Has anyone here with SCA6 experienced severe joint/muscle pain?
I have got idiopathic Ataxia, I haven’t been given a type yet, it could be SCA6. How did they come to that conclusion? Anyway, I do suffer from chronic pain starting in my left hip and working it’s way across my back to the right side of my neck. I take Tramadol, Gabapentin, Paracetamol, Iboprufen and Amitrypteline, (the last one only at night as it makes one feel so drowsy) and this helps me get through the day. The pain starts to be more evident as the evening approaches and the fatigue sets in. I find exercise is the only thing that really works though I need the painkillers to allow me to do it. I get the feeling that most people with Ataxia don’t feel pain like that on top of all the other symptoms.
The physiotherapist visit has been well worth it in my case
Interesting, I have progressive cerebellum ataxia, but have not been diagnosed with the axact sca ,
but I also have bad pain in my joints and muscles, when its gets too bad, I take Co-codamol, basically an opiate
works a treat ,as its numbs the body !!
paul
I have very bad joint/muscle pain. But I believe it is not due to my Ataxia. Just my opinion.
I have gluten ataxia and suffer from muscle pain and cramping. Am certain it is related to my condition as the muscle soreness peaks when I am having an attack. My neurologist diagnosed me with dystonia; and has treated it with botox injections in my neck which has made a world of difference. Neck had been incredibly sore and stiff but the pain is gone. She says the dystonia causes phantom signals to your muscles; which cause cramping and involuntary movements.
One med that had worked was a muscle relaxer called Lorazepam; but i had to discontinue some time ago as it exacerbated my imbalance issues.
Buffalo Bill. I just meant to say my pain is not due to my Ataxia. I know a lot of people on here do suffer from all sorts of things. And I hope I don't get half of them. But mine is all Arthritis. Yea I was on the same muscle relaxer to I had to go off because of my balance.
I have got idiopathic Ataxia, type SCA3 CONFIRMED I do suffer from chronic pain starting in my left hip and working it's way across my back to the right side of my neck. I take Tramadol, Gabapentin, Duloxetina, pregabalina 300 mg Paracetamol, Iboprufen and Amitrypteline, (the last one only at night as it makes one feel so drowsy) and this helps me get through the day. The pain starts to be more evident as the evening approaches and the fatigue sets in. I find exercise is the only thing that really works though I need the painkillers to allow me to do it. I get the feeling that most people with Ataxia don't feel pain like that on top of all the other symptoms.
Sorry my copy paste, but my English is so poor.
I have as yet not fully diagnosed Ataxia but one of the neurologists I have seen also sees my dad and he has Cerebellar Ataxia and when comparing my notes and those of my father (permissions given) the neurological team came to suspect that I too have Cerebellar Ataxia (this has not been confirmed as yet).
What has recently been confirmed is that I have Fibromyalgia - http://en.wikipedia.org/wiki/Fibromyalgia has details.
I currently take co-dydramol to help manage my pain, amitriptyline as a muscle relaxant and to help with sleep, Macrogol (branded name - not sure of other names) to combat side affects of other meds and I use Feldene Gel (Piroxicam) to help with localized pain (mostly in neck). I have spoken with my (main) GP about stronger pain killers and other meds but we mutually agreed that I should try, for now, to make do with the current meds as stronger ones or higher dosages may lead to a type of negative reliance or addiction. Ibuprofen is a massive 'no, no' for me as it affects my digestive system adversely.
I used to do 2 or 3 1 hour sessions at a small local gym that had support workers that were aware of my condition(s) and would help where needed. That gym is no longer available and I am looking to start at a new one soon - I have exercise gear at home too. I find that exercise does help but I can only do so much and only when I feel 'up to it'. I do basic 'stretching' exercises for 5-10 minutes each day as directed by my physiotherapist and this really does help.
In my case, I have constant lower back pain, recurring shoulder pain, I get joint pain, muscular pain and just generally pain around my body. The pain varies in severity and is not always in the same location (apart from the lower back). Often the pain will start in one place and spread from there before it dies down! I also get 'pencil point pain' (it's literally as if a dull pencil point was been held or pushed forcibly into the area in pain) that can be anywhere in the body and last anything between about 5 minutes and an hour or so! More often than not, my pain is worse at night or when I am fatigued. Sadly, I can get fatigued very suddenly and quickly - even if I have not been exerting myself.
It seems the pain I get is, in parts, attributable to both my Ataxia and Fibromyalgia. Pain eradication is probably not possible but pain management is!
Buff, with gluten ataxia, if you never eat gluten again does your ataxia go away? Is it 'repairable'? Or did the gluten cause irreparable damage? Do you mind sharing a bit of your experience with me? I am curious, because my daughter has ataxia and Celiac disease and I would like to know what your experience has been.
Buffalo Bill said:
I have gluten ataxia and suffer from muscle pain and cramping. Am certain it is related to my condition as the muscle soreness peaks when I am having an attack. My neurologist diagnosed me with dystonia; and has treated it with botox injections in my neck which has made a world of difference. Neck had been incredibly sore and stiff but the pain is gone. She says the dystonia causes phantom signals to your muscles; which cause cramping and involuntary movements.
One med that had worked was a muscle relaxer called Lorazepam; but i had to discontinue some time ago as it exacerbated my imbalance issues.
Sorry Cher if it sounded strange ((I think you thought I was being rude) but I have been wanting to be confirmed as a particular type of Ataxia and I have been visiting the Ataxia clinic at Sheffield for 3 years and I keep asking which one I have got and they say they don’t know.
