[B]Pain Associated With ALS?[/B]

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GWB

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I would like to know what kind of pain is associated with ALS? I suppose ALS itself does not cause pain, but by losing muscles the body begins to experience pain from lack of muscle tissue, correct or not? Maybe I am not communicating this right, but the bottom line question is, do people experience pain with ALS, and if so, what kind of pain, and what causes it?

Thanks!
 

GWB

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Sorry for error in title

I'm still learning the ropes here and noticed I messed up in the title. I tried to make it bold but apparently failed to do so. Sorry about that!

GWB
 

quadbliss

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Hi GWB,

Many people experience muscle pain, mostly from cramping and spasms. There are many others however, who never experience pain.

Mike
 

AlmasDaddy

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Hi GWB
I would like to help you with this question, as it relates directly to the pain which I have experienced. In the early stages of the disease, specific body parts like my hands, would cramp up while using them and this would be a very painful. Example; while squeezing a wrench while applying torque to it my hand and fingers would cramp, when yawning, my jaw and neck would cramp, when extending my feet to get up on my tippy toes, my feet and toes would cramp. 350 mg of quinine sulfate twice daily took care of the cramping. At bedtime my legs would feel like they had pins and needles in them, I was told by my neurologist that this was called nerve pain, he wanted to give me something for it but I just took ibuprofen 800 mg for it. I don't know if it really helped, but I do feel that it relaxed me enough to get through it. As the pins and needles increased I did finally take them up on their offer of medication, amitriptyline, or something like that, I take 30 mg at bedtime, it dulls the pain and allows me to sleep. The muscle pain that I experience can be associated with a pulled muscle, as the nerves die and you lose the use of the muscles that you use every day, the other muscles are forced to take up the slack and therefore become overworked, sore, fatigue and strained. Ibuprofen seems to help the muscle pain. As the muscles go away and I become less mobile the pain that is recently plaguing me is associated with the stiffness that comes from the lack of use, range of motion exercises are what I am working on now to combat this. And the last pain that comes from falling, :-D to combat this I try not to fall. 6'3 and 220 pounds comes down with a bang, usually my head banging something. Good thing I have a rock head. As the disease progresses I would recommend that you get on an e-mailing basis with your general health practitioner and your ALS clinic neurologist. Between the two of them you should be able to nip it in the butt, sort of speak. My best to you and your family, Michael
 

GWB

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quadbliss said:
Hi GWB,

Many people experience muscle pain, mostly from cramping and spasms. There are many others however, who never experience pain.

Mike

Thanks Mike. That's what I experience as well. The past few months it's been getting worse, especially in my neck. BTW, you are a very talented person and I really love your art work!
 

GWB

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AlmasDaddy said:
Hi GWB
I would like to help you with this question, as it relates directly to the pain which I have experienced. In the early stages of the disease, specific body parts like my hands, would cramp up while using them and this would be a very painful. Example; while squeezing a wrench while applying torque to it my hand and fingers would cramp, when yawning, my jaw and neck would cramp, when extending my feet to get up on my tippy toes, my feet and toes would cramp. 350 mg of quinine sulfate twice daily took care of the cramping. At bedtime my legs would feel like they had pins and needles in them, I was told by my neurologist that this was called nerve pain, he wanted to give me something for it but I just took ibuprofen 800 mg for it. I don't know if it really helped, but I do feel that it relaxed me enough to get through it. As the pins and needles increased I did finally take them up on their offer of medication, amitriptyline, or something like that, I take 30 mg at bedtime, it dulls the pain and allows me to sleep. The muscle pain that I experience can be associated with a pulled muscle, as the nerves die and you lose the use of the muscles that you use every day, the other muscles are forced to take up the slack and therefore become overworked, sore, fatigue and strained. Ibuprofen seems to help the muscle pain. As the muscles go away and I become less mobile the pain that is recently plaguing me is associated with the stiffness that comes from the lack of use, range of motion exercises are what I am working on now to combat this. And the last pain that comes from falling, :-D to combat this I try not to fall. 6'3 and 220 pounds comes down with a bang, usually my head banging something. Good thing I have a rock head. As the disease progresses I would recommend that you get on an e-mailing basis with your general health practitioner and your ALS clinic neurologist. Between the two of them you should be able to nip it in the butt, sort of speak. My best to you and your family, Michael

Thanks Michael. Your symptoms are exactly what I have been experiencing. The one that bothers me most, or should I say scares me most, is when my neck cramps up. The cramps get so bad at times I feel like I'm choking. I don't dare extend my feet or bend them if I can avoid it because everytime I do a cramp comes on. Thanks for your input and advice, I appreciate it!
 

CindyM

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My cramps are mild compared to some. I do get rip-roaring stiff necks but I believe these come from weak back muscles so my shoulder muscles try to compensate. Wearing a garden-variety back brace such as the type sold in any drugstore solves the problem.

Hand cramps are something that I figure I just have to put up with. Every activity I like involves using the small hand muscles and at the end of the day they scream. Also, walking more than a few feet makes by legs sore like the shin splints I used to get if I ran too much or ran in poor athletic shoes. And standing long enough to cook dinner makes me feet sore as if I was on them all day in ill-fitting shoes. But it is only soreness so I just ignore it.
 
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