Wish I hadn’t got Fibro diagnosis. Doctors won’t listen now

[Brigga]

I’ve had back trouble since my early twenties. I’m in my 50s now. From time to time I put my back out. I usually get stronger painkillers for a week or so until my back rights itself. Now I have a fibromyalgia diagnosis doctor will not give me anything at all. I’m stuck in bed. Can’t move can’t sleep and she will not give me anything, I was crying on the phone and I’m crying now. Believe me I don’t cry easily. If you haven’t yet had a diagnosis I do not recommend it. I can see from now on that any pain I have will be fobbed off as fibromyalgia.

EDIT I’ve just submitted a complaint to the practice. I’ve pasted it below if anyone wants to read it.

Dr Khan phoned me. I have put my back out and cannot move and cannot sleep. Because I have a fibromyalgia diagnosis she did not really listen to me and offered no help. She also refused to consider even amitriptylene which is a NICE recommended treatment for fibromyalgia patients. I have had arthritis in my spine since my early 20s if you look at my records. I feel like now I have a fibromyalgia diagnosis it prejudices the doctor and I will not receive the level of treatment I received before my diagnosis or the treatment that any patient should expect. I asked for a short term treatment to help me through this current pain flare up. I’m not asking to be put on a long term medication. I also don’t appreciate being spoken to as though I’m stupid. I have two degrees and had responsible jobs before my health forced me to give up work.

[Cotswolds25121]

Good morning Brigga, sadly this seems to be a current issue for some with fibromyalgia. I applaud you for putting in a complaint to your gp. I would suggest that you request to speak to another gp who hopefully will be more helpful and listen to you instead of making assumptions and dismissing your concerns and pain. I myself have recently experienced a gp that I never see deciding in one fail swoop to alter most of my meds. Without the knowledge of my personal situation like my gp that I always try to get an appointment with as she listens to me then makes any decisions. I’m still trying to get an appointment with her to sort the mess out that he has left me in. I’ve got to go to work now but I hope you get a genuine response from your surgery manager and can get the meds you need. 🤗x

[Fra22-57]

yes it is same with me.”oh it’s to do with your fibromyalgia “ they say.I feel like getting annoyed and telling them to investigate.they maybe are right but there is a way of saying things better and trying to help isn’t there.I get told I am complex as I have several conditions .I do sympathise with you.Try and change your doctor if possible

[Mrdiagnosis]

Hi Brigga, I have had a similar experience and also have arthritis in my spine . My GP was rude and dismissive, that is until I put in a formal complaint about them. A formal complaint about your GP goes on their records and is seen as a huge negative.

Don't forget that it is us tax payers who fund thier wages .

They also have guidance they should adhere to as a GP it's on the internet if you Google it. Which gives you an idea of how you should be treated. In any regard it sounds like they need a reminder that it's the patient who is in charge of their own health and not them . They are there to help not hinder or make things worse.

I got an apology in writing and a new GP . Don't back down if they don't formally reply to your complaint I would send it to the practice manager and to your local health authority who governs the GPS in that area . Take it further my friend. It's totally unacceptable to be left in pain when you know your body better than they do .

Good luck x

[Badbessie]

To be honest a diagnosis of fibromyalgia can be a curse. I think many on this site could give stories of " it's your fibromyalgia" syndrome. My daughter as not long been diagnosed and she is going through the same thing. Complaining is perhaps the only way to be heard...good luck.

[Midori]

Might also be worth a letter to the Care Quality Commission. (if you are in UK)

[Loobielu]

yes my friend, as soon as you get a diagnosis of fibro, they stop investigating and you're on your own! Well done you for complaining and surely you have nothing to lose than finding another GP. gentle fibro hugs x

[EarthSitter1]

Welcome to the world of Fibromyalgia sadly my Gp is exactly the same- last time I saw him he was really rude, wouldn’t listen and ended the consultation with what do you want, you’re on amitryptiline. I did complain about him and also went on to the fibromyalgia website and had them send him a medical pack, I was diagnosed nearly 13 years ago now and believe it or not things are improving slowly since covid as Long Covid is real and similar in some ways to Fibromyalgia which has made some of the medical professionals start to look at fibromyalgia in a different light, but there’s still way too much ignorance amongst the medical profession about it 😕

[Midori in reply to EarthSitter1]

I was hoping that the emergence of Long Covid might gee them up, especially as they are so similar to each other, also ME and MS.

