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