GP listened but doesn't believe in fibro

Hi everybody- just an update from my previous post to let you know how I got on with my recent GP visit. As usual, it was an unfamiliar GP but nice enough chap. He suggested running some blood tests for vitamin levels (I thought this had been done previously but seems maybe not) and going down the rheumatology route for pain as this has not been explored yet. That all sounds promising. The only thing that put me off was his attitude to a fibro diagnosis. He plainly said he does not believe such a thing exists and that this diagnosis would be a last resort. It kind of makes me feel like a fruitcake lol. I work almost full time so am not trying to get free money or anything- and recieve no benefits whatsoever so would love to know the reason as to why I would feel the need to make this stuff up :):) . I wish symptoms were psychosomatic as that would imply that I have some control over them which I do not! Long story cut short- I may or may not have fibro - so, I guess it's more of the waiting game and just hoping that I can have more 'goodish' days than bad ones in the mean time...

For myself -some of the pains I do not get are face / hair pain and neck- maybe just the odd 'stab' but not so bad- which seem to be very common with Fibro sufferers, so I am not at all sure if it will turn out to be Fibro or something else.

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  • its really weird how some doctors do not believe fibromyalgia exists when it is on the nhs website and there is lots of information and books about it now (and drugs to help) - they really need to play "catch up" on their knowledge - or we are all crazy 😏 x

  • Hi Neesey- Change your gp that's all I can say!

  • hi caz don't worry I did - my doctor at the moment is fantastic - she gave me a 20 minutes appointment yesterday just to go through things - (she is my 4th doctor in 3 years )- sticking with this one 😊

  • Thanks Neesey for reply :) I agree. Draining when half the battle is convincing medical professionals that you are not a crazy hypochondriac :D x

  • I think it's arrogance because they don't know why your system has gone wrong. Instead of saying well we actually don't know but we shall find out.

    No it's in your head. Just too easy.

  • I'm no doctor but I would guess that its best they run as many tests as possible before diagnosing you, if they just assume its something and get it wrong, the prescribed medication could possibly not help. It does seem a bit rude your GP personally believes fibro doesn't exist, that's like saying 2.7 million people are just having a bad day. We went through the same thing with our doc and it was certainly trial and error with medication and that was with the doc knowing it was fibro. Rest assured that they are at least looking and hopefully they will be able to help you and make you pain free...

  • thanks for reply - yes I'm just glad that it's getting looked into- If the tests show something that can help then great, if not and the pains continue then I guess that would also help point towards a diagnosis. A GP that I went to see last year suggested that I could go on some meds for nerve pain- I forget what now! However, as you say, I felt it unwise to start on meds without knowing what the problem was and I have said the same to this GP who also agrees. His suggestion was anti depressants but I'm not depressed lol - though I know anti- depressants are not used just to treat depression/ anxiety etc.

  • Yes there a lot of various medications out there used in all manners, some are anti psychotic, some help you sleep etc. Maybe your GP wants to get you started on something to see if it helps? No harm in asking him why he is prescribing them and what to expect? My partner started on amitriptyline but was switched to citalopram, I guess its all trial and error.

  • Yes true. I can see that but I'm not keen on starting on meds when I don't know the reason why I'm in pain lol. Only because a lot have awful side effects and then if it turns out not to be correct I could end up worse off :) Thankfully I've not had the really debilitating pain for maybe a month and a half now and the really bad sharp pain I have does not seem to stay for longer than a few mins though I have background pain of some form almost all the time. Am hoping that after these blood tests and some input from the rheumatologist things will be a little clearer and if I do have to take meds then there'll be more chance that they're the right ones...

  • I hope you're doing well!

    My GP is somewhat similar except she acknowledges that Fibro exists but feels like diagnosis is unhelpful as it's an incurable, chronic condition that of course - medical science doesn't fully understand.

    In some ways I can sympathise with your GP, as well as my own - but I believe diagnosis when you have a chronic pain condition is actually helpful. It feels somewhat like your pain isn't all for nothing if you understand me?

    I feel like a lot of us go through the feeling of "wait - is this psychosomatic?" When we have multiple test results explain "there's nothing wrong". It's frustrating and upsetting - but just keep going! :) you are of course well within your right to change GP to one that better understands your suspected condition.

    Good luck and please do update us x

  • Hi :)

    Yes I can understand some GPs attitudes also. But you are right- a diagnosis is helpful. When my pains first started you do assume the worst- pain being a warning that something is wrong. To have no explanation for pain is a difficult thing to live with for the rest of your life ! Not only that- but sometimes pain may not be being caused by the fibro and could be something else! This is also hard to deal with..

    Thanks for reading my post and listening- I can tell that you know only too well what I'm going through x

  • Hi bekkey

    I was just wondering if you asked your GP if he thought you had Fibromyalgia?

    Doctors hate being "told" what you think you may have.

    Unfortunately for us genuine people there are others that cotton on to this invisible illness in order to claim benefits and so those people don't do us any favours at all.

    The main way of being diagnosed is by seeing a Rheumatologist, so now that you have a referral, hopefully you will be getting a definitive decision either way.

    It can take many years to get a definitive diagnosis. I know it's not easy trying to be patient whilst we are suffering so much, but at least you are on the right road now.

    I think Fibromyalgia scares doctors because they don't know enough about the illness or how to help us the best, so rather than just say that, they say it doesn't exist.

