Dealing with chronic pain
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Fibromyalgia - GP refused to refer me

[Deleted User][Deleted User] Posts: 0 Listener
edited November 2018 in Dealing with chronic pain

I don't know if anyone else has been in this situation. I've been diagnosed with FM by three different GP's, none of them has referred me on to anywhere else and I've been told that I need to see a rheumatologist for a "proper" diagnoses, is this correct and what can I do to get a referral? 

I asked one to refer me, she declined and said she would need a good reason because the NHS are backlogged and the more recent one did blood test, asked if I had been referred and when I said no she said they would pretty much do what she has and that's to rule out other problems, again not wanting to refer me to anywhere.

My Son said he would email the manager of the surgery and explain to her and see what she says but I've tried this before with something else and it didn't help.


  • 70keepgoing70keepgoing Member Posts: 12 Listener
    Hi. I got referred to rheumatologist by gp,  They then referred me to pain clinic and then they referred me to pain clinic, both rheumatologist and pain clinic diagnosed fibro, it took a long wait for appointments though
  • AnkyieSponAnkyieSpon Member Posts: 138 Pioneering
    Hi @WF2k sorry your having this experience with your GP, your son is right to complain. It just goes to show how little GPs know about Fibro as I can't be diagnosed by a blood test or xray! The blood test can only file out other possibilities. I was diagnosed nearly a year ago by my rheumatologist who I see for my Ankylosing Spondylitis. He tested me by checking if I had tender points . Fibro unfortunately is another one of those conditions that for a long time and still by many is considered to be in our heads. Keep insisting with GP, they should not be saying to you that hospital is busy so can't send you, that's unprofessional. Here's a few links for you to look at  http://https//

    Feel free to ask me anything I will try to help, it is new to me to. I was diagnosed with Ankylosing Spondylitis nearly 5 years ago and had just got the hang of that condition when I was told I had fibro, now I have no idea which pain is what but I'll help if I can.

    (Ankyie Spon)
    I'm a Pain Warrior
  • Firefly123Firefly123 Member Posts: 522 Pioneering
    I was in the same boat as you my GP kept saying we should wait I ended up going private for my first appointment to get the right advice and a proper diagnosis. He told my GP I need reffered on as have all the weakness points and would need have ultra scans on shoulders and pain management I now have an appointment for December and I'm counting the days. 
    I'm sure they would keep saying just wait if it was them in so much pain for months 
  • mikehughescqmikehughescq Member Posts: 5,341 Disability Gamechanger
    There is a cost when GPS refer and this some are reluctant. A formal complaint should get things moving. 
  • [Deleted User][Deleted User] Posts: 0 Listener
    edited November 2018
    Sorry, @AnkyieSpon I should have explained properly but I tend to start waffling, my anxiety is playing up a fair bit due to the DWP bothering me yet again, I'm really stressed and worried about that which has also had an effect on my FM. My original PIP claim wasn't based on my FM though, so I don't know why I'm worrying so much.

    In regards to the blood test, she said she was ruling out other causes, not that I fully trusted in regards to one of the things, a syndrome I thought I might have, I can never remember how to spell it, I'm sure it can't be diagnosed with blood tests, the GP that asked for the blood tests asked if I had been referred, when I said no she said they would do just the same as she has and would rule out other problems.. so I guess that was her excuse for not referring me. 

    @Firefly123 yeah someone else suggested going private but I wouldn't be able to afford it :/

    @mikehughescq thanks, I think my Son's going to be emailing the practice manager and asking why the GP's don't seem to want to refer me, it could be what you've said but it would be nice to know.

    Also, someone suggested I request an FM pack to be sent to them via FMUK, so I've done that.

    Thanks for the replies :)
  • [Deleted User][Deleted User] Posts: 0 Listener
    Was just wondering, do you have to be within a certain distance from a GP surgery to be able to register?
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @WF2k, you may find this NHS page on patient choice of GP practices helpful, lots of useful information in there!
  • AnkyieSponAnkyieSpon Member Posts: 138 Pioneering
    @WF2k don't worry, I have anxiety issues too. 
    (Ankyie Spon)
    I'm a Pain Warrior
  • [Deleted User][Deleted User] Posts: 0 Listener
    edited November 2018
    I emailed FMUK earlier who have said:

    "A GP can diagnose fibromyalgia in the same way as a specialist - and their diagnosis is as valid providing that tests have been done to eliminate other potential conditions. Our understanding is that the NHS is encouraging more diagnoses to be made at GP level, with only the more complicated cases referred on to a specialist consultant. We are also unaware of any DWP rules that state a diagnosis must be made by a specialist."

  • AnkyieSponAnkyieSpon Member Posts: 138 Pioneering
    @WF2k well thats great, I'd say that's enough evidence to give to your GP. It's so frustrating isn't it not being listened to. Keep fighting ☺ 
    (Ankyie Spon)
    I'm a Pain Warrior
  • [Deleted User][Deleted User] Posts: 0 Listener
    It's not the GP that needs telling, it's the people that keep telling me a GP's diagnoses isn't good enough :/ 

    I've been diagnosed more or less three times by three different GP's, the first one did the pressure points test, she was looking at a sheet but she did it none the less, the second I spoke to agree with the first and the third one did blood tests to rule out other problems, they came back normal so as far as my GP's are concerned, I have FM.
  • sheZZasheZZa Member Posts: 232 Pioneering
    If it helps, I was diagnosed by a nurse in the pain clinic and the Head of the Pain Clinic confirmed it. My gp accepts their diagnosis. I have not seen a rheumatologist but have had blood tests to rule other things out. 

  • HelenD001HelenD001 Member Posts: 5 Listener
    Hi WF2k....I am a new member here and have only just read your post.
    I have fibromyalgia, amongst other conditions. I was diagnosed by a rheumatologist in 2014 but I had previously been told by my gp a few years previously that I didn't need to be formally diagnosed by a rheumatologist to receive any treatment available as my gp was able to prescribe any medications or treatment needed. I hope this helps as it seems you can be diagnosed by a rheumatologist or a physiotherapist or your gp. When I was diagnosed by a rheumatologist I only saw him once and then after he diagnosed me he then referred me back to my gp for treatment which is quite normal unless you have further problems or complications which mean you may need to remain under the rheumatologist.
    I had been suffering with fibro for many many years before being formally diagnosed. I hope this helps but please feel free to ask any questions you may have as I belong to a few Facebook groups for fibro and my other conditions.

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