Go ahead and vent....

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

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

Re: Go ahead and vent....

Postby bobajojo on September 1st, 2012, 6:39 am

I need a good vent. My tongue and forearms have been driving me crazy lately! My tongue goes into frequent spasms on the left side. Its like its convulsing on the entire left side of my tongue, like pulling and contracting. Then last night, I had a rapid fire twitch on the other side. Like 20 pops in a row. I am constantly messing with my tongue... pinching it between my lips to check if its twitching, pressing it against the roof of my mouth, etc. Its like I forgot how to just rest my tongue in my mouth.

In addition to my tongue, my forearms are twitching constantly. They are tiny twitches and are barely felt but I can definitely feel them. Both arms. I can see the hairs on my foreamrs flickering because of the twitches. This has been happening on both arms since June. Will this crap ever calm down? Uggggh.. OK there, I needed that vent.
Over 10 billion twitches since May 2011.
User avatar
bobajojo
Saint
Saint
 
Posts: 1013
Joined: July 1st, 2011, 6:41 am

Re: Go ahead and vent....

Postby Snoookie on September 1st, 2012, 8:23 am

Freaking annoying tongue twitches .......... mainly left side tugs pulls ........... inner throat and upper rear palate twitches .......... tongue freeze not as in cold ............ annoying clicks at back of nose throat when lying down TRYIng to get to sleep ........... eye lids started again today ......... metallic taste and a cool menthol sensation in middle of tongue ............. i dont know why but i really fear tongue twitches i think i am over the worst fear of *** but they do still scare me, im working on it ........my other twitches i can have daily but not all day i can cope with those as there is some respite but the tongue ones have been my most persistent for the last 6 months ......... i feel they have been a bit less intense at times but they never just GO.......... I hate the fact it can be on my mind from the moment i wake ......because they can start immediately i wake up and unless i am completely absorbed in something i am constantly reminded .........i also keep pushing my tongue behind my teeth roof of mouth drawing on it...........i am so grateful to have found this site it has helped my sanity ...
Snoookie
Senior Member
Senior Member
 
Posts: 79
Joined: March 15th, 2012, 2:27 pm
Location: London uk

Re: Go ahead and vent....

Postby seventhcandle on September 4th, 2012, 2:02 pm

Good idea here Matt. I'd love to vent.

*Twitching brought on and incredibly exaggerated by medication. Not sure I'll ever be able to take anything to calm my nerves.
*24/7 twitching in feet, calves, and quads
*shin twitches
*muscle pain and some weakness
*twitching in butt and on both "cheeks"
*twiching in abdomen
*twitching on hips
*knee twitches
*weird throat twitches, including the feeling of an extra "lump" that clicks when I raise my head up
*toes twitch and move
*stomach twitching
*twitching in arms and frequent twitching in hands and shoulders
*finger twitching
*twitching all over back
*twitching in neck
*twitching in seven different places on my scalp
*twitching in eyes and eyelids
*nose twitching
*twitching on both cheeks (painful)
*lip twitching (upper and lower)
*tongue twitching
*ear twitching
*chest twitching
*hand twitching
*buzzing everywhere, even on tongue
*random thumpers, especially on cheeks, shoulders, arms, and legs
*frequent tinnitus
*non-stop myoclonic jerking and strong twitching at night (have had jerks in just about every imaginable place and sleep quality is terrible)

All this after three unisom, one ambien, and a vitamin supplement spaced out a few weeks apart.
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
User avatar
seventhcandle
Selfless giver of time
Selfless giver of time
 
Posts: 132
Joined: August 2nd, 2012, 2:11 pm
Location: Pleasanton, CA

Re: Go ahead and vent....

Postby bobajojo on September 9th, 2012, 8:31 pm

Crappy weekend with this *beep*. My tongue feels so fat in my mouth and is very sore and tired. I got nearly every type of tongue twitch this weekend. The pulling spasm type twitch was *beep* near constant but I also got flickers, zaps, machine gun twitches, etc. in every part of my tongue. My tongue and jaw also feel so tired at night. This is kind of new to me too and I'm not sure if its because I'm constantly messing with my tongue. Probably. But just a frustrating weekend.

On the good side, my forearm twitches seem to be better. Still there but less frequent. But I did start to get those little tugs between my thumb and index fingers pretty much all weekend. Ugggggh.
Over 10 billion twitches since May 2011.
User avatar
bobajojo
Saint
Saint
 
Posts: 1013
Joined: July 1st, 2011, 6:41 am

Re: Go ahead and vent....

