Does anyone else with Cerebellar Ataxia have back pain and knee problems? I am having serious back and knee problems probably from always lunging to the side. I’m just wondering if I’m the only one. Thank you.
Problems with back and many of the other joints are very commonly seen with ataxia. I had been to physical therapy with my backache twice in the last 3 years. Muscle spasms and overcompensation by the joints are associated with ataxia. Dystonia, tendinitis and teno-synovitis are also very common occurrence. Some patients with muscle spasm are prescribed muscle relaxants.
I have an odd one. My neck really hurts. I assume it is from tilting my head to the left—probably because of my vision problems. I have been trying to hold my head straighter, but it is hard to do. I guess eight year old habits are hard to break.
Funny you should mention this Linda. For quite a while I’ve pottered on without major discomfort of any kind, then I began to notice stiffness setting in on a regular basis Okay, I had expected that to happen at some point, but almost constant pain as well, it’s adding insult to injury
Like you, I’m inclined to hold my head at an angle to compensate for vestibular problems, and I notice my posture is continually ‘off kilter’ if I use my walking stick instead of the rollator It’s highly probable that I’ve inadvertently aided and abetted the other dreaded ataxia symptoms that can kick in
Something else I’ve done that hasn’t helped with neck pain. Due to BPPV (dizziness turning over when lying flat) I support my head on 3 pillows in bed. I don’t know which is the worst of the 2 evils, horrendous Vertigo or a painful stiff neck I’m making light of this because it’s all that really helps, staying clear of meds as long as possible xB
I am more of a wimp and have been into the Tylenol for my neck. I figure that if that treats it, it isn’t too bad. Again, I’m a wimp. I’m very lucky that I don’t have real pain
Linda, I’m inclined to try regular pain relief as a first course of action too, you know yourself when ‘enough is enough’ and actual medical advice is needed. But I absolutely dread having to consult a GP The local medical practice I’m registered with, is now basically run by locums, several of the partners have actually started a private practice a few miles away Not exactly convenient if you want to see the same person each time, and appointments are like ‘hens teeth’.
Many years ago, well before ataxia, I had what I thought was a trapped nerve in my neck. This reoccurred a few times, but I managed to get relief by having treatment from a Physiotherapist, for which I paid privately. The NHS offers a great service but generally speaking, referrals for any reason can take many, many months unless it’s considered an actual emergency. Ideally, I’d prefer to be healthy and stay well clear of any medical intervention xB
My friend is a doctor and he always says not to take ANY pain pills [OTC] for a long length of time since they can affect your stomach and liver. Just saying.
As far as I know, that is very good advice. Given that I do not drink and that I am taking something like four to six regular strength Tylenol per week, I think I am ok. I actually took a lot more when I broke my leg, but the alternative was narcotics and my doctor sister said to go ahead.
I cant do that bc I get really bad headaches (REALLY BAD) and OTC headache meds cause rebound headaches. So while I take OTC when I cant take it anymore, I can’t do it often. You’re lucky you can…just be careful.
Both vertigo and stiff neck are awful. Take care of yourself, Beryl.
Some people do get horrendous headaches, similar to migraine. Has your Neurologist been able to give advice xB
After months of being aware of increasing stiffness after sitting, almost constant pain has set in. At first, I put it down to ‘overstretching’ - which is laughable because I must be just about the only person not to heed advice, and exercise Last weekend I rounded up all excess/out of date meds and took them to a Pharmacy for disposal. It was embarrassing to realise how much, and what type of medication had been squirrelled away for so long (years) Now, my hoard resembles Mother Hubbard’s Cupboard, I just have the bare minimum of basic painkillers…until I next speak to my Neurologist xB
I agree that I am very lucky not to have the horrible pain that many here suffer from. I try to remember that when I feel sorry for myself because of my mobility problems.
My husband has suffered for some time with knee pain and occasionally his knees giving way. About 6 months ago he saw an orthopedic doctor and they took an xray. The doctor came back in telling my 71 year old husband he had the knees of an 18 year old. Yet another blow dealt by the body part being in excellent condition yet the brain signals are not making full connect during certain times.
Yes we are very thankful that not too much pain is associated with my husband’s EA2. His inactivity is the burden of beast that he finds the most heavy.
Ataxia causes the muscles to become tense, trying to keep the balance. These spasms or dystonia are responsible for back pains, joint pains even teno-synovitis. The underlying joints can be perfectly normal. I use muscle relaxants and stay extremely careful about all the muscles when I am trying to do something. Sometimes I fail.
Beryl-I’m sending you a message.
I too suffer from chronic back pain. Mine is in the lower back on either side of my spine more so on the left. I have been to about 3 physiotherapists 2 chiropractors and 2 massage therapists all to no avail. I also went to each of them about 6 or 7 times. Thank god for extended benefits. I’m still trying to find the best modality to treat my back pain. What do you guys think. I’m going to try another reg. Massage therapist tomorrow.
It seems a lot has been done to try and rectify this problem, has your Neurologist ever suggested it may be ataxia related and possibly due to bad posture etc. Has anybody suggested an X-ray or scan xB
Thanks Beryl for the feedback. It is definitely ataxia related. I sit most of the day. I only see my neurologist once a year. So need for xrays since it is definitely muscle related.