Sorry all I need to rant. Just back from GP appointment and I am outraged. Explained to him about my extreme levels of pain and his response was that people with "fibro" lead normal lives and that the diagnosis is given when the consultant doesn't know what's wrong with you!!! Said the pain clinic won't be of any help to me as its only for people with chronic pain. As you can imagine my tone of voice changed dramatically as I advised him I no longer have a "normal" life, since diagnosis I have lost my job of 29 years, lost my independence and in pain 24/7. Needless to say I will not be asking him for an appointment again.
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I'd be ranting at that too. I don't blame you. I am under the pain clinic for this along with other issues such as back fracture, osteo issues galore, you name it and they are extremely helpful. I am finally on the right pain medication and I find the pain clinice extremely supportive and useful. I would get a second opinion if it were me. Hope you are OK. Im also tired of this extreme fatigue. I had to go to bed at half 5 last night asi just could not keep my eyes open anymore. Hopeis allgoes well for you. Best wishes Golly.
Thanks your reply. I've calmed down a bit now but I agree with you, I'll get a 2nd opinion. I also have osteoarthritis, cervical spondylosis and other conditions so I truly believe that the pain clinic would be of great benefit. Take care and gentle hugs
Hi, I have the same conditions as you have described and more. I found pain clinic to be helpful but unfortunately all the interventions they gave me didn't help. However they were very thorough and did what was available to me. I had injections and nerves between vertebrae s burnt . Sadly it didn't help. Good luck.
Hi I have just read your post and I am so cross on your behalf and for all other sufferers who are dismissed out of hand.Definitely get a second opinion from a different gp, and push for referral to the pain clinic. I have been through the 10 week course in my area under solent nhs trust and found it helpful, and although your area may no run exactly the same, i expect its pretty similar. You do meet other people who are also doing their best to get through a life dominated by pain.
At first I didn't want to do a group meeting as I prefer one to one, however it turned out to be a better experience than I thought.
Perhaps a change in GP is in order. Might be worth writing to him and asking for a referral to one of the fibro clinics - I went to the Guys and St Thomas's one. At least there they believe in fibro and it will do your GP good to get a report from them with a plan of action. I suggest writing as it forms part of your notes and can't be ignored, particularly by someone who appears to be so ignorant about fibro. Then once the letter has been received arrange a telephone consult, again say why you think it will be worthwhile. Hopefully if you make enough fuss, as I did, you will finally get to speak to someone who knows how we feel.
I saw four different people in an afternoon and it was such a relief to be believed and listened to. May be worth a try for you. Good luck
Absolutely appalling! Definitely time to change your GP. As Dinkie said write to your GP practice and then ask for an appointment with a different GP. Sending gentle hugs.
Fire in the belly is just what's needed, let us know how it goes x
Sorry to hear that. Sadly the pain clinic has been of little use to me for my post stroke pain, fibromyalgia and diabetic neuropathy. I think it depends what area you live in as to how proactive the clinic is and the resources they have available. They offered me CBT (talking therapy) but that did nothing and I am prescribed tramadol (not on repeat) and nortryptaline. This does very little to help my pain. They are very rarely in touch. I saw a consultant once who diagnosed me with fibromyalgia after my stroke (often linked) but have never had any follow up and my GP is also disinterested. It may be worth seeing another GP in the practice but you may consider going private and seeing if they can refer you. Hope you get some positive results.x
Thank you for replying, I also diabetic and have chronic depressive disorder. I have gone through CBT and other therapies which were helpful for my mental health. At the moment I take sertraline and amitriptyline. Sorry to hear things haven't worked for you. Gentle hugs.
I bet most of us at some point have had one or more of those type of appointments. It’s hard to stand up for yourself when they are supposed to be the experts there to support you. The frustration and desperation just keeps building. In a lot of Fibro cases we are diagnosed with PTSD and as most of my panic attacks and anxiety were around medical appointments, it’s not difficult to assume that probably a great deal of us are suffering as a result of poor support from our gp and nhs service.