But no, they have swept them under the rug.

Cheers, Midori

[clifetta]

Brilliant letter. Sadly many gps do tend to think that any new sympton is down to fibro. Its not geeod enough. Keep fighting. I feel your pain as a fellow back problem sufferer

[Dinkie]

Change your GP if you can. Have to say my new GP is brilliant, never assumes it's fibro and will listen. He diagnosed my diabetes when I was just feeling fatigue and not right - many GPs would have blamed the fibro. He diagnosed calcific tendonitis when I had shoulder pain. Not all GPs are the same, there are some good ones out there, it just takes time finding the right one.

[Loobielu in reply to Dinkie]

Hello Dinkie, would you mind me asking about your shoulder pain? My left shoulder is giving me alot of pain for the past 4 weeks. I'm struggling to drive with it and put tops on and off etc. I'm reluctant to see doctor as think he will just brush it off and say it's just fibro but this pain feels different. There's been no trigger for it apart from my flu jab 🤔. Thanks x

[Dinkie in reply to Loobielu]

Have a word with your GP mine was so painful couldn’t drive - he sent me for x-ray and that showed calcific tendonitis.

[Loobielu in reply to Dinkie]

thanks. I'm struggling to drive too, right from leaning across to put my seat belt on, the pain is nauseating 🤮! I've just completed an online 'Ask the GP for advice' form on the NHS app. Never done this before. Supposed to get a response by end of day tomorrow. Otherwise it's at least 2 weeks before I can get a face to face. Funny enough I've never had an x ray, MRI or CT scan which I think is ridiculous. I got my fibro diagnosis from symptoms, normal blood test results and years of moaning about feeling unwell. Feels like a right cop out to me x

[Dinkie in reply to Loobielu]

I use the on line ask the doctor at my surgery - they always reply or ring me😁

[Loobielu in reply to Dinkie]

success! I had a text yesterday to say that they have booked me in to see the physio at the doctors Monday. Very quick, very impressive. The pain in my shoulder gave me an awful sleep last night, I just could not get comfy. Lets hope the physio has the answer 🫰 x

[Dinkie in reply to Loobielu]

Good news but I would be asking for X-ray first just in case as physio not recommended for calcific tendinitis. Ask your physio when you attend if she thinks X-ray needed

[Sparklingsunshine]

Yes I find some doctors lazy and the can't be arsed ones latch onto the Fibro diagnosis like a drowning person clings onto driftwood. Everything is blamed on Fibro, which is dangerous imo as a seperate issue, which could be serious, is ignored.

I've even started avoiding mentioning it to new doctors now as I wait to see what they say first, without prejudicing them. I've also challenged doctors look deeper and not take the easy option.

They should be prepared to offer the same tests to help a diagnosis as they would to any patient. I sometimes have a sneaky suspicion that some medics still dont really believe that Fibro is a genuine and very disabling condition and they think Fibro patients are hypochondriacs, malingerers and need to "pull themselves together". I hope in 2023 that I'm wrong but it certainly feels that way at times.

[Loobielu in reply to Sparklingsunshine]

Well said sparkling sunshine! I think all people think that about me, not just doctors 😏! You start to doubt your own sanity don't you 🥴 x

[Midori in reply to Sparklingsunshine]

All comes down to the Almighty Money factor again.

Cheers, Midori

[Brigga]

Thanks for all your thoughtful replies. I’m so angry at that stupid doctor. Not sure if she was a locum or new to the surgery. My usual doctor is lovely but I never get to see her. I think I will insist in future. Also thinking of changing my practice. Many of the doctors have retired and the receptionist told me they’re really struggling to replace them. There are not enough GPs to go around in this country now. Not heard back yet re my complaint. I’ll definitely take it further if they don’t reply .

[Midori in reply to Brigga]

Very true, many doctors are either retiring early or leaving for pastures new. My GP practice has 22 doctors when I joined them nearly 4 years ago; now there are only 6.

Cheers, Midori

[Elaine200756]

💔😥