My lot are pompous do nothings, who have given me this diagnosis out of thin air, with no scans or tests & then say there's no medication or support that can be given for fibro...great gig if you can get it at £80k+ pa.
I've an appointment tomorrow & I won't be leaving until I can get some help.
What actual help is there though? Is this thing even real, or just a made-up something to say & then then can say there's no help & they've done all they can.
Any scans, treatments, meds, support that aren't crap.
He gave me a phone number to a 'help group', that had been shut down 10 years ago - for real.
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cosmondo
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You sound very fed up . Which I understand I can’t speak for everyone but I’ve had experiences where don’t hear what you’re saying to them or how it affects your quality of life . And I’ve found that a lot of GP are not familiar with fibro at all. Some many years ago a GP said that fibro was made up ( his retired now ) .
Do you have other GP at your surgery sometimes it’s best to see a different who has a different approach.
I’m new to ideas and struggling with back pain today can’t love even after all the meds so there may be some others on here who know better
The only time I ever had a doctor I'd visited for chronic pain take me seriously, it wasn't me he responded to hahaha. The doctor refused me any help.
My husband called, and threatened to get a lawyer and sue him if he didn't give me a recommendation. Bingo, one visit only the bast*rd. The specialist I went to found out what was going on, got red in the face, and said "I'll handle this." He disappeared a few minutes, walked back in the room and said, you're all set. That won't happen again.
Hi there I found the doctors at my last practice if spoke of more than 2 symptoms they would shut me down or stare at me as tho I have just fell out of there backsides I moved to a new practice after a couple of visits and good look at my records and come to a conclusion that I have fibromyalgia
I'm sorry to hear yet another Fibro warrior is having problems with their GP,😞😞
The older ones are a bit old fashioned I'm afraid and do not want to learn about modern medical issues and treatment, I know from my own experience and frustration how some just don't want to have to admit they are wrong and this illness and all the jolly off shoots that come with it,
OUCH,Why do you say, Is it even real?? If you have to question it at all maybe you feel you may not suffer this crappy disease, I would rethink what you are actually looking for from your GP and what you think should happen next, The scans,blood tests and what ever else you may get sent for are ruling out things that are detected or not and can be put aside,
So maybe your GP has been looking through your records and has seen with your previous visits are pointing towards Fibro, It is real,There is help, Not just forums, You could ask for a visit to a local pain clinic, (sometimes there will be a wait) They know what a lot of us have been suffering,
There is no cure at the moment but until then you can find ways to help your pain or you could work with your GP and start testing which drugs will help but not totally get rid of your pain,
An awful lot of us Fibro warriors end up having some time with a mental health clinic (no shame in it) Why not write down a few things you want to know and ask him/her about how the have come to your diagnoses, Try to be calm if you go in angry and frustrated you may not get the result you want, Failing this ask to see another GP
I hope you get some answers at your appointment and keep us all informed
My thoughts exactly when it comes to GPs, I gave up on them years ago. What have they based your diagnosis on? Do you think you have Fibromyalgia?
If so my advice would be to read up on it, some really helpful books out, one of my favourites being muscle pain and Fibromyalgia by Dr Leon Chaitow, the book covers Chronic fatigue syndrome and MS.
I'm sorry I can't give advice regarding GPs , but I gave up trying years ago - a complete waste of time for anything not just Fibromyalgia.
Hi cosmondoIm sorry you've got a GP who isnt skilled in fibro. There are no tests for fibro, but they should have completed a full screening to rule out other conditions, in order to make the diagnosis. Ensure this is done first.
Have a look at NICE guidelines, ask for a referral to the MSK service for an assessment of pain with an advanced practice physiotherapist. They can help, also if you have one in your area they can refer you to the chronic pain team, who can also support.
Take a note book and write it all done, take your time dont be rushed by them. I wish you luck
Don't alienate your GPS they know little about fibro. Arm yourself with knowlegde about it, it be prepared to list symptoms, join a group locally if you can and ask your gp to refer you to a pain clinic. You are in it for the long haul. Took me 12 yrs to get a diagnosis from 1985 to 1997. You will become the expert in this given time. What suits/works for 1 person doesn't work for another. Take care. Anger makes it worse but don't give up and stay strong.
this is crazy, they should have done blood test, to rule out any other symptoms, have you had your thyroid checked, lots of reasons why bloods should be done 1st, you should have been to see a rheumatologist, if your doctor doesn’t know about fm, personally I have a brilliant doctor, she keeps up to date on all fm, and related illnesses, she has sent me just about everywhere, from fm to nerve damage, to trying me on all medications, which I can’t tolerate, write everything down, so you don’t forget anything, and go armed, with your replies on here, it strange how some gp don’t have a clue, but they should grrrr.
