BFS for a year, now I really need help.

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

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BFS for a year, now I really need help.

Postby distephano87 on May 28th, 2013, 4:06 pm

Hello! I've been twitching for almost a year and a half, but the past two months have been a downward spiral for me. I'm trying to see the light at the end of the tunnel, but every day it's something new. Just looking for some advice, or comfort.

So a little about me. I'm a 25 y/o male, heavyset, started twitching in february 2012. It was pretty bad then, global twitching, globus, pain, numbness, anxiety (courtesy of dr. google). I saw my PCP once, a neuro once and got an EMG. Completely clean. They all told me I was fine, and after a while I was able to believe it. My symptoms virutally disappeared, except for my calves which I just stopped paying attention to. I had some back pain earlier this year, but an X-Ray didn't show anything out of the ordinary.

About two months ago I noticed some pain in my shoulder. I had been dieting pretty hard and I thought maybe it was atrophy due to lack of nutrition. But then my mind wandered... and I started constantly gripping my arms, I dunno, to test my muscle mass, which made them hurt, which caused more anxiety... it opened the flood gates.

In the following weeks my globus was back full force. It's still with me two months later. I started straining my neck, looking for differences in my neck cords. They are quite asymmetrical, not sure if this is normal. My legs started twitching without mercy. It spread to my feet and hands for the first time in a year. In fact I don't think I'd ever had them in my feet but now it's full force, and I have a fairly constant numbness / vibration in my furthest left two toes, though this occasionally spreads to other toes and my right foot. My feet constantly twitch, deep down, like a vibrating feeling, especially after I flex my toes. This troubles me more than anything.

I thought I noticed atrophy in my left calf when flexed, a pretty big dent. But this is probably stupid, because if my calf were already atrophying, I wouldn't be able to walk, right?

So then I started getting cramps. I get cramps in my hands pretty regularly, especially this last week. Even if it's something as trivial as eating, I can feel my hand start to cramp after holding the fork for a little bit. The same when I try to play through a song on guitar hero, something I used to regularly. I started testing the dexterity of my fingers, completely OCD, trying to press a chip clip (a pretty strong one) between my fingers and my thumb. I was especially concerned about my pinkies. Which unsurprisingly, seemed to get stronger after I did this over a period of time. But the cramps in my hands are new, and they have me terrified.

Also, now when I sleep on my stomach (which I try not to, but sometimes it happens) my pinky and ring finger on either hand (whichever one I accidentally sleep on) go completely numb and can't be moved laterally. This seems to correct itself if I lay my hand over the bed for a few seconds, feeling and movement return. I've had carpal tunnel issues in the past, I play a lot of video games and use my laptop a lot (not often in the most ergonomic position), and work constantly require fairly fine use of my hands. So I'm hoping all those finger strength tests I was doing aggravated this condition, but I've never heard of that happening before and it's definitely never happened to me.

Okay, the last stupid thing. Last week I noticed the right side of my neck getting very tight. This seemed to spread around my neck throughout the day, but the right side of my neck looks considerably less formidable when I flex my neck cords, so this had me worried. I've started feeling fasics in my neck. That, coupled with globus sensations and difficulty swallowing... well, you know what I feared. I applied bengay, seemed to help. Today it feels better than it has been, so there's a bright side. I hope it continues to get better.

I went in to see my PCP this past tuesday. He did a pretty basic neuro exam, had me walk on my toes, squeeze his finger, etc, and he said what I expected to hear, but didn't want to hear: anxiety. Actually, depression with anxiety. So he's got me on a new antidepressant which has improved my mood when I'm able to get fear out of my head by busying myself at work. He said he's had a lot of MS / ALS patients and I'm just not presenting the issues they have. I trust him, he's a good doctor, but you know how much you can fear when your body is telling you something you have no answer for. When it keeps getting worse but all you want to do is feel better...

I guess I'm just looking for re-assurance that this normal. I haven't noticed any significant weakness, general fatigue and cramps, sure, but when called upon to make any muscle movement, I can do it just fine. Like so many of us, I fear the unknown. I hope you guys can share some advice, or even just tell me it's normal. Thanks for letting me rant, and thanks for understanding.