    Good luck with your appointment my friend

    Lu xx

  • Hi Lu,

    I am trying to rack my brains now for what I said lol. But no- I didn't say so. I started by asking if he had read my history which he didn't seem to take offence to- as my symptoms have gone on for some time ( GPs first thoughts were MS as I also had dizziness, numbness and burning sensation). I then explained that I was still concerned and still getting pains especially the sharp pain in my abdomen which is the most frightening when it happens. However, I also have a diagnosis of IBS , but don't feel that this accounts for the random pains I feel in various body parts! His first thoughts were the vitamin tests and going down the rheumatology route. I suppose when I said random pain all over he was thinking along those lines. He was a bit younger for a doctor- say 30s- and other than his thinking about fibro was pretty approachable so I will how it goes with him for now. I know what you mean about some doc's being funny about being told lol but at my practice, a GP once asked me what do you think it is (!) ? and I had no clue-I don't know which is more frustrating :D

    Thanks Lu for your reply, it helps a lot to have people who understand what you're going through x

  • I am glad to hear your doctor is nice enough but unfortunately his attitude towards fibro of “does not believe such a thing exists” is typical of a lot of GPs who I assume have neither the time nor the inclination to research the subject thoroughly. The trouble with the condition is that there are no definitive tests for it which doctors no doubt would prefer to have. As a result the diagnosis is arrived at largely by a process of elimination which inevitably involves some personal opinion. It appears to boil down to a matter of belief with some GPs rather than medical fact. This is why we have to push not just for more fibro research but also for the education of medical professionals. It may transpire in the future that there is a breakthrough and it is discovered that these group of symptoms are due to something specific or are given another name. Until that happens, GPs have to acknowledge and accept that they are all very real and go by the name of fibromyalgia. This could all be a moot point for you as you may not have it but I wish you luck and hope you find a sympathetic doctor and the relevant treatment for whatever ails you. Take care lovely xxx

  • Hi Ramjets,

    Thanks for taking the time to reply...yes that seems to be the case that many GPs need the objective evidence in the form of test results that show conclusive proof of some physical ailment! So far- whatever it is that's wrong with me and fibro seem to have that in common- in that testing thus far has not shown anything that points towards my symptoms. Either that or tests done so far have not been the right tests?! I don't want to have fibro or anything else wrong with me for that matter but at the end of the day - when symptoms get really bad- it's frightening not to have a diagnosis! If someone has diabetes or an irritable disease or anything else that can be proven they get a lot of support and specialist help but without having a name for things or having a name but one which some GPs believe is a 'soft' diagnosis there is really nowhere to turn to. As you say, hopefully I will find a doctor who at least believes in my ailments- that would be a good start :) xxx

  • Being diagnosed with fibro was bitter-sweet for me. I had over 4 years of not knowing why I was suffering all these different symptoms and with scans and blood tests coming up negative, I sometimes felt like I was going round the twist. Finally having a name to call it was in itself some relief although like you I didn't want to have something wrong with me. At least though it stopped me feeling like a total hypochondriac, gave me the opportunity to research it myself and help in my own treatment. There is a rigmarole you have to go through but the fact that you have been referred to a rheumatologist is a step in the right direction. There are GPs that are supportive of fibro-sufferers so if you eventually find yourself in that group then I would consider changing GP as you need them on your side. xxx

  • Thanks Ramjets- I can understand where you're coming from. You feel guilty almost when scans and blood tests etc show nothing :). It does seem like such a long time to suffer with something- 4 years. When I think back my first pains started after I gave birth but they were not terrible and I didn't push things with the GP. I know that bodies change after pregnancy and put it down to that but that was 3 years ago and things never subsided only got worse at times and sometimes got a little better but I am not the same person I was before the random pains. I will certainly try to be more proactive in finding a supportive GP as you suggest xxx

  • Its not God! They can't choose to believe or not. Its a recognised condition by the NHS, whom he works for! The a**.

  • Lol :D but you are right ...if only the non believers could experience it for a few days

  • Hi bekkey

    I shake my head at the doctors who refuse to accept there is such a thing as fibro.

    If you would like to enlighten him, our mother site fmauk.org can send a fibro information pack anonymously to your surgery.

    May be worth a shot!

    Xx

  • Hi bekkey

    Thank you for your update, it is genuinely appreciated. Although I can understand any doctor wanting to be thorough and precise prior to any diagnosis, it is mind boggling that a doctor does not believe in a recognised condition? It almost smacks of 200 years ago when doctors of the day put patients with Multiple sclerosis into mental hospitals.

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Thanks Ken- yes it is very odd that some doctor's don't recognise the condition. Either it's real or it isn't, and if it wasn't real, then like others have said, why on Earth have an NHS info page devoted to it and fibro specialists and why even bother having a name for it? It seems that a lack of understanding of this condition is rife amongst health professionals.

  • Good luck my friend.

  • Change your doctor,sounds like he needs some retraining to bring him up to date. Ask for test to check your electrical response to pain

  • Thanks for reply Sickalot,

    Yes it does seem that he may need bringing up to date. I was surprised as he's fairly young for a doctor (30s, maybe even late 20s), so would have thought that his training on the condition would be up to date! ...and will keep that in mind about the electrical test- have not had one yet- so anything that gets me closer to a diagnosis- whatever it may be.

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