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timesup

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Just a question that im not sure has been defined -- or has it?
is there pain associated with ALS ?
early on in the disease as the muscles die and the other muscles try to make up for the ones that are dying?
Later on in the disease as muscles cramp etc..?
or does it depend on where it starts in a person's body?
like in the foot? or the leg? or the hip? or the shoulder?
if you have an opinion or know from your experience would you please post your response.
thank you in advance for taking the time to answer--
 
yes, there is pain... early on with me, my legs were in spasms... like charliehorses. The muscles were probably dying off before I realized what was going on. Now the pain is more related to lack of muscle that cushions your legs, so you feel it more. I'm not as far progressed as others, so I'm sure others can add to this.
 
Helen's so right. I, too started with the spasms so bad that my toes and feet are now in a permanent contracture. These are relentless. I am upper motor where Helen is lower. Good luck to you.
 
Yes, there is pain from the cramping. I have also pain in arms & shoulder as they are so over worked and getting weaker. I had a wise man that was here helping people for so long Joel C tell me to worry when the cramping stopped which meant no more muscle. I no longer have them in my left leg as it is totally paralized and my right all I can move is my big toe. Hips torso and arms and hands still get some, more like contractue/spasms I have to pry them out of position to get releif. Thats just my story we all are different.Hope this helps you.
 
My husband has severe pain. He was working a very physicsl job when his ALS started, and he did a lot of damage to his muscles in his back. Some folks have very little pain
 
Still learning here and not fully diagnosed yet but, I definitely have pain from the cramping and just the general weakness in my legs. A bit of a unique case, as we all really are, but since I've had my hips replaced thats where most of my pain is. Replaced hips + weakening legs = pain for me.
 
I have pain - spasms. hands, feet, calf muscles. Last few days - big spasms in my upper back - which took my breath away. They don't last too long - thank goodness. But the remains of them stays - hard to explain - but it's like bruise maybe on the inside - tender, but not painful.
 
part of the danger is hurting the remaining muscles that are trying too hard to make up for the rest of them. Ann and others warned me to not push myself too hard to, for example, to keep walking, as you can permanently hurt your knees. That was her experience. It's hard to know when to accept the issues, and move onto the next level of aid.
 
Also, if I barely touch my husband it causes severe pain. He says I have "Man Hands" I am gentle, but he just has no cushioning left, so even a gentle touch causes pain.
 
So far I have had no pain, my muscle use to twitch some but never hurt I believe it's because I take 2cc of vitamin B-12 ever week I also take 1cc of B complex twice a week.
 
I've had some pain from muscle cramping, Gabapentin helps me with this.
I've also had some tendonitis and joint pain from movement in those limbs that have lost muscle that helps to support the joint. Ice and some topical voltaren cream help. When moving about make sure that the affected joints are well supported. A soft knee brace helped me.
It's imperative to have ROM and stretching done daily to help avoid some of this pain. PT can show you hake to perform these excercises safely. MDA ALS Division puts out an excellent Caregivers' Guide. You can also find some good videos demonstrating these on you tube.
 
Thank you everyone for taking the time to try and shed some light on a question that i have not fully understood- it looks to be that the only answer maybe is that ALS effects each person differently-
With the discussion above - are the answers to the question - once a person is diagnosed or is it more as from the beginning of symptoms before diagnosis? Not trying to pry- just trying to understand the progression
thank you again
 
My husbands pain has increased a lot in the 3 yrs since his D X He has degenerative Disc Disease so this is the main reason for his pain. As far as the sensitivity to touch, it has also increased as he loses muscle.
 
Sadiemae, does your husband take anything for pain? I read somewhere that opiates aren't good since they sometimes cause respiratory problems.
 
Yes, and we have had no problems. He takes Hydromorphone 4 mg 4 times a day, and morphine sulfate 15mg as needed, up to 3 a day.
 
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