Postby Jujulia on September 10th, 2012, 9:26 am

Welcome to the club, Matt! My tongue feels tired and sore almost all the time... never had that stuff during the first year of twtiching...

I was thinking about you this weekend because I've had a lot of pulling twitches on the left side of my tongue (almost underneath the tongue)... and I still have them. Did I ever say how much I hate the mouth symptoms? :x
Jujulia
Hero
Hero
 
Posts: 314
Joined: July 27th, 2011, 9:31 am

Re: Go ahead and vent....

Postby jerry2 on September 10th, 2012, 9:57 am

I hate how my hand atropy looks (not saying it is) worse, I hate I have now every morning an early morning twitching dance with hip twitch being the central bass and I hate it that I hear it like Bethowen's 5th simphony music :-(

I hate this days because my hands are tingling even by day and both my thumbs and other fingers have pain in joints/tendons/muscles. They also have muscle nerve kind of dull, but gnawing pain :-(

I HATE IT!
jerry2
Saint
Saint
 
Posts: 928
Joined: October 4th, 2011, 2:25 am
Location: Europe

Re: Go ahead and vent....

Postby bobajojo on October 20th, 2012, 6:48 am

I was playing in a poker tournament yesterday and I was sitting at the table and my body was just in super twitch mode. The inside of my palm was twitching in 3 spots in rapid succession. It was right smack in the middle of my palm and it looked like a firestorm. Then I flipped my hand over and the small muscles in between my knuckles were also twitching. THEN, I started getting machine gun twitches on the right side of my tongue and big thumpers in the fatty middle part of my tongue. This was all going on at the same time. In addition to these, my lip was twitching "Billy Idol" style, my right lower eyelid had those tiny twitches that never ever stop, my calves were going like they always do, and I had random "pops" about 1 every couple seconds somewhere else that I haven't mentioned. It was a very very bad BFS day for me.

I have to wonder what it was about yesterday that set me off like that? I have been staying away from coffee but I did have a large decaf about an hour before my body jacked up like this. I was also playing poker and there is that small amount of nervousness that comes with any competition. Maybe there was some caffeine in my coffee and it was a combo of the two. Who knows. So frustrating. This morning, I seemed to have calmed down slightly. I'm still getting more than normal twitching but my hand and tongue are not firing away like they were all day yesterday. Uggggh.
Over 10 billion twitches since May 2011.
User avatar
bobajojo
Saint
Saint
 
Posts: 1013
Joined: July 1st, 2011, 6:41 am

Re: Go ahead and vent....

Postby jerry2 on October 20th, 2012, 7:13 am

I really hate my slow first web space hand twitch which seems it doesn't want to go away. And I really don't like the doctor that told me this is not like BFS. I really don't like droctors who scare me.

I needed to vent today...
Last edited by jerry2 on October 20th, 2012, 11:23 am, edited 1 time in total.
jerry2
Saint
Saint
 
Posts: 928
Joined: October 4th, 2011, 2:25 am
Location: Europe

Re: Go ahead and vent....

Postby volfan on October 20th, 2012, 9:52 am

I feel like the self-confident girl in the car commercial who knows exactly what she wants in life until she has to pick the right car. Somedays I hate the little twitches the most (the small, rapid fire ones), the next day I hate the big ones that almost make the spot they are twitching in feel sore, then the numbness gets on my nerves, then I think "no, it is the stiffness - I hate that", then.....

Then I think I am happy to be alive and able to vent.
volfan
Selfless giver of time
Selfless giver of time
 
Posts: 173
Joined: February 7th, 2012, 8:50 am
Location: California

Re: Go ahead and vent....

Postby DreaCerda on October 31st, 2012, 2:52 am

Leg stiffness is kicking my a-double-s on a daily. Twitches and vibrations, meh...I've gotten used to those. They don't bother me much. But I'm with you all on the tongue and mouth issues. The menthol description that someone described earlier in this thread? I get that crap every, single day. My mouth issues are the only thing that freak me out in regards to ***. I've had this since March and I feel like if I did have ***, something else would have happened by now. Foot drop, atrophy of some kind, a non functioning finger or some sh*t. But that tongue stuff can really screw with a person's mind, I'll tell ya. And I start wondering if 7 or 8 months is a significant enough time frame.
Fat tongue, crampy tongue, lazy tongue, itchy tongue, twitchy tongue. If it's not scaring me, it's annoying me. If it's not annoying me, it's scaring me. *sigh*
I need my one year 'anniversary' to hurry up and get here so I can let this stuff go entirely....
User avatar
DreaCerda
New Member
New Member
 
Posts: 3
Joined: April 17th, 2012, 10:23 pm
Location: Fresno, California

Re: Go ahead and vent....

