Neck pain

[Jessie70]

Good morning. I have cerebellum ataxia, cause unknown. I have the same symptoms I see posted often but I’m curious if anyone suffers from severe neck pain? I’ve tried everything to alleviate the pain, sleeping flat on my back (no pillow), targeted massage, lidocaine patches, etc. while the various “treatments” alleviate the pain for a short period of time I still wake up with raging pain at the base of my neck. Obviously it spreads down my back and arms all the way to my big toe I think if I could stop the pain b/4 it starts I might be able to stop it at my neck. Any suggestions? Also, why is ataxia such a pain in the neck, literally? Thank you for any feedback. Have a great weekend!

[Hidden]

Hi Jessie

Having done several first aid courses I feel as if am in a position to answer Lol.

Do you think it might be nerve pain as I get it running from the base of my spine and down my right leg the Neurologist prescribed Pegabalin which has worked for me.

Take Care my friend.

[Jessie70]

Thank you for your reply. I take Gabapentin for nerve pain. 100 mg 3x a day. I’m happy with that script. It put out the fire in my feet. I used to be a runner b/4 my disease took over my body. Having that 30+ years experience as a runner I feel like it’s my neck muscles. I just cannot figure it out. Btw I find more answers here. You’re overqualified. 😜

[HarryB Administrator]

Hi Jessie

I am having dreadful problems with my neck and shoulders at the moment. I think it is a combination of shoulder impingement and problems with my neck. It is a chronic problem but have had a spectacular flare up for the past few months. Overnight is definitely the worst time. Out of desperation I bought an orthopaedic pillow, a ‘Kuddle’ from Amazon. I don’t have a completely pain free night but it has definitely helped.

Best wishes

Harriet

[Jessie70]

Thank you for your reply. I’m desperate. Ordering now. 👍

[ddmagee1]

I have been diagnosed with cerebellar Ataxia, resulting from a blood vessel that is attached, somehow, and pressing into my cerebellum. One of my biggest problems is pain in the back of my neck, and severe headaches, in the lower back/ center, of my head. I take headache medicine, that helps sometimes. I’ve also been diagnosed with Parkinson’s, so I take Sinemet, for that. I use muscle relaxing exercises, like moving my head and shoulders around, slowly. Sometimes, that helps, but not always. My pain does not spread down my back or arms. Just wondering, have you ever had a neurosurgeon, or orthopaedic specialist, check your upper spinal/cervical area, to see if there might be any impingement on neural pathways, causing pain to radiate down, from neck, to back and arms? I would encourage medical re-evaluation of your symptoms, by a professional Doctor/Specialist.

[Jessie70 in reply to ddmagee1]

I’m on my 5th neurologist. I don’t play well with others. I see my pain specialist monthly as my condition is unknown it’s tough dealing with neurologists. I’m just a curiosity to them and I know that there is no cure. I take gabapentin for nerve pain. I’m happy with that script as my feet are no longer on fire. Thank you for your reply and I will definitely follow up with my pain specialist. Enjoy your Sunday!

[ddmagee1 in reply to Jessie70]

Thank you for your kind reply! I understand about the neurologists. I’ve had my fair share of tough dealing. Hopefully, your pain specialist will be able to help you!

[Barry25]

Good afternoon Jessie70

I to have cerebellum ataxia, cause unknown, like you I also get serouse neck pain usually when I'm tired . I find having a shower with the water as hot as you can stand for a good ten minutes, if that doesn't work I hold my head up (looking at the ceiling, although this is hard and causes more problems but that's another story) WhenI go to bed I lay flat (without pillow and I get a good nights sleep and wake with no neck pain. Everybody is different I'm afraid its all trail and error.

good luck!!!

[Ataxia17]

I have been having the same issue! I was thinking it was my posture. Also doing yoga stretches. It helps a little.

[Jessie70]

Thank you all for your replies. I’ve said it b/4 but it’s worth repeating. This forum is my greatest resource! 💞

[penelope2]

Hi Jessie70. I have been diagnosed with cerebellar ataxia too. Just at start of this long and awful journey.

For over 20 years I had chronic migraines and suffered with IBS all my life. I think that there is a connection and it's the bodys way of saying there is something underlying wrong. Unfortunately the NHS do not look at a person holistically!!

High dose supplements have helped me with inflammation in the body also meditation and yoga. These over time do help with letti g go of tension and so pain. My experience is doctor's, physio s etc have offered little help and am finding that neurologists are of the same vein. Try and.keep positive

Do your own research and an open mind helps. I have.not yet come across an NHS professional to look at the patient as a "whole".

Perhaps they are missing something!!!!

Sorry for the long rant.

Take care and be kind to yourself.

[february]

Dear Jessie70, I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) 20+ years ago. Over the years I had dominant and recessive genetic testing for the more common ataxia's, which was always negative. In 2017 I had genetic exome testing, then a skin biopsy followed by a blood test and found out my ataxia is due to Niemann Pick C (NPC) disease! Anyway, over the years my ataxia has progressed and my posture is effected. I have neck pain and do stretches every day, which really helps me! I also find if I look up several times while sitting, gives me some relief, as I use a rollator to walk and am always looking down at my feet (poor posture/tight muscles)! My best to you..., ;o)

[peakerhome]

Yes, Ataxia is a pain in the neck, though luckily I don’t get any pain just yet. I find mobility/balance and communication( speech and writing) my biggest challenge, especially living alone.

So I at least get a good nights sleep, which is invaluable as I am always fatigued. I have found my local hospice day centre ‘well being’ team to be very helpful in pain management, and in chasing up referrals etc. but there is no magic bullet. Every ‘patient’ is different so I guess you have to go with what works for you.

[peakerhome]

It sounds to me as if your pain relates to a nerve rather than Ataxia. But your Ataxia might lead to muscle weakness, which might make you prone to nerve pain.

I am lucky in that I don’t yet have pain with my Cerebellar Ataxia. I bought a memory foam neck pillow from Amazon and sleep well. It’s very comfortable. I do have some osteoarthritis which can be painful but is not related to Ataxia.

Pain Management is a big thing now and your local hospice day centre health and well being team can help. You don’t need to have a terminal illness!

But treat the cause not the symptom!

Physios/Chiropractors should help.

Stretching and muscle strengthening exercises are good.

Judy