That being said, when I finally broke down, I did get support, it still took time, waiting lists etc, but finally seeing specialists that understood,our issues and directing me to what I needed has been life changing. Just being listened to with empathy is huge, the first time I found that with a doctor I cried from relief!
So persevere on days when you’re up to it, try to insist that you need referrals to pain management, cbt and any therapy available in your area. In the end I researched the best place that understood Fibro and travelled to it, insisting that I was referred. I asked for referrals to Walton pain management in Liverpool ( they do a special programme for fibromyalgia and also a referral to royal Liverpool Hospital for chronic fatigue and they helped with the cfs/me. My gp surgery sorted all this when I broke down and had a referral to minds matter, I was diagnosed with PTSD and was given cbt, which has been great for me to help me think differently about stuff.
I hope some of that helps, you will get there, and my sister (also with fibromyalgia) is starting a new drug trial next month, so I think the medical community are trying to get better now. Might be worth seeing if there is a trial near to you to see if it’s worth considering?
Good luck going forward and sending you a big Fibro hug 🤗 x
Thank you for replying. I will definitely look into your suggestions. My mind is more clear today so I've got so much determination to deal with this. Gentle hugs.
Is it possible at your surgery to change doctors..I had the same problem..I went to desk and asked if I could change to a doctor who deals with and believes in chronic fatigue.. M.E. and fibromyalgia... I was lucky and got one..now that was 12yrs ago I don't know what it would be like..but you have to say I need a doctor that actually believes in my condition.. pain clinic was worse for me as they just cut down my medication to take only 2 to 3 days a week otherwise they would damage my other organs..he told me to rest on the other days.... Which is a joke when you have a major flare up... Only other thing I was offered was 6 sessions attending hospital to learn about fibromyalgia and techniques to help.. but ended up with 6 videos due to covid restrictions..did not even see specialist..just phone call and he was not interested unless my arthritis was rheumatoid .since then which was nearly 2yrs ago they have not been back to me or anything.. physio was useless..said I had not problem with knees..2days later back at docs nurse practitioner diagnosed bakers cysts which have been absolute agony and cause major swelling as pain brough on fibromyalgia flare up permanently for over a year..they didn't investigate further till I saw another doctor who diagnosed me with lymphoedema and had o be measure for long pull on thick stocking things..but hurts my hands getting them on and makes bakers cycts hurt..so it all upsetting. Plus here it's all online and trying to take photos with phone and lucky if doc rings back and even luckier if you get an actual physical appointment... I could go on and on how bad things are getting I just give up...
Thanks for replying. Like yourself I have gone through the ringer getting a diagnoses, every symptom I had was put down to my mental health, that went on for 16 years. I could cry right now thinking of the vile treatment so many people must go through. Take care and gentle hugs.
Try not let them get to you..they do make you feel like you ar going mental when they do not believe you..because of my symptoms my sister eventually got treatment after 3yrs of agony and she had polymyalgia and had to go on steroids and never got better..then my other sister had similar symptoms...and she has a special gene Which can mask conditions..you need a special blood test for it.i had to go to Norwich .but I don't have it.. so one less thing to worry about..xx i know its hard but try not to let them get to you..it really helps if you have a good doctor..which where i am is hard to find as you just get random ones now day to day....no family doctor anymore..xx
When I first started attending my GP with severe pain Fibromyalgia wasn’t an illness that was over 50 years ago. I was diagnosed with Muscular Rheumatism. This continued until 2017. When I managed to see a GP who was not long qualified and was on secondment to the practise. Which is also a training practise. He was really good. It wasn’t a quick fix but with his help and support my Fibromyalgia is now being treated properly. I would suggest you try and get an appointment with a locum or trainee doctor as most of the older doctors do not recognise Fibromyalgia as a genuine illness. Hope this helps.
