All over muscle twitches

[andybonse]

Hey,

For the last 6 months I've had little muscle twitches in nearly every place in my body, they are daily one minute my leg then will be my stomach or back or head some where. It's sooo irritating.

All electrolytes including magnesium tested and normal.

I briefly remember having them 2-3 years back and when I started florinef and my POTS got betterer they went away. But now florinef isn't controlling my pots as well they are back. So I am assuming it's related some how, over active nervous system or blood flow maybe?

Anyone else?

Andy

[outofadream]

Hi andybonse, I started with all over tiny muscle twitches a few years back too. Same story with normal electrolytes. The neurologist diagnosed it as being benign fasciculation syndrome in my case. I've always wondered too about how it connects with the autonomic issues though (my neurologist at the time knew very little about POTS and couldn't weigh in on any potential connection). The twitches started years after the POTS symptoms began for me, but the POTS was having a real nasty flare at the exact same time the twitching started. I do think sometimes the twitches are a bit better when blood flow is better, and they're always REALLY active just after doing physical activity like exercising. They certainly are annoying and tiring, sorry you're having to deal with that on top of all the other struggles!

[andybonse]

12 hours ago, outofadream said:

Hi andybonse, I started with all over tiny muscle twitches a few years back too. Same story with normal electrolytes. The neurologist diagnosed it as being benign fasciculation syndrome in my case. I've always wondered too about how it connects with the autonomic issues though (my neurologist at the time knew very little about POTS and couldn't weigh in on any potential connection). The twitches started years after the POTS symptoms began for me, but the POTS was having a real nasty flare at the exact same time the twitching started. I do think sometimes the twitches are a bit better when blood flow is better, and they're always REALLY active just after doing physical activity like exercising. They certainly are annoying and tiring, sorry you're having to deal with that on top of all the other struggles!

Yeah I actually read about BFS and can imagine it's that or at least related to the POTS. Some days it's not too bad, then it can be so annoying. All my POTS symptoms are worse so I really think it is that, I may up my florinef soon, but I want to see if I can try something else as I'm always worrying about my potassium on florinef.

I also get PVCS in my heart, so when I'm twitching all over and I get one, I panic and think oh no my potassium is low or whatever, then the blood comes back and it's all perfect lol.

I'm seeing my autonomic neurologist next week so will press for some answers, maybe an EMG, did you have one?

[outofadream]

For some reason my neuro chose not to do an EMG.  He only did an MRI (I assume to rule out MS?), which came back clean.
I hope your autonomic neurologist has some answers though! I hear you on the electrolyte concerns...haven't been on florinef but I have been on PPI's for a long time, which can potentially lead to low magnesium. I find the twitches really fluctuate too, so when they're bad sometimes still go through that panic...and then the electrolytes always turn out to be fine like you said, haha. Can imagine it's even worse trying to deal with PVCs at the same time!