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Shawnlee

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Joined
Feb 17, 2016
Messages
33
Reason
Loved one DX
Diagnosis
09/2015
Country
US
State
Colorado
City
Holly
It’s been 3 1/2 years since my husband was diagnosed with ALS recently he is in terrible pain due to his shoulder dislocation or I should say shoulders. Has anyone else had this happen to them my husband has been diagnosed with a very slow progressive form of ALS but is this going to keep happening to all his joints including knees hips ankles wrists you name it he’s pretty much is incapable of using his left side but just curious how much more he has to endure. I ask him what I can do to help and his answer is a bullet. He hurts everywhere his back his neck his shoulders you name it he hurts does anyone have any suggestions what I can do to help him. Thanks for any suggestions in advance
 
I'm sorry that your husband is in pain, Shawnlee.

Subluxated shoulders, if that is what you mean, can be helped by reconstituting the joint while doing exercises such as bending the arm at the elbow to keep the other parts of the arm flexible. Essentially, this is holding and guiding the shoulder back toward the spine, which doesn't erase the subluxation but minimizes it as much as possible.

A PT (your doctor can write an order for one to come to your home if your husband finds it difficult to get out) can show you; make sure you get one who knows about ALS and subluxation. Always padding the elbow and forearm so they are not put under pressure, and of course, never doing anything with the arms that pulls the shoulder the other way, is good as well. You have to watch everyone from aides to lab techs, as there seems to be a habit of pulling patients' arms forward.

I also recommend a low voltage heated mattress pad at night, and range of motion exercises (always holding the shoulder, elbow, wrist, knee, ankle, that is being moved, with one hand) and gentle massage in the morning especially. Again, a PT can help design a routine that you can perform. With this kind of shoulder problem, he likely cannot be rolled, or only if the shoulders are supported. As his legs/core are affected, you may want to have a slip sheet under his fitted sheet to pivot him in the morning, if you have help, or we can suggest other options if it's just you.

If this is the flail arm variant of ALS (the one most likely to cause subluxated shoulders), it is a slower-moving version of ALS (average survival said to be ~5 years) and it is very unlikely that any other joints will dislocate as long as they do not suffer undue stress.

Apart from the shoulders, this form of ALS generally goes through the various issues like arms, legs, core, breathing, eating, swallowing, talking, etc. but some people who have it are less likely to have problems with eating and talking, and breathing until later in the disease, or less severe overall, and that is why survival is longer on the whole than with more common types of ALS.

Best,
Laurie
 
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Given the widespread pain, I echo Laurie’s recommendations plus the following:

1. An NSAID such as Ibuprofen, Naproxen, or Celebrex. Make sure this is always given with food, and consider adding a med such as Zantac (ranitidine) or Pepcid (famotidine) to protect the stomach, especially if there is any history of peptic ulcer disease.

2. Gabapentin or cymbalta (Duloxetene) for non-narcotic pain relief.

3. If the above fails, consider opioids Morphine or Methodone in low doses.

4. Consider CBD/ THC
 
I'm not sure when it happened but I tore my left rotator cuff and the MRI showed tendonitis and a few other things. I also injured my right knee and now the left one hurts, too. Negative MRI on knee but it sure feels like a torn miniscus (which I had in the other knee from a skiing accident when I was a teen.)

I've had a lot of pain, almost from the beginning. The first pain I notices was lower back pain. I think it might have been caused by repetitive bending while I was doing hours and hours of work on the computer each day and bending down to pull out pages from my printer. Then playing cards for hours each day and reaching across the table (that was all in January 2016.) I actually went on Oxy for about 3 months (very, very small dose) and it broke the pain cycle. I was totally pain free until September 2016, when I twisted my ankle and fell. I sprained it badly but was right in the middle of moving so I hopped around and put my back out again. By the time I moved (a month later) I was in a wheelchair. I still had strength in both legs so I decided to do water therapy and it worked. My ankle healed enough to walk again but not far.

Then I did something that I would never recommend to someone with ALS. I started doing the treadmill and worked up to 3.2 MPH at an incline. I think that's what did my knee in. That happened in February.

I started physical therapy on both my shoulder and knee about a month ago. I'm not sure how much it has helped but they did discover that my adductor muscles were both extremely tight. They've been doing range of motion on those muscles and it seems to help my knees a little. The shoulder is more of a challenge.

I go back to my orthopedist next month and I'm asking for a shot of steroids in the shoulder. Last year I closed the car door and didn't let go of the handle. That shoulder got pulled out of place and it made the pain a lot worse.

So, yes I am in pain but I try to move as much as possible and try to do range of motion exercises every day.

Some things that I believe help me with pain: Advil, medical cannabis, meditation, floating in very warm water (above 85 degrees) and if it gets so bad I can't function I take 1/4 of a 15 mg Oxy. Gaba works but leaves me very depressed after a few days.

I was one of the lucky ones who didn't build up a tolerance to Oxy. I never took more than 1/4 pill twice a day and only took that second dose if I really needed it. Same with Valium. I've been taking one at noon and one at bedtime for four years. Sometimes I forget the one at noon and, for me, that's a good sign. I think the CBD helps a bunch with anxiety.
 
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