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ccox

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Good morning all,
My mom is in the beginning stages of ALS (official diagnosed in June). She said she watched a DVD last night given to her by the ALS clinic and was worried because she found out there would be pain. She thought that if the muscles no longer worked, that the nerves would no longer work as well.
What causes the pain? Is it inactivity of the muscles? What can be done about it?--Massage, therapy, pain meds?
I must say that I think it put a dent in her "I can deal with this" armor.
I only knew of the pain because of a blog that I read. Often, the gentleman's pain is because his caregivers have no idea they are overextending an area of his body, or because he has laid on one position too long.
Thanks for your reply.
Carla
 

patricia1

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I am sorry about your mom I have AlS for 8 years and there is pain With cramping Its like a Charlie horse very painful Its not all day But if I stretch or reach or move a certainway I get horrible pain It doesnt last thank god but there is pain. If I yawn I get a lump under my chin which also is painful. Toe cramping thats the worse. SO yes there is pain.Pat
 

Sammantha

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I get pain with stiffness, in my joints especially shoulders... But if you rotate them and use them they will "unwind." When i was told to do this excersize to relieve joint pain i thought the doc was nuts, i did not want to move my shoulder...but you know what, it worked..... even better than painkillers...... The other pain i get is during the night when i sleep on my sides, the pressure from my bones and everything causes pain. If i have to do heavy work my muscles retaliate by stiffening up and aching. The pain is not as bad as someone who has cancer or torn ligaments, or broken back....... A physical therapist and light painkiller or aspirin can help your mom a great deal, just make sure she stays in motion. Good luck!
 

rcharlton

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Carla,

The progressionn of ALS does not itself cause pain - but pain is often an indirect symptom cause by the changes to the body resulting from muscle atrophy.

Every ALS case is different. No one PALs will experience the same symptoms as another PALS. Some PALS live for decades - others live only for months.

Some experience constant pain while others experience little or infrequent pain.

It's impossible to say the extent to which your mother will suffer pain - she should expect the occassional cramping now and then at the least - but these episodes can be reduced by medication.

Good luck - and it is amazing what the body can adapt to.

Richard
 

shannonme

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Richard-

What medications do you use for pain? My mom describes excrutiating leg pain during the night. She takes 1/2 Baclofen and 1/2 Vicodin...but that's not cutting it. Should she take whole pills or something else?

Thnx,
Shannon
 

paula-jane

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My mum is on 4 baclofen.. her leg cramps last up to 2 hours a day in one leg.. sometimes we have to watch her go through that with both days.. it is very painful.. and she always makes us open up the doors for air because she works up a sweat dealing with them.
 

MaryMcK

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I'm up to 1800mg of gabapentin and 30 mg baclofen...and am finally getting some relief from the terrible cramps in my legs. Hope they keep working!
 

rcharlton

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shannonme said:
Richard-

What medications do you use for pain? My mom describes excrutiating leg pain during the night. She takes 1/2 Baclofen and 1/2 Vicodin...but that's not cutting it. Should she take whole pills or something else?

Thnx,
Shannon

Hi Shannon,

I'm not taking anything for pain. I get some pretty nasty neck and jaw cramps - but they go away if I stay immobile.

Your mom should talk to her doctor about her medication.

All the best.

Richard
 

Al

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I take 1 Baclofen in the morning and 1 at night plus 300mg Quinine and are cramp free 99.9% of the time.
AL.
 
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