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sral

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I'm so tired of researching pain for my mom's PLS condition and getting the type of definitions as below

"Primary lateral sclerosis (PLS) is a rare, neuromuscular disorder that affects the central motor neurons and is characterized by painless but progressive weakness and stiffness of the muscles of the legs."

How can it be that PLS is painless when so many people including many on this forum complain of pain?

My mom's pain continues and no one has been able to help. I don't know what to try anymore.
 

brendapals

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hey sral,
My heart goes out to you. My best advice would be to make an appt with your mom's dr, go with her, and discuss options for pain control. There have been many advances over the last few years, surely the dr would be compassionate enough to try something.
Without going back and reading a lot of posts, is your mom still up and walking? If not, repositioning her with pillows, rolled up blankets, etc might help. Also, if you know anyone who does home massage therapy, if not, maybe one of the home massagers that you can put around her neck, or in a chair, or for feet, I'm just trying to think off the top of my head.
No one should have to be in pain,
-b
 

sral

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Hi Brenda,

Thanks so much for your suggestions. We've been to numerous specialists regarding her pain and there has been no relief so far. The only thing she's received is balcofen and celebrex (for arthritis). There has never been mention of any pain reliever except tylenol. It's awful. We've travelled even out of our city.

Yes my mom is still mobile. She wall/furniture walks. Her pain is mainly in her legs and most recently started shooting up her back as well.

Thanks again for your advice.

I did more research on PLS symptoms and found websites that indicated pain. All the ones that mentioned pain were set up by PLSers/HSPers. Only the patient understands!
 

brendapals

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ok, thanks for the info-
What about going to a pain specialist? I don't know if that option is available to her. Also, maybe ask the dr who gave her the Celebrex if he has any pain patches-like some samples she could try?

Can you tell,
I'm still grasping-

But I know how hard it must be watching your mom in pain, just please know you and your mom will be in my prayers,
take good care,
-b
 

Rodstew

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DX UMND/PLS
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12/2008
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sral

Hi. As I mentioned in my other post I too have severe pain. Mainly in my legs.
I know exactly how your mother feels. It is really frustrating to try to explain it to a Dr and not feel like a junkie asking for pain pills.

I take baclofen and it helps but does not stop the pain. I have tried Ultram, Etodolac and Lortab. None work for me. My Dr prescribed Percocet 10/650 and it helps to some extent. It makes the pain bearable but only relieves about 75%.

Your mom needs to tell her Dr he has to give her something for the breakthrough pain that the other meds do not help. The dr will probably start out with something mild and if that does not work he will give her a stronger med.

Tell her not to worry about addiction as studies have shown that people with chronic pain who take them as described do not get addicted.

Hope this helps and tell your mom she will be in my prayers.
 

sral

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thanks Brenda and Rodstew.
 

Peg B

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PALS
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Hi,

I have probable MMN (was DX with ALS) and take Vicodin for pain. I have leg pain and sometimes takes 1/2 Vicodin in the day time and can function quite well. I also take one everynight with two benedryl (or store brand). I have no trouble getting it from any doctor, GP, neurologist, orthopedic surgeon (just had rotator cusp surgery) but my husband who goes to a pain clinic for back pain and had prostate cancer surgery last year is given a hard time everytime he asks for it. I get 60 day 4X a day scripts with up to 3 refils and he cannot get a 30 day supply without begging. We have the same gp. Go figure. Hope you can try Vicodine. Sincerely, Peg
 

sral

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