Dealing with chronic pain
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Fibromyalgia or fibrositis?

[Deleted User][Deleted User] Posts: 0 Listener
edited February 2019 in Dealing with chronic pain
Hello, I hope everyone's doing ok.

I just have a quick question.

Is "fibrositis" coding still used for Fibromyalgia? I've noticed that the previous GP that diagnosed me in 2014 with FM had put fibrositis unspecified, the medical centre I'm with atm is trying to tell me it's ok but it's not what other people and information on the internet are saying (the bit of info I've managed to find). Fibrositis is an inflammation of the connective tissues/muscles but we don't get swelling with FM, on the net, it says it was a term used years ago before someone called it fibromyalgia and that it's a misnomer.

Does it even matter if it does say fibrositis rather than fibromyalgia?

Replies

  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Interesting question @WF2k, I hadn't even heard of the phrase fibrositis until you mentioned it. It doesn't seem to be mentioned on any of the leading UK fibromyalgia charity websites (as far as I can see) but it'll be interesting to hear others' thoughts.
  • poppy123456poppy123456 Community champion Posts: 18,542 Disability Gamechanger
    I was diagnosed with FM more than 7 years ago and i've never heard it being called fibrositis.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • [Deleted User][Deleted User] Posts: 0 Listener
    @Pippa_Scope @poppy123456 The assistant practice manager is trying to tell me it's called that as well as FM, so I'm responding to her letter and trying to explain what I've said in my original post. I'm also trying to get info to send to her as well in regards to it. Before one of the GP's left the medical centre I spoke to her about FM and being referred, she declined and went with my previous GP's diagnoses and said she would update the coding for it correctly but never did, when I mentioned this to the medical centre the APM tried to tell me it's also known as "fibrositis" and wasn't sure what I wanted changing. In saying that she said a lot of stuff she didn't need to and addressed things I never asked about. I'm currently thinking about moving to a different medical centre but I'm worried because I have impending PIP and ESA assessments.

    This is one sites I found but I don't think I can show her this because it's someone answering someone else's question?

    https://www.disabilitysecrets.com/fibro/fibro-how-fibrositis-different.html

    Also when you search for fibrositis, you get the following page, so it's all a bit confusing.

    https://www.myvmc.com/diseases/fibromyalgia-fibrositis-syndrome/

    PALS suggested I ask NHS England but they've not responded.
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    I wonder if it could be worth contacting one of the fibromyalgia charities directly and seeing what their take is on it, @WF2k?
  • [Deleted User][Deleted User] Posts: 0 Listener
    @Pippa_Scope I tried FMAUK, they didn't know and suggested I tried PALS, I tried PALS and they didn't know and suggested I try NHS England, I'm still waiting for them to respond, so I'm a bit stuck. I tried another one (can't remember the name) and they didn't know either.
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Oh how frustrating @WF2k, it sounds like you've been doing the rounds!

    My only other suggestion would perhaps be specific fibromyalgia support groups on social media. I'm glad you've had at least some input from our community members too!
  • djbantiquesdjbantiques Member Posts: 43 Connected
    My wife was diagnosed with fibromyalgia about 17 years ago.
    Her GP at the time, very old school, used the term fibrositis when first referring her to a rheumatologist.
    I think everyone apart from him has always said fibromyalgia.
  • [Deleted User][Deleted User] Posts: 0 Listener
    Thank you @djbantiques

    Yeah, I'm currently trying that as well @Pippa_Scope thank you :)
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