Shoulder Pain...

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azwxman

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147
Reason
PALS
Diagnosis
06/2014
Country
US
State
az
City
tucson
...is killing me. I did a search of the forums and mostly read that pain is not ALS. I understand that ALS doesn't cause pain per se, but I'm surprised to find almost no one complaining of shoulder pain similar to mine, in my most affected right arm.
This is, quite literally, some of the worst pain I can recall in my life. Don't know what to do beyond Alleve and I just took those.
 
Sorry to hear. What we try to tell the DIHALS is that ALS does not start with pain. Unfortunately there can be significant pain later as a secondary problem which sounds like what you have.

Do you think you injured it trying to do something your arm could not handle? Are you transferred? If someone holds you under the arm pit during transfer that can injure you. If you don't remember anything it could be that because the muscles aren't supporting well. Try to figure out a way to support your arm when you are sitting. Consider using ice and or heat. If it is not so much the joint but the muscles from your neck maybe some massage. Call your doctor you should not have to live with pain
 
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Nikki: thanks for the response. I actually DID fall and land on my shoulder AND had someone help me stand using that arm. Ouch. But I'm pretty sure it started due to the muscle atrophy.
I was surprised at the lack of comments about others with similar pain.
Ice and heat coming up...
 
I also have some shoulder pain, but not as severe as yours.

My symptoms are predominantly clinical weakness in bilateral legs and left hand, but I do also have some left shoulder pain. I believe the muscles are not supporting the arm and therefore the arm feels like it is being tugged down out of the joint. I try to never let the arm just hang from the joint, but to rest it on a table or on a pillow when I am sitting. I sleep on my right side and keep my left arm somewhat elevated and supported on a pillow. These things help.

I have also noticed that sometimes I sit on the sofa with my left arm resting on the back of the sofa and this kind of hyperextends the shoulder joint. It helps open up the chest and the lungs and makes breathing easier, but does end up causing pain in the shoulder.

Hope you can figure out some way to relieve the problem.
 
It seems the Alleve has helped some. Ice, too.

I'm to the point where I MUST sit with my arm supported. Just that little bit of gravity feels as though my arm is being pulled off.
 
On a flight from Evansville in to Chicago I'll on my way to mayo in Minnesota for a second opinion I was dropped in the floor when two good sized guys tried to pick me up. I tried heat and ice my pain and muscle relaxer meds but my shoulder and left cheek are still killing me. I have therapy coming twice a week with tens unit and ultrasound to try and make it better.That might be option. This happened on 9\1\15 still haven't gotten a call back from the company about where to send bills. I flew american air but they subcontract that out and haven't heard anything so be careful if you fly and good luck with your pain.
 
My left shoulder hurt like anything. They did an MRI and found out that I had torn a rotator cuff, had bursitis, and tendonitis. I fell two years ago and my guess is that was when I tore my rotator cuff. I don't have as much muscle in that shoulder so I expect that's why the pain has gotten worse. The other day I closed the car door and sort of forgot to let go (don't ask.....) and I thought I pulled my shoulder out of the socket. I have a very hard time with meds so just took aspirin and tylenol with a muscle relaxant.
 
my shoulder pain is mostly moderate now that i stopped kayaking, snowboarding, etc, but when it flares up i take 800mil ibhurting (ibprophen) and lay off it if possible. good luck, pain suks, love ya chally
 
I had a bout of shoulder pain a couple of weeks ago. Left side, restricted range of motion, decidedly weaker. Discovered that having ALS doesn't mean you can't sleep on something funny. Just took a while to get it back to normal. Not everything is ALS.
Vincent
 
Nikki makes the good point that PALS should not be picked up at the armpit as normal people can be. And PALS need lower arm support for the reason that Dusty points out. One ALS variant (flail arm) is particularly prone to shoulder subluxation, but others can easily have that happen whether mishandled or not due to muscle atrophy and thus lack of muscle to hold the joint in place. Once the shoulder is out, it is not generally going to go back in.
 
Azwxman good on you for mentioning shoulder pain. It does seem to be a problem.
I get a lot of shoulder pain when I try to use my arm too much.

I'm glad that this thread is here. We are travelling shortly and I've decided to buy a cushion to support my arm. Gravity definitely sucks!
God bless, Janelle x
 
Tim has had several bouts of shoulder pain, especially on the side he dislocated years earlier. As the muscles waste the joints become lax and prone to strain and subluxation. I have had to be extremely diligent in making sure anyone that is helping with Tim does NOT use his arms for position changes. We have an excellent physiotherapist that uses a fairly new taping technique on his shoulder if is too bad. He keeps the tape on until he sees her the next week, and then I remove it in the shower that a.m. It is removing the tape that is the hardest on his skin. I use a body pillow and lay it across his chest and place both arms on it, pulling each end around and under his arm pits. He says that that gives him the best relief.
He went through pain in just about every joint at one point or another, but they seemed to get accustomed to the laxness and settled down. I have learned the best way to move him and never use any limb to pull on. When he is on the toilet he is suspended by his sling with his arms resting on each leg out side of the sling, and an adjustable padded bar stool is in front of him to rest his head on. He says that he loves that position, and if his feet didn't swell would sit like for longer.

Paulette
 
Wow! Thanks for all the responses! As I was reading I suddenly remembered that I had a friend help me stand a week ago and he grabbed me under the arm. I tried not to yell at the pain but that definitely hurt. Good thing he fed me several Seven and Sevens after that. ;)

So I'll definitely keep taking the Alleve and be very careful to support my arms to keep them from hanging (damn gravity!).

Again, thanks for the comments!
 
Chris suffered awful shoulder pain as the muscles wasted.

We did a lot of massage and ROM which gave great relief but only for a while of course and as he progressed the shoulders worsened.

Then his first serious fall onto his good shoulder ruptured the tendons so the pain was always there.

We also used a Norwex aloe vera gel and a magnesium gel which helped when doing massage.
Heat packs helped too.

It's cruel, and no it's not a primary ALS symptom, it's a secondary result of what the ALS has done.

It seems to me that spasticity is a part of it too. I've noticed that PALS that don't experience a lot of spasticity have very limp muscles and they are very pliable. PALS with spasticity experience the frozen joints because of the tension in the muscles.

I've known a lot of PALS to have their shoulders damaged by people trying to help them by pulling on their arms. I always had to keep a close on eye on anyone doing anything for Chris, especially in a hospital setting and have big signs on the walls - do not use his arms to assist or reposition him. I also had to be around all the time to then tell the staff the same thing. The muscles are so damaged and frail due to the wastage, damage is done with very little pulling on the arms.

I do have video if you search massage of how I used to work on Chris's arms.
It won't 'fix' the problem but it will give some relief and any movement of the limbs is good for circulation as well.
 
ACESJR68, you could write to Christy Garden, DOT Liaison, Customer Relations, American Airlines/US Airways.


According to CFR 14 Part 382, carriers must train employees with respect to awareness and appropriate responses to passengers with a disability.


Plus, see the Dept of Transportation page at http://airconsumer.ost.dot.gov/publications/telljudge.htm
 
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