Possible fybromyalgia — Scope | Disability forum
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Possible fybromyalgia

Dandy1923
Dandy1923 Community member Posts: 50 Connected
Hi all, finally after years of back and fourth to my GP regarding the general pain etc that I have been experiencing, I have been referred to a rheumatologist to try get a diagnosis, the GP has mentioned fybromyalgia, at present I get terrible pain in my joints, I'm exhausted even when getting a full night's sleep, I have daily head aches, generally have what I call a cotton wool head, I have no energy whatsoever, what am I to expect at the rheumatology appointment and if I get a diagnosis of fybromyalgia what happens next?
Thank you

D

Comments

  • poppy123456
    poppy123456 Community member Posts: 52,186 Disability Gamechanger
    I was diagnosed with fybro 10 years ago and it was a Rheuamtologist that diagnosed me. I did spend many years previously to this going through lots of various other tests so by the time i was referred to rheumolodgy everything else was all done.

    During my appointment i was asked various questions about the way i was affected. I had a quick examination and then he diagnosed me. I never seen him again after that.

    What happens next? Not a lot i'm afraid because there's nothing really they can do. I was referred to the pain clinic but i didn't find them helpful at all. All you can do really is try to manage the pain as best you can. I do take medication, which does ease the pain a small amount but it never takes it away completely.

    My sleeping used to be horrendous and mostly only managed to get a couple of hours a night. Then a couple of years ago they started me on Amitriptyline (i take other medication too) which helps me to sleep so much better. It doesn't work for everyone and some people can't manage the side effects of this medication. You should also be aware that what works for one, may not work for another.  For others reading this, i'm not giving advice on which medication to take because i'm not a medical professional.
    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.
  • WelshBlue
    WelshBlue Community member Posts: 703 Pioneering
    I agree with Poppy' ... what medication can work for one doesn't for others.  Always discuss it with a GP
    Wrong combo's can increase the risk of Serotonin Syndrome if SSRi's are used

    I'm on Carbamazepine and Fluoxetine (previously Duloxetine) Not pain free but they take the edge off some days

    Gabapentin or Pregabalin work for some - they just made me extremely mood swingy and nasty.  Horrible even

    The Rheumatologist will discuss your symptoms etc and do a tender point check.  It's been so long since I was diagnosed, but I think you need 11 of the 18 to be tender/painful under pressure to be diagnosed with Fibro' ... I had 16 my chest is pain free  :p



    After diagnosis, for me it's been about lifestyle changes, acceptance <<< without that I couldn't move on  and generally pacing myself.  Then it's understanding the flare ups ... triggers etc
    And learning to live with it ... not easy, especially some of the weird ways it manifests at times.  Aching, Burning and electric shocks for me - I swear I'm having shocks in my tongue lately, as weird as that sounds

    Good luck, and as myself and Poppy' say ... we're not medically trained so always speak to your GP for the best advice re: medication

  • Dandy1923
    Dandy1923 Community member Posts: 50 Connected
    Thank you both, you have put my mind at ease.
  • Dandy1923
    Dandy1923 Community member Posts: 50 Connected
    Today's the day, I have my rheumatology appointment this afternoon, it's been cancelled so many times upto now I'm surprised it's finally here, I'm very nervous but also pleased to be finally getting somewhere, will update you all later regarding the outcome.
  • Hannah_Scope
    Hannah_Scope Posts: 7,093 Disability Gamechanger
    @Dandy1923 I hope today went well for you! :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Dandy1923
    Dandy1923 Community member Posts: 50 Connected
    Finally after nearly seven years of pain, tiredness, thinking was imagining the pain, was I just being a wimp!!! A Dr finally listened, now I know what I'm dealing with and how to manage it, I have fybromyalgia.
  • Hannah_Scope
    Hannah_Scope Posts: 7,093 Disability Gamechanger
    @Dandy1923 I am so happy that you have a diagnosis! Not that I want you to have fibromyalgia, but that you have an answer and can move forward with managing it.

    I have a friend with fibromyalgia and she found reading the NHS page on it really helpful. I hope it can help you too :)
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Dandy1923
    Dandy1923 Community member Posts: 50 Connected
    Thank you Hannah, it's such a relief to finally name it and know I wasn't going loopy.
  • Hannah_Scope
    Hannah_Scope Posts: 7,093 Disability Gamechanger
    @dandy1923 I can imagine! I know many people, including myself, have felt the same way when waiting for answers. I will keep everything crossed that the first plan they put you on, is the best one and works for you :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • WelshBlue
    WelshBlue Community member Posts: 703 Pioneering
    Good to hear you've finally got the answer you've waited for @Dandy1923

    Not so good the diagnosis, but like you say now you can get to grips with it.  Acceptance is key 

    Welcome to the club ... 
  • Dandy1923
    Dandy1923 Community member Posts: 50 Connected
    Thank you all, I'm just awaiting my spirometry results now to find out why my sats are so low 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    Do you know when you might receive your results @Dandy1923? Hopefully, you will have the answers you need and deserve soon. In the meantime, please do not hesitate to let us know if there is anything we can do to help - even if that is just listening  :)
    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.
  • Dandy1923
    Dandy1923 Community member Posts: 50 Connected
    Hiya, it's been a month since my spirometry test but also when asking various questions regarding do I snore at night etc, well unfortunately I do, but also there have been several occasions where I have stopped breathing the longest being nearly two minutes which scared the life out of my other half, due to this I have also done sleep apnea screening as there is high possibility I also have that and seeing as respiratory services are dealing with both it's quite possible they will do the one report and they are also behind by three weeks, but hopefully I hear soon.

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