Musings on Pain and Fasciculations

lisa g

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PALS
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04/2019
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I have a question, lately I'm experiencing pain in both arms. I was examined at clinic 2 weeks ago and the strength in my arms was registering 5's in both arms. For the past couple of days I'm feeling discomfort as if I've been working out with weights. Just wondering if this can be interpreted as progression and if it would be normal to feel it in both arms at the same time.
 

Nikki J

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are you perhaps having some low grade spasticity? I think you are umnd? That can be uncomfortable
 

lisa g

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I was wondering if that was what it could be. I'm not feeling weakness just an uncomfortable feeling.I was just concerned since its both arms at the some time. I start PT next week so I was going to address it there. Every now and then the arm locks up like my legs do if I'm cold. Yes I was diagnosed as umn.
 

wmilo

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Hi, Kevin. FWIW, my experience at the clinic has been pretty positive. I seem to be farther along now than you, but inititally I was still pretty ambulatory. I've never feld prodded or tested at clinic beyond some strength evaluations from the neuro and drinking some water for the speech pathologist. The benefit I see is the ability to see a group of specialties in one visit, where they come to you. You don't have to see them all if not needed.

Regarding pain, I have nerve pain in my heel and feet, and often feel like I've over-exercised my arms to the point of discomfort, more like aching. The neuro who diagnosed me told me that "ALS is not painful." Maybe not like appendicitis is painful, but not great. :confused:
 

KimT

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Bill, I have nerve pain in my feet and lower legs. It's a terrible pain. Shooting. There is a percentage of PALS who do have nerve pain. I've seen it researched and Mayo also says it is so. I've been trying to chase down this pain ever since it started, trying to find another source. Of course, there are other types of pain with ALS including joint pain when muscles start to atrophy and you're still moving around, back pain when your core muscles weaken and muscle pain. I have it all. Most of it calms down if I lie in bed or even in my lift chair but the electrical-type pain in my legs keeps up until I fall asleep.
 

wmilo

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Kim, I'm sorry you have so much pain. My foot and heel pain is more like you describe, but not as frequent.

I was just talking about what my experience has been. (I forgot about the muscle cramps.) I understand you and many other PALS have a lot of discomfort and I don't mean to minimize that.
 

KimT

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I've been stubborn about giving in to the Oxy. I just pop a Tylenol and try to do my thing.

Today I was in the pool and the pain vanished. I have to sit on top of a large pool noodle like riding a horse and paddle with my arms. It gives me a great upper arm workout but nothing else moves. I guess I'm using my core muscles just balancing. Anyway, it works for me and always makes me feel like I'm doing something.

As I walked back from the pool, my knees started hurting, then my foot pain came back. Not enough to make me slow down. I think being out in the sun and warm water really boosted my mood and the endorphins counteracted the pain.
 

lisa g

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Messages
362
Reason
PALS
Diagnosis
04/2019
Country
US
State
FL
City
Fort Pierce
I find the pool is really beneficial not only for minimizing pain but also for a mood boost. I feel so much better after an hour. My pool is at 79 degrees. Can't wait to get my port deacessed tomorrow and spend the weekend in the pool.
 
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