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Benign Fasciculation Syndrome and TMS

Discussion in 'General Discussion Subforum' started by Joe Boast, Nov 12, 2013.

  1. srobert1

    srobert1 Newcomer

    mdh157 that was a fantastic response and I totally agree. Hello everyone, I am new to the forum and I have been reading a large majority of you guys responses about BFS and can relate to all of you. I have had the diagnosis of BFS for 15 years. It started when I was in high school 15 years of age as I remember like it was yesterday. My first twitch ever was my R hand 5th finger (pinky) and at first I was surprised and amazed. However, soon after I began experiencing intense twitching every place you can possible imagine from my head to my toes. At the time I to had EMG test completed with proved negative for and nerve damage and at the time just diagnosed me to be going through a growth spurt lol. Twitches progressed with the hope they would cease but never did. For me college was very intense and it seems the common factor for most of us is stress and anxiety. The kicker for me is that I am an extremely organized person and felt that I relatively had no stress thus keeping to do list and a prioritized order to execute each task. As I have matured (now 30), I have really learned my body throughout the years and have realized that despite my organization I truly am stressed. I do not take any medication and simply take a multi vitamin daily. I use to be down on myself because I do not know not one person who does not have some level of stress but somehow we are the lucky few for out body to not fully understand how to channel stress and anxiety and it expresses this through relentless annoying muscle twitches. I do make certain that I complete my activities that can help me to live a more stress free life like daily exercise to name one. I also have noticed that my body needs more hydration than my family friends whether exercising or not and I feel this helps me some as well. I have noticed the more dehydrated I am (like having a day of fun at the pool last summer) really puts me in a bad predicament for twitching the following days. I am continuing to learn my body and make adjustments but still have some bad days and better days. Sleeping is definitely tough most of the time but meditation has been my new hobby and has helped me gain better nights of sleep. I do believe that one day I wont experience a single twitch and I can feel normal like I did prior to 15 years of age. However, I will not let BFS defeat me. I hope I helped someone with my experience because you guys I have helped me express a secret that 95% of ppl I am affiliated with don’t know about me.
     
  2. desertdahlia

    desertdahlia Newcomer

    Hi everyone, I'm new to this site and am glad I found it. My story is similar to some of yours, at least as far as anxiety and stress triggering onset of symptoms. I'm finishing up my dissertation and PhD, made a move from one city to another in the midst of a pandemic, on the tails of a stressful experience on the job market, husband starting a new job, etc etc. After coming down with a stomach bug that sent me to urgent care, I developed muscle twitches that occurred at first sporadically and then developed into body-wide twitches over a two-week period or so and simply haven't stopped for about four weeks now.

    As with others on this forum, Dr. Google has done more harm than good, at least from a mental health standpoint. In addition, I'm finding it to be nearly impossible to get a physician to take me seriously, and seeing someone in person seems to be out of the question with every clinic I call due to the current public health crisis. When this all started, I also had pins and needles, dizziness, vertigo, tinnitus, anxiety attacks, and a host of other unpleasant symptoms over the entire month of April. After an initial web search, I remembered that back in October 2019 I'd had a blood test done for some other unrelated issue, which uncovered a b-12 deficiency that needed to be treated with supplements. At the time, I was in the midst of a hectic month of job interviews and conferences, and I simply forgot to take the supplements. When I realized I had neglected to treat the b-12 deficiency, I went out and got supplements and started them, and saw improvement with the numbness/tingling and anxiety attacks almost immediately.

    The twitches are still here, though, and causing a ton of worry and stress. I've had "tele-visits" with my primary care physician in my old city, who suggested I see a neurologist. I had a televisit with a primary care physician here locally as well, who ordered labs that looked "excellent," according to the front desk, who relayed that information to me. Evidently I am so far down on the priority list that I don't even merit a phone call from the doctor herself in order to deliver follow-up instructions. I tried identifying a good neurologist locally to make an appointment, and have been trying all week to set up a tele-visit with a provider there. The woman at the front desk is overwhelmed and hostile...these feelings of frustration and dismissal are definitely not helping things, but I am glad to have found a forum that puts some of my symptoms into perspective. Trying to keep myself from imagining symptoms that aren't there and focus on something productive, outside of the way I'm feeling.
     
