I have had BFS for four years now.. I had my initial freak out phase where I thought I had ALS, etc.. had tests at neurologist.. everything clear.. and I was able to decrease anxiety and live with minimal symptoms for years. I am extremely upset because I thought I had BEATEN the anxiety over my BFS, but for the past week I am a hot mess! I have these new symptoms that I never experienced in my four BFS years so its freaking me out. I have a side to side shaking in my fingers.. but I saw Chrissi’s video so I feel better about that. But yesterday morning I woke up with tingling in both hands in my pinky, ring finger, and palm. Actually went to doc because numbness didn’t subside no matter what I did.. he said I probably damaged my ulnar nerve.. but BOTH hands?!?! the tingling persisted all day... eventually concentrated only in my left hand.. and before bed I noticed numbness in my pinky. Well I slept very carefully last night with both arms at my side.. when I woke up I only had a faint tingling in my left hand.. but my pinky still seems a little numb. I mean I know the feeling of something "falling asleep" then tingling and you wake it back up and you are fine. but this is different! The tingling seems to be increased since I have been up.. a little in my wrist and maybe in my left arm also. No tingling in my right side today. Anyone experience this? Tingling that lasts days and is not just when you were sleeping weird but actually persists the entire day with some numbness?Thanks in advance!
BFS Struggle: 4 Years Later
- Thread starter kaylar3
- Start date
looks like we often have bilateral ulnar /carpal symptomes (me too, however not to a degree of constant numbness yet), looks like it is more related to their hyperexcitability than to real damage... but if you work a lot on the PC placing your elbows on the armrests - it might be a case then.at least I have pains and tingls and numbness (however intermittent) in BOTH hands.
christinasgirl123
Well-known member
Ulnar problems are soooo common in BFS, I had the same stuff and randomly still get it. Glad you liked my finger dance 
I don't know if what I have is some sort of ulnar nerve problem, but I've had numbness and tingling in my right hand (actually my ring finger and pinky) for several days now. During the day I can use these fingers (I haven't lost the sensation) but the tingling is always present. However, last night and the night before, I woke up in the middle of the night with my pinky finger completely numb (with total loss of sensation), but when I started to shake and massage my hand the numbness went away. I've had the same numbness/tingling episode a couple of months ago and then it just went away. What could it mean?
I must admit many of us have at least tunnel-like syndrome.First, why you are surprised with the fact it strikes both hands? we overuse our left hand nowadays as much as right one - PC typing is as much stressful as mouse use. Second, with the time our fascia become less elastic and it causes nerve entrapment. Who knows, in BFS it might be even more prominent process. Third, our nerves might be already a bit inflammed due to BFS, so the course of BFS just adds inflammation. Ring and pinky finger indicate troubles in carpal zone rather that in ulnar so if you for exaple have a hobby like knitting or sewing, you might feel it even more prominent too.My sister in law just had good strong carpal neuritis in a few weeks... She has to take quite a treatment course now. Be careful, follow all doctor's prescription and try to immobilise your wrist by special bandage.
Jujulee,I have the same thing. This is nothing to be concerned about. My neuro at Mayo explained to me that our nervous system is clearly exciteable and irritable. It doesn't take much to upset the nerves. So even sleeping with our arms in the same position for hours can cause numbness. He assured me that this is nothing. He said that any kind of numbness that can be shaken out is 100% benign. Keep an eye on things you are doing during the day that might also cause numbness like resting your arms on your elbows while typing. -Matt
During the night when I massage my pinky, about 80% of the numbness goes away immediately. However, there is still a 20% tingling feeling left (the same tingling I have nonstop all day long) -- and that's what really concerns me. The way I put my right arm on the desk when I'm typing or holding the mouse could definitely put a pressure on my right elbow. The question is: since my tingling has become permanent, does it mean the nerve is damaged? If so, is it reversible?
Jujulee, the answer is yes in many many cases.you might first change your workplace arrangement 
then vitamines of B group are good supplement (if you are not allergic to them), then the drugs to improve blood circulation, physio etc. practially can reverse many cases of tunnel syndrome. I am not sure if it is OK in your country to take even vitamines without prescription, but you might talk to GP anyway about how to revert the damage.
then vitamines of B group are good supplement (if you are not allergic to them), then the drugs to improve blood circulation, physio etc. practially can reverse many cases of tunnel syndrome. I am not sure if it is OK in your country to take even vitamines without prescription, but you might talk to GP anyway about how to revert the damage.Surely yes. The stroke affects upper motor zone and therefore the brain can not command the spine neuron units (so called anterior horns) any more (or at least until the operation of that zone would be restored more or less. Same (full hand palsy) would happen if spinal units are damaged, because brain can command as much as it will, but executive organ is dead.while local neuritis (tunnel syndrome) is already at the level of so to say cabling coming from spinal executive unit, and there are two main branches in this zone- ulnar (pinky, ring, half of 3d finger - sorry for mistake I made yesterday! it is really ulnar) and carpal (thumb, index, partly 3d finger). Should you broke the palm or finger, there may be further finer division and after such fracture single finger might be impaired (I had two fingers broken at the level of palm bones, and therefore can do Vulcanite hello symbol easily, because my ring and 3d fingers on the left hand are now much spreaded than ususally due to neural damage somewhere in those fine little branches )) it is called "midwife hand".
)) it is called "midwife hand".Also have ulnar issues. Both arms affected now. Tingling is a lot better these days; the main problem is pain in the wrists and, sometimes, in the elbows and pinkies. It helped to sleep using a wrist brace; I suggest that. Every night I wake up at least once with tingling in the hand or pinky finger. But it goes away quickly.
Thnaks for good words, Jujulee 6) I was SO MUCH feared with ALS when i typed in english 'bening myolconia' I find this site. People here saved my life and my family life too, to be honest. So all what I do is just a bit of giving it back to others who need it BFS has a various but still very clear clinical picture so we must not let ourselves go into dreadful fears
BFS has a various but still very clear clinical picture so we must not let ourselves go into dreadful fears