Ataxia Pain

[l111ulu]

My partner was diagnosed with cerebella ataxia about 4 years ago. He has the usual symptoms of balance loss, problems walking, etc. What I don't read much about on here or any other site, is the constant pain that ataxia is causing. Shoulders, legs, knees, all painful everyday, He is on medication for it but these days, it doesn't touch the sides!!

My wish for him (apart from not having ataxia!) is that he was not in constant pain. Does anyone else suffer like this?

I'm new to ataxia, having never heard of it till I met my partner 18 months ago. I just want to help him as much as possilbe.

Thank you to all you wonderful people on this site.

[wobblybee]

Hi 🙂 Before I started experiencing pain myself…I’d see others referring to it..and wondered why I didn’t notice pain.

For me..it’s largely muscular pain..and it can vary in severity. But I also have arthritis..so it can be confusing.

Generally..Neurologist tend to disagree that ataxia causes pain… ‘ataxia’ doesn’t but some symptoms definitely do.

I was ok for several years ..mainly because I was mobile…but I had a year of enforced immobility due to poor health…and after that stiffness started to set in, and shortly after that pain.

Currently..I manage with OTC painkillers..Paracetamol was suggested by an Ataxia Nurse, but it hasn’t helped me.

[7151 in reply to wobblybee]

Hi yes my neurologue reconise pain i have to have 2 strong pain killers in thé morning tramadol ..then i can get on with my day ..thé pain is in my legs

[PatsyIpswich]

My neurologist prescribed pregabalin for low level pain which I take 8am and 4pm. My pain is all over but is relieved by sitting down. My neurologist said it's caused by the body coping with imbalance which is like running marathon, not an explanation of where the pain is. Take care and tell hubby, don't forget to smile x

[7151 in reply to PatsyIpswich]

Hi gabalin made me feel bad so im make on tramadol

[Guards]

Although my Ataxia came through injury to my head my system is very similar to your partner, but my symptoms I have described to my GPs over the years as ‘I feel like I’ve been run over by a bus. Result take these …. Codeine etc. which has an obvious reaction.

[Rezzy3]

As explained by my neuro the joint pain could be a result of the ataxia because we carry a lot of inflammation and our body is working overtime. The muscle pain is a result of having to use extra effort to compensate for our mobility issue. The eyes don’t work so good so the neck hurts and it trickles down from there all the way to the feet. My physical therapist told me to concentrate on pulling my shoulder blades into my back pockets, tightening the glutes and tighten the abdomen. This helps a lot to relieve constant upper shoulder pain.

If I interpret my doctor correctly, ataxia doesn’t cause pain. Pain is the result of having ataxia. My neuro sounds like proverb!

[mimosaholland]

hello, I’m sorry to hear your story. I have consent pain also . And share the same condition. I find medication really doesn’t help, but do find breathing exercises helpful, in that it relaxes me, but on other days, nothing helps.

I hope others may have something more positive to share. Take care

[7151]

I do have pains in my legs in thé mornings i take very strong pain killers and wait for it to calm down i réalise now i ve had this problem for maybe 20 years loss of balance then did nt like swiming anymore i said thé water Hurt me i réalisé it was nerve ends ..at last i ve been seeing à realy good neurologue ..loads of scans lumber puncture then not only do they say i have Antakia but they have found which one out of 8 forms ( my g p sayes it changes nothing but i ve now a médical term POLYNEURITIS ..I was given GABAPENTINE for thé oain but it made me feel so weird i stoped ..i va accepter my handicap thé only thing that helps is Pysio in à gréât clinique ..got à handicap badge luckily i can still driy e..i ve given up on all thé miraculeuse cures like homéopathie and suppléments. I m now having trouble to swollow so i live on liquid food ..sorry this is long winded but thats what has and is happening to me good luck everyone it could be worse XXX

[Bikebug]

Have a look on Youtube for EMDR bilateral music as it can help reprogram how we process the signals we get. I have found it helpful.

[Tallguy101]

Hi I have sca 48 and was diagnosed in 2006. Very luckily I have no pain whatsoever and I hope that after reading all the replies it really doesn't come to me down the line. I do wonder if it's just the type I have or the extensive exercises I do every day, balance, strength and cardio for over an hour. I need to ask my neurologist about pain.I do have the upmost sympathy for people that do as just the symptoms of ataxia are bad enough pain free.

[sonofapeter]

I deal with constant pain in my legs. It is a neuropic pain, caused by the disease due to the nerves dying. I tried Lyrica(pregabalin-2 times per day as was prescribed) by itself, and it caused tremendous brain fog. I now use only 1 Lyrica and 1 Nortriptyline and it has produced a better result. We are all very different so remember to always consult with your Doctor before trying anything new, but do a search on "Combination therapy effects of nortriptyline and pregabalin" and you will see what I found.

Best of luck.