Connect
← Return to My experience with Small Fiber Neuropathy
Discussion
My experience with Small Fiber Neuropathy
Neuropathy | Last Active: May 24, 2022 | Replies (85)Comment receiving replies
Thank You .That is the same nature of my twitching . I don't have it all the time..it moves but mostly in my legs . It isn't deep twitching but enough to notice. I am grateful I found connect as well . I had to basically educate my neurologist on what SFN is. He replied you don't get twitching or cramps. Do you get cramps. I get very mild in my feet. What is the TS-HDS antibody test . I will ask my Dr to schedule that . Do you work out . I have found working out...good diet...no drinking really helps. Thanks so much for your help. John
Replies to "Thank You .That is the same nature of my twitching . I don't have it all..."
My twitching has been primarily in my legs also. My left leg is usually much worse then my right for some reason. Recently i have begun to have twitching in my pinkie fingers, mainly at night. Very mild but, like you saud, enough to be irritating, especially when I am trying to sleep.
The TS-HDS Autoantibody test was just a blood draw (i am 99% sure...I have had A LOT of tests😂). I know that my values came back at 21,000 [H] and it should be <10,000. That was when my neuro knew I had a rare type of SFN. Small fiber polyneuropathy.
I am very active when my body allows. Crippling fatigue can "take me out of the game" for weeks or even months. Aside from that, prior to COVID I was kayaking 2 or 3 times a week, hiked a few times a week lifted weights (to kept strength but also to fight off osteoporosis from all these steroids) and did pilates. Before that I was riding, training and competing 5 to 6 days a week as well as doing pilates, spinning and lifting with a personal trainer.
Except for the fact that working out sometimes make me extremely dizzy and disoriented I agree with you, it makes me feel better, helps with twitching (at least while I am actually being physical) and keeps me in a better mental state. I feel like the healthier I am the better/longer I will be able to maintain some sort of active, "normal" life style.
I am also a big believer in healthy food. I eat only organic and I don't eat much meat but what I do eat is always grass fed. No drinking here either. I do consume A LOT of soda, it is always zevia which is natural, made from sevia and no dyes etc. Caffine is a necessity for me!
Do you have any issues with fatigue, brain fog, or migraines?
As for cramping, I do get cramping in my feet too. They come out of no where and thankfully they pass fairly quickly too.
Megan
Connect
laureen, I do get cramps, in my calves and feet, if I move my legs a certain way in bed I will get a cramp, sometimes I can work it out without rising, other times I use Theraworx spray and walk a little. I do take magnesium glycinate 2xday which I think helps also. I’ve had some twitching-in my left thumb but I get that creepy crawly feeling more often in my calves when sitting which only lasts a short while. Have you experienced the “dripping cold water” sensation on your legs? that only lasted a few months for me. Just FYI and hope SFN is ruled out for you. Helen