GP doesn't believe in Fibromyalgia!

First of all I would like to say Hi, I am new to the site and this is my first question :-)

I have had symptoms and pain for some years now, resulting in many visits to my GP. She has always been understanding and a good GP with other ailments Ive had over at least 10years. She sent me to the hospital because she thought I had RA the consultant diagnosed me with Fibro. Part of me was relieved to have a reason/diagnosis for all my problems. When I next saw my GP she told me "fibromyalgia doesnt exist" the consultant meant "it wasnt RA so it must be in my head" shes been horrible about it since, very dismissive and last week I went to her in tears feeling I couldnt cope with the pain anymore and she just said "you just have to live with it" "I said its very hard to live with something that you say doesnt even exist" anyway I know the advice would be to change GP but I feel awkward because she has been good in other ways. She gives me pain relief (that doesnt work) and amytrypteline for the Fibro. I suppose my only option is to change GP there are about 5 docs in the practice but im a little scared of going from the frying pan into the fire so to speak.

27 Replies

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  • HI kasha and welcome from me,

    It is good to finally get a diagnosis, but also trying to get some doctors to understand is hard.

    Yes you should find a doctor who does beleive in fibro, and i know it will be hard and i get the whole thing what you say about 'going out of the frying pan and into the fire'. My gp is quite good but we have actually had some arguments but in the end she has always been right. It was her who diagnosed me with fibro but i told her i wanted another opinion as i knew ther was something else and i was right with that one. I had loads of things wrong.

    The just have to live it thing, well i am shocked as we all know we have to live with it but a doctor is there to help are they not???????

    I hope you find one, but i am not comfortable mentioning fibro incase the doctor or person doesnt beleive in it. It so hard.

    hugs, kel xxx

  • Thank you Kel, She actually said to me "you will just have to live with it" AND there are a lot worse off than you"! you can imagine how I felt. I think maybe I will "interview" all the GP's and pick firstly one that believes in FM and secondly one that knows something about it, maybe that's expecting a little too much though eh? lol Ive asked for a second opinion at a different hospital because I am sure I have something auto immune going on so I hope I will get some answers after 14th June. xx

  • How did it go. I have been to all our GPs in the practice and they are such a mixed bunch. I

  • I am sorry that your doctor is so negative towards you. I believe that if you try the other doctors you will instinctively know when you are being heard and supported. I tried a few until eventually I understood I was with the right doctor. What have you to lose?

  • get rid of her she should be aware of fibro . how old is she cus every gp under the age of 35 should be aware of fibro xx

  • Hi and welcome to the site i am glad you have founfd it and i am sure you will get alot from it it is nice that you have writtenb that blog as it is very important to have a GP who helps you believes you .

    as soon as the GP said to me you have to live wioth it i would have walked out to the reception and asked to see the practice manager and arrange to see another GP as you need their support .

    anyway i am sure if someone went into the surgery and were going blind/deaf or had a terminal illness they would not say ioh well you will have to liv with it ??!!!??

    anyway you get yourself another GP love to you diddke x

  • Hi Christine,your comment about G.P going against the diagnoses of a consultant,is a bit of a beef of mine.

    I just cannot understand it,they send us to see a specialist, and then basicaly call them a liar.

    How many rheumatologist`s know this.I was very fortunate in having a good doctor and one G.P in the practice has fibro.

    I just wonder what the reaction would be if those that are not as fortunate as me,asked or wrote to their rheumies and said my G.P is calling you a liar.

    Just a thought.

    Or even better tell the dissbieliving G.P to send you elsewhere if that is the case,to find out what is wrong.

    I know and understand that we are at our most vulnerable when we see these people,but there must be something we can do.

    Hugs Butterfly54 xxxxx

  • hi,i am tryin to get a diagnosis at the mo,thought i would ask my gp for an app with reumotologist,(have seen 2 diferent nuerologists) so he asks me to list all my symptoms.He knows about crippling leg pain and stiffness,so i tell him about not sleeeping,headaches,fibro fog,total exhaustion and he comes up with-wait for it-sleep apnea!! So ticked off,he too doesnt believe in fibro,said it was a last resort diagnosis when all else fails.He has admitted he doesnt know what to do about me,despite my pain getting steadily worse and needing a stick.He also said would i be any better off if i knew what it was?well YES-so i do sympathise with you,i know i need to change my doc,but he has been ok to me up till now.I am so worried about my future health,he just bungs me another pill.oh and i have got to have pointless sleep apnea tests done now .Chin up,you are not alone xxx

  • Hi Kasha and welcome,

    I absolutely agree with everything Christine has said.

    I was a nurse from 1968 - 1998 and before I was diagnosed with Fibro I would have said the very same thing as your GP, that was what we were taught.

    I had a hell of a row with the Consultant who gave me my diagnosis and in the end he just said 'your thinking is very outdated and I suggest you go away and research it', so I did.

