Fibromyalgia Action UK
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My balance has been very poor for some time now and I have put it down to my fibro. Today I saw a neurologist who has diagnosed me with ataxia. There are various causes of this conditions. I now need an urgent MRI scan to check if the cereberal part of my brain has shrunk. Hopefully this is not the case, whatever the cause it is a condtion that will only get worse. I could end up having to use a wheelchair. I suppose the moral of this story is, dont let your GP's fob you off with everything down to fibro or even worse "in your mind". Check things out xxx

24 Replies

Hi there

ive been the same, and am waiting to c neuro for scan.

i had what they believe was a seizure 5 wks ago, and my balance, gait and left side are all off! when i saw my pain med nurse yest. shr did say with our condition that on scans it csn show up shrinkage in areas of our brain, which adds to our fog.

good luck. hugs x


Oh my! I do hope the MRI reveals no lasting damage. Thanks for the warning. I'm sure we're all so used to weird aches, pains and sensations popping up from nowhere that we just ignore them and get on with it. Crossing my fingers for you xx


Morning that does sound horrid so good luck hope the MRI shows nothing untoward. Look out the MRI machines are very noisey good luck xgins


Smugs to you smiley hugs


Well peeps yesterday I went for spinal injections, into my lower back ouch they were painful but today I have no pain in my lower back woopy please let this be long term. Has anyone else had these injections ? If only they could inject some of the main fybro hotspots.i have sever arthritis and three ruptured disc in my back so if these injections help at leasy some of my pain I will feel like a new woman xx keep you all posted on my progress.have a relaxing painfree weekend all xxx gentle hugs.


Hi o had mine dun this feb , its easing of now but it put me back to when i first damaged my back my legs an hips are wors that before but i dint get as much cramp in them an my Coccyx was manipulated aswell very painful but feel lot easier to sun now so not all bad .

Other than ive had the New row virus for over a week an thay think i mak of contracted it from the Hospital s it can take a couple of weeks to come out :( not a well bunny .

But do hope your back keeps feeling beter xx


I do hope that your scan turns up something treatable, or not too serious.

Fibro hurts, we all know that, but if you have any other suspicious symptoms, don't let your GP blame it on fibro without some proper investigations!

Moffy x


Oh that must be so worrying for you, and we all so often put so many things down to "just fibro" . I really hope that the scan sorts things out for you, hopefully in a treatable and good way. Sending lots of positive thoughts your way. Foggy x


Thanks for telling us about this as everything I put down to the Fibro and then discovered I had cervical cancer and my balance has been really bad down my left side I have not mentioned this to my doctor but I will now or will mention it to the rheumatologist I am going to see next week I still keep putting everything down to the Fibro but its nice to come on hear and see other people talk about what symptoms they are having so thanks and I hope things go well for you


Hi, I too am always stumbling and falling. I have fallen downstairs 2 in as many months and am always seeming to be listing to one side.

I had an MRI on my neck and they have found a prolapsed disc, so maybe this is the cause? I won't know until I see the spinal chap again in April.

I always attribute everything to fibro and I think this could be dangerous.

I hope all goes well with the MRI Siver52 x


I have balance problems and i was told i have Benign paroxysmal positional vertigo. I did under go a MRI, when i went to the memory clinic and i was told i have grey matter but the amount i had should not have made a difference. I was sent to the Balance clinic where they found i had the BPPV, they also found out i need hearing aids. I had to attend the balance clinic every other week, for about 6 months and i had to have a Dix-Hallpike maneuver. I'm not as bad as i was, but i still have turns now and then


Can I ask what grey matter is please as thought that was a general term for brain matter. Think I may have missed something. Also was the memory clinic any help as we have a memory cafe here but I thought it was just for altzimers. Thanks Elaine


i hope this explains? i know what i mean, but the head will not sort it

although a person may show strengths and weaknesses in specific areas of intelligence, both the strengths and weaknesses stem from a combined volume and activity level through the individual pattern of matter in the whole brain. Although larger concentrations of gray matter can denote intelligence and skill, small concentrations and deficiencies can lead to problems.


the one thing i think is funny (and i don't mean the ha ha funny) reading all the messages, people are saying that they have had back ache or something wrong with back or neck. the reason i find it funny is that when i had an MRI apart the dogs knocked me down it showed that i have 2 disks fused together. ????? is anyone else seeing the link?????


