Here I am again ...

General Topics

Moderators: JohnV, Arron, garym

Here I am again ...

Postby will97 on March 27th, 2015, 12:10 pm

Hi guys,

It’s been a while since I have written here … there have been a few times where I was close to posting but I tried hanging in there and waiting for the storm to pass. However, today I feel like the storm is here to stay and I am having a hard time dealing with all this.

It’s been about 2 months that my left deltoid area has been having deep inner twitches, it’s so annoying but I usually mostly feel them when I am sitting or lying down. Now added to that, for that last couple of weeks (2-3) my quad muscle on my right leg (right on the outer side of the knee area) has been twitching daily (on and off) the twitches are kind of like sucking in the muscle and then releasing and twitching … these happen mostly when I am standing up and at times when I am sitting. And now to add to this, the top of my right forearm has been twitching for the last 2 weeks … I had never had forearm twitching before but I must say that its quite annoying … it’s like if the muscle is being sucked in and then released … I feel this mostly when I put some weight on my forearm (like if I am holding my head up with my right arm or when I am working and my forearm is laid against my desk or even when my arms are crossed. I dont feel them all the time and even think that they are gone at times but they are not ... its just that I feel and see them better when my arm has weight put on it (like if I lay it on my desk or a hard surface) ...

I have done many searches in the forum, and read many posts by other members and all but still I am not feeling great and I am quite frightened … I don’t know why this happens to me (and others I presume) … I have been twitching for about 3 years now … had a few EMG’s done and all seemed fine (last EMG done in October 2014) … but I am still so afraid of that dreaded disease … I am having a hard time coping with all of this again … I truly feel lost and alone at times which is not good … I don’t want to burden my wife with this again, I think she’s kind of had enough hearing me complain about my twitches and I know that it has been hard on her seeing me this way as well and I am trying to stay strong because I want to be a string father to my 4.5 year old son as well … the neurologist keeps on saying that its BFS but I am struggling with that … I go through phases where I think I am doing ok and that this is BFS, deal with it and don’t let it bother you … and then bam!!! I’m back looking at my multiple twitches and feeling thumpers, vibrations, jerks and twitches within my body and I can feel things changing in me … more cramps, tightness in my muscles, hands and feet … I have buzzing in my face, lips, inside my mouth, tongue and ears …

Do you guys relate to what I am saying? I feel like I am beginning my nightmare again and I don’t want to go down that road again … but if I am writing here again it’s because I know that this is my last step before I slip again … I don’t know what to do … I try and try and try to relax and stay calm and tell myself, tomorrow they will be gone and you will be ok … but it’s just not working anymore …

I remember reading so many things on the internet about symptoms, how things start, etc… so it’s hard to ask the brain to forget these harsh things I have read … but if I am not mistaken, with *ls you are not supposed to have twitches in multiple areas like I do right? (like I have now in my right Quad muscle , near the knee; and also in the forearm like I have now) … or am I wrong on this as well …

Thanks for reading me and for your support guys … I really need some positive things and stories right now … can anyone relate to what I am feeling right now, the multiple and deep twitches in forearm and knee area and also is it normal to twitch so long and at more than one area and that the twitches feel more like suctions being pulled in and released? And that this is all happening at the same time?

I feel so lost and scared … and *beep* I hate feeling like this!!!

Have a good day and thanks for responding,

Will
will97
Senior Member
Senior Member
 
Posts: 70
Joined: August 12th, 2012, 10:32 pm

Re: Here I am again ...

Postby bobajojo on March 27th, 2015, 3:15 pm

Hey Will,

You may have come across my posts on here. I've been twitching for 4 years. In the first year, it was nonstop in my calves with random 'pops' elsewhere. NOW, 4 years later, I'm a human popcorn machine. I have multiple fibers in multiple muscles going off 24/7 with no let up at all. I'm on 1800 mgs of gabapentin daily and its not really doing squat. Here are some recent videos to show you the extent of my twitching. The key here is that I just requested another EMG last November which was 3.5 years into this madness. As my neuro expected, it was perfectly clean. Relax, twitching without loss of function is benign. Doesn't matter what it looks like, how frequent it is, how many muscles simultaneously, etc. I hope this helps. -Matt

https://www.youtube.com/watch?v=doMswcP8kkU
https://www.youtube.com/watch?v=9lTfkeP21H8
https://www.youtube.com/watch?v=tO2_3btOMuM
https://www.youtube.com/watch?v=B-xsytF3I-8
https://www.youtube.com/watch?v=vFCQimStPFE
Over 10 billion twitches since May 2011.
User avatar
bobajojo
Saint
Saint
 
Posts: 1013
Joined: July 1st, 2011, 6:41 am

Re: Here I am again ...

Postby Buzznerd123 on March 27th, 2015, 7:25 pm

.
Last edited by Buzznerd123 on May 1st, 2016, 11:59 am, edited 1 time in total.
User avatar
Buzznerd123
Selfless giver of time
Selfless giver of time
 
Posts: 114
Joined: January 5th, 2014, 2:37 pm

Re: Here I am again ...

