Issues

[Littlepopeye]

hi there can anyone tell me if they have issues with their neck with ataxia as painful to lift head or just pain around shoulders & the back of the neck, I had MSK today & are putting a collar to help raise the neck chin. She told me it was another stage of my ataxia but I don’t feel it’s correct. I feel as many people have Ataxia with experiencing conditions but at the same time are very knowledgeable I wonder if I could get advice with this please. I’m constantly asking questions but when you look on the web it’s just big fancy words. So I apologise for my questions but appreciate your response as they are so so helpful. Thank you

[SRUE]

I think it is a part of Ataxia and MSA too. My husband struggles with this and has been given exercises by the physio to help. He is a lot more conscious of his posture now, and regularly makes the effort to straighten up.

Alexa reminds him every hour to move.

[Littlepopeye in reply to SRUE]

Thank you for your reply, I find the exercise a bit difficult as pain over takes some times but I guess you got to keep going I suppose lol

[Ginger1]

I suffer from cerebellar ataxia which was diagnosed 20 yrs ago.

I also have pain & shaking in my neck. I went to my neurologist & subsequently had Botox injections. I have Cervical Dystonia which can be linked to Ataxia but can also be a separate issue.

I wore several collars.

MRI's to determine.

Speak with your neurologist.

It might not be Dystonia but it's better to get it checked out. Physio should give you neck exercises. I also found neck exercises on YouTube. Don't overdo them tho. Gd luck 🤔

[SRUE]

My husband does his exercises for about 5 mins at a time, several times a day. The physio really stressed not to do too much though.They're pretty much the standard neck/shoulder exercises, you can find them on YouTube.

He also does PMR (progressive muscle relaxation), he says both things really help him

Hope you find something to help you too. 🤞

[7151]

Hi dont be frightend of asking i dont personaly get pain in neck but yes in legs but thé more i learn thé more i réalisé its à mysterie

[Lidldidl]

hear hear Popeye. I too am very grateful for this advice, ongoing learning, compassion & encouragement we have access to so freely.

[Rezzy3]

After an assessment by my physiotherapist she noticed that the neck and shoulder pain in me was caused by the cautious style of walking because of the fear of falling. Most of us with neurological symptoms don’t have arm swing with our gait, and if we swing our arms we walk like stiff robots.

Ive been using a training method I found on YouTube the MS Gym. He teaches to BGB or Butts Guts Blades. Before you take a step squeeze the butt muscles, tighten your abs, and pull shoulder blades down into your back pockets. Focus on arm swing.

Give it a try. It helps with the neck pain.

[Littlepopeye in reply to Rezzy3]

Thank you for the information & advice… I’ve walking for years with my head to my chin, physio says that it was connected with the Ataxia. My biggest fear is falling because I’m on crutches so when I go or if I fall there’s nothing to stop me. But really don’t understand this ataxia as my balance & tremors seem to connect but my speech & my eyes are rarely affected. I debate to myself wither I do have this ataxia . But I do understand that everybody is individually different. So I’m not sure what I’m doing. I’d thought I could mention so I could get advice/help. Thank you for your reply it’s very appreciated.

[Spirit888]

Thank you for asking about this, as I have this also. Neck and across the shoulders. The replies here are very helpful and insightful.

Best wishes

[medea]

I have FA. Some years ago I had neck and shoulder pain - a chiropractor did something magical and I've had no problems since.