Finding Comfort in Community

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arcanepuppet

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This is my first post. Let me just preface by saying how thankful I am to have found this site. Tribulations are a lot less daunting when you have company. My signs/symptoms:-Body wide twitching-Buzzing in both my legs-Tinnitus-TMJ-Brisk knee reflexesI have been twitching since I was 11 or so but it would only happen once or twice a week. It was never a major nuisance or anything. However, a little over a year ago, I started feeling a buzzing feeling in my right calf along with persistent body wide muscle twitching. The twitching didn’t bother my nearly as much as the strange buzzing sensation in constantly felt in my calf. I had a feeling the two were related so I googled ‘twitching’ and you can all guess what popped up. Dread washed over me. I couldn’t function for three months after that sunny day in May. During my terror trip, I visited 3 GPs, 2 neuros and a rheumatologist. I had countless blood and urine tests, MRIs of both my brain and my spine, and a CT scan of my brain. Nothing ominous was found yet the doctors offered no relief for my symptoms. I was on an SSRI for 4 months and took benzos periodically. The drugs helped a great deal with the accompanying anxiety but did little for my bfs. The neuros said I had brisk knee reflexes but they weren’t too concerned since they were symmetrical. One of them attributed it to anxiety. I tried taking supplements (magnesium, zinc, potassium, calcium and st john’s wort) – but to no avail. I still twitch and buzz after a month but I’m no longer worried about MS and ALS (though I never worried too much about ALS and neither should anyone in this forum). That being said, I still yearn to get rid of these strange physical feelings and the accompanying anxiety. I’ve tried to ignore it but it only seems to make things worse. I’ve read a few posts of people recovering from their BFS after a year or two but I’m under the impression that BFS won’t relent for the majority of the people on this site. I’m most disturbed by my symptoms at night since I can hear my tinnitus loud and clear and really feel the buzzing in my legs. I’m just curious, how many other people suffer from tinnitus and have brisk reflexes as well? If anyone has any tips on coping or managing symptoms, please give me a shout out. A
 
hey there your story sounds almost exactly like mine I have ringing in ears and body wide twitching as well as buzzing in my calfs that drives me crazy Had this for over ten months now ...and been checked out thouroghly my diagnosis is BFS your not alone friend welcome here
 
My signs/symptoms:-Body wide twitching-Tinnitus-TMJ-Carpal Tunnel Syndrome in both handsMy list is above - pretty similar to you. The tinnitus I have is not very often - about once every 3 days I'll hear a high pitched whine. I just ignore it and it goes away after a few minutes.The TMJ is a real chore right now. It gets better and worse - I remember about a month ago I was eating a sandwich from Subway and I could only eat half of it before my jaw was really, really tired. Then the next day and for the next two weeks I was almost completely fine. Then the tired jaw comes back when talking, chewing, etc. It's different every day but it's definitely gotten worse since I've become fixated on it. My lip has even been slightly swollen for the last 8 months too which I found that TMJ can cause facial swelling as well. (google tmj edema).
 
Thanks for adding your story to our community here. You are right that feeling less alone is a huge help with this stuff. My symptoms started in July 08 with a buzzing/vibration feeling behind my left knee and top of left calf. The twitching started soon after and soon went bodywide where it remains today. I was given 330 mgs of levocarnitine tablets to take three times a week and I believe this has helped me. You might want to give it a try if your doctors approve. I had no side effects from it. I felt enough relief after three or four months (it took this long to notice any improvement) to decrease my Klonopin dose in half. If you don't mind sharing, I would be interested in the nature and extent of you bodywide twitches. I often wonder how much alike and different we all are. I get twitches under my arm pits, back, forearms, biceps, quads, calves (of course), lips, eyes, tongue (I hate this one). These twitches when felt can sometimes be seen if I look quickly and then last for a few seconds. They are most noticeable when resting.
 
Thanks for the quick responses everyone!I'm surprised so many others suffer from tinnitus as well. I wonder if it has any relation to bfs. I personally think it does since I find that the more my ears ring, the more I buzz. In terms of the 'extent of my twitching', I probably twitch about 30 - 40 times a day on average. Not much compared to those who twitch 100 times. I feel them everywhere (thought I've never felt them on my tongue). I mostly feel them on my legs and arms. Usually one body part will twitch 4 or 5 times then stop. Sometimes though, I'll have a body part twitch virtually non stop all day for a day or two. But if I could just to get rid of just one symptom, it would be the buzzing in my legs. It is by far my most disturbing and consistent symptom. There are times where it feels less intense, though that may just be due to my perception. In terms of drugs, I asked my neuro if he thinks I should go on gabapentin and he said 'no'. He said that he suffers from BFS as well and that there is no treatment for it as of yet. Thanks again,Amir
 
Thanks for the additional details. How interesting about your doctor having bfs too. You are not the first to have run across that situation. I'm guessing that as long as these types of symptoms are relatively mild the only people that talk to the doctor about them are those that are worry prone and those knowledgeable about medicine. This is why the condition is probably a lot more common that officially reported.
 
hey Krackersones my bfs started also with a intermittent buzz in my left calf right behind my knee lasted 7 days then came the weird sensations little flutters or whatever all over tiny twitches maybe?? arms legs head then came the bigger twitches one or two pops here and there all day then sometimes they would twitch for a few minutes then be gone that was ten months ago now they are alot stronger twitches everywhere head hands feet butt legs eyelids I also now get joint pain mainly in left leg neck fatigue etc is that pretty close to how your symptoms developed if so I would like to know more
 
Hi, welcome to the site I am a relative new 'recruit' ( or maybe draftee!) having had this BFS crap for about 6 months. Time will make things better, so hang in there! I must ask yourself and 'J Crissman' about this jaw thing. I get episodes when my jaw gets really sore, so to eat it actually aches ( both sides). It comes and goes. Have just dealt with it, but have always wondered why. It's like I have given it a workout eating beef jerky all day, without the pleasure! Maybe I have this TMG thing as well. Do the symptoms sound the same? Would appreciates any experiences.cheers and good luck!Rodger
 
Bodywide twitchingcarpal tunnel (both hands)periphrial Neuropathy (mild)Tinninus Started about 2 months ago, freakin hate it.I was eating some beef jerky a couple of days ago, and my jaw got very tired after about 10 minutes. Jerky was tough, but dang, Ive been exercising those muscles for 45 years. It has to all be related. Its the ringing in my ears and headaches that got me a bit worried now. I got past my A.. scare just to replace it with a brain tumor concern. Neuro seems a bit concerned though too. MRI of brain on Friday.
 
Hi chief I get the tired jaw feeling as well also weird feeling in tongue like tight and stumble on words but its all just BfS they should call this stuff BS cause thats what it is is bull Sh&&
 
Aussie if you have aching pain in both sides of your jaw, you very likely have TMJ (aka TMJD). It's painful but benign so don't fear googling it. Jaw pain is the defining symtpm of TMJ. Other symptoms that can happen (but not experienced by all TMJ sufferers) are jaw popping noises, misaligned jaw, headaches, tired jaw when chewing, facial swelling, difficulty or pain when opening mouth widely and a few others.I don't think TMJ is directly related to BFS but it's indirectly related because both (in my opinion) are at least exasperated if not caused by stress and anxiety.
 

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