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Al fox

Active member
Joined
Aug 11, 2012
Messages
35
Reason
PALS
Diagnosis
06/2011
Country
Cad
State
Ontario
City
Toronto
My name is Alan Fox and I was diagnosed at the age of 39 with bulbar onset ALS. That was two years ago, at this point I still function at a pretty high level and continue to work from the office 3 to 4 times a week. My main issue is the severe pain I experience in the back of the neck when either seated or standing. The only relief I get is when I'm lying down. My neurologist has suggested asking 8 tylonol and 2 tremadol per day but it only dulls the pain slightly. Does any one have any practical advice for how I can better manage this pain.

Any suggestions will be appreciated.
 
Sorry the title was meant to read 41 years old, bulbar onset, severe pain, help!
 
Hi Alan
Sorry for your diagnosis but happy to hear that you are doing fairly well. Why does your neck hurt? Are the muscles weak so it is a strain to have it unsupported? Do you have a neck brace? Has your neuro suggested one?
Take care and welcome
Nikki
 
The neck pain is probably due to weak neck muscles,i know that if i have my head down too long when at computer or reading it makes my neck so tired and sore.
It sounds like you need a neck brace/support to lessen the strain......ask your doctor/pt or alsa about one.
 
Gone to mod land.........iyts probably due to weak neck muscles ,sounds like you need a neck brace/support.
 
Mod land twice....give me a break!
 
This is probably due to weak neck muscles, i get neck pain at the back if i have my head down too long when at computer or reading..
Sounds like you may now need a neck brace/support......ask your doctor/pt or alsa.
 
Hi! The human head is pretty heavy (8-12lbs)- facts from Jerry McGuire movie :) I would try to find out from the PT or OT at the ALS clinic what they would have to suggest. I had really bad neck pain cuz of bad posture at the computer due to muscle weakness (kinda repeating prev posts). I went to see a massage therapist and it helped a lot to release tension in upper back (btw...I'd be worried about stomach issues if taking tyl too long). Take care!
 
agreed... I would look into a neck brace...
 
Thanks for the suggestions. I do wear a neck brace when not sleeping, the pain is most certainly caused by the fact that my sternoclado mastoid muscles no longer really work that well(10 percent of what they oncE did). I've tried massage, accupunctute, hypnosis etc. and nothing yet has worked. I suppose the pain is something I will need to live with. It just seems like a bit of insult to injury.
 
A neck brace is nearly mandatory at this point.
Just an opinion.


NH
 
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