I sincerely mean how do you get it confirmed? Is there anything that I should be asking them to do at the clinic?
Cher Macdonald said:
Lockie, what do you mean how did they come to that conclusion? Thanks everyone for answering. I’m at a loss at this point.
I was diagnosed with Sporadic (idiopathic) Cerebellar Ataxia 10 years ago. I have some pain in my hands, joints, neck/shoulders, and middle back, although I believe some of it is arthritis and wear and tear from how physically active I was before ataxia. I also think some may be caused by having ataxia, as I believe the way my muscles tense up and spasm, causes muscle soreness. I fell about three years ago, severely hurting my back, and had micro-tears in the ligaments. I still have problems with that. I don't take any prescription meds., just over-the-pain killers occasionally. I find exercising/stretching helps me the most. Some aches and pains may be caused by ataxia, some not...,I really don't know which is caused by what specifically! I just keep moving the best I can...., ;o)
I have confirmed SCA6, I have chronic pain all over as well, I take Percocet, Gabapentin, and I use these lidoderm patches, they say I also have neuropathy in my legs as well as Fibromyalgia and Chronic Fatigue, I can hardly sleep at night due to the pain in my legs and across my back below the shoulder blades and sometimes my skin burns and vibrates, very weird. Does anyone get alot of Kidney Stones? I get them constantly lately, my dad has SCA6 as well as my 13 year old daughter, all confirmed. I get really fatigued as the day goes, sometimes just folding clothes or loading and unloading the dishwasher exhausts me, I have to take a nap everyday sometimes two. It is frustrating.
Hi,
I have progressive muscular atrophy diagnosed recently and the initial diagnose being C.A. I have muscle and joint pain. I am on homeopathic medication, Accupuncture. I use a heating pad every day and this gives me relief.
Hi Cher,
Looks like you have had a challenging time. I don’t know what episodic ataxia entails and whether anyone with the condition gets notice of an attack, but it must be a terrible condition to have, even more so in one so young. My daughter who is 27 has refused to have any tests (she panicked in the scanner) saying that she does not want to know as it will influence her life choices. She already suffers from Chrones disease, is a single mother and finds it a struggle without having Cerabella Ataxia, although she is showing signs of it.
When I read of other people’s symptoms on this site, I realize how lucky I am that I have reached 60 and my CA is not yet as progressed as some others. I hope all goes well for you and your daughter.
Lockie said:
Hi Cher,
Looks like you have had a challenging time. I don't know what episodic ataxia entails and whether anyone with the condition gets notice of an attack, but it must be a terrible condition to have, even more so in one so young. My daughter who is 27 has refused to have any tests (she panicked in the scanner) saying that she does not want to know as it will influence her life choices. She already suffers from Chrones disease, is a single mother and finds it a struggle without having Cerabella Ataxia, although she is showing signs of it.
When I read of other people's symptoms on this site, I realize how lucky I am that I have reached 60 and my CA is not yet as progressed as some others. I hope all goes well for you and your daughter.
Hi Cher,
Looks like you have had a challenging time. I don’t know what episodic ataxia entails and whether anyone with the condition gets notice of an attack, but it must be a terrible condition to have, even more so in one so young. My daughter who is 27 has refused to have any tests (she panicked in the scanner) saying that she does not want to know as it will influence her life choices. She already suffers from Chrones disease, is a single mother and finds it a struggle without having Cerabella Ataxia, although she is showing signs of it.
When I read of other people’s symptoms on this site, I realize how lucky I am that I have reached 60 and my CA is not yet as progressed as some others. I hope all goes well for you and your daughter.
Hi
My ataxia has not as yet been diagnosed. I have had it all my life. I wrote to Dr Greenfield a long time ago and she replied that to her knowledge there should not ba 'ataxia' pain, if you can see where I'm coming from.
However over the last 12 or so years I have experienced leg pain, severe at times. After expensive visits to chiropractioners, who labelled the pain as 'gait related' I came across a young, sympathetic, ataxia trained physio (on the NHS).He has thoroughly researched and observed my symptoms and yes, it is caused by change in gait, to compensate for lack of bbalance etc (the stiff-jointed walk we all know so well). He has given me excercises to strengthen my core. He said it will be a long process! He has also shown me how to fall - for example when you turn quickly and know you will hit the wall - how to bend your elbows which stops your head taking the impact.
My own GP is very sympathetic but unfortunately when I recently made an appointment and saw another GP (I'd bashed my knee once too often and thought there was cartilage floating around) he said 'arthritis' Excuse me!
I phoned the local Physio Dept and have an appointment with Marcus in a week's time!!
I hope this is useful. It is so impoortant to have someone fight in your corner
xx
S-J
Hi Sarah Jane,
It is just what my Physiotherapist at the local hospital told me. She hasn’t any Ataxia patients but has many MS patients that have Ataxia as part of their condition. I have been doing the core exercises for about sixth months, and even though I feel fitter the pains still cut through the painkillers especially after midday.
I know too well about the falling bit, I have hit the wall many times, luckily I have never hurt myself more than a few bruises. It is very interesting that you mention a correct way to fall, I will ask my physiotherapist to show me as I know that one day I won’t be so lucky. Thanks for the tip.
My neurologist has said that I have had Ataxia for a long time and it has just begun to be more evident, though it seems to be progressing at an alarming rate.
Anyway it’s great to compare notes. Take Care.