    It was really hard for me to get my head round it, when it happened to me. I had to do a lot of reading to accept that what I had been taught was wrong. I still have trouble with the name Fibro (muscle) Myalgia (pain), as it is misleading.

    So I might try is taking some reputable information in for her to read. These three are from varying sources

    This one is from the main Fibro Action web site.

    fibroaction.org/Articles/Fi...

    This one is from NHS Choices (and I think our Lindsey had a hand in writing it)

    nhs.uk/Conditions/Fibromyal...

    This one from the British Medical Journal Group is really meant for patients

    bestpractice.bmj.com/best-p...

    The other thing that might be worth a try, is to speak to the Consultant's secretary and explain how your GP has reacted. Ask for a follow up appointment, so you can ask the Consultant to write to her, outlining the treatment you need.

    I hope that helps a bit

    happy hugs, kate :)

  • error should read - So I might try taking some reputable information in for her to read. These three are from varying sources

  • You say there are 5 other GPs in the practice - personally I would be INTERVIEWING them with a view to hopefully finding one that appreciated your diagnosis.

    WTF is your current one doing? She sent you to the consultant and clearly has NO respect for the diagnosis so why did she refer in the first place? Maybe she's pissed that she didn't spot it?

    If you're getting no-where with any of them, I think I would be approaching the consultant to recommend a GP that recognises what is going on with you.

    I'm sorry - but I am just SO cross with your GP over this. Grrrrrr!

    Hope you get yourself sorted out very quickly.

    Gentle hugs

    Spirit x x x

  • I am sorry for the late reply but Ive been celebrating my grandson's christening and my daughters engagement so not had time for the pc :-) A HUGE THANK YOU to all of you...its so helpfull to hear the views from other people that have been in the same position as me and KNOW what I am feeling and talking about. Thanks to kraftyk8 for posting those links, Im going to have a look now. I think I am going to change my doctor because I am feeling I just dont want to go to se her anymore and thats no good. She has agreed to refer me for a second opinion at a different hospital, I am there on 14th June so I am waiting until then before I do anything. I wonder if I get a second diagnosis of FM if she will still say "it doesnt exist" :-(

    Thanks again for all your support and suggestions I really appreciate it. xx

  • I was booked in to see my heart specialist and he actually asked me if i had been getting the right attitude and help from my gp, this was last week. when i went to the pain clinic once again i was asked the same question also within a week or two ago. I think there is some thing in the air re doctors etc and they are being monitored at last. we can only hope, but you have the right to ask for copies of letters from your specialists when they write to your gp.these can then be used for benefit forms etc. i clipped copies of letters to the forms.but do change your doctor asap the extra stress will do you more damage. butterfly hugs.petal

  • Thank you :-) x

  • after 8 yeares my lady g.p turned on me like that,just turned turtle and said not in so many words that she has people with real illnessess that make less fuss, she says everyone is capable of working unless they are completely paralized from the neck down, (not what she said when she wrote me a letter in the past for appeal against incapacity benefit) i sometimes wish the doctors who don't believe in it spend the last 13 years in my shoes,i would happily swap as i am sure would you,you should have said yes it is in my head , and the rest of my body,try not to get too upset i know i have been there,you have done NOTHING wrong,you are unwell not a criminal and should not be treated as such,try to find a g.p in your area who is sympathetic,take care,you have always got this place to come to xx soft hugs p.s you are within your rights to get a second opinion

  • p.s whenever i see a specialist i get them to copy me into the letter so i always have a copy of what has happened for my records,then they are to hand if you need them

  • THats a good Idea I will do that thenks electricjaws :-) I have an appointment on tuesday at a different hospital for a second opinion of my diagnosis of Fybro...But even if it is said for the second time I have Fybro my doc prob still wont believe :-( If this second rhumatologist says I have Fybromyalgia I am going to ask her how the hell I get any treatment and manage this condition when my doctor says theres no such thing!? I wonder what she will say then? because at the end of the day how can a consultant diagnose you with something that doesnt exist? I am going to look into changing my doctor after this appointment.

  • I feel for you, my doctors are the same pass me from pillow to post all the time because as they have admitted they dot know what to do with me and then the specialist has told me and my mum it is fibro but reduses to right it on my records which stops me from getting a bus pass etc because she says its nothing and ill just have to live with it.she doesnt understand that it will make it easier to live with with things like bus passes :/... i wish or just one night they could go through the pain we go though they would soon realise it is harder to live with then they think :/you should really try a new gp, im seeing a new specialist saturday morning because im fed up of everyone else in my doctors and he is higher up then the specialist who refuses to write her diagnosis on my records, hopefully i get some where this this new man :D and hopefully so do you. X

  • I hope you get some answers on your next appointment, fingers crossed :-) and I totally agree if these doctors could spend one day in our shoes they would be more sympathetic in their handling of Fybro. I was at a wedding all day yesterday and I am completely done in today, I can hardly walk and in so much pain. good luck hun xx