  3. Rene100

    Rene100 New Member

    Yes. I am a healthcare worker. My life story is horrific....won't get I to that right now.
    I devoted years of my life to jobs only to be brutally bullied as I am petite...female...no family (so looked as an albatross to all the "house with 2 kids...a cottage...3 cars...pets etc".
    I don't have these things as from a young age I was told I should be dead by my mother....as I said I have a horror story but for another time.
    So about 3 yrs ago after a bully (lied about me to a doctor I worked for) caused me a job loss and I was...once again...about to loose my apartment.....I started having HORRIFIC leg/back/chest/ stomack/ arm/face spasms.....they were excruciating.
    I couldn't sleep as when I lay down my body spasmed.
    As a medical/clinical assistant for years...I was sure I had brain tumour...or MS.
    AND....as usual...I was going thru it alone (I had family but they rich and told me I was a low class failure and left me suffering alone).
    So.....luckily due to my education j did TONS of research while getting TONS medical tests. ....this went on 6 months.
    Then...it was ME....not my doctor (figure that one out) that found a RARE condition : Cramp Fascllation Syndrome .
    I was seeing a world renowned neurologist.....fast fwd:
    He said this co dition is IDIOPATHIC is THEY DONT KNOW WHAT CAUSES IT.
    he found out more about the abusive life I had and actually told me he himself had seen patients who suffered severe trauma go into seizures.....and CFS was a precursor!!!! This scared the poo out of me but again...my background helped and I knew the brain could mess up your body with psychosomatic illness.
    Fast fwd more....discovered Dr. Sarno teachings and 6 months after that 90 percent cramps GONE.
    So in answer to you my friend...YES ABSOLUTELY THIS CONDITION IS EMOTIONALLY BASED!
     
  4. Drew

    Drew New Member


    HEY @Pandagirl
    Would it be possible to talk to you directly. I have crps and neuropathic pain as well for last 3-4 years and what crazy I have seen some amazing improvement when I just pushed myself at the gym and became very active and got busy in life the pain subsided. The neuropathic pain was always mainly in my legs and certain times in last two years I have been working out like an athlete doing lunges, squats upto 200lbs, step up, leg press upto 500 lbs and a lot of biking and cardio. But last 4 months all neuropathic pain has come back with a vengeance and not just in legs but all over especially the burning skin, tingling, electric shocks, cold water feeling, fire ants biting crawling, you name it and I have that neuropathic symptoms. I had these nerve symptoms before too but they slowly faded I even travelled all around Europe and went to 16 counties on my own working out going to bars having a great time. But last 3 months my mom visited I panicked to her about still getting these symptoms and more I panicked it’s like everything came back and then we went and met 3-4 more doctors and the more I explained my old symptoms it’s like my brain was listening and I have debilitating pain in legs and all nerve symptoms back all the time, the nerve sensitivity and when my mom was still here my full body was having nerve symptoms shocks tingling burning, it was like in just the 3 weeks she was here the more I focused and panicked about my problems it just kept intensifying and now I almost feel like a cripple in just last two months. It’s astonishing to see I was lifting 200 lbs squats and doing Such hard workout again thinking I’m mostly past it with most of my nerve symptoms restricted to stressful times or night time while sleeping or in morning to now them being there 24/7 and some days I can’t even walk. When I started getting better 2 years ago I couldn’t walk anymore so I forced myself to Walk 10-15 miles everyday, I couldn’t wear jeans or any clothing pretty much would cause sensivity pain in knees classic CRPS allodynia sign. I have been overly obsessing and spending about 10-15 hours on forums everyday since this relapse and everytime I have to explain my stmptoms even right now as I’m writing I can feeling them Going up and up. If I pick up and call mom n dad and vent or start getting sad or panicky the symptoms go up 100 times but if I don’t call them every morning I wake up with full body burning tingling and every nerve symptoms everywhere. I can’t belive just 7 months ago I was dancing in Ireland and running around in Barcelona and here I am restricted to my bed unable to do anything and because of wrtiting and explaining my symptoms to so many people over the last 2 months it’s like every single one of them is back which I thought I had forgotten or loved past from. It’s like my nerves are so hyper and nervous system can’t seem to turn off anymore.
    @jax7772
    I get twitching too but mainly burnin tingling pins and needles prickly sensations and electric shocks in legs all over but if I panic or talk/think about it more and moreover starts to spread in upper body too. I have sooo many conditioned responses especially to different clothes. I got better for 2 years and felt I was fine again but this year started panicking again and saw a bunch of doctors in Feb. and since then have been in the worst shape ever the legs now are always on fire or having parasthesia sensations. If I’m able to control it by focusing on other things then it’ll hit me in the morning first thing and then be there whole day or days after. So frustrating and disheartening that I got this all again worse than ever. Kindly advise
     
  5. Drew

    Drew New Member

    @Jax7722
    get twitching too but mainly burnin tingling pins and needles prickly sensations and electric shocks in legs all over but if I panic or talk/think about it more and moreover starts to spread in upper body too. I have sooo many conditioned responses especially to different clothes. I got better for 2 years and felt I was fine again but this year started panicking again and saw a bunch of doctors in Feb. and since then have been in the worst shape ever the legs now are always on fire or having parasthesia sensations. If I’m able to control it by focusing on other things then it’ll hit me in the morning first thing and then be there whole day or days after. So frustrating and disheartening that I got this all again worse than ever. Kindly advise
     

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