Hello to everyone here, and I hope youre all feeling as well as you can possibly feel today. Thank you for letting me in.
I wanted to ask, has anyone else had trouble getting their GP to take this condition seriously - or to even acknowledge it at all? Ive been having all the symptoms (except for the IBS) since around Autumn 2015, and after repeated, fruitless visits to my GP, I entered all my symptoms into the NHS web site and it came up with Fibromyalgia. When I mentioned it to my Doctor, she brushed the idea aside and treated the suggestion with contempt. Her help with this awful illness so far, (after she had stopped suggesting over the counter pain relief like Paracetamol!) has been to prescribe me Tramadol on a repeat, which worked a little at first but now, I'm finding that I have to take more than the prescribed amount. I was recently introduced to someone by a mutual friend who suffers from Fibromyalgia, and their symptoms match mine exactly, but they are prescribed anti depressants (which I can neither spell nor pronounce!) which work as pain relief, and work more effectively than do mine; has anyone else had this 'stonewalling' from their GP? By the way, I'm male, I'm nearly sixty, and, up until last Autumn, was physically active and still cycling, swimming, long distance walking and having an occasional fifteen minutes playing 5-a-side football. Not anymore, however.
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Bazr1957
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Yes, my GP is a plank. Really unhelpful. Am in the process of finding a new GP ... perhaps you should too?
Cymbalta is an anti-depressant that is also used to manage pain.
If you ever need to come off Tramadol, PLEASE make sure you wean off SLOWLY. DO NOT go cold turkey especially if you're a long-term user. Tramadol withdrawal is horrific.
Thank you Lizbett, I will. Hadnt heard of Cymbalta but will add it to my journal now. I know what you mean about weaning off, when I was younger I was over prescribed dihydrocodeine after an accident - it was called DF118 back then, if memory serves - and when they stopped them suddenly and with no warning, after about 36 hours I spectacularly unravelled.I wont make that mistake again x
I first had fibro in 2002/3, I felt like a hypochondriac & knew if I tried to explain it all, I would get sidetracked by go responses, so I wrote everything down - 2 × A pages & said would you please read all of this, he did then he treated my for depression & arthritis, to the point where I was struggling to walk with my right knee & they said I didn't have enough fluid between knee cap & patella so I had laser knee surgery - nothing wrong with my knee! It was then which was a year later that the hospital said fibromyalgia, I would sit at night with wheat bags round my neck, my arms & legs had to be supported it was awful, but only lasted just over a year & I wasn't a single parent then. This time I'm in my 6th year with major depressive disorder, social anxiety,IBS, Chronic fatigue -for me this is the worst. I demanded a referral for the rheumatologist who wasn't very helpful - I said I think I have fibromyalgia again, he said don't be so silly, if you have it, it's always there & flares up, he said try aerobic exercise- I could barely walk, if I walk a small way I'm completely exhausted & in pain. I am on soo many med & can't remember all the ones I've had before these.
I have a blister pack Levothyroxine, Rantiadine, Amitriptyline, Quetipine, Pregablin, Diazepam, 100 g Slow release Tramadol (this really helps) the other tramadol doesn't & liquid Oramorph.
I have no life outside of my home though, I'very just been discharged back to the go from mental health services as there's nothing more they can do for me except try one last antidepressant, I've even had ECT.
I think we are all different though BAZR1957, it's good if you are able to be active & I find the Pregablin, Oramorph & slow release tramadol really help. If you're not being heard by your go, see someone different. I wish you all the best, Good luck
Thank you for taking the time and effort to reply mate, jeez but you are in the wars; I havent tried the slow-release Tramadol, but youre not the first who suggested I do, so I might ask for it and see what happens. I hope you get well, and that your awful daily symptoms dont crush you. I thought mine were bad. Stay safe x
I am so sorry to read your story. I developed fibromyalgia symptoms in November 2013, just after moving to a new house. I thought my symptoms were stress related, but when the fatigue got a lot worse, and was accompanied by widespread pain all over my body, I went to see my GP in February 2014. She said my symptoms were most likely to be due to Fibromyalgia, a condition with which I was familiar, as my husband was diagnosed with it in 2008, after 15 years of suffering. My son was also diagnosed with the condition in 2011, after suffering for 2 years and not being taken seriously at all! However, it was to be a further year until I was referred to the Pain Clinic, who confirmed the diagnosis.
