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fibromalagia

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greyhazy
greyhazy Community member Posts: 5 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
interested to talk to other people about his condition, thank you
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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Hello @greyhazy

    I hope you are well, is there anything in particular that you want to speak about relating to the condition?
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
    edited October 2021
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    Hi @greyhazy, 

    I also have fibromyalgia. Is there anything specific you want to know?  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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  • greyhazy
    greyhazy Community member Posts: 5 Listener
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    hello, thank you for your reply , i just would like to talk to other people that have it, as i feel a bit lost around other people that don't. i know there are so many different symptoms, i didn't really ever get a proper diagnosis, as my neurologist did not see me again since Covid and lock down. i could not got  through with the tests. (electrodes).
    so now waiting for ovarian op. 
    my life has slowed right down and i have to go at my own pace, it took lot of courage and to speak out to my closet friends and family as people did not understand.
    I have not worked for 2 years and on ESA, was lucky to have a good doc at the assessment although i never got the report.
    i look after my self best i can , just interested how other people manage?. i do have nerve pain, but try and use herbs instead which seem ok, but not always so i do take medication, but not together.
     just sleep , rest and mild exercise helps, but i struggle walking up hills, i use to walk a lot back in the day, the adjustment to your life is so difficult and the acceptance that i don't think i will ever get better, just good days and bad. thanks
    its a very difficult illness to explain to other people, i have read up a lot about it and don't think its ME
    I would like some recommendations of books to read please.
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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
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    Hi @greyhazy, 

    Thanks for your response. Life certainly does change following the onset of fibromyalgia. However, it is crucial that you find what works for you. Unfortunately, fibromyalgia is a hidden condition so many people who have not experienced it struggle to understand. 

    In terms of talking to other people with fibromyalgia, there are a few of us on the Scope forum with fibromyalgia so I am sure you can talk to multiple people with fibromyalgia. You may particularly benefit from the disabled people forum which you can find at https://forum.scope.org.uk/categories/disabled-people, the ESA forum which you can find at https://forum.scope.org.uk/categories/benefits-and-finances, the dealing with chronic pain forum which you can find at https://forum.scope.org.uk/categories/chronicpain and the invisible impairments forum which you can find at https://forum.scope.org.uk/categories/invisible-impairments. 

    I personally manage fibromyalgia by resting, using a laptop instead of extensive handwriting and having warm showers and baths since the heat helps me. However, this is not extensive and may not be applicable to you. For example, I know others with fibromyalgia who find cold works better for them. 

    Some book recommendations include:
    • Fibromyalgia and myofascial pain syndrome: A practical guide to getting on with your life (Dr Chris Jenner)
    • Fibromyalgia: A guide to understanding my journey (Shelly Bolton)
    • But you don't look sick!: Fibromyalgia an invisible illness (Bette Brown)
    I hope you enjoy these books and that this post has helped you in some way! I will look forward to hearing from you again soon  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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  • greyhazy
    greyhazy Community member Posts: 5 Listener
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    thank you so much for your help, lots to read which i am grateful for. 
    yes a hidden illness, is so difficult, i got so fed up when people would say, "so what's wrong then"?
    it would be so much easier if i had a broken arm.
    not that i want one of course. being social is so very hard, my whole life has changed, it does feel like a lonesome journey .its tricky,
    I am grateful for the few friends and family i do have, .
    thank you for your advice. yes hot and cold is like that to, as i am going into menopause i fluctuate a lot,  and swelling and pain if i walk or stand for too long, or even car journeys.  that's when the nerve pain kicks in. must go now.
    thank you again.



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