Severe leg vibrations constantly

Posted by jaymier @jaymier, May 2, 2023

I had Covid and tested positive for 19 days. Not long after I started to notice my hair falling out & fatigue. Now it's been a few months and while I have a previous rare disease called CIDP (like M.S.) and have been taking IVIG infusions bi-monthly for years, about 3 weeks ago my legs began vibrating like a constant electrical sensation or cell phone. It wakes me all night and I am just about ready to lose it. I ask my neurologist and get told it's neuropathy...but its so different than what I have experienced for years. The only options I have are anxiety meds and gabapentin that put me to sleep. I have no life because I end up sleeping all day. Any help/advice would be greatly appreciated!

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rudai | @rudai | May 2, 2023

Sorry for your stress. I had COVID hair loss and internal vibration in my chest. After ruling out a heart condition I have been living with it. Hair is starting to grow back. There's another thread on internal vibrations and a Mayo doc has a YouTube video about it. It's a central nervous system syndrome, sorry I don't have the link on hand, but it's on the Mayo clinic website. Good luck.

X | @jesmorales | May 4, 2023

I just posted about my legs hurting so bad and feeling weak. My toes turn purple sometimes red and get hot. Is this neuropathy? I feel for all of us and wish we could all get better or catch a break.

mbg1 | @mbg1 | May 7, 2023

My legs and toes hurt now almost every day and I feel stiffness in my legs as well. Don’t know what to do

instantcompass | @instantcompass | May 7, 2023

Hi jaymiier,

I've had/have the same symptoms as you for 18+ months and will share a few things that might help. I'm very sorry you are also having this awful experience.

-For falling asleep, I like using edibles or ambien. Even if you can't fall asleep edibles may help you relax and make the shaking more bearable.

-Waking up tired and/or shaking is very frustrating but trying to fall back asleep is mostly ineffective for me. Naps can be good. Or sometimes I will try to get myself extra tired/fatigued and have a satisfying sleep from that.
-My long covid symptoms seem to follow linear relapse/remission cycles so even if its bad now, you can expect occasional relief. Even if its only 1 "good" month in 6.

-Gabapentin is a standard prescription for tremors but seemingly ineffective for 'long covid tremors' - if it isnt working for you I would consider dropping it.

-Treating new long covid symptoms while having CIDP all ready sounds extremely challenging. It may be beneficial to review your CIDP treatment.

instantcompass | @instantcompass | May 7, 2023

In reply to @jesmorales "I just posted about my legs hurting so bad and feeling weak. My toes turn purple..." + (show)

You should see a doctor or neurologist about this if you haven't. Changing colors is a lot more concerning than just abnormal pain/sensations.

Edit: saw your other thread - did your doctor order some blood tests at least? There are many possible causes for your symptoms besides Long Covid, and it seems like you should have been referred to a neurologist.

cacnz | @chriscapper1970 | Jan 26 6:18pm

Id be interested if you have any recent updates as to how you are getting on. I have had CIDP since 2005 and was almost on top of it, however i have had covid 2 times now and although very mild, i have had dreadful tremors and fatigue since the second one. What can you take to reduce tremors (the usual nerve meds like amitriptyline just don't do anything)
I am planning on going to Mayo end of Feb to get a check up to see what they can recommend

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