Status
Not open for further replies.

cutecousin

New member
Joined
Feb 8, 2009
Messages
5
Reason
PALS
Diagnosis
02/2002
Country
US
State
Illinois
City
Freeport
Another Painful Story

I am new to this site. Als from 2002 & I have had several horrible falls and finally tore my acl in my left knee. I am in constant pain. Here is the latest addition no padding on my butt anymore and it feels like I am sitting on my bone and nerves. Has anyone ever had this type of pain? Does that baclofen stuff work for this also? Please help me!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Boy if you've had ALS since 2002 and just recently lost your butt and started falling you are doing great. Baclofen won't do much for the butt but a gel cushion might help. Baclofen probably won't do much for the torn acl. Have you seen an Ortho for the knee? He should be able to help with the pain.
By the way, welcome to our site.

AL.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
I'm not taking anything outside of 2 ibuprofen at bedtime. Yesterday, I went to the store and bought some tonic water (with quinine). Good grief, its like drinking alka seltzer! Anyway, I suppose it had a bit (tiny bit) of an effect for a few nanoseconds.

I asked about drugs for my cramping and spasticity back in November with neuro #2 but I guess he thought I was faking all of this crap, the blithering idiot... He told me quinine and other drugs would probably bring on bad side-effects and wouldn't be worth it. Quack quack quack! I should just revert to calling him "Ducky".

I guess you can tell I didn't care for the guy...

Here's to whatever I may get down the road (I hear good things about morphine)!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Grass is better I hear. Did I hear somewhere Obama might lighten up the laws on it?

AL.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
I read that, too, Al, but can't remember where. With luck, it will happen.
 

ktmj

Distinguished member
Joined
Oct 17, 2008
Messages
421
Country
US
State
Dixie
City
Redneck
Would that be the smokin' variety or pill variety?:p
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Pill? Didn't know there was such a thing. Thought smoking was how it was used.

AL.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
I understand at the legal pot dispensaries in Calif. they have it in a variety of forms, from leaf, to brownies, to meds where all the fun stuff has been removed. About as much fun as 3.2 beer, if that's still around.
 

rick/Wpg

Distinguished member
Joined
Jan 4, 2008
Messages
149
Reason
Lost a loved one
Diagnosis
02/2008
Country
CA
State
Manitoba
City
Winnipeg
I find the quinine works great for me with the cramps as well....tried the tonic water but you'd have to drink gallons - mind you it is a good way to get your daily gin ration:)
re the grass- had one of my daughters ask me very seriously if I thought it would help me as they have a neighbor who is approved to grow it for medicinal use up here in Canada. Kind of funny - I spent their teen years worried that the kids would use it and now they are offering it to me -LOL Things do go around don't they?
 

cutecousin

New member
Joined
Feb 8, 2009
Messages
5
Reason
PALS
Diagnosis
02/2002
Country
US
State
Illinois
City
Freeport
Quinine yes..Pot no!

Quinine really does work, but it only works for me when I take it regularly. Smoking pot is a quick stress & pain reliever but in most parts of the countryit is illegal. I have thought about on more than one occasion too!
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Rick/ Cutecousin,

Do you take the over the counter 'legs cramps' quinine or prescription. Al has mentioned that he takes prescription quinine and it works for him.
 

rick/Wpg

Distinguished member
Joined
Jan 4, 2008
Messages
149
Reason
Lost a loved one
Diagnosis
02/2008
Country
CA
State
Manitoba
City
Winnipeg
Hi Sral
I get a prescription for it...200 mg capsules and take 1 each nite...they aren't too eexpensive here..100 for $35
Cutecousin is right...if I miss even a day of tking it I really feel it...went 2 days once and was very uncomfortable!
Seems from what I read on the forum it works better for some than others but well worth a try!
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Hi all, My mom used the quinine quite a bit, I think it really only works for the cramps and not the pains. She also drank tonic water, as this contains quinine. Her pains in her arms are much worse and they prescribed Ibuprofen, or difene. Not sure if you have these in the US, but lately these havent been doing the job either. The next step suggested by the neuro is patches. We will place the patch on her arm, and they slowly release a small amount of morphine into the nerves. This is extreme and I think only when the pain is bad. It is not like a dosage or injection of morphine, it is a very tiny dose, more like a painkiller. But it will relax the muscles in her arms. If she sleeps on her side for 5/6 hours she wakes up in a lot of pain and cant move the arm she has been lying on. This pain may not be quite as bad as yours, and so maybe the morphine patches are a bit extreme. But she definately needs them, We are hoping to get them this week, waiting for the doctor to prescribe them, so I will keep you updated.
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
MNDireland

Thanks for sharing your mom's experience.

How long has she had symptoms? Has it always been this bad?

My mom's neuro says that the main cause of my mom's pain is the spasticity and not the cramping. If we don't relax the muscles (as you mentioned the morphine is suppose to do for your mom) then the pain will not diminish. She is now trying zanaflex in conjuction with balcofen because her muscles are very hyper.
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Mum was diagnosed in October 07, and it started in her hands and arms. Before diagnosed she was taking painkillers for pains in her arms and shoulders, she thought it was just her age and from working, doctor told her it was arthritis, as it got worse and they sent her for an MRI scan they discovered she had no arthritis in her at all, couple of months and tests later, Als was diagnosed. The pains were not as bad, but the cramps in her arms and legs were bad, now 16months on the pains are really extreme and cramping is gone.
She used to have muscle spasms but they seem to have stopped in the arms and legs, I think the muscles have just weakened so much there. Her hands and feet are all off colour now, a kind of bluey grey colour, she says jokingly that her hands and feet are dead!

Waiting on the docs suggestion of patches etc, will let you know what they say
 
Status
Not open for further replies.
Top