Postby bobajojo on June 27th, 2013, 12:16 pm

Having an extra twitchy day today. Not sure why. I felt my tongue twitching and made the mistake of looking at it with a flashlight while my tongue was rested on the floor of my mouth. Immediately saw a big lightning bolt twitch in the middle (couldn't feel it) followed by other smaller lightning bolts on both sides and way in the back. I counted 7 in a two minute span. That was a few hours ago and I've been feeling them ever since. Big ones on both sides and the pulling twitch up front. Uggggggh. -Matt
Over 10 billion twitches since May 2011.
User avatar
bobajojo
Saint
Saint
 
Posts: 1013
Joined: July 1st, 2011, 6:41 am

Re: Go ahead and vent....

Postby volfan on June 30th, 2013, 11:07 pm

Hey Matt --- I find it interesting that there are days we still just need to vent - no matter how long this has been going on! It varies for me what gets under my skin (no pun intended) but face or tongue twitching always bothers me. Leg and foot cramps do too. I tell myself to just let it go, let it go. And while I really just slap myself so I don't worry, I do get *beep* off at it all. You just can't help but get sick of it, huh?
volfan
Selfless giver of time
Selfless giver of time
 
Posts: 173
Joined: February 7th, 2012, 8:50 am
Location: California

Re: Go ahead and vent....

Postby missingoutonlife on July 1st, 2013, 5:01 pm

Hey Matt, I get a twitch in my tongue that pulls the whole left side up too. I've been having that for over 4 years now. However, I'm feeling my own need to vent. I've relapsed with my anxiety fears due to a constant thenar twitch, can see it but can't feel it. I'm also having severe throat spasms. They started in April, lasted a short bit and were gone. Then they were back mid May with a vengeance, haven't left since. Some days are better than others. The worst is when they happen when I'm eating. My whole throat gets tight and I feel the food won't go down. It's very terrifying. Sometimes I feel like maybe my uvula, palate, upper throat, and lower throat are tightening and twitching too. It's an awful, awful sensation. I feel like my throat and palate are getting paralyzed at times. After 5 years and nearly 5 months of this, I should be an old pro. I used to think I had a handle on it for 3 years but not right now. :(
Twitching since February 2008
missingoutonlife
Selfless giver of time
Selfless giver of time
 
Posts: 125
Joined: February 22nd, 2008, 9:47 pm

Re: Go ahead and vent....

Postby anita on July 3rd, 2013, 8:01 am

What a great idea to vent!
I've been doing it rough lately. I haven't posted in a while because I feel my case is somehow different. I get all the twitches and all that comes with it (fatigue, tremors, buzzing, joint pain, joint crepitus, hyperreflexia) and more. I call myself BFS plus syndrome. So here it is:
- twitches everywhere, constant in the calves, but what really drives me mad are the tongue ones
- Raynaud's are getting worse; very difficult to control the ones in the feet, which are painful too (my Raynaud's preceded the fasciculations by about a month or so)
- hair loss, this is getting worse too
It all started just over a year ago and it's only getting worse. I have no answers and don't know what to expect, other than depression!
Anita
anita
Member
Member
 
Posts: 38
Joined: February 7th, 2013, 7:11 am

Re: Go ahead and vent....

Postby TwitchyMark on July 3rd, 2013, 11:20 am

I had cold hands and feet and even my nose when everything went full blown last Fall. I was thinking thyroid disease with all the crazy symptoms. I had no hair loss or weight problems though. TSH tested ok and that was as far as they went. Eventually, most everything subsided and now I mainly just twitch in my legs. I hope you get better soon.

Mark
TwitchyMark
Senior Member
Senior Member
 
Posts: 97
Joined: April 29th, 2013, 4:24 pm

Re: Go ahead and vent....

Sponsor

Sponsor
 

Previous

Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 4 guests