Fibromyalgia - Page 4 — Scope | Disability forum
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Fibromyalgia

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Comments

  • marmalade
    marmalade Community member Posts: 69 Pioneering
    That's awful. I think you need a second opinion. I am assuming that you have been tested for all conditions and they have all been ruled out? I started with just taking ibrufen and it worked for a year or two but I was in full time uni and wanted to keep going and I was working too so it wasn't enough so I am now on pregablin, amitriptyline and naproxen or cocodomol. Last two I take when I am particularly sore or when I have a flair up. Is there another doctor in the surgery you could speak to? I had to speak to the main doctor and make a complaint before I was taken seriously.  It's a bad enough condition to live with without being made to feel like that.
  • deb74
    deb74 Community member Posts: 814 Pioneering
    Hi @marmalade. He is the second doctor I have seen. I used to go to another surgery but the doctors there were useless. The doctor I saw on Thursday was the one who diagnosed me with fibro and ME. The doctor I saw at the other surgery accused me of making it up. Most of the people I know with fibro have just been left to get on with it by their doctors. As for being tested when I first went to the doctors with pins and needles and aching in my fingers he said it might be arthritis so I had an x-ray and a blood test which showed nothing then I had an mri and nerve conduction test in case it was carpel tunnel or a trapped nerve. Then things got worse and I was getting lots of symptoms so I went back. I had another couple of blood tests and talked to the doctor about the symptoms and he said I had ME and fibro.
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    Hey i am diagnosed with fibro also. 5 years since this and its still happening. Its not a nice experience but you have to do your best to enjoy the good days and do what u can to minimise the flare ups. Seems everyone has their own journey with it. For me doing exercise as little or as much as i can do helps me. I try and eat healthish and do lots of stretching. I was on opiods but i got dependant on them and their effectivness started to wain. Currently trying my best to stay off pain killers but take cocodamol 30s at night in absolutely necessary. 

    But its kind of trial and error. Ull find ur way. 



  • deb74
    deb74 Community member Posts: 814 Pioneering
    hi ricky1040. Felt a bit wobbly on Friday morning and was on the crutches for a bit until I got going. Wasn't too bad yesterday. I went to see my aunt who has just been diagnosed with cancer. This made me realise how lucky I am! The annoying thing with fibro is not knowing what you will be like from one day to the next, but we all know that.
  • jotom2269
    jotom2269 Community member Posts: 8 Connected
    Hi @deb74 I'm a fellow fibromyalgia suffer and also suffer with tremors and numbness, my fingers are the worse and I have little or no sensory feeling in theM whatsoever for the best part of a year now.At first I found it very inconvenient and frustrating. My GP sent me for the same nerve testing to rule out carpal tunnel but that came back fine. However, my B12 was really low, since starting B12 injections back in October last year these symptoms have improved and I was advised to take vitamin D tablets at the pain management clinic that I attend for fibromyalgia and ME. Hope today hasn’t been too bad for you
  • deb74
    deb74 Community member Posts: 814 Pioneering
    Hi jotom2269. I have been ok today thanks. I have been taking vitamin b tablets for years and I also take vitamin d pills to help with my arthritis.



  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    U hit the nail on the head @deb74 its the unpredictability of it that gets me annoyed. I wanna make plans and do things. Also i wish i knew ahead of time when id be ok so i could start back to work again i miss it. Never thought id say that sentance but i do. But we gotta work with what we have and make the best of it. 
  • deb74
    deb74 Community member Posts: 814 Pioneering
    Hi @ricky1040. I work for myself so if I am having a bad day I can take the day off. You are right about making plans. The only thing we can do is rest before we do things and hope it works. I have worked for myself on and off since 2007. I did work in a local factory for 7 months in 2016 and I absolutely hated it! I like the freedom of working for myself.
  • Nevaehisill
    Nevaehisill Community member Posts: 8 Listener
    Hi how’s everyone doing?
    Well I got a rheumatologist referral. They said it'd be at most 6 weeks before I get an appointment and it's been closer to 11 now. Can't seem to get answers from anyone as they don't know if I have arthritis aswell or not. I'm in so much pain but literally cannot get word from anyone and it's making my mobility suffer. I used to be able to brave face it but now you can tell when it's me coming upstairs by the "ouch" after every step😭😂
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
    It sounds like the pain is getting worse for you @Nevaehisill which is not helped by the long waiting lists and lack of answers and support  :( Would anything help, in the meantime, while you wait for an appointment, answers and support?
    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.
  • Nevaehisill
    Nevaehisill Community member Posts: 8 Listener
    It sounds like the pain is getting worse for you @Nevaehisill which is not helped by the long waiting lists and lack of answers and support  :( Would anything help, in the meantime, while you wait for an appointment, answers and support?
    I'm not sure what I can do in the meantime. I'm just trying to push through and get through the pains until then but it's a, real struggle 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,978 Disability Gamechanger
    It does sound like a real struggle @Nevaehisill - as someone who lives with chronic pain, I can only empathise with you. You are doing so well to push through it but you shouldn't have to. Sending you hugs and a listening ear  :)
    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.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
    @nevaehisill I'm sorry to hear you are struggling. Can I ask, have you spoken to the secretary of the rheumatology department? They may have a cancellations list and you could hopefully be seen quicker :)  
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • ebond1602
    ebond1602 Community member Posts: 28 Connected
    Hello....I too suffer from Fibromyalgia, was finally diagnosed in January 2013, after many poke, prods, x-rays, MRI etc, which lasted approximately 2 years.

    My Dr now is absolutely amazing. She is the only Dr I have had that listens.

    I am now experiencing a tremendous amount of pain all over my body and my balance is not great anymore.

    I was awarded PIP in May 2023, but only the basic Daily Living Component, and I have had complete a form for LCWRA, for which I will need to attend an assessment. Stress and fibromyalgia don't mix, as we all know.

    Sorry for the long post.

    Hope you are all well.

    Thank you

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