What's your view ???: So I'm not aware... - Fibromyalgia Acti...

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What's your view ???

21 Replies

So I'm not aware of doctors officially diagnose fibromyalgia mine certainty did not however he mention it possible as all tests were coming back clear however he would not officially diagnose he said he'd rather wait for specialist,so after a year that's what I did I waited for specialist,I personally believe doctors should be able to diagnose because the mental waitting and anticipation for a diagnosis was to much to bere for me at one point I wanted to section myself as I thought I was going mad and in to much physical and mental pain so I think gps should go on an intensive awareness course for fibromyalgia and be able to diagnose it it would save a lot of time my doc mentioned it to me 7 months prior to Rhumatologist then I stated my own research and was like omg yes yes yes I get and have all those Symtoms?????? Wats your views x

21 Replies
rosewine profile image
rosewine

My doctor diagnosed mine and the physio, occupational therapist and pain specialist I saw in later years for various treatments a ll agreed with his diagnosis. I often find that younger doctor's seem to be more conversant with fibro so perhaps more likely to have the confidence to diagnose it. He did do all the tests for things like lupus, RA, thyroid etc and I had quite classic symptoms. I could understand if say someone was having certain overriding symptoms such as fibro fog a d headaches them as ting a second opinion I from say a neurologist. I agree that not enough GP's or even physios have more than a very basic understanding of it. I know the young physio I saw only knew the basics but he did look up more for my next visit and he said I fitted the classic symptoms. It is like torture wondering what is wrong with you as some of the symptoms can be so weird.x

in reply torosewine

Totally agree very true xxxxxx

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

Patient presentation can vary greatly so sometimes a GP will not be comfortable to come to a diagnosis of fibro straight away. PSA, arthritis, thyroid, lupus or other AI condition, MS or another neuro condition can all be candidates and more. Blood tests can help eliminate or reduce the prospect of some of them.

You want the right diagnosis and if the GP thinks a specialist should be involved then that's probably the right call. Irrespective of a diagnosis if a GP thinks it is likely then they can start some of the treatments especially as there are some common treatments and some GPs are confident of treating in advance of a diagnosis.

in reply todesquinn

Yes i can understand what you mean x

AliMS profile image
AliMS

My doctor diagnosed mine, and prescribed accordingly. The rheumatologist just confirmed it and suggested one or two other options for pain relief.

I saw the comment about younger doctors being more clued up. Mine is nearing retirement age unfortunately. He's fab. I'm aware that not all are the same. Where I lived previously, I asked about Fibromyalgia, and his comment was IF IT EVEN EXISTS!!

I'm not sure about a course- doctors miss cancer etc, if they went on a course for everything, they'd never be in the surgery. They're NOT experts in any field they are GENERAL practitioners. That's what specialists are for, although I think that can be a bit hit and miss too.

Sorry your journey was so fraught.

X

in reply toAliMS

Thank you I'm getting there now it was the fear of the unknown that was worse for me xxx

Awesome your a warrior I'm a fibro baby still got a lot to learn x

redmaple-5 profile image
redmaple-5

Fibromyalgia is a complex illness. I was diagnosed by a neurologist after a physiotherapist referred me. My GP diagnosed CFS and has referred me to a rheumatologist. My recent blood tests are showing abnormalities which need further investigation. Many questions still unanswered.

🌷🧐🌷

bobbybobb profile image
bobbybobb

I was seeing a Rheumatologist for Raynauds and it was him that diagnosed me with Fibro, I wasn't even expecting it, it was out of the blue. I thought I had fatigue and aching muscles because I worked a lot. I never went anywhere with it. Some GP's do diagnose Fibro. I guess it depends if the have the knowledge and confidence to think they are making the right call. xx

bobbybobb profile image
bobbybobb

Yes, he started me on meds referred me to the Fibro course and sent my GP a letter to let him know what was going on and what pain meds to try. xx

MrsNezza profile image
MrsNezza

I understand where your coming from, i have been unable to walk properly & been in agony for 18mths but i dont think it should be just down to your G.P. I was wrongly diagnosed by a G.P. He told me i had Fibromyalgia but i havent i have a problem with my back & a vascular problem in my legs, if i had just listened to him i could of been on all kinds of meds that i didnt need to take, my back problem would of got worse & got knows what would of happened if my vascular problem had been ignored. I understand your fustration but as ive found some G.P.'s just put it down to that because they cant be bothered. Good luck

in reply toMrsNezza

Yes true indeed thanks for replys guys xxxx.

