I have fibromyalgia and mast cell syndrome. I haven't got much support from my GP. Any advice? — Scope | Disability forum
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I have fibromyalgia and mast cell syndrome. I haven't got much support from my GP. Any advice?

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Dogmammy
Dogmammy Community member Posts: 4 Listener
edited November 2021 in Chronic pain and pain management
I am 50 and suffers with fibromyalgia and mast cell syndrome.  I am very depressed and made a suicide attempt last week due to the pain experienced and lack of support and pain relief from my GP. Hoping to meet others with similar experiences who can offer advice..
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Welcome to the community @Dogmammy :) Thanks for joining the community, and for sharing your experiences so honestly in your first post here.

    I've sent you an email from community@scope.org.uk, so please do keep an eye out for that.

    I've moved your post into our chronic pain and pain management category, as it seems you're asking for some advice on getting the right sort of pain management- is that right? 

    We also have a category for discussions around mental health and wellbeing, which you might like to visit. 
    National Campaigns Officer, she/her

    Check out our Playground Accessibility Map
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community 

    I'm sorry to hear how you are feeling 

    If your not being supported by your gp is there another one you can see or change surgery 

    Are you under any specialists that can help 

    Have you been referred to pain management clinic 

    As for depression have a look at the mind website 

    Hope you manage to find some help
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  • poppy123456
    poppy123456 Community member Posts: 54,051 Disability Gamechanger
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    Hi,

    I've had fibromyalgia for more than 10 year, diagnosed in 2013. I've never found much help either to be honest. My GP's have always been very understanding but help is limited, especially as far as pain medication is concerned. I've been to the pain clinic and tried various things too but nothing has worked for me.
    You can ask your GP to refer you to the pain clinic but waiting lists maybe extremely long. My last pain clinic referral, i waited almost a year and when i finally went for my oppointment i was extremely angry by the Consultant i seen. Such a complete waste of my time and fuel to get to the apppointment.
    What works for one person may not work for another. I've tried so many different pain medications it's ridiculous and nothing takes aways the pain completely, some didn't work at all. For me, heat does help, so in the cold weather using hot water bottles or having a bath helps me so much!

    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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  • Dogmammy
    Dogmammy Community member Posts: 4 Listener
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    I have been seen virtually at the pain clinic and the only thing they have done is placed me on a virtual  pain management course starting Jan.  To be honest I am so tired now I am.losing the will to speak to anyone.  
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  • poppy123456
    poppy123456 Community member Posts: 54,051 Disability Gamechanger
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    The pain management course will basically show you different ways of managing your pain. To be honest, it didn't work for me and i found it rather pointless but it does work for some.
    I also tried hydrotherapy but that didn't work either. Although the pools are warmer than normal pools, it was still far too cold for me and my pain was even worse, infact when i got out of the pool i couldn't walk at all. Again, this works for some people.
    There really is very little in the way of help for those with fibro, sadly.
    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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