Diagnosis Fibromyalgia — Scope | Disability forum
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Diagnosis Fibromyalgia

CambTom
CambTom Community member Posts: 3 Listener
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. 

Comments

  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Hello there @CambTom and thanks for reaching out and sharing your recent Fibromyalgia diagnosis. You are certainly not alone in now having to manage multiple long-term conditions and disabilities and this can take it's toll mentally.

    I'm sorry you're finding things tough going at the moment, do you have much support at home, from friends/family, and do you feel supported by your GP? 

    I'm going to tag @L_Volunteer as she has her own lived experience of Fibromyalgia, and I'm sure she'd be happy to share her thoughts. 

    A new diagnosis can take time to get used to, especially on top of managing everything else, but as you say, at least it gives you the opportunity to rethink the future. 

    If there's anything we can help with, please do ask, and we'll do what we can to help :) 
    Online Community Coordinator
    Scope

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  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    edited January 2023
    I do indeed have fibromyalgia too. Thanks @Alex_Scope for tagging me in @CambTom's thread. Hello! 

    I can hear how difficult it has been for you recently. I would definitely say that fibromyalgia was worse for me when I was first diagnosed. I couldn't really write or shower and had to choose very carefully what I did and was often hunched over with back pain. 

    I would say the worst part is often people's lack of understanding. I find this to be a supportive space though, thankfully, with many people sharing similar experiences. Having said that, it hasn't always been a smooth ride. It is often worse under stress and when cold for me. Everyone has different triggers though and it would be worth identifying what does/doesn't work for you.

    The one thing I was advised when I was first diagnosed was "spend at least 5 minutes every day doing something you enjoy". Now, that advice I like which is why I am sharing it with you but I have tweaked it. Something I enjoy doesn't always look like it used to, I typically don't have the same energy I used to.

    However, what it does look like is something that is self-care for me in the moment with taking into account my pain and energy levels etc. I always ask myself what do I need and what might make me feel better? This is particularly important in reducing and managing stress, and as you said you also have bipolar, anxiety and depression.

    How are you feeling at the moment about the idea of maybe having to go back on pregabalin? Here for you and listening to you if you would like to share more about this (or anything else!). Also, how are you managing with your mental health at the moment - do you have the support you need and deserve? Managing this is important in itself but also important for managing fibromyalgia. 

    I try not to let it define my trajectory. However, I also take it day by day and sometimes hour by hour and take into account my needs, energy and any reasonable adjustments that might be needed  <3


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    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • CambTom
    CambTom Community member Posts: 3 Listener
    At this point I am still Lear ignore about the disease and what the causes and triggers are. The overlap with mental health and other complex physiological ailments do not help. 
    Pregabalin worked in other ways but it affected my cognition quiet significantly.  Some other treatments were attempted but too many side effects.
    what I take at the moment seems to be a fine balance between stability and limited chronic pain and being numb and listless, with fatigue. 

    I’m told I have been most likely living with FM for several years and  developed a coping mechanism but when stress kicks in everything goes haywire.

    I’ve run out of empathy,  compassion and my patience has dwindled. 

    I need to be more selfish and think about my self and my health much more. 

    A lesson hard learnt.
  • poppy123456
    poppy123456 Community member Posts: 52,172 Disability Gamechanger
    edited January 2023
    I was diagnosed with fibro 10 years ago and it took a few years of having every single test they could think of before finally being diagnosed. I have other conditions too. There's a lot more understanding and knowledge of it now that there was back 10 years ago.

    I think the worst part of a diagnosis is coming to terms with it. It doesn't change the way your conditions affect you and you're no worse off than you were before the diagnosis.

    Yes, stress does make my pain worse, as does doing everyday things but i refuse to stay in bed everyday. Cold weather is another trigger to increased pain for me so keeping warm really does help.

    I don't believe there's any medication that will take the pain away completely as i've tried more pain medication than i'd like to remember. What works for one may not work for another person so the best thing is to speak to your GP to see what options are there for you. I take Amitriptyline at night which does help me sleep. Sometimes i feel a little groggy in the morning but i sleep so much better since starting this and the extra sleep is well worth the small amount of groggy feeling in the morning. I do take other pain medication too.






























    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.

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