Hi There, Your letter has me 'spiting feathers'. I would suggest you get a fair few amount of Fibro booklets and /or booklets provided by fibro association and send them to GP, responsible for his ignorance, and to the GPsurgery.
So sorry to hear about your treatment. I understand how you feel. I have had Fibro for 40 years, just about managed to keep working. I know the feeling when you mention Fibro to your GP, that not interested vibe, I realised a long time ago I just had to keep going. Not a bit of wonder a lot of people with Fibro suffer from depression. I hope you find a GP that listens even if there's not a lot they can do for you. I'm now in my 70s and the past few years have found the lack of energy increasing, my GP has done blood results and I am awaiting tests for Celiac disease, at least if that's the case I'll maybe be able to do something about it. I hope you find another GP and if there is a Fibro meeting in your area it is good to be with people who understand how you feel. Best wishes.
Rant away - doctors like this are in need of some serious re-education
There is evidence on fmri brain scans that people with fibromyalgia have altered reactions to pain and other stimulus, that indicate central nervous system sensitisation and disordered pain processing. (science of fibromyalgia, Daniel Clauw)
There is also evidence of lower levels of chemicals such as seratonin, dopamine and substance P
There are NICE guidelines on treating chronic primary pain, which includes fibromyalgia, it is on the NHS website with diagnosis and treatment information, and also the Royal College of Physicians have diagnostic guidelines available on their website
You can have a health professional information pack sent to the gp (anonymously) at fmauk.org/gprequest
If you have the strength and are able I’d do a few things in this situation. I’d write a complaint about this doctor to the surgery stating your experience and their need of training on the subject of fibromyalgia. I’d change the GP to another within the clinic and if that’s not possible I’d move to another in your area. And I would keep pushing for the pain clinic appointment. I went and they were extremely helpful at the referral process to me and I’ve been taken on now and awaiting an appointment. Don’t let these ignorant and uneducated doctors get you down, and never ever give up. You are entitled to the care and to be heard
When I read things like that, it totally gets my gills up. That's when I wish the worst fibro ever on this non-caring doctor....just for a couple of months or so. I bet you anything that this physician would never dismiss a patient so casually again. Wouldn't it be great if part of medical education was to have to endure a chronic illness for 3 months and have to see an incompetent, arrogant doctor to fob them off? I really hope you'll find a more sympathetic doctor soon. All the best. Sending a hug. Hope it helps.
A quick update. Firstly thank you so much to all who replied and for the advice and empathy given. I have made a verbal complaint at GP surgery and will follow up with a letter. The office manager has just phoned me back to say that the GP had sent a referral, electronically to the pain clinic this morning, before I had contacted them, what a load of bull. Anyways I've got the ball rolling now so wait and see xx
I was so cross reading your original post! So pain 24/7 does not count as chronic pain?! What he said was so dismissive and uncaring! I know that I am one of the lucky ones and do not suffer as much as some others on this forum but I still have to pace myself. I know that if I do too much I will suffer the next day. Fibromyalgia is one of those conditions where you might not look particularly unwell. I hope you will get some conclusion with your complaint at the doctor.
Thank you for replying. I honestly wouldn't wish this illness on anyone, took 17 years to get my diagnosis and then that imbecile hits me with those statements. Gentle hugs.
If you haven’t already I would suggest as I did, make a formal complaint about this GP 😡to be frank I received a letter of apology from him. It didn’t help as I truly believe that he only did it because he was told to by the practice manager. So it didn’t mean anything to me however, what I did feel better about was that I had brought it to the practices attention that he was treating people this way and I felt that hopefully it may have made him maybe think differently about his actions having it brought to light. Also I wondered how many other patients he had treated badly and took situations lightly and completely disregarded them in an inappropriate and condescending manner which should never be the case when you are there asking for help. To make anyone feel bad or not listened to is the last thing any gp should do. I was pleased I didn’t let it get brushed under the carpet and dealt with it. Please do the same. 🤗🤗xx
Thank you for replying. I contacted the surgery this morning and made a complaint, I will follow this up with a letter. I also came across a fibro support group nearby and they have added the surgery to their monthly list of NHS services that they send info to. Gentle hugs.
