Status
Not open for further replies.

mimipgm

New member
Joined
Nov 2, 2011
Messages
8
Reason
Loved one DX
Diagnosis
09/2011
Country
US
State
TN
City
Springfield
My mother was diagnosed with ALZ in Sept, 2011 and since that time, she has gone down dramatically and according to her doctors, "progressed more rapidly" than they had ever seen. One of her doctors told us that there was no pain with ALS, and another one said there would be minimal pain if any. Her hands have swelled so badly, that she can't even use them for anything. They also hurt her constantly and she has a hard time sleeping. Her Neurologist sent her to a Rheumoidtologist because he said her blood work came back with severe Rheumatoid Arthritis. No one else seems to think the swelling and pain is from arthritic symptoms. Could someone please tell me if the swelling and pain is from ALS? Her doctors have given us different answers. Thanks for your help.:razz:
 
Are you doing any type of occupational therapy with your mother? If her arms and hands are not moving and just hanging down, they will swell. We worked with Terry's arms and hands four days a week. We also worked with his legs every day. This helped keep the swelling and discomfort to a minimum for him.
 
Thank you for your response. Yes, we have had both a PT and an OT coming 2-3 times per week, but did not seem to be doing her any good. She would be so tired when they were there that she couldn't sleep at night from the soreness and discomfort. Her doctor told her she didn't think it was doing that much good at this point and she stopped everything except her speech therapist which is helping a lot. I was just confused because one doctor says it doesn't hurt and another says it does some, but she is in constant pain. She has been diagnosed since Sept. '11, but by the way that it is progressing, we believe she has had it much longer than that. Again, thanks for your response!
 
Is the doctor treating the rheumatoid arthritis .?
 
She should not be doing any strengthening exercises, just range of motion exercises. Do you know what kind of exercises they had her doing? Range of motion should not tire her out. I did a set of range of motion exercises twice daily on my mom. If we didn't do them she got very stiff and crampy. Skipping them even a day I could tell it decreased her range of motion. If her hands and arms have limited mobility make sure they are in an sling and/or somehow elevated for most of the day, they need to be above her heart in order for blood flow to not pool in them and cause swelling. Also gentle massage pushing the blood up the arm towards the heart a few times a day helps tremendously.

Here is where the doctors always confused us, ALS does not in itself cause swelling and they would tell us that over and over. What we later pieced together was limited mobility does cause swelling so yes one of the many symptoms of ALS is swelling.
 
Just because she has ALS doesn't mean she can't have RA at the same time! If her blood work came back showing rheumatoid arthritis, she should be getting treatment for it.. you want her to be as comfortable as possible!
 
My husband's feet swelled terribly, developed blood clots and suffered two pulmonary embolisms. He's now taking a daily dose of Coumadin. His feet look better but the right hand that has no movement has swelled and the fingers on his right hand are contracting. MUCH pain. They fingers can not be moved and the splint is not helping because we can't get the fingers straightened anymore. He says he hurts everywhere.
 
Status
Not open for further replies.
Back
Top