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Wanting to connect with others who have Fibromyalgia

jotom2269jotom2269 Member Posts: 7 Listener
edited January 16 in Disabled people
Hello, this is all very new to me. I was diagnosed with fibromyalgia in October 2019 but there aren’t any support groups near me and sometimes, well most of the time I feel so alone as no one understands what it’s like living with this condition. 

Replies

  • chiariedschiarieds Community champion Posts: 3,824 Disability Gamechanger
    edited January 14
    Hi @jotom2269 - & welcome to this great community! Sadly we have a lot of members here who have fibromyalgia, but they do have understanding, so I'm pleased you've joined us all. I don't have this, but the chronic pain I have due to the genetic disorder of Ehlers-Danlos Syndrome (well at least those of us that have the hypermobile kind of this) is said to be so very similar, so perhaps I have a little understanding too!
    Others will join in, & please know you are no longer alone, as this is a very good & friendly community. People here really do try & help each other. Often, tho we have different diagnoses, there is much that we have in common.
  • jotom2269jotom2269 Member Posts: 7 Listener
    Thank you for the welcome @chiarieds. I must admit that before my diagnosis I’d only heard of fibromyalgia and knew nothing at all about the condition but I’m learning slowly. There are no support groups in my area, which is disappointing and frustrating at the same time but I’m happy to have come across this site and from what I’ve seen and read through today, it seems a very friendly, supportive and helpful community.
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,251 Scope community team
    Welcome to the community @jotom2269! I have moved your post and renamed it so I hope this allows others with the same condition to be in touch. :)
    Community Partner
    Scope

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  • Firefly123Firefly123 Member Posts: 522 Pioneering
    Hi I got diagnosed with it about a year ago after many years of suffering. Welcome to the community. You are definitely not alone ☺ 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    edited January 16
    Hello @jotom2269   This may be of interest to you.

    Charity on fibromyalgia.

    https://www.fmauk.org.

    Helpline 0300 999 3333

    For any pain.

    https://www.awaywithpain.co.uk.

    Please take care please if I can help further happy to do so.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • deb74deb74 Member Posts: 623 Pioneering
    Hi @jotom2269. Like Chaireids has said a lot of us have fibromyalgia. I knew a couple of people who had it but I didn't know what it was and how it affected people. I have ME and fibromyalgia which have totally taken over my life. You just have to learn to live with it unfortunately and the unpredictability of what it might throw at you. I consider myself to be very lucky, although it has taken over my life I am still able to take my dog for walks everyday even though they are only short walks these days. You have to learn to take things at your own pace and make things as easy as possible for yourself.
  • jotom2269jotom2269 Member Posts: 7 Listener
    Thank you all for the replies, I’m just taking each day as it comes and trying...desperately trying to learn the pace yourself thing. I’m so used to being able to do things not only for myself but other as well. I do try to get out most days for a short walk and the stretching exercises do seem to be helping to some degree. I’d love to hear any tips that any fellow suffers have or things that work for you
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