If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Fybromyalgia

Elky1Elky1 Posts: 15Member Connected
My hospital consultant surgeon says that I have Fibromyalgia... My GP says it does not exist and is a load of nonsense. I think the consultant knows better, what do you think? 

Replies

  • steve51steve51 Posts: 5,665Community champion Disability Gamechanger
    Hi @Elky1

    Welcome to our online community it's great to meet you.

    Yes Fibromyalgia is here so your GP is wrong.

    Here's some info for you please have a good look.

    https://community.scope.org.uk/discussion/35522/fybromyalgia

    https://community.scope.org.uk/discussion/36148/help-with-fibromyalgia-stiffness-and-pain

    https://community.scope.org.uk/discussion/34139/fibromyalgia

    Let me know if I can help you with ?????

  • mikehughescqmikehughescq Posts: 3,317Member - under moderation Disability Gamechanger
    Fibromyalgia is viewed as one of three different things. There are some who think it does not exist at all. That doesn’t necessarily mean they think you’re fibbing, although they may. It can just mean they think your symptoms have been wrongly or incompletely assessed.

    There are some who think it is a condition in and of itself. However, they are a subset of the view that it’s the end point of a differential diagnosis. That is that you have reached a point where your symptoms, taken together, cannot be linked to any known medical conditions so the collection of symptoms itself is given a name. This is largely how IBS and CFS also came to exist. 

    What you do next is largely determined by what you want to do with the info. from your GP. You may for example want to ask your GP to refer for a second opinion. That will usually focus their mind.
  • Pippa_ScopePippa_Scope Posts: 5,858Member Disability Gamechanger
    Hi @Elky1 - I have a condition similar to fibromyalgia that often gets labelled as nonexistent, and I would definitely advise seeking a second opinion. Doing so may open up many more support options that you otherwise may not be able to pursue. I hope this helps, and in the meantime you may be interested in our chronic pain discussions.
  • Elky1Elky1 Posts: 15Member Connected
    Thanks all. I am in the process of registering with another practice as I cannot trust my GP anymore. It's a long story but to be brief I have found out he is using his staff to spy on patients via Facebook and wants me off his lists. Hopefully the new GP will be honest and decent and do the job he/she gets paid for. 
  • mikehughescqmikehughescq Posts: 3,317Member - under moderation Disability Gamechanger

    That's an interesting one. If your privacy settings don't prevent this then you're fair game for being viewed, albeit that Facebook settings change so often and are so confusing it's hard to keep up.

    Most people do tend to assume that if someone pops up in "People you may know" this means their profile has been viewed but it's not necessarily the case. Facebook makes some terrifying associations through processes it largely doesn't reveal. I have heard of a case where it connected two people via "People you may know" where one had an injunction to keep the other away. The person against whom there was an injunction needed to get to court to prove it was Facebook algorithms and not them looking at the other persons profile.

    The reason I am commenting is that people do need to be aware that this is not just confined to GPs. If it's in the public domain then it's fair game.

    Whilst I am easily found on Twitter I am pleased to say there's no trace of me on Facebook and nor will there ever be. I understand why people use it but such things always come with risks attached. Nothing to stop any healthcare professional from looking you up.

    However, there is at least a counter argument with appeal hearings if one member has looked you up and the others were not aware of this. Unless the information discovered is revealed at the outset and put into evidence then the tribunal will always err in law as they must always start with a level playing field. One member of the panel cannot have more knowledge of your case than others.

    A good example of a potentially legitimate use might be where you tell PIP you can't walk more than 20m to your nearest shop and a tribunal member looks it up pre-hearing on Google Maps and discovers it's 50m. Provided they raise it at the outset and explain how they came upon it so that every person in the room is aware of it and has an opportunity to address it then it's probably legit. Ditto if a healthcare professional did it or indeed a DWP decision maker.

    Back on topic - yes, second opinion definitely the way to go. Not necessarily from a Fibromyalgia expert though. Often useful to simply ask for a referral to different types of expert. You'd be surprised how often it opens up a completely different line of enquiry in terms of diagnosis.

  • deb74deb74 Posts: 262Member Pioneering
    hi elky1. a few years i got a really nasty vertigo bug and got really ill. a friend of mine looked straight at me and said you have got ME. he has had it for 30 years. i told him what my symptoms were. i then wrote down a list of my symptoms and took it with me to the doctors. the doctor read the list and told me it was probably a thyroid problem, when he realised it was not my thyroid he gave me a 24 heart monitor and when he saw my heart rate was normal he accused me of making it up and said it was all in my head. some doctors refuse to believe either fibromyalgia or ME exist. as for registering with another i have done exactly the same. my old doctors were always mis-diagnosing me.
  • Elky1Elky1 Posts: 15Member Connected
    Sorry its taken so long to respond and thanks for your contributions, much appreciated. My new doctors are first class and doing everything they can to sort out my many health issues. Most of this should have been sorted out be the previous shower but at least I now have good caring GP's that actually care. 
Sign in or join us to comment.