I also have Osteoarthritis and Osteoporosis which were diagnosed in 2003, after I had 2 fractures in my spine. NHS occupational health services forced me to retire early from my nursing career, as they were not prepared to take the risk of me developing more fractures. I had just under 30 years of service, and was only 47! The result of enforced retirement was very severe depression, leading to suicide attempts and several spells in a psychiatric ward. I eventually got over the worst of my depression, but I still have periods of very low mood, and I will be on antidepressants for the rest of my life.
Eventually my GP referred me to Rheumatology after I had many of the symptoms of inflammatory arthritis. My mother was diagnosed with Rheumatoid Arthritis when she was my age (59) and I know there is a strong hereditary component to this condition. Imagine my horror when I discovered that Rheumatology had rejected the referral on the grounds that it was "inappropriate", as I have Fibromyalgia and they do not see patients with this condition! As both my husband and son received their diagnosis from Rheumatology, I was not prepared to accept this. After reading my GPs referral, which left out a lot of important info. about my symptoms, I made a formal complaint to my local hospital. End result was that I got an appointment, but the Lead Rheumatologist was downright rude to me, trivialised my concerns and caused me severe pain whilst examining me. I am convinced that she treated me in this way as an act of spite, because I had made a formal complaint!
I will never attend Rheumatology at my local hospital again. If I am required to see a Rheumatologist, I will ask my new GP to refer me for a 2nd opinion in another health authority area. I am also considering a private referral, as I have had very few blood tests, and no scans or further x-rays. Of course, this will depend on how much it costs, as I am now on a fairly low income. If I do go private and get a diagnosis of inflammatory arthritis, then I will take legal action against the NHS for medical negligence. I have been this road before, as my son was a victim of misdiagnosis as a child. At the time, I would have been happy with an apology, but none was forthcoming. I eventually accepted an out of court settlement as my own health had deteriorated greatly. Then I reported the Consultant to the General Medical Council! The GMC upheld my complaint and the Consultant was issued with a 5 year supervision order. She resigned from her position after less than 3 years!
I wish you all the best, and please do not give up! Complain if you have to, and you will eventually get the help you so badly need!
Before getting the opportunity to talk to and get feedback from others on here, I felt isolated a bit, and felt that I was suffering dreadfully, but after reading what assails people like yourself every day, I actually feel a little 'lucky', if you get what I mean? I cannot imagine how difficult and painful your day to day life must be like, and yet youve still got the vertebrae to fight back. That is admirable, and I hope your treatment and whatever help youre receiving goes towards improving your life and easing your pain. I thought things were bad for me, but there are some people suffering dreadfully. Ive had some dark times and bleak thoughts in the past year, but hearing how fellow sufferers dont bottle out and just get on with it is inspirational. Thank you very much for sharing, and I hope you get well x
I know many people on here who have had that problem and feel as frustrated as you Baz. Is there no other doctor in your practice who you could see or even change your practice? You could request a referral to a Rheumatologist who is the one who normally diagnoses Fibro after eliminating everything else it could be. I wish you luck and hope you can get some help soon.....
Thanks Trikki, its difficult to change your practice where I live hon. My gp is of the opinion that, if it doesnt show up in a blood test, it doesnt exist; the 2nd gp at the group I go to is actually hardly ever there; I strategically tried to get an appointment with him last time I went, but when I got called, it was my usual Doc. Before this flared up last year - seemingly out of the blue, and for no apparent reason - I hadnt actually been to my GP since 2003(!) but I still get the impression that she believes me to be faking. Last visit, she actually told me that a neurologist or rheumatologist would merely tell me that there was nothing wrong with me. Thanks for the advice and wishes, hope you are well yourself x
My mum had Rheumatoid Arthritis and her blood tests were all normal. About 70% of patients with this condition are "seronegative". ie it does not show up on blood tests. It is important that doctors consider the patients clinical history as well as blood test results. Unfortunately, in the present climate of austerity in the NHS, many doctor try to cut corners. As a result, thousands of patients go undiagnosed and do not get the treatment they so badly need!
