Sudden loss of limb function, arms

[LizF]

Hello, fellow pALS

I have limb onset which claimed my legs first, which took a year.
My arms just started to weaken last month. I feel pain, burning, fatigue, aching-nothing at all like it felt when my legs went. My legs just stopped working, no pain or discomfort at all.

I feel as though my arms will be useless very, very soon.

Anyone else lose limbs this way? Hearing similar stories would remind me I am not alone, and that's comforting.

xo

 

[KimT]

Can you still make a fist with both hands?

I experience lots of pain, burning, and fatigue. I'm not sure it's entirely the ALS because I've had neck and shoulder pain for years. Another thing is that every MRI I've had shows tendonitis and did before my diagnosis. My right elbow has hurt every day for six months but I can still make a tight fist with my right hand.

 

[LizF]

Hi Kim,

I can make fists still, yes. This is a good thing as I frequently shake them at people who don't appreciate what they have! (Okay, not really).
I am feeling most of it in my forearms. My shoulder hurts too, but I had a prior injury and am pretty sure that's what that part is.

I can also type quite quickly, as usual. But my ALS never showed distally, it started from my trunk and radiated out--can't use my legs, but my toes are still quite active.

 

[Kristina1]

I have bulbar onset, but weakness started in my hands at almost the same time. It has since spread up my arm. I don't get burning, but I get a deep, painful ache in 2 of my fingers that will last for hours or be near-continuous. It feels like the pain is in the bones themselves. I think it might be the bones rubbing against my other fingers without enough cushion due to muscle atrophy. Not sure if your pain might be something similar? Otherwise I do frequently get pain from accidentally straining my arm muscles. We use our arms to do a million things every day it is so easy to overdo it by accident. I do find with muscles in my forearm if I wear my wrist/arm brace I rarely strain those muscles (though I do still strain my biceps). The downside is it is kind of sweaty and uncomfortable to wear in the summer heat.

Sorry for your pain, I hope you get some relief.

 

[NothingButLove]

Wow... You and my wife seem to be in sync. She has limb onset. It started with a dropped right foot 1/2016. By 10/2016 she lost the right leg. The left leg began to go and she took her last steps 3/2017. She can't move her toes on either foot but she can kick out her left leg just a little. She experienced zero pain as both her legs stopped working.

Last month her right arm started to go. It is causing her terrible pain. Her pain is in her right triceps. If I accidentally lift her right arm too high it cause excruciating pain. I called the doctor about this. She suggested "range of motion" exercises. We have our "every four month" clinic visit this Tuesday. I'll ask the doctor about the pain in her arm and post the details. (is it normal? Besides range of motion, what can you do? drugs? etc.)

Take care LizF. My heart goes out to you and everyone else with ALS.

Rob

 

[KimT]

Heated pools seem to help with both range of motion and pain.....just don't overdo it. Medical cannabis helps with pain.

 

[LizF]

Thank you so much everyone. Rob, thoughts out to you and your wife. Range of motion exercises certainly do help; I haven't used any drugs except an occasion anti-inflammatory because I'd like to hold out on drugs til I feel I really, really need them. Thank you for sharing xo

 

[NothingButLove]

LizF,

We went to the clinic on Tuesday. The doctor said my wife's problem with her right arm is cause by contractures. The doctor recommended range of motion exercises and also prescribed baclofen. Baclofen is a muscle relaxer.

I Googled "muscle contracture als" and found this article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3482407/

The article seems to hit the nail on the head.

I'll let you know how the baclofen works. We'll continue to work on range of motion. Although, my wife hates doing this kind of stuff.

Take care!

Rob

 

[LizF]

Thanks Rob, really appreciate the article. ROM exercises are super helpful, so do make sure your wife does them She'll thank you for it later!