I have had a prolapsed disc for years and also get severe pain in my cocyx , dr said the pain in my cocyx was probably arthritis which I have in my spine/hands/feet and neck. So seems there could be a link with fibro.


I have had the listing off to the left for years now and many falls and virtigo from mild to very severe to the point of not being able to watch tv or read a book even. Spent months just sitting doing nothing but staring at wall, totally depressing. I have often had stiff neck and pains in neck.

I was refered to virtigo phisio who gave me some exercises to do and symptoms were slightly better so she announced I am soon to be cured. I wasn't so she signed me off from her as cured anyway. The rhumatologist won't see me after his initial diagnosis as he says I have fibro, got to live with it nothing else he can do so no point in seeing me. The neuro and ent won't see be because virtigo phisio says I can be cured with exercise. It's a flaming joke. Meanwhile this week the virtigo has been so bad I have fallen three times and that is using crutch to help with babance. I wonder if they may do something when I finally stop bruising and actually break something?

I do hope they find you something that is not so nasty.


thank you all for your kind comments, I have my fingers crossed


Hi All,

I've read all the above comments with great interest.

My problems started with a seizure in my sleep in 1990, this was my one and

only, but it's been downhill all the way since!

Prior to that I'd experienced 'off balance' and feelings that the floor wasn't level,

as well as nasty sensations (de ja vu) after getting out of bed and standing upright in the


I was diagnosed with Left Temporal Lobe Epilepsy, put on a succession of

medications and any future symptoms I had were simply ignored, I had a diagnosis

what more did I want!

Eventually balance got considerably worse, my eyesight was affected, I had tingling

and trembling sensations, brain fog, and got very depressed. I should have had a

reserved seat at my GP's, he must have been as reluctant to see me as I was to be there.

At one point it was thought that BPPV was the cause, if only, at least you can do

something to alleviate that.

MRIs have confirmed I have atrophy of the Cerebellum, abnormal pressure from twisted arteries in my neck (whiplash?), no operation to sort it, no medications, go away and live

with it. After years of thinking I had Epilepsy, was I supposed to feel better?

I've had numerous specialised blood tests, cameras up and down.

It's very frightening to have horrible symptoms and no-one listens, you feel caught

in a vicious spiral and get to the point of self-diagnosing, it's all you can think about.

As long as you have worrying symptoms do not give up chasing your GP!

Best wishes



I wonder if a survey could be put up and find out how many people suffer from pain in their ears, neck and back?


hi siver 52,,yes i too ahve been suffering with my balance and my speech too, i have an app to se a neurologist in a couple of week, it is such a worrying time isnt it.dont we have enough pain and problems with fibro, now the balancing and speech, i hope you get on ok with m,r,i scan, plz keep us posted, take care xx


I am having balance problems and been put on meds, the doc says its vertigo well I am not sure, I walk into things, fall all over the place, and the palpatations are horrendous, and I feel like I have to force myself to breathe, docs as usual just say keep taking the meds, doh I want it to be checked and sorted I have 2 mri scans on last 3 yrs, all they say is its not really bad just a few small area's which are down to wear and my age ( age 55 ) neurology said ME fibro, arthritis,plus I have severe sleep apeona, and depression, in the appointment with neuro, when he had me walk in straight line I almost fell over twice but they still say I am ok, just wish they would stop blaming fibro for eveythig, xx


I suppose I was lucky with the neuro, I think he had made his diagnosis before I sat down coz I stumbled into his office. Having done some reading on Ataxia and joined their site on healthunlocked. If you have Ataxia It will get worse. I dont know why they are sending me for an MRI scan coz the prognosis for all types of Ataxia is the same. It will end up with me prob needing to use a wheelchair. There is no cure and very little treatmeant that is effective. But it was good to get a diagnosis.


Hi i found this post very insightful thank you to Siver52 for posting. I have been having issues with my balance particularly upon getting out of bed, also been having a weird sensation of falling every so often when im walking and get the impression that the pavement is shifting and moving beneath my feet. i've put this down to weird fibro symptoms but am going to act on your advice and get it checked out - just for piece of mind.

Hope you get support and treatment for your latest condition take care

Dixie x


I found it usefull to describe they way I felt like" trying to walk on a moving bus" rather than say I feel dizzy. For me that is exactly what its like and I think even doctors can relate to that.


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