I'll remember that word, 'seronegative', tomorrow (Friday 23rd) I get to see the 'other' doctor at the group practice, and hopefully, he won't be one who is at a total loss if you need anything other than a methadone prescription, (which sounds a bit unfair, but is actually what I suspect is at the root of my problem with me and my own GP); our local nhs have been strapped for cash for years, and the fantastic staff at our local A&E are like soldiers under siege
Hiya Bazr1957 welcome. I personally have'nt. My gp is pretty good but I know some people have suffered the same as you. You may need to change your docs darling. Some just won't accept it as an illness unfortunately. I wish you luck. Take care xx
Hi Barzr, yep like you I was fit and doing lots of long distance walking, then over a year ago I was getting lots of unexplainable pain like electric shocks and feeling like I have flu all the time, then the pains in my feet became unbearable. I saw 4 nurses at my surgery who all said I need to see a doctor about it. 2 doctors would not listen to me....just go home and take paracetamol! I then saw another nurse who again said that I needed to see a doctor as thought it did sound like fibromyalgia. Only one doctor left to see but due to him not speaking or understanding English very well, I then wrote to him a whole diary of my symptoms, going back to childhood problems also with pain. He rang me back a week later, this was in June this year and he said he was referring me to rheumatology and in the mean time prescribing Naproxen and Amitriptyline. I saw the rheumatologist in October who confirmed that it was fibromyalgia plus hypermobility and osteoarthritis! I also gave her a copy of my diary, which she was very pleased about and I still continue to make notes now, not every day but every time a new symptom pops up. I have since been through lots of blood and other tests and the consultant has said for me to go on to other meds. Thing is I have since been unable to get an appointment with a doctor to discuss test results and be prescribed because according to the surgery non of my results are back!!! So you could try the writing to them method as they have to respond, or you may have to find another surgery to go to. I know it's so frustrating and upsetting when you are not taken seriously. I hope you can get one to listen to you soon and refer you to rheumatology.
Thanks Jo, like you, I did the Diary Of Foul Symptoms thang, but she merely glanced at it, and handed it back saying I had already 'given her a lot to think about'... I was in so much pain and so depressed in April this year, I went to my local hospital, where a nurse told me she thought I may have polymialgia (?) or something similar, and ..... told me to go to my GP. Life is a circle, they say. Hope you are feeling better soon x
Hello Bazr reading your experience with your g.p isn.t unique, many dismiss it because they know bu**** all about it and feel embarrassed, many look upon us as hypchondriacs, you need confirmation from a rheumatologist that you have the condition and you may have chronic fatigue with it, see another partner in the practice and ask for referral..- About the Tramadol-- for god sake do not self medicate on Opiates, it is dangerous and as other have said when you try to cut down or stop the withdrawl is horrendous!! I take tramadol 50 WITH 2 paracets and my pain is manageable I only have them twice daily to avoid addiction. If your pain is so bad then you need something else then back to g.p for input- consider if you are driving with these drugs inside you and they kick in en route and you suddenly feel very sleepy, fibro sleepiness comes on thick and fast!!! There is always A&E if you are in terrible pain.. I do hope you get a good result soon.
Cheers Caz, I stopped driving halfway through the Summer due to my 'fogs', also stopped riding my bicycle, as Ive developed some weird, sporadic balance issues. I know quite a bit about opiate addiction and withdrawal, so I would cut down gradually if given an alternative that worked. Thanks for replying mate, hope you yourself are doing okay
If you have a look at our website you will find a list of the most common symptoms of Fibromyalgia.
The antidepressant you may be thinking about could be Amitryptyline? This medication is, as a rule, the first drug that Rheumatologists prescribe when diagnosing Fibromyalgia.
Amitryptyline only works as an antidepressant when taken at a certain dose. It helps with pain, sleep and low mood.
