I thought there was no pain

[patrick123]

I take baclefin for the cramps

 

[BK2011]

I have found tonic water works but it takes a lot of it in my case to be effective. FDA doesn't recommend quinine for anything but malaria so you can't get it in pill form for cramps. Tonic water has a minute amount of quinine so if you drink enough of it, it helps. I was having cramps in my feet and calves multiple time per night. Then the cramps started in my upper leg, the vastus medialis and sartorius, and these were bigger muscles and amazingly painful.
Started the tonic water and worked up to a liter per day before the cramps subsided. The tonic water tastes lousy and the carbonation bloats you up but it stopped the cramps so was worth it. Started cutting back to see if I could reduce the intake and still control the cramps. Now I'm drinking 16-32 oz daily and the cramps are generally under control unless I get more exercise than usual. Unfortunately the cramps now also occur in my hands, back, ribs, and neck. Most I can stop by flexing the muscle but I still haven't found a way to stop the upper leg muscle cramps, I just live with them until the muscle tires out and the cramp goes away.

BK

 

[Atsugi]

Mike, for my husband, als isnt pain free.

My PALS Krissy also has very painful bouts after she was paralyzed. Sitting in the wheelchair for too long was especially painful.

My point is that I want to make sure we agree on what to tell DIHALS, because I don't want to give out bad information.

My understanding is that pain is not a beginning symptom that a doctor would use to describe ALS. Pain happens after a patient has been paralyzed awhile.

 

[slopokahontas]

I don't want to mislead anyone either. However, I thought I couldn't possibly have ALS because my legs hurt so bad and assumed I just needed to eat better! They feel like I could get a Charlie horse any second and randomly cramp up or as if I ran a marathon and they could just give out. So, it actually gets worse after paralysis?

 

[Music67]

As for fasciculations I have often been able to slow them down or stop them all together by applying cocoanut oil to the affected areas. Try it.

 

[Atsugi]

So, it actually gets worse after paralysis?

I don't think there is any more pain headed your way. I think, in my limited experience, that you've already got the pain that most people get later. Again, I don't know very much, as I've got no experience as an actual PALS.

 

[dalvin]

I'm thinking a lot of the confusion about pain stems from the fact that many of us have been taught to ignore pain and never show it. Add to that some of us realize what this is doing to the CALS and don't want to add to their burden. When I was growing up I was taught to never show or admit to pain, period. It was considered a sign of weakness and showing it meant getting your back side beat. There was also the fact that if you showed pain your peers would make fun of you and degrade you. Not saying this was true for everyone but was where I grew up.

 

[Dusty7]

Mike said: "My point is that I want to make sure we agree on what to tell DIHALS, because I don't want to give out bad information."
Agreed and there are more than enough DIHALS already.

Mike said: "My understanding is that pain is not a beginning symptom that a doctor would use to describe ALS. Pain happens after a patient has been paralyzed awhile."
That is my understanding and my experience also except that pain can appear before a patient is paralyzed, but in those cases it is what I would call "secondary" to some other feature of ALS, like a cramp. Tillie describes the cramp process in ALS very well, but we all know you can have cramps and pain from those cramps without having ALS. The pain is caused by the cramp, not by the ALS. You can also have pain from falling on your face. But the pain in that case is caused by the face-to-pavement impact, not by the foot drop that was caused by ALS. There, obviously, is a linkage, but it is a secondary or tertiary relationship.

ALS symptoms are those directly caused by ALS, like denervation, hyperreflexia, etc.

I believe what we have been telling DIHALS is correct. Pain is not a useful diagnostic symptom, but to say there is no pain in ALS is not 100% correct. Pain from secondary and tertiary causes can happen and, in fact, can happen more to us than to non-PALS. My bilateral foot drop does not cause me any pain... until I get careless and trip and fall.

 

[bigmark1954]

So... I think pain is a secondary condition, occurring only after ALS symptoms have manifested.

 

[Barbie]

cramps are a symptom of ALS, and pain can result from cramps, so secondary condition is a good way to classify it.

 

[MaxEidswick]

the top of my useless left hand starts to ache around noon, the starts to throb asround 4, then 1st dose of pinot ....

 

[slopokahontas]

I know how you could stop them from posting......just tell them...."sounds like syphilis to me"! Then they will look that up and run to the doc!

 

[nebrhahe53]

How about sounds like Ebola. Bet they'd never come back again

 

[skipper66]

Glad to see a post on this. I was confused about the pain thing too. When dad was first diagnosed we heard there would be no pain too. Then he had cramps and stuff and we didn't know what too think.

 

[Barbie]

Syphilis, Ebola, too funny! unfortunately then they will ask questions about that. better just ignore!