Hi all. I’ve been following this group for some time. I do not have a diagnosis of fibro but all my symptoms point towards it and it’s been mentioned by various consultants and gp. So that’s my question actually. Were you diagnose by consultant or GP? What did that diagnosis change for you?
I’m awaiting results from my neurologist for a MRI I had several weeks ago and once again expecting that to come back clear like all scans and xrays have already. So I’m thinking all be discharged and back on the quest for answers.
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Leo83
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The official diagnosis is usually by a rheumatologist after they and your gp have ruled out everything else. What does the diagnosis change? That’s a bloody good question. For me, it allowed me to stop the “quest” for other, possible diagnoses... and finally get to a place of acceptance so I could redirect my energies instead to work on strategies to help me live with the thing. The thing just needs a name like everything else I s’pose.
For work purposes, it allowed me to argue for reducing my hours and changing some of my activities, modifications to my work space etc. HR and the organisation needed verification in writing to enable these changes.
Wishing you well in your journey (and welcome, maybe..to the club).
Thanks for your reply and what you’ve really said hits the nail on the head. To finally just know after 2 years (the worst part but it’s been going on a lot longer) of being poked and prodded and being told it’s in my head.
Annoyingly the registrar I saw in rheumatology sent me a lovely letter telling me I was discharged as there was no sign of arthritis. But I was hoping they’d look at the possibility of fibro. I’ve been told by gp that consultant would diagnose, told by another gp it’s something he can just “say” I have, by neuro that rheumatology should have assessed and diagnosed. So I don’t know if I’m coming or going.
Yes I think you have to push for it, ie getting the diagnosis in writing. Some of them are reluctant to put it in writing because, after all, there are no tests to actually PROVE it. Try telling them you need it for work, like me, or make a pest of yourself until someone does it for you. It’s a rotten situation to be in, I know...nothing worse than having aspersions cast, especially when you are legitimately crook ... we’ve all been through it here. Someone else is sure to jump in soon to give you more advice. (I live in Australian time zone so I seem to get first crack at unanswered posts). Wishing you a smooth ride of it.
Hi and welcome - what the diagnosis did for me? The answer is nothing really - took over 30 yrs to pin a label and to be honest still the same person after as 5 mins before the label was given! Rheumatologist locum gave me my diagnosis and proudly announced she had given the same diagnosis to 5 others that day and as the hospital didn’t treat fibro I was being discharged back to GP.
There’s a lot of prejudice out there and many believe fibro doesn’t exist. I just carry on the same as before.
I still work although have reduced my hours. If the government hadn’t moved the goalposts several times would have been retired by now☹️.
As fibro is different for all of us it’s our own journey to find out what works for us.
Many use prescription drugs others can’t tolerate them so rely on alternatives such as diet, gentle exercise, heat or weighted blankets, tens machine, chiropractors etc etc or a combination of meds and alternatives.
For me it was my doctor , yes answers needed so you can get the right help if diagnosed and adapt to daily life if it’s Fibro , I won’t welcome you just yet to this very big unwanted club until you finally get your answers , but a good forum with lots of chat , info and empathy xx
Yes this Covid is causing huge problems, I seem to be getting a new practitioner nurse who I don’t know when asking for advice not my doctor and done over the phone . Let us know how it goes for you .
I was diagnosed eventually, by a Rheumatologist, after complaining for years about aches, pains and fatigue. I have also seen a Neurologist three times. It took years, excluding all the possibilities.
Hi Leo83 fibromalgiya don't show up in scans it's wat you feel witg ur body how much pain do you get and wer if u goodle fibromalgiya trigger points you will get some idea I wasn't diagnosed until over a year later but me and my daughter goodled it straight away I realised I had this and I just kept saying to my gp I can't handle the pain or bare it he reffered me to a pain clinic and was give pregabline and anf said it should help did it hell ended up putting weight on instead if you have pain u can't bare keep telling ur gp xx
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