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ECpara

Senior member
Joined
Jan 7, 2012
Messages
605
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
GA
City
Thomasville
My husband has Bulbar Onset ALS, diagnosed in early February this year. So far he has no limb involvement as far as muscle use is concerned. He still does yardwork and golfs. He does have twitching in his arms, hands and legs although not as much as before. He's experiencing what he describes as joint pain in his arm and now in his foot. We have heard that there is no pain with ALS, could this be from over use of muscles that are apparently atrophying? We don't "see" any difference in his muscles, does atrophying present itself this way in the beginning? How much time is there between twitching stopping and loss of use of limbs? He won't come on this forum, I think he prefers not to see what is going to happen but he does ask me to ask the questions for him. Thanks if anyone can give us some insight!
 
No pain with ALS is a myth. My husband experiences significant pain in his ankles and heels, especially at night. It eases with ROM exercises which I do a few times each night. When I transfer him into his bed from the sling, his back spasms badly and there is a lot of pain.
 
ALS does cause pain. For my husband it is extreme. We believe the reason for his severe pain is he overused his muscles for a yr and a half before we knew he had ALS. He worked a very strenuous job
 
I had a lot of leg pain and cramping before I had footdrop which was the first indicator of my ALS. It might be his muscles being impacted from nerve damage. I use magnet wraps to help with the pain, but my legs dont hurt anymore... just blue feet...
 
Thank you all for clarifying. My husband is in a lot of pain. Extreme Pain. Bring you to your needs in a blink kind of pain. It has moved to his diaphragm and we thought he was having another heart attack.
 
That's way too much pain. I'd be going to see a doctor.

AL.
 
I agree. There is pain, but not the type you describe, themommy- not this early on.
Also, to the original poster... your question about how long before the twitching stops and paralysis sets in? Thats difficult to answer as everyone is different. My PALS was paralyzed from head to toe for many years and he still twitched in alot of his muscles. Especially when he didnt take his baclofen. Its actually sort of a good thing that there is twitching, it means the muscle isnt completly dead.
 
I agree with Al and Liz. He needs to be seen by a doc tor.

Good luck and let us know how he's doing.
 
Just wondering what your dr,prescribed for pain.Ron has had extreme pain sice before he was diagonsed and they wont adress it.we have tried all the over the counter meds,muscle ceam.i am contantly massaing hes neck,arm,shoilder and now after a bout of severe twitching i rub everywherw.
 
My husband takes hydromorphone. Some people get relief from gabapentin if it is nerve pain
 
I had been on mor phine by IV. Now I'm on oxy con tin. Just barely takes the edge off. And as long as I'm not moved, I'm okay. Once they move me, the pain is unbearable. The doc tor said the oxy is the lesser of 2 evils.
 
My husband has Bulbar Onset ALS, diagnosed in early I have to lie on my right side every night, and m t right arm gets very sore, also every morning I am, wakened by leg cramps, and sitting on an evening, my internal organs on my right side below my ribs are incredibly painful
 
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