Learning About BFS Symptoms

[Rubyracer87]

I just recently have learned about BFS, and have been suffering with some symptoms since the end of August. It started with a numb right foot. I was extremely active person always climbing, hiking, biking and running. I attributed it to that at first. The next week I started getting numbness in the right hand and face. I went to the E.R. in case it was a stroke or heart attack. They did an EKG and a brain MRI with contrast and it all came out normal. They were baffled and sent me to a neurologist. I was so nervous that it was MS after the E.R. told me that it was a possibility that a neuro should explore. I became an anxious mess. About a week later I started to get a twitching right eyelid and other weird sensations around my eyes. I went to the neuro and he said that my neurological test looked good and brain MRI looked good and he felt I had a pinched nerve. I started to have numbness and tingling to encompass both sides of my body. I was under so much anxiety during this period and started to go to physical therapy. After a few weeks of physical therapy my right calf and arch of foot started twitching non stop. Has not stopped since in started, well at least at rest it does it. I started getting random twitches all over my body, nothing sustained, except in calves and feet. The twitching moves my toes around. Then burning started in my feet and calves and no more numbness. I still would get numbness in fingers on both sides and random moving pain around my body. I have been under extreme anxiety all during this period. I went and got a cervical MRI with contrast to make sure there were no lesions, and it came back normal and nothing wrong. Started to relax for a day until the burning in feet continued, and twitches, and then a new symptom. I started to get internal vibrations as I went to bed and when I woke up and in the middle of the night, then started to be a little bit of shaky hands, and started to worry I was having Parkinson's... I feel weak at times, but admit I skied like 4 days ago and was able to ski for 4 hours just fine, but other times I will feel fatigued and dizzy and tired. I have just became so scared I have a neurological nasty disease like MS, ALS, or Parkinson'sThen I read about BFS, and I wondered if this could be BFS or if maybe I have some pinched nerve and the stress and anxiety brought on BFS? Any thoughts about this and BFS would be beyond helpful, or any insight you could offer. Thanks so much for reading this far. KC

 

[BFSDiner]

Hi KC-Nearly every symptom you've listed, people here have had. I had the burning and freezing, the twitching, migrating pain, etc etc etc. Some good news for you: You've completely ruled out MS and ALS. So you don't need to worry about those anymore. More important information for you: The symptoms you have can be caused by a billion different things. I spent many months searching the web for other conditions (99% of them completely harmless) that can cause this onslaught of neurological/nerve/muscular manifestations, and there are tons. There's absolutely no reason why you should worry that its something serious at this point. And im not just blowing hot air up your skirt (assuming you're a dude, because I don't talk to ladies like that). Your anxiety is doing one thing, and one thing alone: taking the symptoms you had and magnifying them by at least 10x. So if you were super chill, relaxed, with not a care in the world, you can be assured that your symptom severity right now would be a dull roar compared to what you've self induced thus far. The symptoms are real, and you're not creating them with anxiety. This condition however, whatever it is, plays directly on the nervous system. So while it may be fiddling with it a little, if you get filled with health-anxiety and terror, you take that "fiddling"... to atomic bomb levels. Whatever BFS is ... it requires significant downtime. Emotionally. Mentally. And Physically. Some theories state that we've fried our nerves. Literally. With the extreme sports, etc. Some theories include a viral element. Some viruses live and activate in the spine and nervous system. Its no coincidence that a large % of people here are extreme athletes or extreme worriers. The effects this can have on the body are huge. Some people have had great success with major lifestyle changes that support calming of the nervous system, digestive system, and the mind. There are supplements, foods, and lifestyle change techniques you can take which will speed up this process significantly. But none of it will work if you continue to scare yourself. This needs to be eliminated 100% first. In any case, the good news is that you're fine. The numbness is all part of the "inflamed" nerves and possibly slight demyelination going on (only God knows why we have this, but stress and prolonged over-exertion and other things can lead to it I believe). Its similar to having a pinched nerve, but it very well could be the muscles surrounding the nerves, or the nerves themselves being inflamed and pressing on surrounding structures. Resulting in numbness. I know that when my BFS was at its worst, I had nerve / sensory symptoms. And as I managed to ride that crap out, and stick to my daily regimen of calming my system, those things began to dissipate as well. The question on the table now is, are you going to be like some here who throw their hands up and don't bother trying? Or are you going to take the bull by the horns and start changing your lifestyle, diet, and physical stress levels? its a many months long process, and may require a huge overhaul. But it will be worth it in the end. My signature link may be of some assistance.-BFSB

 

[Dawn28]

Hi KC,Of all of the posts here, your experience is the most similar my own. I have experienced all the symptoms you've listed. Burning of my feet and hands is the most consistent symptom I have. Also I had tingling first, followed by twitches later. I have yet to be diagnosed with anything. All my testing thus far has been negative, which I consider a blessing. It is getting frustrating though because it causes so much anxiety for me. My symptoms started 11 months ago. I'm writing to give you hope. Just letting you know I've had these symptoms but I have no deficits from them so far! I'm still running and I actually find that exercise helps my sensory symptoms, but my twitching gets much worse after a good workout. In my personal experience, I never worried too much about Als because I never felt weakness. I feel fatigue often but there is a big difference! Just to ease your mind, I was told by a neurologist that Als doesn't have symptoms except for they begin to "miss steps" or fall down the stairs because of significant weakness. They are usually brought in by worried family members because they feel no symptoms at all. Good luck to you.

 

[Dawn28]

I have all of these symptoms you've listed daily. Some days I barely notice them and some days I obsess on them all day. Vibrations, burning, twitching, fatigue... All of it. You are not alone