia they have a team there so will try and get referred by G.P.
    But I have had fibromyalgia and mental illness for years, think they are related, the frustration of not being able to do anything, pain, lack of sleep, its all a big viscous circle. It is a horrible condition and the lack of understanding makes it 10 times worse.

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