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My LEMS Changing By the Hour!
Most of the time I hear fellow LEMS patients talking about their good days and their bad days. But what about changes by the hour! Yesterday was just such a day for me. Early in the afternoon I left my apartment and trekked to the mailbox to pick up the days delivery. To be frank, my hips felt like crap. Hips are perhaps my biggest barometer of my LEMS status, and they weren’t good. The weakness was pretty pronounced.
A couple of hours later I needed to get my daily walk in, so out the door I went. Ah! The hips felt much, much better! It was a good walk.
How and why did this happen? It’s a mystery to me, I’ll be honest. My Firdapse was taken on schedule, so perhaps I hit it just right when I went out. It’s hard to tell.
I don’t detect these differences in hip strength by the hour too often. How about you? Does your LEMS weakness change during the day? -
8 Replies
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Hi Price,
Thanks for your post. It was good to be able to put a face with your name at our meeting. I also feel that my symptoms come and go some days, to the point that I think that I’m crazy. One moment I’m hurting in my right leg and hip so badly that I can hardly stand, and then shortly after I can be up doing small chores. This LEMS makes no sense at all, and I, for one, like some order and routine in my life, but that’s all out the window now. I have been off the IVIG for the past 2 months due to changing neurologists, but will be restarting soon, so I am hoping that will give me some more consistency with my mobility and pain. He wanted me to go on high dose prednisone, but I refused for now. I’m not wanting to risk the side effects until I have to go that route. Hope that your symptoms will level out soon. Joyce
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@joyce275 Hi Joyce! It was great to meet you too. It’s always interesting to hear the perspective from others with LEMS!
I hope the IVIG restart will be a benefit. I had an interruption in mine due to another medical issue and did a restart. Remember it may take a few months to get the full goodness. Hopefully, it will smooth the ups and downs.
I agree on deferring on the prednisone. It’s a powerful drug with powerful benefits, but comes with serious side effects when taken long term. It pays to be educated about the issues.
And yes, life with LEMS can be unpredictable. Don’t we know! I’ve found living and adjusting is the biggest challenge.
Let me know how your IVIG restart goes. I’ve also heard SubQ delivery can really help keep you on a more even plain week to week. It’s not available to me, but perhaps you could investigate that. Good luck!
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My LEMS changes throughout the day. I never know what might be the best time to tackle any task or project! And my eyes change at any time from good clear eyesight to blurry and poor focus. My Ptosis(dropping right eyelid) varies day to day and hour to hour also. Oh my, I’m falling apart! One thing I’ve learned these many years is to become flexible and take each change in stride, not let them get me down. What else can we do? I forge ahead!
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@dordem Dorothy it does sound like a challenge, but I like your attitude! We just roll with it!
Generally, I try and stack my activities towards the mornings. My daily walks are more seasonal. Summers I walk early. Winters I walk later.
I can tell from your comments you’re an experienced “Lemmon”, if you don’t mind the analogy.
You’re right? We forge ahead!
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I am very glad to hear that some people experience pain. I say I have pain in my legs and get told there is no pain with LEMS. I know my weakness is mainly mornings but there is some at times thru out the day too.
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@mackenzie Ann I think there is a lot going on with neuromuscular disorders that is hard to understand. I’ve never had pain from my diabetic neuropathy, but it’s reported quite often. I consider myself lucky.
It’s interesting you say your weakness is most pronounced in the mornings. Perhaps it improves when you do your morning meds? I don’t feel with it until I’ve had my Firdapse, Mestinon, and a hot cup of coffee!
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Hi again Price, you mentioned morning being the best time for you for more aggressive activities, mornings are my best time also to accomplish things. Then my mobility and energy are at the best. If I am going to walk, it has to be morning and before the day starts to warm up. Heat just melts my muscles. I really struggle with hot weather. If I wait to walk later in the day after doing other chores, I am too weak and potential for falling is greater.
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@dordem Interesting that you mention heat being a big problem. So true! We have very hot summers here in Texas and my LEMS suffers for it. In the shank of it, I make sure to get all my chores and activities done early, before the high heat hits.
I have a cooling vest system the VA has given me. It came too late last year to use, but it’s in the closet. I’m trying to figure how I might use it when it gets hot here. We’ll see.
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