-Jared

TL;DR: Been twitching for a year+, got better. Anxiety returned, symptoms returned worse than ever. Hand cramping, buzzing in my toes, neck twitches/fatigue, neck asymmetry, pinky and ring finger go dead when I sleep, terrified. Looking for love.
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Re: BFS for a year, now I really need help.

Postby aztwitchy on May 28th, 2013, 5:04 pm

distephano87 wrote:Hello! I've been twitching for almost a year and a half, but the past two months have been a downward spiral for me. I'm trying to see the light at the end of the tunnel, but every day it's something new. Just looking for some advice, or comfort.

So a little about me. I'm a 25 y/o male, heavyset, started twitching in february 2012. It was pretty bad then, global twitching, globus, pain, numbness, anxiety (courtesy of dr. google). I saw my PCP once, a neuro once and got an EMG. Completely clean. They all told me I was fine, and after a while I was able to believe it. My symptoms virutally disappeared, except for my calves which I just stopped paying attention to. I had some back pain earlier this year, but an X-Ray didn't show anything out of the ordinary.

About two months ago I noticed some pain in my shoulder. I had been dieting pretty hard and I thought maybe it was atrophy due to lack of nutrition. But then my mind wandered... and I started constantly gripping my arms, I dunno, to test my muscle mass, which made them hurt, which caused more anxiety... it opened the flood gates.

In the following weeks my globus was back full force. It's still with me two months later. I started straining my neck, looking for differences in my neck cords. They are quite asymmetrical, not sure if this is normal. My legs started twitching without mercy. It spread to my feet and hands for the first time in a year. In fact I don't think I'd ever had them in my feet but now it's full force, and I have a fairly constant numbness / vibration in my furthest left two toes, though this occasionally spreads to other toes and my right foot. My feet constantly twitch, deep down, like a vibrating feeling, especially after I flex my toes. This troubles me more than anything.

I thought I noticed atrophy in my left calf when flexed, a pretty big dent. But this is probably stupid, because if my calf were already atrophying, I wouldn't be able to walk, right?

So then I started getting cramps. I get cramps in my hands pretty regularly, especially this last week. Even if it's something as trivial as eating, I can feel my hand start to cramp after holding the fork for a little bit. The same when I try to play through a song on guitar hero, something I used to regularly. I started testing the dexterity of my fingers, completely OCD, trying to press a chip clip (a pretty strong one) between my fingers and my thumb. I was especially concerned about my pinkies. Which unsurprisingly, seemed to get stronger after I did this over a period of time. But the cramps in my hands are new, and they have me terrified.

Also, now when I sleep on my stomach (which I try not to, but sometimes it happens) my pinky and ring finger on either hand (whichever one I accidentally sleep on) go completely numb and can't be moved laterally. This seems to correct itself if I lay my hand over the bed for a few seconds, feeling and movement return. I've had carpal tunnel issues in the past, I play a lot of video games and use my laptop a lot (not often in the most ergonomic position), and work constantly require fairly fine use of my hands. So I'm hoping all those finger strength tests I was doing aggravated this condition, but I've never heard of that happening before and it's definitely never happened to me.

Okay, the last stupid thing. Last week I noticed the right side of my neck getting very tight. This seemed to spread around my neck throughout the day, but the right side of my neck looks considerably less formidable when I flex my neck cords, so this had me worried. I've started feeling fasics in my neck. That, coupled with globus sensations and difficulty swallowing... well, you know what I feared. I applied bengay, seemed to help. Today it feels better than it has been, so there's a bright side. I hope it continues to get better.

I went in to see my PCP this past tuesday. He did a pretty basic neuro exam, had me walk on my toes, squeeze his finger, etc, and he said what I expected to hear, but didn't want to hear: anxiety. Actually, depression with anxiety. So he's got me on a new antidepressant which has improved my mood when I'm able to get fear out of my head by busying myself at work. He said he's had a lot of MS / ALS patients and I'm just not presenting the issues they have. I trust him, he's a good doctor, but you know how much you can fear when your body is telling you something you have no answer for. When it keeps getting worse but all you want to do is feel better...

