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Does LEMS cause you pain?
The reports of people reporting pain as a result of LEMS has me curious. Do you suffer LEMS pain? And how do you mitigate it? Why am I curious? I have not experienced what I would classify as “pain” with my LEMS. Oh wait maybe… My hips get tired and I experience what I would characterize as soreness, but not pain. I have however had profound left shoulder weakness which did result in sharp pain when I tried to raise the arm, but the muscles wouldn’t cooperate. The solution to that pain was time release Mestinon to help cover me overnight when this was developing. I also have diabetes, and many experience neuropathy pain from that. I’ve been lucky there too, no pain. I do not take any daily medication for pain, so perhaps I am very fortunate. If you have LEMS associated pain, where, and how do you treat it?
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10 Replies
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I was surprised to hear that there are people with LEMS who do not suffer pain! I thought it came with the territory. I have regular pain and muscle spasms which are treated with daily painkillers. I try to be very aware of the amount I am doing, and funnily enough I gauge when I need to stop and rest by how dry my mouth is. I know that if I push on I will regret it. IVIG really helps with the pain levels too.
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Ruth, I think I’m reconsidering my observation to say I don’t “chronically“ experience pain. I too have frequent, very painful muscle cramps. They hit me general in the lower legs to feet, occasionally in the inside of my thigh up to my groin, and very occasionally in my hands. Intense cramps like these are quite painful. I’ve yet to decide what about my LEMS and or electrolytes triggers them.
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I have never experienced pain with my LEMS.
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Yes, I wonder how many don’t. Many report pain from diabetic neuropathy too. I have diabetic neuropathy and feel very fortunate I’ve never had associated pain from that.
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Yes, I wonder how many don’t. Many report pain from diabetic neuropathy too. I have diabetic neuropathy and feel very fortunate I’ve never had associated pain from that.
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Hey @pricewool
I think this is a great topic!
I don’t normally experience pain on a day to day basis. I have some leg pain that comes near the end of my IVIG cycle that I would call neuropathic. I don’t notice it too often, but it’s usually happens on an extremely busy day at work. I have found that wrapping a heating pad around my calves eases it when it does happen.
My muscles do tend to stay in knots and get aggravated easily. I’m not sure if this is related to LEMS, or if its related to the other autoimmune issues I have including a connective tissue disorder. I have found massages to be really helpful for this.
I hadn’t experienced too much pain before I injured my shoulder at work in December. Surgery helped a lot, but I still have some pain, especially after a very busy day.
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Ashley, when you say knots, I’m assuming you mean cramping? I always hate to assume anything though. Because I hear so many reports of cramping, that will be a topic at my next neurologist visit coming up. For me, it often happens at night when I’m in bed. The intensity can be so intense that I fly out of the covers and to the side of the bed, to get the muscles to relax. I have had a brief message exchange about electrolytes with her, but more discussion is needed.
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@pricewool,
That was a quick response! I don’t notice too much cramping personally, my muscles literally get in knots due to multiple trigger points. This happens mainly on my back, neck, shoulders and around my IT band in my legs.
Some might consider the pain in my calves near the end of my IVIG cycle as cramping.
Usually muscle cramps can be caused by low potassium levels. Have you had labs drawn recently?
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See! It’s not good to assume (smile). Absolutely watching potassium and magnesium too. Just had a blood draw yesterday for cardiology and will see those results soon. I’m taking extra care of those.
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I’ve experienced the muscle knots that Ashley describes for decades. Doctors say it feels like I have “rocks in my traps.” No amount of massage, heat or muscle relaxants will relieve them. Only on occasion, when my med balance is perfect, do I get relief. I realized this spring, as my Sub Q treatments were becoming effective and there are no ups and downs like with IVIG, that my muscles were getting too much acetylcholine. I had to stop taking DAP and only take Mestinon, which has relieved my knee cramping issues completely.
The funny thing is that my diagnosing neuro doesn’t understand why we could have muscle spasms or pain. Well, if the acetylcholine release that has been blocked by antibodies gets resolved, muscles are going to react. Also, if some muscles aren’t contracting the way they should, then others are going to over compensate to try to make up the difference. I learned this with the issues stemming from my back surgery and fusion. The muscles around my rod haven’t had to do anything in almost a half a century- so the muscles above and below my fusion have taken on more work and thus spasm.
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