What do I do with my GP who is ignoring my Fibromyalgia diagnosis and diagnosed me with CFS?

The Rheumatologist has diagnosed me with Fibromyalgia. Just before this I was diagnosed with Moderate CFS. My GP seems to be ignoring the Rheumatologist's diagnosis - what does this mean now.....?

Thanks your comments would be appreciated as my GP will be writing a letter for my Appeal for ESA and it's important that she does not dismiss the other diagnoses. (A patient before me was in the same situation who told her that she didn't have fibromyalgia at all and I think the GP is comparing me to her - even though I spoke it was not me? - this is the spanner in the works and has made my diagnosis more complex). Hope this is clear. Thanks again.

16 Replies

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  • Hi Reflections it seems you have a conundrum..... so presumably your GP referred you to the Rheumatologist? Did your GP diagnose the moderate CFS? How long ago did you see the Rheumatologist, letters don't always follow through as quickly as we would like, perhaps you could speak with your GP and ask to see your notes, then you can see if the Letter from the Reumatologist has been revieved. I would urge you to persist in this.

    Soft hugs x x x

    Sue

  • Hi Soulsusie,

    I asked my GP to refer me to the Rheumatologist. Meanwhile when my results were returned as not having Rheumatoid Arthritus - I requested I be referred for CFS and was diagnosed by the referral form as having Moderate CFS. Then my Rheumatologist appointment came up a week later only for her to tell me I had Fibromyalgia. Everything is in writing and GP has copy letter and myself - so it seems complex now - I never expected to be diagnosed with Fibromyalgia and didn't even know what it was - this has all happened only two months ago.

    Thank you for replying.

  • Hello there Reflections, you explained very well your situation. I am so sorry you are having a hard time with your GP. Unfortunately some GP's and Consultants still don't recognise Fibromyalgia, although in your situation it seems unreasonable that you have had a diagnosis and you say your GP does not appear to acknowledge this. I personally think you need to see your GP again to ensure that she is aware that you have been diagnosed with Fibromyalgia by a Rheumatologist as this information will be needed for your application for your ESA Appeal. I wonder do you have your diagnosis in writing?! It will help you if you have any documents/paperwork relating to this so you can present it on appeal.

    It certainly sounds like there is some confusion with your GP that needs to get straightened out. The best way is to talk to your GP and make sure you have her support for your diagnosis of Fibromyalgia and also your diagnosis of CFS too. All this will need to be mentioned in your GP's letter. If you think there is any misunderstanding it's always best to resolve it especially if you need accurate information from medical professionals. Best of luck to you! :)

  • Thank you LibbyDe. My GP has been sent a letter by the Rheumatologist stating the diagnosis and gave me a copy of the letter also. (Her response was that a patient had told her that she didn't have Fibromyalgia at all) so it's a difficult one. Thank you for your suggestion, I think it's really important she recognizes how much pain I am in - Thanks again.

  • Reflections, I wouldn't personally worry about another patient, as long as your GP recognises your diagnosis, your pain and symptoms and all these things are mentioned in her ESA Appeal letter, that is the main thing. I don't know why your GP would even mention another patient's response, no wonder you were anxious. I hope it all works out for you. :)

  • Hi Libby De

    I don't think my GP is recognising the diagnosis as she is comparing me to the patient who spoke with her beforehand saying 'that she doesn't have fibromyalgia' - whereas I believe I have both CFS & Fibro.

    That's the problem unfortunately.

    Thank you for your response.

  • same thing happened to me last week, my doc said I have cfs the other day, i corrected him and said yes and fibromyalgia, his reply was "same thing" but they arnt the same thing, I was diagnosed 2 years ago with fibromyalgia and chronic fatigue/m.e by a rheumatologist, Ive got my diagnosis in writing but hes under the impression fibro and m.e are the same thing, hes so out of date, he's going to be no help to me when I have to appeal, luckily i'm moving area in july and moving to a different gp, hopefully i'll get a more up to date doctor.

    Irene x

  • Hello Irene,

    That was really important for you to remind you doc that you had fibromyalgia too - according to his response you picked up on him invalidating this - I hope you get a better doctor when you move.

    It's important to have a health condition understood and validated by a GP. Thank you.

  • I totally agree with you, I applied for dla a couple of years ago just after my diagnosis and they asked him for a report on my illness, he told them I had widespread pain which obviously was incorrect, he didn't even tell them I have ME or Fibromyalgia so I got turned down, I've asked for another referral to the rhuemy that diagnosed me so l go to see her on may 23rd as my inflammation levels are quite high and they think I may have something else,

    Maybe you should think about changing your gp as I don't think he/she is going to help you in any applications for financial help.

    Irene x

  • Hi Irene, my previous gp was very supportive, alas she retired, I went through every gp to see if I connected with anyone and this one seemed better - I'm going to get a copy of what she wrote to the CAB for my appeal and see what she has said - they seem reluctant to commit themselves. I shall move if it is trivializing my condition or unsupportive. Thank you.

  • well if your GP referred you to the rheumatologist hen why did he do this for what reason did he give you ? mine sai she thought i had fibro for sure but wanted it to be confirmed by a rheumatologist which within 6 weeks and 20 mins it was

    I think you need to go to speak to yourGP about your esa which is coming up and say that you are putting fibro down take the letter you have from rheumy too

    if your GP does not listen to you then i would be enclined to see another GP or see the practice manager if you are not happy they may be able to sort it out as that is there job

    the thing is you dont want the GP to put a spanner in the works or could you call the rheumatologist secretary to see if you can see them again to discuss things but i would go see and discuss it with your GP first then go to practice manager good luck with it love to you diddle x

  • Thanks. It does need sorting out. Nothing is straight-forward is it,

  • i has both ME/CFS and fibro , my GP didn't want to know that i could have both and filled in a form for ESA saying that ME/CFS was tiredness and fibro was possible ,

    i've since changed GP how is mre that happy to write saying i;ve got both

    have sent ESA letter from rheumatologist saying that they found fibro and one from ME/CFS unit saying the samething

    you can have both of these illnesses together

    many GP's don't think you can

  • Thank you. I think my GP thinks you can have one but not both and her mindset says CFS only. I am glad that I made sure I received a copy of the letter.

    I only hope when I receive the letter from the ME/CFS clinic that the GP does not think that the ME/CFS letter overrides the other.

  • Someone sent me a video of the rheumy that diagnosed me doing a talk on fibro, someone in the audience asked her if she thought fibro was debilitating she stands and thinks for a minute and says errrm I think cfs is but not sure about fibro, I've never really Iiked this rheumy after she told me it was in my head and the only treatment she could offer me was a psychiatrist! She tried to blame it on stress but now her opinion has changed somewhat, the lady who sent me the video says she has excellent care from her, my doctor believes cfs and fibro are the same thing but the rheumy doesn't and the rheumy believes cfs is debilitating but isn't sure about fibro, to be honest I don't think any of them really know what they are talking about.

    Irene x

  • I asked the Rheumatologist 'will it go away' and she told me it would! I agree, I don't think any of them really know either. Maybe the psychiatrists should experience this and then say it is all in the mind - how ridiculous is that.

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