Musings on Pain and Fasciculations

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lisa g

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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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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.
 

EricInLA

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I'm resurrecting this thread! I have new pain that is really playing with my mind, and I wonder if anyone has had similar pain. Lately I've got a sort of neck pain -- it's like when you wake up having slept funny and it hurts when you turn your head too far to the left or right. A little bit also when looking up or down, but not as much that way. I researched online and found some exercise where you can test your neck muscles by laying on your back and lifting your head 1 inch off the ground while making a double-chin (I know, sounds funny, but that's the test). The average guy can hold this position for 39 seconds. I went past 39 seconds which was encouraging, but I still have this damn pain, which sometimes leads to a low grade headache. I wonder if it's the neck muscles slowly weakening.

Also, I have had a lot of left leg pain lately, which is less of a mystery. I don't feel wobbly or a risk to fall, but after I'm on the leg for a while, it's very uncomfortable. I'm sure this is from fewer muscles doing more work and they're not happy about it. For those of you who have this, what are you doing for this type of pain? OTC stuff? CBDs? I've been taking nothing, but I need to get a program in place. The pain is not affecting my ability to get around, but it is pain nonetheless.
 

KevinM

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Wow, Eric, it does seem that we are following very similar paths. I also have the neck pain you describe, almost always on the right side where I have some muscle weakness in my upper back and shoulder. It does get better if I don’t do much for a couple of days. My neurologist checked my neck muscles a couple of months ago when I told him about the pain, and he said my those muscles were still normal and that the discomfort is related to my back muscles slowly getting weaker.

I also have transient right leg pain, though it isn’t as constant as my neck pain. I don’t have any functional loss in that leg, just some aching that shows up if I over use those muscles. That, too, diminishes if I limit overuse for a few days.

I’ve tried a variety of therapies such as a salon pas patch for my lower back, some spray icy hot for my neck, and usually a couple of Tylenol. I also have a prescription for a narcotic, and I usually take either 1/2 or one of those late in the afternoon to head off any pain from overuse during the day. That and my 1:1 THC/CBD oil.

I hope that your pain will lessen if you are able to stay pretty inactive for a couple of days. Keep us posted, Kevin
 

lgelb

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Even if the weakness is in your back/shoulders rather than neck at this point, a soft cervical collar at times may help because it will reduce the load on the affected muscles.
 

kellysal

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Kim,
I started having lower back pain a few weeks ago. Trying to figure out if this is ALS related or not. I just assume everything is. Last clinic muscle strength is normal. Last EMG limbs were normal. I do have the pain Kevin mentioned rotator cuff shooting pain when I move left arm in certain position then it subsides with slight discomfort daily. The back however is very uncomfortable. Resting seems to help but as the day goes on it gets pretty bad . What seems to help you? I tried a massage.. made it worse! But enjoyed it!
 

KevinM

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Kellysal, if your muscle strength and EMG are normal, where did you get your diagnosis? I would seriously consider a second opinion. Best of luck, Kevin
 

Nikki J

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Kevin if you remember Kelly is bulbar onset she said her limb emg was normal not her whole emg I am pretty sure she said she got appropriate opinions
 

KevinM

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Thanks for reminding me Nikki. I got excited for you Kellysal when I read about your normal strength and EMG. Yes, resting my shoulders for a couple of days and trying to limit my activities does help. Kevin
 
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