Hi, I'm wondering whether anyone else has balance problems linked to fibro? I had fibro diagnosed last year, have had symptoms on and off for years, also have arthritis, bursitis and tendonitis which crop up at different times. A few weeks ago I began to feel extremely dizzy whenever I laid down flat and moved around on the bed, maybe turning over or just changing position slightly, also when I got up in the night or in the morning. At first I thought it might have been related to fluid in the ears or an ear infection, but what I feel isn't straightforward dizziness but is more a feeling of being thrown from side to side in jerky movements internally within my head. I feel like I'm seasick and the feelings last for maybe 10 seconds which feels quite a long time. It's a bit like being one of those father Christmases that rocks around all over the place on a rounded base until it settles. It's really disconcerting. I was really quite worried and because I also had a bit of a stiff neck by husband even told me to ask about meningitis just in case! Eventually I decided to see the out of hours doctor because our surgery was closed for training that day, and the medic said my neck was swollen and inflamed at the top of my spine and that nerves are trapped causing the extreme dizziness.
So - I'm wondering does anyone else have those symptoms? I'm seeing my regular GP next week and will ask to be referred to a neurologist who can look at what nerves are trapped and why, maybe I will see a physio privately as well. Any other advice?
The feelings you are describing can be symptomatic of Fibromyalgia - Disorientation, balance problems and dizzy feelings too are quite common. However, middle ear problems can also lead to the same symptoms and affect our balance when walking or lying down too.
Please see article below taken from our main site at FibroAction which mentions dizziness in relation to Autonomic Dysfunction in Fibromyalgia Syndrome -
It sounds like you are doing the most sensible thing already Sue, by seeing your GP then asking for a referral. The GP may of course suggest a different referral to Neurology depending on his/her diagnosis of course. At least then you will know for sure whether it is Fibromyalgia or a trapped nerve causing the sensations and dizziness etc., or whether it's something entirely different. Hold fire with the Physiotherapist until you've seen your GP.
I hope it gets sorted out soon for you, take care.
(((hug))) xxx
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Hi, many thanks, I've followed up the link which is interesting although mine isn't so much dizziness as feeling thrown around! It's much more extreme than dizziness, more a case of rocking all over the place internally. The physio I see privately is extremely experienced and I often use her for diagnosis as she's much more thorough than any GP I've seen and won't do anything during an acute phase. She does also use acupuncture which is really good for trapped nerves so I'll ask her advice. Yes, I thought referral to neurology most likely. Thanks for all info, Suex
Hi
My daughter has been having dizzy spells, feeling sick, headaches, she can't move suddenly and lying down can be a nightmare. She also has tinnitus in one ear and even feels sick whilst she is driving.
After an MRI and various tests she was told she has Ménière's disease . It might be worth asking you doctor to be refered to an ENT consultant.
Piggie hugs xxxxxx
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That's a good idea Karen and would also explore the possibility of middle ear problems as well! Thank you xx
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Hi, thanks for your kind thoughts! My Mum had Meniere's and as it runs in families I did wonder about that, but the out of hours GP said no problem with my ears although I think she's not able to make that diagnosis anyway. I'll speak to my own GP and see which referral she recommends. Suex
It might be worth booking an appointment with your gp as every symptom you get might not be fibro related. I had a virus a couple of years ago and I had labryntitis. It affects the middle ear and I had symptoms like yours, throughout the day. It did last on and off for a couple of months.
Hi, I suffer with the same thing, my gp says it vertigo and tinnitus, she prescribed me bethahistine 16mg 3 times a day and it really helps, I know we already have to take a lot of meds but this really works, maybe you could ask your gp to look inti it for you.
Hi, Yes the out of hours GP did prescribe betahistine and it eased things a very little but not much, just took the edge off the night balance problems when I turn over in bed. Luckily I don't feel sick because rather than fight it I just give in to it and wait until it passes! Suex
Yes i definately relate to this as it started last yr with tingling and pain and dizziness,
I have spinal cord compression which is on my nerves so affects balance, thinking memory etc so many symptoms i have.
I actually had operation 2010 and had to go back to theatre 2 wk later after constantly saying something was wring from opening my eyes, i had nerves wrapped in screws so 5 were removed.
Since then had lots of stuff going on.
And now 2 and half years on am using walking stick in process of asking rail for my stairs etc.
So yes really feel for you!!!
At moment i got trouble legs and after standing am getting dizziness itsbad twinges base of spine hips and legs heavy , weak. So DR tonite as gone on over a week now.
Hi, sorry to hear you have all those problems, yes I think it relates probably to nerve problems as I developed sciatica for the first time in a couple of years at the same time as the balance problems which makes it seem likely that they are linked. I also get the heavy legs and weakness, it all started with a 7ft head first fall in the garden three years ago and since then gets steadily worse with remissions in the summer when I'm more active and then stiffening and fibro etc much more during the colder months... Thanks for comments, Hope things are not too bad for you right now, Suex
Hello I do suffer the problems you have with vertigo & trapped nerves, these tend to worsen sciatica & fell down stairs & on the street but so far all I get is more tablets.