So sorry that happened to you. It took 9yrs for me to be diagnosed with fibro because of drs like that! NO ONE with Fibromyalgia lives a normal life. We live our lives pushing ourselves through pain, constant fatigue, brain fog, memory problems, depression, gi problems, etc. because we have to...because life doesn't end when our symptoms start. It's because of people like that that we have to pretend like we're okay when we're not, because you can't always tell from looking at a person, how much pain they're in. That's like saying people that are wheelchair bound live normal lives! What an idiot!!!
Thank you for replying. I totally agree with everything you have said and I'm sure you won't be shocked to hear that I called him all sort of lovely names last night after the appointment. Gentle hugs.
I'm sorry for your awful experience. Unfortunately this was the attitude of many health professionals prior to further medical research into the condition. I would change my GP. You could also maybe self refer to physiotherapy. They do a full assessment and can refer you to pain clinic, or if you're lucky to have a fibromyalgia clinic, they can do that too. The exercises they give you can be helpful in stopping joints getting stiff and they can refer you for any scans or x-rays you need. You should be able to self refer from the patient services website for your surgery, or ask at reception. Hugs xx
that GP sounds like someone who is not happy with his lot. Not happy with his job and probably needs to leave. One thing I agree with him about is fibromyalgia is a condition that doctors use (when they don't know what else is wrong) so as not to look further at the patients possible other conditions. I got diagnosed over 25 years ago but I have many other things going on which I believe are all related but they always hark back to fibro. Stands to reason that if your body is out of kilter it will object and pain and inflammation is what it does.
My GP surgery is dire now. All done by AI triage and only one condition at a time. For every condition you have to fill in a separate online form!!
It helps to have a rant and get it out of your system but put it in a letter to the practice too.
yes I've been there too until fibro came along everything I had was put down to depression! I can stand my ground now with doctors but I can't tell you how many times i've been offered antidepressants. If I'm ever asked if my mood is low I say yes and so would yours be in my condition but the low mood is a result of not the cause!
Welcome to the real world, the rich dictating the needs of the poor, the healthy dictating the needs of the sick, those in no pain dictating what those in pain receive, those with multiple homes telling the homeless they don't need housing, the able bodied telling the disabled what they need and so on.
Thanks for replying, I agree with you 100%, this world is so messed up and its sad. Its the sick, disabled etc that are the one who try and live life as best they can. Gentle hugs
If you are in a Group Practice you can make sure that you see another GP in future. If not, then you can change GP and if there is a local Support Group, people will be able to tell you who is more sympathetic to patients in pain. Don't just put up with it. You could also write to the Practice Manager and complain.
Get your vitamin D levels checked. This has been crucial for me, along with probiotics has helped me also, but you may need to try different ones to find the one that works for you.
What an ignorant and uneducated man he must be, I have also come across doctors like him and it makes my blood boil. Sending healing live and support your way ❤️
so sorry this happened to you. I’d put a complaint in to the practice. I have fibromyalgia and have been referred to the pain clinic and it did help me. Half the people in the class also had fibromyalgia. It is a ridiculous thing to say to a patient who is suffering. I sometimes wonder how they get these jobs, or keep them for so long!
doctors like this one make you worse not better and you are in good company with having encountered someone who doesn't understand and behaved as though it was your fault for being ill not his for being ignorant. One of my worse GP experiences was when the college doctor said my pain and other symptoms were entirely psychosomatic and due to worrying about my exams. I graduated in 1980 and I still struggle with the same difficulties and pain. In 2004, a rheumatologist diagnosed FM and later I had hypermobility spectrum disorder confirmed by a London doctor. I find massage helps and a cold pillow on joints. I have arthritis now too.
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