Self diagnosed

[Foxyflower]

For years now I’ve thought ‘I’ve got FM’ Done the research, fit most of the criteria but scared to mention or suggest it to doctor, so only mention condition that’s bothering me at that visit eg IBS, headache, UTI, sleep deprived or muscle aches. How can I pluck up the courage to discuss it without being made to feel silly or neurotic. Thanks in advance I’m new to the site.

[Sue_64]

Hi I joined site in April this year, everyone is welcoming & friendly and very helpful. I was diagnosed with Fybromyalgia in 2007, I struggled for a few years to get diagnosed, I was overweight at the time and was told to lose weight as that was the problem. I already had spinal problems as well and just got fobbed off. Is your GP someone who really knows you best and usually helpful or hard to talk to and that's the problem. Make another appointment with your GP, write down a list of all your symptoms leave nothing out and for a referral to Rheumotology at the hospital, yes you will have a wait but at least get the ball rolling. Their is no test as yet to diagnose Fybromyalgia but they will do tests, bloods, X-rays etc to rule out any other conditions with similar symptoms. That's how I was diagnosed. Could you take someone to the doctors to support you. Keep in touch, I'm now following you it should show on your profile and you can private message me from there if you like

Take care Sue x

[Foxyflower in reply to Sue_64]

Thank you your prompt reply. I’ve not discussed this self diagnosis with anyone not even my family in case they think I’m nuts or a hypochondriac. I’m a reasonably fit female, late 50’s, not overweight but never ever feel 100% well. Last couple of weeks my IBS has flared up, pulled muscle in chest, backache, headaches, sore throat and my anxiety is through the roof as I think I’ve got some incurable illness. My doctor is new so don’t know her well as when you make an appointment it can be with any doctor within the practice, which is usual 3/4 weeks time. I go on holiday in a weeks time so will make appointment for after that. Thanks again.

Jo x

[Sue_64 in reply to Foxyflower]

Can you make an appointment for Docs for when you get back from hols, before you go away. Needs sorting for your own peace of mind. Your definitely not nuts or a hypochondriac, although I thought I was imagining it, but you know there's something wrong because you're suffering and it's very real. Have a good holiday, plenty of rest. I will pm you in about a month, see how you are

Be kind to yourself, sending gentle hugs 🤗🤗Sue

[Foxyflower in reply to Sue_64]

Thanks Sue, I will phone tomorrow to make an appointment for mid July Away to bed now for yet another restless nights sleep x

[Al10]

It took me years to get diagnosis. GP most miffed with my self diagnosing. I don't recommend it. Referred to Rheumy and they said yup, it's fibro, have a leaflet.

Back at my surgery, GP rolled his eyes and wasn't impressed. Fibro is the lazy medics diagnosis. He said, they do it when they are done trying to figure what's wrong. Once diagnosed, that's it. Everything is fibro. And fibro cant be cured.

[pjamas in reply to Al10]

I have had various blood tests and extras because I go to the doctors about the pain in my body .all have came back fine .they dnt seem to listen properly as I had breast cancer 10 years ago and a full reconstruction.since early last year I have been suffering greatly with a burning painful sensation.aching.cant concentrate,it works its way round my body .tiredness.one of my doctors is a difficult woman who would just roll her eyes and the other one has just left ,I feel at the moment that going to a walk-in centre would be better than speaking to what’s available.

[Al10 in reply to pjamas]

Mm, the dismissive eye roll. Most off putting.

I'm always amazed when folks say they got diagnosed with Fibro no nonsense. They then have to go look it up coz it's something new and unexpected. So there must be GP's that are more understanding, just you and me haven't met them.

I guess you keep trying to find one that is understanding and can help you. Don't envy you that. I've pretty much given up trying to get help coz at my surgery it takes weeks to get an appt and then, when you get there, they say, one symptom at a time, so joining the dots cant happen. And even if it does, they shrug and say what do you want me to do? There is no cure and treatments aren't helpful. In the end you have to learn to suck it up. Sorry, that is just my experience. Doctors are too busy to care how you cope with having fibro. They cant cure it or offer much and so they dont like it. I think that is sad and bad practice. Fibro is a life long condition so of course folks will need support coping with it.

I think educating yourself (once you rule out having something treatable) and learning what helps you, is how most of us end up coping.

That said, checking out new symptoms is still important. You can't afford to ignore your body and it's calls for help. It may be telling you there is need for action. Having Fibro can make us complacent as each time we go to the GP it is just more Fibro and just something more to deal with. We can feel we are making a fuss.

I also think one day there will be understanding. So many of us have test results that are 'pretty much normal' with anything sub par seen as being not an issue just ideopathic. I think it is just that science doesn't know what these sub par results mean.

Alternative practitioners more and more are looking to the gut for answers. Everyone with auto immune conditions it seems, has gut issues. Leaky gut is once again back in the news. How to cure that and if you can, will it cure all? Sadly you ask your GP about it and too often they wont want to know. It isn't yet something they can deal with.

I guess it is because they are busy but it seems so closed minded to rule out even looking at alternative ideas. Surely, like us they must want answers and a cure?

[pjamas in reply to Al10]

Managed to get an appointment for Thursday morning👍Any eye rolling and of to see another doctor

[Al10 in reply to pjamas]

Fingers crossed you get some understanding hey?

[pjamas in reply to Al10]

Will deffo let you know after the appointment

[Tinacros in reply to Al10]

I was referred to rheumatologist and he said we don’t deal with fibromyalgia and said I had carpel tunnel syndrome 🤷🏽‍♀️ Which I haven’t

[Al10 in reply to Tinacros]

Don't deal with? How does that work? Who does deal with it then? Or is it just ignored?

[bertie1606]

Hi! Please don't scared to mention it, like sue_64 said write down all your symptoms and tell them you'd like to explore the possibility it could be fibro. I did just that 7 years ago after doing my own research after loads of tests came back normal. My doctor was great then, he said 'hmm, could be, I'll refer you' and I got a diagnosis at my first appointment with consultant. Nobody knows your body as well as you do, if you feel something isn't right it probably isnt. Take care xx

[Foxyflower in reply to bertie1606]

Thank you for your kind reply. Having a bad day with lots of back pain and my anxiety is making me worse, thinking I’m going to die. It’s horrid. Monday I will ask for emergency appointment at docs. 😢😢x

[bertie1606 in reply to Foxyflower]

Oh bless you, what a horrible day for you, try and take it easy, get plants of rest and try and do something you love to do over the weekend to lift your spirits up a little xx

[bertie1606 in reply to bertie1606]

I meant plenty not plants! Xx

[Broken4715]

Hi I’m kinda new on the forum also and I was self diagnosed but I had my CRPS and years of chronic nerve pain “experience” and new my tormentor well, that all said everyone here that’s posted have give you good advice and there own process to acknowledgement, I’ve had 10 years of nhs and military drs but they are only human and not infallible they have never experienced your pain you know your body.

[22Penelope]

Jo , I am in exactly the same position as you but have many other medical conditions, serious ones, I am reluctant to tell my GP I think I have fibromyalgia , I have almost every symptom. I can only be prescribed certain drugs because I Ave a serious liver condition but the constant pain I have is really debilitating and causes my depression to get really bad .

[Vivalaviv]

I self - diagnosed as GP had already given me vitamin d for my pain & i'd waited a few months for some result but nothing changed. Just googled all my symptoms & fibro popped up. Just suggested it to gp but didn't mention google. They get quite upset if they suspect you've researched your own health conditions. Referred me to rheumatologist for confirmation straightaway coz he was as baffled as i was about the chronic pain.