It may be difficult, but you are more likely to get sensible help from a younger doctor. The older ones are often set in their ways, and unwilling to change, I have found.
I'm not being ageist,as I am 76, and I was a nurse, but not all GPs keep up with the newest knowledge. When I was a child my doctor shocked my mother and I by proclaiming that there was no such thing as an allergy!
It’s hard at first to be told it’s Fibromyalgia and not something more specific and well known, as the symptoms are so bad. But be relieved that it is likely to be fibromyalgia and not something more life threatening, it is common after all.
It’s learning to live with it and accept it and make the most of your energy levels that counts. Don’t waste it on anger for too long.
I would advise you to also send a strong letter to the Practice Manager at your doctors and also one to your local Health Authority. There are too many couldn`t care less doctors, Good luck
Have you had any positivity come from such an action?
I don't hold much faith in them tbh & I had some relief by telling her to her face what I thought of them (without swearing, raising my voice or any threatening behaviour).
I would write a letter of complaint, if I thought it would help. I also felt much better by putting my point very bluntly directly to her face, with politeness & without any respect.
Nourall1985 post says it all, good you are standing firm and get your point over, some people will try medications too help ease their symptoms, some take the route of holistic approach , I will pace myself every day and make myself take mini breaks ,if you go online it should tell you any support groups in your area that are active and met up say once a month that type of thing, well the doctor didn’t sound very helpful ☹️I think what gets me too is when you see someone different every time at surgery’s and you try and give them a quick run down of your conditions (just being helpful as if they don’t know you personally you they then sit and wait as they go back threw your history)never any comments like yes can’t be easy living with this condition ☹️if people walked in our shoes they might realise😫
I sympathise, it took me several years to get a diagnosis. Then it was from a pain clinic and not a GP. If I come across a GP who questions the existence of Fibro, I remind them I didnt diagnose myself and if they dont like the word 'Fibro' then call it whatever they want, but Im there for help and Im not a hypochondriac.
hi there sorry to hear your having such a bad experience most doctors don’t know anything about fibromyalgia you need to see a specialist in this area ask your doctor to refer you to a specialist rheumatologists are usually the people who diagnose the condition and advise the best course of treatment if your doctor doesn’t listen tell them you want to be referred to a rheumatologist who specialises in the field don’t be put off by the doctor telling you they can’t help tell them you demand to see a specialist , the doctor may put you on a waiting list make sure you ask him how long you have to wait if that is the case . If you get no joy go see another doctor in the practice and if you are still not happy with the service change your medical surgery practice this can help you as my friend did this and got a far better service than their previous doctors surgery practice. Good luck.
This clearly sets out symptoms and gives other information. I am still waiting for an appointment/phone call for a diagnosis but I think research and understanding is the best self-help as I do not want to take any drugs although Ibuprofen helps me at night to sleep better. It seems people suffer in different ways and have other conditions alongside so you need to learn what is best for you and try to manage it.
I've saved this to speed dial thank you. I've had a quick scan & I believe this will be very helpful. Thank you to everyone & hopefully I can learn from the forum.
I'm coming near to the acceptance stage I feel, but not there yet.
Reading & researching this for myself seems the best option, I haven't the stamina to listen to gaslighting drug dealing GPs anymore.
I know the feeling, their "knowledge" is outside of their 'field', they might 'make up' their own medical theories😵 I had a GP who for nearly four years, stuffed me full of pain killers [hoping the pain would 'just' go away, try to get rid of the pain effect, but not the cause🙄] I knew I had a benign tumour on my left elbow, GGR! it was in a local practice, he X-rayed my hands🙃, [the pain the benign tumour, I could actually feel] the last straw, I just changed my GP who knew it was 'outside' his particular "range of knowledge", I had my elbow MRI, diagnosed, and surgically removed, but my new GP had the gumption, could see that I had a long term problem, and consulted other medical fields, he had that all done in three months🤗 Long term side effect of my former GP, I have developed High Pain Threshold😤 pain killers do not work on me, brain gives out wrong signals! Meanwhile my new GP and I always talk to each other face to face, first names only👌
i havent been able to read all of the replies, so maybe this has been said before
1) is fibro real? - yes! fibromyalgia is a very real thing that does affect people. a systemic pain throughout the entire body. however, it may be a misdiagnosis. fibro is a kind of condition where doctors are supposed to rule out other conditions first. so if you had no real testing done (blood tests and an MRI/CT scan), it sounds like your gp might've "thrown in the towel", so to speak.
2) what do you do now? - if you're not sure about your situation truly being caused by fibro, read up on fibromyalgia and its diagnostic process. find out what tests and procedures other people had in order to get the diagnosis. then go to your doctor and say "hey, you didnt do this test on me. run this test because i don't agree with your assessment". you can also look into conditions similar to fibro (ME/CFS, lyme disease, arthritic conditions, hypermobility & EDS, there are more but this is what jumps to my mind) to get tests to ask for from them.