  • when you change g.ps i think you should write and complain about your g.p,you can ask for advice about doing that from PALS which is a patient liason person,also any letters you do get ,if you do need to send them to the d.w.p photocopy them and only send copies as they tend to" lose" them,also evertime you see a g.p or doctor write it in a diary the time and date you went and what happened then you always have something to refer back to ,i learnt the hard way,to do all this, also you should ask the rheumatologist if they could refer you to a pain clinic via the n.h.s,if the g.p you have is detremental to your health ditchthem, i did,i wish they had it for a week they would be crying like babies x good luck let me know how you get on xsoft hugs,

    another word of advice,if you read anything that is meant to be a "magic cure" for fibro, don't buy it , ispent a fortune over the years trying this magic potion ,and alternative magic cures but nothing worked and i wasted a lot of money and cried a lot when they didn't work, so don't get sucked in with those type things,or adverts that say "cure yourself of fibromyalgia" don't waste your money, they are just preying on peoples illnesses,buy yourself a nice bar of choccy instead!

  • Yeah I just bought me and my bf a tub of ben and jerries ice cream yum better then any bogus cure x

  • Hi Kasha

    I'm so sorry your GP has been so unprofessional. How awful for you!

    Why don't you threaten her with a complaint to the GMC (the general medical Council) and see if she suddenly changes her tune?You have been formally diagosed with the condition by a specialist so she has absolutely no authority whatsoever to be so rude and dismissive. The problem stems from the fact that some 10 years ago doctors were trained to believe that FMs was a psychosomatic condition ie not a "real" physical induced problem but rather caused by the mind causing you the pain. Hence the dismissiveness. Which to be honest is still VERY rude. For at least the last five or six years doctors have now understood that the condition is do to with damaged nerves or problems between the nerves/brain (so my doctors explained to me). Even the name for the condition is inappropriate as the word Fibromyalgia means "muscle pain" when of course it technically should be called nerve/brain problems pain!The fact that your GP is being so rude and dismissive may be as a result of a gap in their medical training.

    As well as complaining to the GMC you may wish to change GPs perhaps initially within the same surgery so that in case your GP becomes more sympathetic you could then start seeing her again. Please don't be so worried about jumping from the frying pan in to the fire so to speak as more and more GPs are aware of FMs so it shouldn't be so likely that all the GPs in the same surgery wd be so dismissive.

    love and hugs, Purple B

  • Hi Kasha,

    Like everyone above I have had the experience of a non believing GP. After totally dismissing a diagnosis of Fibromyalgia (that had been diagnosed by a colleague of him that had retired) he finally agreed (after alot of arguing) to write a letter of referral to a Specialist. Imagine my horror when I went to see the specialist who questioned me on my GP because my GP had written that I was attention seeking and it was all in my mind and making it up cos I wanted to be on benefits. The Spacialist then said that I was a 100% text book case of being a fibromyalgia suffere and has written a letter to the GP suggesting that he re educates himself with the diagnosis and treatment of Fibromyalgia. The specialist then referred me to a pain management course for 8 weeks which has helped me.

    In October of this year I am running a half marathon in Cardiff to raise money for Fibromyalgia UK to help them to raise awareness of Fibromyalgia and to lobby parliament and try to make peoples journey with Fibromyalgia an easier one. I never thought that having an illness meant that I would feel victimised and bullied by doctors, government officials and so called friends. No its not a life threatening condition but it will do its best to make me feel shitty for the rest of my life, surely these professionals have a duty of care to help me feel as comfortable as possible.

    Either you can change your doctor or insist on being referred and getting a Specialists diagnosis, you'll feel so much stronger with a good specialist behind you and a concrete diagnosis

    xxx

  • Like others have suggested see if you can enlist the help of your consultant to deal with this problem. Am so pleased I changed GP practices when I did even though the old one is closest to home - my current practice sent me to the consultant with a diagnosis of FM and just needed confirmation.

    I wish you well and hope you get seen my a GP who understands you very soon.

  • THanks so much for all your replies and kind words :-) I have been to a different hospital for my 2nd opinion and had it confirmed again Fybromyalgia and oesteoarthritis - my hand pain is mostly the oesteo but the consultant explained to me that the "normal" oesteo pain I would feel from the oesteo is exagerated by the Fybro...great!....My consultant was not happy when I told her about my GP's attitude, she is writting to her to tell her that Fybro DOES exist, that I have it AND what meds she would like to try me on :-) so I can't wait to see my GP after she's had that letter! and if she is still negative and dismissive then I WILL be changing GP. Thanks again for your support, it means a lot to me xx

  • Hi. My Dr says to me that they only say I have Fibro because they dont know what it is. xx

  • Hi Kasha

    I am so sorry to hear of your problem with your doctor. I do not think there is an easy solution to this since your GP appears good in others areas. I hope that you can convince her of your pain and the need to take you seriously.

    Take care

    Ken x

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