Advice on coping with Fibromyalgia? — Scope | Disability forum
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Advice on coping with Fibromyalgia?

gvenus
gvenus Community member Posts: 3 Listener
I suffer with Fibromyalgia. Any advice on coping with this would be greatly appreciated.

Comments

  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    Hello @gvenus and a wamr welcome to the community. It is good to have you with us.
    I'm sorry to hear you have this very painful condition, but we have a number of members who suffer from it and who will welcome you with open arms :smile:
    A good starting place is probably 'Dealing with chronic pain' (it's not the only place but I know a lot of 'fibro' posters tend to communicate there). Take a look at some of the conversations and resources and - if you feel up to it - chip in.
    You're safe among friends here, gvenus, so please don't be shy of asking us any questions or telling us anything about yourself. ~The better we get to know you, the more easily we may find ways of supporting you.
    Warmest best wishes to you,
    Richard
  • gvenus
    gvenus Community member Posts: 3 Listener
    Thank you for your response. I shall look at your suggestion.
  • Ritzy
    Ritzy Community member Posts: 36 Courageous
    Hi @gvenus I also suffer with Fibro., and it's one of those conditions that unless you suffer from it, it's hard to explain to people how you are feeling, as every day is different and every sufferer has Fibro in different degrees of chronic pain.  Chronic fatigue can be one aspect of having the condition and the the GP's/Specialist's  always mention different medication to take to try and help you, this can take months of trying different ones to see which one will suit you.  There is light at the end of the tunnel though, talking with people who understand helps, I have found this site very helpful, welcome to the site.  Let me know if this has been helpful 
    Kind regards
    Ritzy 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    I dont know whats going on but since my diagnosis recently for Fibromyalgia, my pain and symptoms have increased. My meds have increased and im getting 6 hours sleep in a row instead of 4 which is better. In a way I feel both happy and sad about finally being diagnosed but not sure how to cope with the pain and symptoms. I keep thinking that I am going to be cured then going duh no I am not. Anyone else feel weird or worse after diagnosis please? I think I need counselling to cope with the long term implications and also pain management. I am finding it harder to do things like my part time work and my part time course nevermind everyday living. Tomorrow I have 4 activities. I just want to go to bed lol.
  • gvenus
    gvenus Community member Posts: 3 Listener
    Thank you Ritzy for your input very helpful x

  • Valerie_8
    Valerie_8 Community member Posts: 4 Listener
    Hi Debbie, 
    I felt overwhelmed with life after diagnosis. I too have fibromyalgia 14 yrs now. Beware if not coping with it well, it comes with anxiety and depression. 

    Going to group, pain management, trying all kind of therapies, including alternatives is our option, as personally i dont trust medicine unless you find some that helps. 

    A positive outlook on life is crutial, easy say than done. I really wish community get together to put pressure on research. I struggle to not know why i suffer like this with no source of the problem, no understanding, no real relief. 

    Im still struggling to balance my activities, when on good days i do too much and on bad days i do so less its unavoidable that i need to rest as i have a lot of fatigue. 

    I hope this helps.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
  • CambTom
    CambTom Community member Posts: 3 Listener
    edited January 2023
    After six years of chronic pain, (originally a prolapsed disc) I was diagnosed with Fibromyalgia this las week. As a man I found this hard to accept.  
    Eveything escalated when depression and anxiety took over.

    I was referred to a specialist in Rheumatology. They carried out dozens of tests (bloods) many I had never heard of, to eliminate other diseases and autoimmune/ inflammatory conditions. what I learnt was a relief but also shattering.
    I am told Fibro comes in waves of intensity. It's triggered by major psychological or physiological traumas and illness (cumulative) chronic stress and a numerous viruses.
    As a neurological disease it dials up pain and causes brain fog and memory issues.  
    Ironically I was taking pregabalin for chronic pain but while it helped quite well it made cognition clumsy and i had to withdraw from it to  help concentrate on work.  Mood swings ensued and my mental health  took a dive.
    I was referred to a specialist.  Trial and error took place with various medications, experimenting with dosing and poly therapy (numerous meds.)

    Now I learn I might have to go back on pregabalin, to help with GABA receptors in the brain, that calm pain signals and help with sleep, rather than using a pot of other medications to assist with muscle relaxation, sleep and fatigue.
    This, on top of treating bipolar type 2 with chronic depression, has left me feeling numb and discombobulated.  This journey has been awful but I am comforted in knowing what the prognosis is so I can rethink the future.

    Like many of us, I suspect  our work, income and life style will significantly change and not necessarily for the better, despite knowing that the condition is recognised in law as a serious disability. At my age (59)
    I feel like Im about to end up on a scrap heap. 

  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
    Good morning @CambTom welcome to our great group. Sorry to hear about your health issue (Demons) as i call them. You have joined on to an old chat, if you want to be welcomed by others go into the categories, and post there.
    Have a look around our great group we have lots going on, any problems just ask, some one is bound to be online.
  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Hi @GLASSBACK thanks for sharing your own experiences of Fibromyalgia, and how this interacts with other conditions you manage day to day. I am sorry to hear about your dear friend passing away. 

    If you need any support with feelings of grief or bereavement, you can always reach out to Cruse, or Macmillan Cancer Support to find someone to listen. The community is always here as well, so don't hesitate to ask if you need anything :) 
    Online Community Coordinator
    Scope

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