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Cathyssister

New member
Joined
Nov 3, 2010
Messages
1
Reason
Loved one DX
Diagnosis
09/2010
Country
US
State
Pennsylvania
City
Monroeville
Hi Everyone,

I am Cindi, Cathy's sister. I have been reading this forum since September 2, when she was told she has "It", AlS. You all have helped me and her so much. It started in her left shoulder last January, by March she was on short term disability, by September she had lost the use of her left arm and hand, and was walking with difficulty. Now she is in a wheelchair, can no longer take care of her self in any way. She is married and a mother to two boys, 17 and 14. She is my little sister and best friend. I have always taken care of her, made things better and I can't do that now. She is in so much pain, is that normal? I understand there is no normal with this monster that has a death grip on her, but do others have such pain? How can I help her? She hates to take pain meds, she says it slows her down, her movements what little she has. She is having a hard time talking now also. She still loves to eat and can do that, but someone has to feed her. Her hands and wrists hurt most of all, even if they are slightly bumped. She recently had a catheter placed and is experiencing terrible pain. My sister has never had a very high pain tolerance so I guess I am wondering, is this pain real or is it her low tolerance. I have been told there isn't much pain with ALS, but there sure seems to be with Cathy. Thanks so much for all your help and information I have already gotten here.
 
Were does your sister go to Clinic? I have a lot of pain also, some people just do. And the reflexes are sometimes responsible for making us have such a issue when touched. Or maybe it is the muscle loss, stretching the ligaments, and tendons causing the pain. Has she tried much as far as zanaflex, or baclofen? Hope we can help.
 
Ladyinn had pain with her arm, Cindi, and to help relieve the pulling on her shoulder as I understand it, she used a sling. I'll see if I can find her to come and chat with you.

I wonder if there's a blockage in the catheter... I think that is fairly common, and is painful.

Ann
 
i usually have leg pain so bad it makes me cry. i take hydro cordon n it helps.
 
It only makes sense that if you lose your muscles and the bones are hanging by tendons that there would be pain of varying intensity!

My husband was asked if he had pain on his Friday clinic appointment. He hates pills, but he accepted the prescription for percocet. He's fallen out of the bed a couple of times and that has been painful. He can't hold his head up much and that is painful. He can't effectively move his left limb and that is painful. Tiring his right side out to try to compensate for left side loss is painful. No pain? He'll take a percocet for that!
 
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