Jamie1965 profile image
Jamie1965

Yes my doctor first diagnosed mine a d the hospital confirmed

Simba_1 profile image
Simba_1

Hi there Lauren1987. After numerous visits to my gp spanning over a year and xrays and blood tests arriving back negative my gp diagnosed me with fibromyalgia according to my many symptoms! I was diagnosed last June. Have you been given a diagnosis yet? If not I would be tempted to see another gp who will hopefully have the training to diagnose you. I definitely found the waiting for a diagnosis the hardest because I started questioning myself if indeed there was something wrong with me or not due to blood tests and xrays coming back negative.

in reply toSimba_1

Hi Hun I was diagnosed March 3rd was so horrible waitting but now I know on meds wich take edge off but pain is always there constantly going were it wants to in the body they year of waitting was so stressful I became desperate x

Broadfield profile image
Broadfield

I have been lucky, we have two gps and I always saw the same one,by accident I got booked in with the other, after a barrage of tests he diagnosed fibro and changed my medication to Duloxetine and pain killers if I need extra help with the pain. So far so good. I started to improve in the first week and no longer feel like jumping off the cliff with despare. Keep trying, let them know how desperate you feel. I wish you luck as I know how frustrating this can be. If your surgery have a counsellor go to them for support it will help your case😘

Puglady61 profile image
Puglady61

My doctor said definitely nit! But sent me to a specialist due to an arthritis problem, the specialist said I have fibromyalgia m, I was happy In A strange way as I thought I was going mad, pain, dog, no sleep! IBS m, sight problems, itchy skin, rashes, so although it’s difficult I’m 28 months along, a bit wider, trying all sorts, CBD hepa, CBD cream(Kind} is a life saver! Turmeric, lots of things being trialled as I’m trying to get away from chemicals (personal choice) Im still on Codeine phosphate x8 paracetamol x8 sertraline 100mg but hey I’m coping better. Just the weight! Gone up to 13 st from 8.5 a mixture of depression and nit being able to do much m, but this forum is helping, don’t post so much, but read a lot. Good luck!!.

in reply toPuglady61

Good the hear your story and how similar it is to mine I itch have ibs get dizzy just to know we're not alone and have same Symtoms puts me at ease x

margaretpaloma profile image
margaretpaloma

I'm in Spain so its a bit different but I haven't talked to my GP about this, I do speak Spanish but he isn't very communicative at the best of times and I have the impression GPs just do the obvious, painkillers, and if that sn't work you have to wait for a specialist. And reumatologistsare rare beasts in Spain.

About five years ago I talked to a private GP. She said she thought I had polymyalgia, I was on steroids for ages. That was all overtaken by a diagnosis of severe osteoarthritis in both hips. I've had both replaced and I had thought I would be much better. Well, my hips are but the rest of me is a wreck. I have also since seen an endocrin, privately and at her suggestion, and he has diagnosed insulin resistance. That has taken us down a path where he, I and the Gynae I consulted think I had undiagnosed PCOS. At his recommendation I saw a private reumatologist. She did blood tests and found nothing. Then this winter, it all got worse. I couldn't get an appointment with her she is so busy, but I had an email address for her and she fitted me in before her normal clinic. She again did blood tests, I sent her the results by email, she said all was pretty good so that excluded certain things. (here in Spain we get copies of all such things and they are, indeed, good, if I didn't feel so grim you would think I was very healthy!!!!!) So, she says I have fibromyalgia. She tried some meds, I didn't tolerate them, and she says try supplements. That seems to be it.

So, do I really have a diagnosis? Should I pursue it? Speak to my GP? I really don't know, I may in the spring but I avoid his office in winter as I always end up worse than when I went in.

But as I do research I am finding that the pieces of my health jig-saw puzzle fit together. I think the PCOS was a key one, and I think the fibro is a result of years of problems going undiagnosed so untreated, then the trauma of two hip surgeries when I was really crippled already.

I would love to see someone who could look at the big picture, but I think that is unlikely, that's why forums like this are so useful.

bobbybobb profile image
bobbybobb

I didn't feel the Fibro course was organised very well and all though some of it was useful, a lot of the patient's felt a bit let down. Some of the people who delivered the course didn't have an appreciation for the condition. xx

pomagranite1010 profile image
pomagranite1010

hmmm. Im currently looking for a new DR, she did do all the usual tests and ruled everything else out, my mom has fibro and when I was telling her my issues she brought itup thats when I researched and thought...Ill be damned, sounds like it. :( next appointment I brought it up and my DR. said yes I think you could be right. sent me to Rhem. ( which was kindof usless) but she did confirm what I already knew, and thats what you need it on paper I guess, even though that along with several bulging.....herniated disk/arthritus in my low back and neck issues, I have been refused medication, and find it harder and harder, doing things like exersise, shopping. Ive always exercised and been active/ quite depressing. my back is the worst . so off to yest another pain clinic and trying to find a private practice primary care. Im at a big name drs place and I cant stand all the rules. and talking to all the diffrent ppl, I just hope I have better luck at a private practice DR. good luck to you!

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