I have - at least I think. My gait has really changed since I developed Ataxia. My right leg swings around when I walk [instead of going straight] and now I have sciatica that runs from my butt to the knee. It’s most painful when I sit on a hard surface [sometimes when the surface isn’t too hard like in a car] and getting up from that hurts pretty good. It then loosens up after a few steps but the pain never really goes away.
I’ve been seeing a chiropractor for the last few months and although the pain seems to be getting better at times, it returns.
I used to read posts from people who said they were experiencing pain and wonder if it would happen to me. I thought it was unlikely, since I hadn’t been diagnosed with any specific SCA and my Atrophy was mild. How wrong could I be…over the last year I’ve had daily back and knee pain, and horrendous stiffness.
So far I’ve taken over the counter pain medication and haven’t tried any ‘ataxia meds’. It’s interesting that you’ve consulted a Chiropractor, I have thought of doing this myself, or even an Osteopath.
I fell a few months ago, and although an X-ray ruled out any breaks, I’m still having intermittent pain. Sciatica came to mind, but I don’t have the usual sharp pain running down my leg. I suspect I’ll end up having another visit to my GP.
Muscle spasms can cause pain in SCA. Common pains involve the back and legs. It can effect the hands if you have spasms when writing.
Balance problems while walking, dysarthria, dysphagia and the pains, everything and anything you need to have a life.I wish they find something to reverse it.
Siatica is a separate issue not caused by ataxia. There is likely some pinching on a nerve in your back and may be from a bulging or ruptured disk. It can be quite serious. I would want an MRI and an expert opinion. Its easy to blame all our aches and pains on Ataxia, but there are many aging conditions that appear in time that need treatment and have nothing to do with Ataxia. Sorry to say, our bodies are subject to all the same problems everyone else faces.
I have pain down the sciatic route but was told at pain clinic that it is sural nerve and given pregabalin for it, I can relieve the pain if I use recliner or bed but obviously cant live like that. my mobility gets gradually worse but so incremental that I get used to finding different ways of coping, Sometimes I have to resort to asking for help.
Beryl so sorry to read you fell. I am a bit wobbly. Wasn’t like that exercise like hell, but my head a bit of a sensation of losing balance…plus gone rather stiff. need to recheck with neurologist if some blood thinners needed, it all fells like when walking on fresh air, NO OXYGENATED BLOOD.or enough, then movi8ng less as I don’t wanna fall, just in case I do, wrote a note andkeep in a pocket.I suffer from ataxia, unusual loosing consciousness, but depends how you fall and what gets banged…leavin a phone numbers 2x just in case one away…so who finds me knows…and contact number for family…Ian, my hubby of 18 years passed on in July…Ill for 3 months, 3x in the gym a week, active, mobile…driving…what tragedy that was last year…some close family members still affected…I moved a flat into better for my needs…went home to Slovakia…did xmas and still standing, but this new thing…cld be a cold coming headache.don’t know really. whats going on.
Old age can definitely bring pains and sciatica like symptoms. But reflex muscle spasms are not uncommon in SCA. Yes only an MRI will determine if it is a slipped, bulging disc or a pinched nerve. If not, then the reflex spasms of SCA causing pain should be entertained.
Funny, but my back doesn’t hurt. Only my right hamstring [plus butt] seems to be affected. Pain [but not really pain - uncomfortable feeling] does go to knee and shin now and then but not always. Have to think that my many years of “walking” is the culprit.
Talking about pain late October last year I was trying to start the mower for my son so he could cut the grass for me , lost my balance and fell to the ground went to get back up on my feet again and I felt this excruciating pain in my right hip after a few painful attempts at getting to my feet my partner saw the pain I was in and called a ambulance they slid me on a stretcher and off to hospital, X-ray showed I had a fractured femur, so surgery next day and then 7 week in hospital rehab .
It took longer for rehab because I had trouble doing a lot of physio because of my ataxia issues, my ataxia seems to progressed considerably since hospital, fatigue balance , walking, etc I learnt a lesson not to trust my balance I do every thing with my walking frame and walker when I’m outdoors .
It was good to get out of hospital before Christmas but I didn’t manage to go Christmas shopping
Happy New Year Paul. It’s good to know you were out of hospital before Christmas
A few years ago I was off my feet for some months while I had chemo, and found it made a big difference re getting mobile again. Up to that point, I could trust myself in being mobile/active despite balance issues, and didn’t mind being out alone.
But things changed considerably in the wake of treatment, probably due to enforced immobility. Now, I wouldn’t dream of being out doors without at least a walking stick, or rollator.
I’ve had extensive testing, but don’t as yet have any definite diagnosis, only possibilities. One thought is Episodic Ataxia, but it could be Recessive (I know there’s no info online re Recessive Episodic Ataxia), Another thought is CANVAS (Cerebellar Ataxia, with Neuropathy and Vestibular Areflexia Syndrome) for which I’m currently being tested.
I know for definite that the ataxia isn’t Acquired, or late-onset.
A walking stick gives me support as much as my balance, so the walking stick does not give me enough confidence. On the other hand, a rollator or a walker gives support like a shopping cart would. That’s why I have tried to use a walker for long distance walks like the airport.
From time to time, I have pain in my wrists. Whether it is ataxia or not I don’t know except that nobody else knew either. That smells like ataxia to me. I went to 5 different doctors about it and none could diagnose it. In fact I think one of them didn’t believe me - which also smells like ataxia. It had strange symptoms where the hand was turned outward (palms up). If you try it, you’ll find it impossible so how I could have made it up is beyond me. I don’t have it now but I often feel a twinge as though it’s not far away. I’m like Beryl, no number - but unlike Beryl, mine is an after effect of cancer in the cerebellum.
I’m same as you Shoaib with a walking stick - no confidence. But I wouldn’t use one anyway as I need my hands free. I’ve never tried a rollator but I suspect it would not be wonderful. I tried to push my grandson in his pram and found I couldn’t. He’s now at a crawling age. I can do that so all is well .
I was very impressed with these folks. The therapist just happened to have had some knowledge of our disease, which is not part of the requirements. It was a plus to me though. See if there is a location near you!
I used to read posts from people who said they were experiencing pain and wonder if it would happen to me. I thought it was unlikely, since I hadn’t been diagnosed with any specific SCA and my Atrophy was mild. How wrong could I be…over the last year I’ve had daily back and knee pain, and horrendous stiffness.
Happy New Year Paul. It’s good to know you were out of hospital before Christmas 
I’ve had extensive testing, but don’t as yet have any definite diagnosis, only possibilities. One thought is Episodic Ataxia, but it could be Recessive (I know there’s no info online re Recessive Episodic Ataxia), Another thought is CANVAS (Cerebellar Ataxia, with Neuropathy and Vestibular Areflexia Syndrome) for which I’m currently being tested.