I wont bore you with my problems as its really very complicated but definately have the problems, at present my GP has not considered Fibro he says he wants to cover evry angle which worries me since I overdosed in 2011 because of my pain I lost my business & my marriage so I really hope all goes well with you take very good care bill
Hi, sorry you have the same, but what do you mean - your GP won't consider fibro!! He's not able to daignose fibro! I would ask for a referral to a rheumatologist, I had to insist but as soon as I got one several diagnoses that I was sure of were confirmed as was Vit D deficiency and IBS. So insist, never mind what the GP says!. At least then you will know what you are dealing with. Sue
Hi, No, don't apologise. I had come across most of what you wrote but I'm sorry you have such awful symptoms. I had a bad fall 3 years ago - 7ft head first onto a wall and then splattered onto a path and since then I've developed lots more subtle symptoms including some of the ones you mention. I think trauma can damage all sorts of subtle nerve connections and am fairly sure that is what happened to me, so I will get a referral to a neurologist I think, never mind whether the GP agrees! Thanks again, hope things improve for you or at least don't get much worse! Suex
Hi Sue, the symptoms you are describing sounds like what my sister has got. She was diagnosed with Menieres Disease a couple of months ago. She suffers with tinnitis and she gets dizzy spells and has a few tumbles.She has fallen a couple of times aswell. She also has pain in her neck, and is still under going tests. with the neuroloogist.
Yes, it does help, my Mum had Meniere's, my Dad used to laugh it off and say there was nothing wrong with her but she always had similar symptoms. Mine came on suddenly after a bad fall and the back of my neck is always swollen and my head is forward on my neck as though my spine is garadually rounding. I do have arthritis there, also fibro generally and sciatica, bursitis and tendonitis intermittently, so they all connect to soft tissue inflammation and nerve problems. Thanks again, Suex
What you describe is how I feel when the Menieres kicks in. I do have balance issues linked to Fibro but I also have the Meneires and I am going deaf, so I strongly recommend getting your ears checked. You do not have to have an ear infection to have ear pain and awful vertigo xxxxx
Hi
Thank you all for your responses! I did think originally that it labrynthitis but the GP said not, I also thought about Meniere's Disease as my Mum had that and it runs in families, although my Dad used to say it was all in her mind, i.e. not really anything wrong! I thought it could quite likely be an ear infection, but again the medic said not, also no temperature.The medic prescribed betahistine and it eased the symptoms a little but not greatly. I get mild dizziness at all sorts of times, such as when driving, but it's not the jerky huge movements internally that I get when lying down and turning over, then I feel as though I've been picked up and thrown around by a storm and I just give in to it and wait until it passes, it's a weird feeling, really spaced out but not scary for me because I don't fight it. I'm good at letting things wash over me and knowing I'll survive because I had a breakdown and worked through that in therapy so don't really have any fears so long as I continue to be alive - that's an advantage I suppose! Thanks again, it's really helpful to have different people's ideas. I'll let you all know how things go. Hope you all feel better, some people seem to have awful symptoms so I can't complain too much... Suex
Hello Secondhandrose, my Mother also has Meniere's Disease and takes Betahistine for it. She had to have the initial dose increased by her Consultant because it didn't have much effect, but now thankfully her attacks are more controlled. At one time she was collapsing all over the place with her disorientation and loss of balance, which was an enormous worry. Thankfully it seems more controlled now, fingers' crossed.
If you suspect you might need your dose altering, please have a word with your GP or Consultant, I am sure they will be able to advise and help you further. xxx
Libs
Hi Libs
thanks, that's really useful, I'll speak to the GP when I see her next week, Sue
sounds like bvp - benign positional vertigo which simply put means that the crystals in your inner ear are disoldged.. This can be corrected and even GP's can do it themselves if they have done the training. If not seek advice from an Ear Nose and Throat specialist and they may do some tests (most likely will do a hearing check and a few other non invasive non scary things.) I suffer with labyrinthitis quite a lot and this appears to be linked to the fibro spectrum and I succumb when I have had a lot of stress or a cold etc. but with mine I have to cling to walls etc to get from A to B.
good luck with getting it sorted, Darri
Hi, interesting as that's what I originally thought, but the medic I saw said not the ears?! We'll see, I still think it is, but the medic says trapped nerves in the back of the neck, so we'll see.
hi i dont usaully say alot on here but always read as it helps but i feel the need to answer you secondhandrose as i have been experience the same things as you and when i get the feeling of falling i hold my wifes hand to keep me steady but indoors when it happens i tend to use the walls to bounce off and youre right it not dizziness but i supposeif someone see you in the street using the wall to bounce off they would think you were drunk but i had mri scan on my neck and they found a problem between 3 vertibrae the best wy for me to describe because dont understand all this medical jargon what has happened is there is someting seperating the vertibre from each other but on 3 of mine there is nothing i have seen this on the scan and what happens is the vertibre rub together trapping nervs at times so what they plan to do is operate next Feb putting a washer (my words lol)between these vertibrae seperating them which will stop them trapping certain nerves so it sounds logical and they do say it will help with some of my probs but not the pain so i`ll give it a go and letyou know i get on end of next Feb hope this helps
Hi
Thanks for info, it is very interesting as I have a similar problem in my shoulder and was told that the fluid, a bit like gel, that usually separates the bones has worn away or weakened and so the bones rub together, so what you have written may make good sense about the neck problem. I hope the washer helps your problem, I will see my GP and get referred to someone.
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Electric sharp pains 
What were your first symptoms of fibro?/Initial reasoning you saw doc? 99% sure I may have it. 
Dizziness
Symptoms and medications
Groin pain and fibromyalgia are these normal bed fellows.
