-
What is your most troublesome LEMS symptom?
Hey all!
I think we’ve touched base on this at some point, but I know we have a lot of new members and I’d love to hear some feedback from everyone!
What is your most troublesome LEMS symptom?
For me, the fatigue is just crippling.
I can go from feeling like I got a good night of sleep and am well rested to feeling like I can barely function in about 5 minutes flat.
Sometimes the wave of fatigue can hit out of nowhere.
I can sleep for 10 hours some nights and wake up still not feeling rested.
Most nights during the week I am in bed by 8:30-9 because I absolutely have to have at least 8 hours of sleep to function.
Does anyone else experience extreme fatigue like me?
-
4 Replies
-
The fatigue is totally submersible like grappling in a fog with you eyes close. This leads to how you appear to other people the stock phrase “ Is your looking well’. The other shudder is when I forget to take my 3/4 Dep.I just seem to disintegrate . The whole un – well – being is beyond comprehension to most people. You realise the majority of people are totally unaware of the mind / body axis. The only explorer that had capability of mapping out the territory was the late Oliver Sacks but in his clinical experience never came L E M S!! A good starting point is his “ Not a leg to stand on “ which totally blurs the doctor/ patient spaces. I suppose what I’m saying is we inhabited are own separate bubbles of reality.
-
Hey
@ghead
Yes! That’s exactly what it feels like to me as well! Sometimes the fog lifts, but other times its thicker than usual. I will definitely have to check into “Not a leg to stand on.” Thanks for sharing with us!
-
My arms and legs go weak it is hard to lift them. They flop and drop. Before treatment i would fall. Falling down steps was the finale in finding out just what was going on. My doctor ordered 1000 mg of steroid in the last IVIG yesterday and that has helped me today even my double vision has improved. Im a newby. Thanks for your comments
-
Hey
@marym
I’m sorry Mary, I know that is a frustrating feeling and I think many of us with LEMS have the same heavy floppy legs, so you are not alone! I’m glad that the steroid helped and I’m hoping you get even more relief with IVIG.
Log in to reply.