Posted , 6 users are following.
Has anyone else experienced muscle (leg and back) aches and spasms by trying to keep balanced when you have disequilibrium, or is this just because I am generally out of shape since I don't walk as much anymore?
What do you do to help that? This is really bothering me, as it seems the dizziness is affecting more and more things by the minute!
Thanks.
0 likes, 14 replies
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charlie49460 dee50000
Posted
Yes, definitely have had muscle spasms with my labs/vestibular neuritis (I am about two and a half months in). Legs and arms have been twitching on and off for months, and I have had aching calves or jelly legs on and off all this time too, like I did a long run the day before, but I didn't. Another thing I have just started to have is loud knee clicking when I climb the stairs and sudden knee pain while walking, to go with the chronic shoulder pain and the pins and needles feelig in my left arm/foot and even tongue.
I was in pretty good shape before this came along so it's not fitness. I have read that it could be anxiety-related (I don't really believe that – I don't feel at all anxious now) or muscles trying to keep up with balance problems (more likely) or just general nerve confusion (my favourite). The GPs I have seen don't know anything about it and were no use on this particular aspect.
I can't help with a solution – I am just living with it and hoping it disappears when the condition as a whole goes. Things are getting slowly better. My advice would be just to keep moving/exercising and don't let it stop you doing things if you can. I completely agree it is at first *very* alarming: I thought it must be MS or some muscle wasting disease. When I realised other people had experienced similar sensations it became less of an issue for me, and I believe it will eventually go.
Best of luck,
C
victoria78511 charlie49460
Posted
charlie49460 victoria78511
Posted
I have done the exercises but not much, and then only because I read about them on the internet. The ENT I saw recently said not to bother, that it was better to get out, exercise, and get your vestibular system to relearn that way, through walking, cycling, running etc. I don't think the VRT will do any harm mind you.
Pins and needles was definitely something I felt earlier on and occasionally feel still, in my left side and right now in my lower lip. The non-specialist doctors I've seen don't seem to make any connection with labyrtinthitis, but others on this site and elsewhere seem to have had it, so am no longer worried about it, I think it's just part of the general vestibular dysfunction. I also don't really have much spinning, just the occasional feeling of suddenly not quite being stable, occasionally having to readjust quickly so not to bump into a doorframe etc. I don't think I have had it really severely, but the weird symptoms (including heart) and the worrying about what they could mean have been the worst of it.
My ENT said that if I had VN it would go away. It always does, even if it takes months. And it certainly (or almost certainly!) won't come back. So am clinging to that, and keeping trying to get out and live life as much as possible.
Good luck! As well all know, it's a horrible thing to have.
C
victoria78511 charlie49460
Posted
les73507 charlie49460
Posted
Hello, I know this is an old thread and it is a longshot that you are still monitoring this, but Charlie49460, did your symptoms go away as you were hoping? I have the same symptoms that you talked about, twitching, aching calves, jelly legs, pins and needles etc. My docs say it is not associated with VN. I am hoping that it is. Thanks for a reply if possible.
L
charlie49460 les73507
Edited
Hello Les,
Yes, the symptoms have completely gone away. I came to the conclusion in the end that it was all related to anxiety. Essentially, my body being super-stressed for a long period of time (I had some extremely difficult years in my career) came out in physical symptoms while psychologically I felt OK. I know I dismissed it at the time, but I'm certain that's what it was. The best thing I did was buy a book suggested by the ENT. He said many of his patients benefited from it rather than expensive psych therapies. Over long periods of stress the body can develop a range of symptoms such as twitches, spasms, vertigo, heart palpitations, etc, but that the really difficult thing is the response you have to these symptoms. Basically, you think you have a serious illness and this makes the symptoms worse. It's secondary anxiety, if you like, and a positive feedback loop. She recommends facing the symptoms down, accepting, almost welcoming them, while trying to relax your body as far as possible and just watching them occur, knowing they are not dangerous. When I understood this it all made huge sense and they went away very quickly for months. When they came back I practised this again and then went away again. The knowledge that this worked was very helpful in itself. I didn't just use the book: also a daily meditation and exercise. Dialling down the body's stress and getting rid of unused adrenaline made a difference.
I know people don't like to be told it's anxiety as it seems like you're being accused of hypochondria, but anxiety is a serious issue. It made my life very difficult for years and it's still with me, though being aware means I manage it much better and life is good. Yours might be something else of course, and I'm just talking about my own experience.
Hope it helps.
Best wishes,
Charlie
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les73507 charlie49460
Posted
Charlie,
Thanks for the reply. I was surprised that you are still monitoring after 6 years. So were you actually diagnosed with Vestibular Neuritis and what symptoms did you attribute to VN? You are convinced that your other symptoms were anxiety and not "nerve confusion" like you originally thought? Mine could be I suppose, but I do no feel like I am anxious, and some of my symptoms are physically noticeable like the muscle twitching in my extremities. I do not have any heart related symptoms at all. My physical therapist still wants me to continue with a neurologist to try to get to the bottom of it. Neuro appointments are hard to come by around here. Can you share with me the name of the book? Thanks again.
Les
Feelingdizzy888 dee50000
Posted
I totally understand how you're feeling. All this started when I had a virus about 4 weeks ago. Dizziness, vertigo, pins and needles in left arm. Back ache, aching legs etc. I've been off work since Monday as I work with vulnerable people in the community and I'm not driving at the moment. I don't think GPs can sympathise, because I still look healthy. Kind of feel like a hypochondriac
Must admit though, the anxiety has since subsided, and every day seems to be better. I've been prescribed betahistine for the symptoms. I've noticed that when the dizziness kicks in, my left shoulder is painful. Bizarre!!!
I'm now using aromatherapy, 2 drops of lavender and peppermint behind the ears. Seems to be helping and smells lovely.. There does seem to be a lot of people suffering with this, but fingers crossed, we're all on the mend now..
Wishing you better
S 0:-)
kathie37110 Feelingdizzy888
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Feelingdizzy888 kathie37110
Posted
I mix them together in the palm of my hand, then apply to the back of the ear.. I agree, conventional meds make you feel worse, chamomile oil can be mixed in too.. If you google reflexology, there are pressure points on the toes that encourage the blood flow in the ears.. I'm a great believer in alternative medicines.. Seems to be a lot of us suffering with this dizziness at the moment
Wishing you better
kathie37110 Feelingdizzy888
Posted
dee50000
Posted
dee50000
Posted
Yesterday's appointment "diagnosis" for unrelated problem went from "It's probably Raynaud's syndrome", to "Could be neuropathy", to "No, it's a callus", to "I'm sending you for an xray of your toe (?!), it may be broken".
No wonder they can't figure this imbalance thing out, or the back problems caused by it... it's all a guessing game! Very discouraged.
kathie37110 dee50000
Posted