Old Timer

[bfshopeful]

Most of you don't know me, but when I came here in 2009 I was a wreck. I have had every twitch known to man including the tongue. I have had every test and it is benign. You don't have ALS.

I did however make the mistake of drinking way to much to alleviate my discomfort and anxiety. It seemed like the right thing to do at the time, but it has taken its toll.

I may have small fiber nueropathy from heavy drinking. The jury is still out on that. I have been having burning feet and sometimes hands. Some intermittent parathesia in hands and feet and my limbs fall asleep very quickly.

Good news is that if alcohol related it is mostly reversible because I caught it very early. It may also be my vit B because it is on low average. Right around 200.

I do have a question for both new and old sufferes of bfs.

Do you ever get burning on the bottom of your feet?

I'm not thinking it's BFS per se, but possibly a symptom of anxiety?

[veryworried123]

Good to hear from old timers
I hope I'll be one of them some day

I always wonder what happened to old timers as this board tends to be mostly new comers approx a year. I think old timers learn what they can get to a certain point when things get repetitive and then learn to move on. We do have some old timers that are here and still provide support which we are happy for I hope they stay...cause boy do I need them from time to time

I don't get that burning but I have heard some people do here
I get vibrating in my toe and sometimes my toe moves by itself and then goes back
Along with all the other *beep*...non stop twitching, body jerks, sleep paralysis and everything else

I agree that 90% of beating bfs is mental
I was at about 60% then I noticed a dent on the outside of my thigh when I go into a semi swquat or get up from a chair along with very quick vibrations / twitches / wavey like twitches
And that's scary so know in back to 30% or square one wondering why this all is
Twitching 5 months
Normal emg except for ton of fasciculations
High billrubin

This is one the hardest things to get over

[bfshopeful]

It is all mental. I promise if you have a clean emg you are fine. I left because I got tired of telling people the same thing over and over just to tell them again the next day. I do remember the fear though. It is miserable. Time will get you over it I promise. Just don't waste too much of your life worrying about something that's never gonna happen.

[Watereddown]

My burning is mostly on my shins and calves when i do feel it. Normally feel it when its hot out or something along those sorts.

[TwitchyDoc]

I do remember you, it is good to hear from old time tongue twitchers. Have you learned how to live with this condition or has it improved?

As for your question, I have never had the burning feeling but I have never really had sensory stuff.

[Ghayes420]

BFShopeful, great to hear from you bro!!

I have more sensory *beep* that you can possibly imagine.

It just comes with the territory.

Like bfshopeful says, you just kinda get tired of repeating yourself with the same thing over and over again.

Maybe neurologists feel the same way about us?

No need to worry friend, BFS will morph and change on you but it will still be BFS/BCFS.

[UFGatorGuy20]

I haven't had any bouts with burning. But, my extremities (fingers, hands, toes, feet) will sometimes ache on me. Pretty intense just out of nowhere on and off for a couple hours. I'll just look at my ring finger and be like, "yikes....????? why are you throbbing!?" I've seen some people link peripheral neuropathy with our condition, but not in a debilitating sense like advanced MS. I personally believe that our nerves are just hypersensitive and any toxin (alcohol, stress - cortisol / adrenaline, processed foods, chemicals) will impact them differently than the average person.

Quick side note, I was chasing alcohol a bit to cope at first too. But primarily red whine and gluten free beers. I just felt it was the healthier option. However, I felt pretty bad the next day and decided it wasn't the avenue for me.

Another quick note that may help... my first symptoms were actually ulnar and median nerve issues. I thought I had peripheral neuropathy. I was all over the Neurotalk boards. My fingers and elbows would just ache like crazy on me. I was sleeping with ice packs and arm splints. I changed my diet to literally Vegan. Not saying that's the best thing to do. But, I eliminated gluten, processed foods, inflammatory foods, flavored drinks, unhealthy oils, etc. I had dramatic improvements in my hands and elbows... but it took about 2 months. Then, BAM! Full blown BFS after a crazy stressful time and now my ulnar and median issues are back but not as bad.

I'm glad you are over your fears and hope that the small fiber issues are transient.