3) what if the gp refuses to run the tests? - file a complaint with your gp. if that doesnt fix it, file a complaint with your local NHS trust. something to the effect of "i was diagnosed with fibromyalgia without any of the proper testing. i feel like my concerns haven't been taken seriously". fibromyalgia and conditions like it are often missed by gps, so yours better have a very good reason for jumping to fibro as the conclusion. and if your gp is taking the quick route out and giving you a diagnosis which they don't have to do much about, theres a chance they might be doing it to other patients. you should also be able to seek a second opinion from another gp.
ultimately, you have two options i think: one is to push back against the diagnosis right now in order to get assessed properly, and the other option is to push on with seeking the typical treatments for fibro and see if those work for you.
The only time our surgery wants to actually see their patients these days, is at Jab time. (they send nice letters and then follow up with the personal touch if you don't quickly make your booking. Anything to get folks to roll their sleeves so they collect their bonus!)
The rest of the time, you can go fish.
Just read article (Daily Mail/Guardian survey) saying how people struggle to make appts, see a Dr, talk about more than one thing etc. It's alienating the old folks with so much done on-line, and people with complicated conditions feel unheard. All very sad and getting worse.
I think apart from emergency medicine Drs are making themselves increasingly redundant, as patients get out their medical encyclopaedias, go on line for advice and self prescribe and medicate. Even if you do get an appt, most people say they feel rushed and many say they need more time. How can you trust the GP has understood when he hears a fraction of the picture?
I'm sorry to say this but I think we who suffer would get more help from a vet than obnoxious aragant doctors .when it comes down to the health authority they don't train doctors about these labels and conditions because of the links with chemical poisoning . we new more about bse ( mad cow disease ) than we do fibro and that came about after chernobyl these labels and conditions have been renamed for the last probably 200 years. fibro was re labled in 1990 from fibrosis but yet doctors say they don't understand it . I've got to the point where I'm sick of the lies and don't bother with the docs anymore regarding my fibro it saves me getting stressed and making myself ill .
That's where I am heading I feel, it just increases anger/stress levels without any positive benefit. Can I ask what you do to help yourself, if you've stopped going to the doctors?
After 25 year's of suffering and questioning B deficiencies only to be told everything was fine I now take B supplements and folic acid as five years ago I was told I have a folate deficiency which left untreated like B12 deficiencies cause the same problems as fibro. I also self injecting B12 hydroxocobalamin every 12 weeks which helps with the cognitive problems. As for the pain and discomfort I just deal with it as there is nothing that works anymore hot bath's use to relive some of the discomfort but that can be very expensive now especially the way the utility companies are robbing us 😄. The weather changed two weeks ago and my body is getting worse as winter is drawing in monitoring how much I move on a daily basis helps but life becomes boring . Accepting your own issues and monitoring life is the only thing I think you could do now depending on how your fibro effects you . I haven't worked for the last nearly 5 years now because of my mobility and cognitive problems getting worse . Even when you've accepted your own issues and problems be aware that the pains and sensations will vary and hange other issues will pop up along the way .understanding what is going on with your body helps and knowing when to just take a break from day to day life . I hope this helps I'm going to have to stop now as this has worn my brain out take care and put yourself first
Excellent advice, I'm finding my own way & much of what you describe is the very same path I find myself going down. Thank you for taking the time to share your experience & thank you to everyone on here who do the same.
I just need to learn that I'm unlikely to beat this thing through outright determination & stubbornness. I've been trying to bulldoze through it all & have done so for years, but my body is really putting the brakes on that approach & there's only one winner there.
I need to learn to listen to & be guided by my body, looks like it'll just go on strike & have a sit down protest if I don't.
Balancing that with a young family, work & an enjoyable life will be & has been difficult.
I need to get to the acceptance level & stop heading into battle against a monster, armed with a tooth pick.
I'll need to make friends with it & try to come to an agreement 🤣
Guess I've talked myself into the bargaining stage now, so progress at least 😆
I’m afraid I’ve totally given up with my GP Practice. I’ve just got a new Rheumatologist after 20 years and she is going back to basics. Yes, a rheumatologist will see you with fibromyalgia. It’s getting your GP to refer you that might be the problem. Over the years, I have had to send leaflets to my GP (the sort they are supposed to give out to patients) and in some cases paid for them. Reading the NICE guidelines just makes you realise that GP’s are no longer doing their job (not ours, anyway). Good luck. I hope you get some help soon.
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How much would I need to earn 16h week to be better off
Lost trust in NHS, lost my job because of it all! 
GP telling me to get on with life 
Just a wee thank you.......... No huge actually!
Wrote this poem a year ago at the depths of my despair, and now health and I are about to collide!