There obviously are other antidepressants that are prescribed to help with Fibro but this tends to be the main one.
Just something to mention though is that you do need to get your GP to rule out other illnesses such as Lyme Disease and MS as they have almost the same symptoms.
There is no blood test to diagnose Fibromyalgia so you will need to ask your GP for a referral to see a Rheumatologist.
Is it possible for you to see a different GP in your practice? If not, perhaps it would be best for you to try to find a different surgery near you.
If you do have to see the GP that is not taking you seriously, take someone with you to your appointment for moral support. GP's do tend to be more professional when you have someone else with you.
If you need any help at all navigating your way around the forum, please let me know and I will be more than happy to help you.
I very much hope that you enjoy being part of the forum
Thank you Lu, Amitryptilene it was! Ive got an appointment at the surgery again this coming Friday and will ask her about it then, but I won't hold my breath. I might get lucky and get Doc#2, you never know. Ive decided to to take the advice of yourself and others on here to ask for a referral though, just have to see how it goes x
I had the same with my GP too, was back and forth so often i felt i was wasting there time as was always fobbed off!! It was only when i broke down and mentioned fibromyalgia to her she started to listen!! Still it's taken her another 4 months before agreeing with me and giving me more pain relief!! I'm now taking 6 different tablets 😫 Still in pain but have to wait till the beginning of Jan so she can see if they're working... all I can say is keep going back and demand they listen... good luck
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I had issues with my previous GP surgery when I was first diagnosed. Luckily I moved into a new bungalow a couple of years ago and had to change surgery and they are very much on the ball with Fibro.
I want to sincerely wish you all the best of luck my friend, and please take care of yourself.
Thank you Ken, pleased to make your acquaintance also mate. Hope you stay safe, sane and happily pain free yourself. Great to have people to talk to about this and I'm glad I found you all.
Yes, I have been treated in a very similar way by my (former) GP. What really annoyed me, however, was the fact that before I had to retire due to fractures in my spine (I also have Osteoarthritis and Osteoporosis), I was a Nurse for nearly 30 years in the NHS. My last post was as a Nurse Practitioner in General Practice. Until I moved to my present house in November 2013, I had no problems whatsoever with any GPs. There were occasionally minor differences of opinion, but these were easily resolved.
The new GP, on the other hand, repeatedly talked down to me, as if I was a complete idiot. I am most certainly not a fool, as I have 2 university degrees (my Nurse Practitioner degree at 1st Class Honours level) plus a whole host of other nursing qualifications. I was ambitious and worked very hard during my nursing career. You can imagine I was none too pleased at being treated in such a dismissive way!
I put up with it until last February, when my husband and I went to see her together (we had a double appointment). This time she angered me greatly and I lost my temper. I knew if I stayed in the room, I was going to smash her skull to pieces with my stick, so I put on my coat and walked out! I made a complaint via the Practice Manager, but he was about as useful as a chocolate teapot! In March, I changed my GP and I am pleased to say, in my new practice, I am well on the way to establishing a good relationship with 2 of the GPs, and also with members of the Practice Nursing team.
I am not asking to receive any special treatment, merely for GPs to acknowledge that I am not your average patient, and that I do in fact know a great deal about medical matters. I do not process to be an expert, but I do appreciate doctors who treat me with the same level of respect as I treat them. Unfortunately, there are still a percentage of doctors who think that having a medical degree entitles them to act as if they are the Lord God Almighty. They tell patents what to do and expect them to do it, no questions asked! In my entire nursing career, I never treated patients in such a fashion. I always attempted to give them and their families an explanation appropriate to their level of intelligence. I also tried to involve them in their own health care as much as possible. I come from a family of nurses, my mum and my gran were both nurses, as were several other family members. It was instilled into me from my first day in nursing that I should treat all patients in the way I would like myself or a member of my family to be treated. This has been one of the best bits of advice I ever received! If I can treat patients as individuals and credit them with some intelligence, then why can't doctors do the same?
Albeawright, love the name, and hope you will, too. Thats the most common reaction I get, "They dont give you tramadol when theres nowt wrong with you" - lol. Take care x
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