Hi all,
The sudden onset of joint pain (particularly in the hip area,) has me wondering: is this ataxia related?
It occurs after I have slept or sat for a minute or for hours. Anyone have/had this?? N
Yes ... I too have this problem and complained for a long time to my doctor. After several different physios the conclusion was that it is due to weak muscles in the thigh area.
Night time is the biggest problem because the pain starts as soon as I get into bed and that then means no sleep . That then aggravates the fatigue.
Yes I have this too..BUT according to my. Neuro..I don't have...ataxia..in the first place..duh??
Time for..another Dr!!???!!
coco said:
Yes ... I too have this problem and complained for a long time to my doctor. After several different physios the conclusion was that it is due to weak muscles in the thigh area.
Night time is the biggest problem because the pain starts as soon as I get into bed and that then means no sleep . That then aggravates the fatigue.
Diana Grapes said:
Hmmm that's very interesting because I'm now skin and bones..no muscle at all..think that is the reason I have such a hard time balancing myself..I think..gonna call a or to come to the house..to see if he can help
Pretty sad..for a woman who was extremely..active..Just a few years ago!!
coco said:Yes ... I too have this problem and complained for a long time to my doctor. After several different physios the conclusion was that it is due to weak muscles in the thigh area.
Night time is the biggest problem because the pain starts as soon as I get into bed and that then means no sleep . That then aggravates the fatigue.
I just started having pain in my left hip and found stretching helps, especially the hamstrings and the quads.
I was told this is secondary condition caused by ataxia walk. I was given pain killers but now find that with a memory foam mattress, I dont get hip pain at all.
Memory foam can cause overheating but they now make a memory foam mattress topped that is heat sensitive so you dont get too hot.
That's in the UK.
Hope this helps, xx
Hi Neta
I too get this but for me it is more to do with the gait that we walk with, I also get it when I stand for a long time in one spot (maybe a gig or similar)
As Coco said, It is probably due to weak thigh muscles. Maybe some physio might help, good luck xx
Coco and others. My son had the same problem for a few years and was told by a naturopath that it was related to the psoas muscle and that he should strengthen it, not just stretch. He went on You Tube and did an exercise for it there and his pain went away. He isn't sure if it's ataxia or the fact that he sits at a compute most of the day into evening for his job.
some 15 years or more ago (pre-ataxia) a dr. told me I had bursitis that caused the pain in my hip. I got a shot directly in the joint and one in what they called tennis elbow. The shots hurt as bad as anything I have experienced going in, but helped for a time. Later it started hurting again, I started working out at Curves, it stopped hurting again. After I got Ataxia and hubby got cancer we sstopped working out. After a couple of years, the pain got excruciating in my hip. Pain killers wouldn't touch it. A friend had similar pain each morning--the dr. said it was bursitis, sciatica, and arthritis and prescribed physical therapy for her for a short time followed by exercises done on her own. I have been going back to Curves--for about 3 months. It has reduced pain not clearedit yet. PCP says risk of getting on machines is out weighed by good of exercise.
Merci for the info about the PSOAS muscle, Judita. I did not know I had one of those… 
My hips are fine right now, but it is a fact that walking with a different gait than our body was meant to, does eventually create problems. A therapist for stroke rehab warned me about it and this is why we need to see a therapist once in a while to keep an eye on us and tell us if we are doing something wrong and help us correct our mistakes.
Now keep smiling while you march and keep your chin up.
Thanks for the information Cicina! I didn't know that!
Mine has just started.It may be because I have diffiiculty turning over in bed or because I have changed from a walker to a wheelchair.One of our support group had a lot of hip pain about 2 years ago.I think her GP dealt with it.She doesn't seemk to have the pain now.
Hi Neta,
Yes I have a lot of back pain if I sit it does not seem to matter if its only for an hour or more. Also when I wake up in the morning with stiffness in my legs and by back more towards the hip area I am currently seeing a Physiotherapist to assist me with various exercises.
Nana
I too am experiencing hip pain on my left side and all the above comments are correct. My neuron had me x-ray and the hip was okay. The gait, spasticity, are contributing factors. It's really painfully after sitting for a long time.
Just saw these answers now so thanks. Havent yet discussed this w my neuro, but a PT in NYC agrees that it;s ataxia walk related and gave me a bunch of exercises. But I wonder; how is it that I feel a certain stiffness in my arms and in my jaw? Bladder muscle like doesnt exist if I ignore urination sensation.
N
coco said:
Yes ... I too have this problem and complained for a long time to my doctor. After several different physios the conclusion was that it is due to weak muscles in the thigh area.
Night time is the biggest problem because the pain starts as soon as I get into bed and that then means no sleep . That then aggravates the fatigue.
Hello Neta,
I think that bladder weakness can be related to ataxia. Check with your neurologist. The brain controls all of our body and when the part of the brain which controls a certain function is damaged this function will be affected. This is why everybody’s ataxia is different. The symptoms will all depend of the extend and the place of the damage on your brain. Do talk to your doctor about it though.
Also, for your other symptoms, you could check all the possible side effects of any medicine and even supplements that you might be taking. You never know. We all react differently.
Hope this helps. Good luck to you.
OOOOOOHHHHHHHHHHHHHHHHHH MAMA do I have it! I think that my pelvic wings have actually separated from my coccyx and have an appointment with a specialist for X-Rays and maybe and MRI. I KNOW it is from having to 'throw' my legs forward to walk instead of my old 'normal' walk. The only time it doesn't hurt is after I lay on my back for a while. Sit too long - HURTS. Stand too long - HURTS. Walk to long, you get the picture. I am going to try to remember to share what I find out from the specialist. Best of luck,
Mark
I have Ataxia along with the pain in bed. It affects my hips and spine…help please it’s making me feel like life isn’t worth living. I too am sick of going to the loo during the night also.