I guess I'm just looking for re-assurance that this normal. I haven't noticed any significant weakness, general fatigue and cramps, sure, but when called upon to make any muscle movement, I can do it just fine. Like so many of us, I fear the unknown. I hope you guys can share some advice, or even just tell me it's normal. Thanks for letting me rant, and thanks for understanding.

-Jared

TL;DR: Been twitching for a year+, got better. Anxiety returned, symptoms returned worse than ever. Hand cramping, buzzing in my toes, neck twitches/fatigue, neck asymmetry, pinky and ring finger go dead when I sleep, terrified. Looking for love.


Hey Jared,

what medication did he put you on if you don't mind me asking?

an xray to rule out back issues is laughable....they should have sent you for an MRI. Disc issues can be at play still....you may want to pursue that. xrays won't really show disc or spinal cord integrity. Also do you remember when\how all this started? were you taking medications, vaccine, sudden sickness etc? just curious.
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: BFS for a year, now I really need help.

Postby RGB on May 28th, 2013, 6:20 pm

Interested why you "didn't want to hear" anxiety? It sure sounds like anxiety, or least a whole heap of anxiety piled on top of a non-lethal (non ALS etc) underlying condition.

I started straining my neck, looking for differences in my neck cords. They are quite asymmetrical, not sure if this is normal.


Straining your neck cords or the asymmetry ? :) I don't mean to offend/belittle what you are going through but if it is any reassurance at all then it really does read like you are obsessing over symptoms that if anything are something relatively minor (relative to what you fear anyway). You say you trust your doctor, as difficult as it is he is the one to listen to (much better than me, this board, or your own anxious mind).

I Hope you feel better soon, both the physical symptoms and anxiety sound like unpleasant. <- See, that's a little love ;)

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: BFS for a year, now I really need help.

Postby chrissi on May 29th, 2013, 2:56 am

What happened? Your shoulder pain led you to thoughts of atrophy (yeah right, the first thing to think about when pain pops up anywhere is ATROPHY :wink: ..)which threw you back into an anxiety cycle with all its nice BFS flare up side effects. I bet anything your anxiety increased your breathing and involuntarily tensed up your muscles and - Bam- there we are. BFS flare up at its best.

Next steps: 1. Realize that there's a link between your anxiety starting point and the flare up of your symptoms. 2. Accept the fact that your mind cannot control this right now, so you have to sit that flare up out a bit. 3. Calm down your mind and hopefully your body.

Go for relaxation methods and some light exercise and GET DISTRACTED. Go on with your life. The physical symptoms will very likely last longer than the anxiety attack, because the body is VERY fast in adapting to this fight or flight mode, but very slooooooooooooow in letting loose. You can speed this a bit up with muscle relaxation exercise and especially breathing exercise, but this is not the "Stop button" for it.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: BFS for a year, now I really need help.

Postby TwitchyMark on May 29th, 2013, 8:31 pm

This should be your mantra of solace now... My symptoms DO NOT fit the dreaded disease (s), they come and go, they are truly benign.

Believe me, I would never poo poo what you are feeling cuz I've felt it all myself and it was/is real. But some of it was blown out of proportion or twisted in my mind. Like atrophy or weakness that simply is not there. We know that "feels like" this or "looks like" that are usually not reality. That is the anxiety aspect that can be the biggest debilitating part of all this. I've had the hand cramping too. It goes away. :)

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Re: BFS for a year, now I really need help.

Postby sibelius on May 30th, 2013, 10:58 pm

You've gotten some very good advice. After a year of BFS I realized I had a choice. I could continue to suffer incredible anxiety over this benign condition or I could attempt to live the rest of my life productively. I decided wasting a year of my life was enough already. No more Dr.google. No more constantly testing out muscle strength. No more doubting professionals and thinking I was the exception to the rule. Make peace with your condition and move on. While I understand the anxiety of BFS I think we should realize that much of this is self-inflicted. Many of us have hyper sensitive immune systems and tend to be hypochondriacs. There are many people out there diagnosed with actual terminal illnesses. In the grand scheme of things we don't have that much to complain about. Sorry for the tough love approach but if you had a serious neurological disease you would have known it by now.
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Re: BFS for a year, now I really need help.

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