Postby will97 on March 30th, 2015, 8:17 am

Hi Boba,

Thanks for your reply. I did check your videos and I can relate that it really sucks to twitch so much.

On my end, I actually thought that the weekend would help me and that I would get to relax and that my twitches/jerks would be gone. However, I am still feeling and seeing my twitches and itsstarting to really get to me.

I dont really feel or see my arm twitch when I am doing something but as soon as I rest my arm against a desk, an arm chair or cross my arms, I feel and see them again. In addition, the ''under'' side of my forearm hurts ... its as if I would have a bruise there but I didnt hurt myself and I also believe that I see some atrophy in my muscle ... but maybe it was always dented like that.

I honnestly feel like my twitches are different than they used to be as well ... they feel like ''creepy crawlers'' under my skin and that I funny (weird) sensations in my body which I do not enjoy at all.

I hate this, I feel so powerless against this disease ... I would like to have another EMG done but by neurologist doesnt want to move the one we have planned in October as he says that since its been a while now that I am meant to do one once a year so that brings me to October.

What do you guys do when you have had these types of panic attacks happen to you? Can you relate to my thumper, creepy crawler type twitches? Is this thing turning into something worse and that its slow progressing?

Thanks,

Will
will97
Senior Member
Senior Member
 
Posts: 70
Joined: August 12th, 2012, 10:32 pm

Re: Here I am again ...

Postby bobajojo on March 30th, 2015, 9:29 am

Will,

You just described my twitches perfectly. Both my deltoids 'rumble' with twitches all day long. I usually can feel them both going at the same time. If I take my shirt off and look in the mirror, my twitches are not blatently visible, but I can feel them all over and if I look closely (especially with the flashlight on my iphone) they are all over and constant. I get 10 per minute around each elbow. I get 5 per minute in each tricep. I can't see my back but I'm sure its going bananas. I feel about 30 big tongue twitches a day. My eyelids never stop, every time I blink they start up. My thighs have that rumbling feeling and if I look with my phone flashlight, you can see them. They look just like the lightning bolts all over my claves. I have all of this going on and its been 4 years and it gets worse and worse and worse. I just had an EMG at my request last November and it came out fine. So, yeah, our nerves can fire off like this from head to toe and its benign. I've seen it on my mom and brother's legs and they look just like mine. They say they don't have much above the knees but maybe I'm just more in tune with mine. Who knows. I hope this helps.

Matt
Over 10 billion twitches since May 2011.
User avatar
bobajojo
Saint
Saint
 
Posts: 1013
Joined: July 1st, 2011, 6:41 am

Re: Here I am again ...

Postby will97 on March 30th, 2015, 9:48 am

Thanks Boba for your reply again,

I actually have my left deltoid that I feel rumbling all the time as well ... but when I look at it in the mirror I dont really see the twitches there ... I just feel them and like if my body is shaking ...

You've been twitching for 4 years, me 3 years ... I guess that we can say that we are lucky that we are on the benign side of things but f*** its hard to deal with this thing day in and day out ... I am still struggling at times ... liek now its been a few months that I have been struggling and cant seem to get out of this big hole that I've dug myself into. My wife seems to be getting fed up of my complaining and worries about my twitches ... its hard coping with this, whilst working and taking care of your family ... yes I try to do many different things and keep my mind busy ... but still its easier said than done ... especially with all the things that I have read on the internet over the past 3 years ... the brain doesnt forget what its read ... although I would love for my brain to relax and forget all that ...

On my part, I havent taken any pills or seen any psychologists or other therapists because I always told my self that I could do this on my own but now I am starting to think that I might need some more help as I dont seem to be doing all that well ... especially on the inside.

Boba and others, have you guys tried anything? meds, psychologists, other therapists? and has anything helped you guys to deal with your conditions?

Thanks,
Will
will97
Senior Member
Senior Member
 
Posts: 70
Joined: August 12th, 2012, 10:32 pm

Re: Here I am again ...

Postby Ghayes420 on March 30th, 2015, 10:15 am

Hi WIll,

I feel as though we could be twins. Reading your story made me shake my head because I am right there with you bud. Just take a look at this paragraph you wrote:

"You've been twitching for 4 years, me 3 years ... "
--3.5 years for me, it has been progressive, it is getting worse

"I guess that we can say that we are lucky that we are on the benign side of things but f*** its hard to deal with this thing day in and day out ..."
--Darn lucky and yes, its a #%$^ bear to deal with on a daily basis for me still

"I am still struggling at times ... like now its been a few months that I have been struggling and cant seem to get out of this big hole that I've dug myself into."
--Correct, daily trying to claw my way out of the hole I have dug for myself. I have started CBT therapy. I HIGHLY suggest you look into this for help. No medication is going to assist you IMO.

"My wife seems to be getting fed up of my complaining and worries about my twitches ..."
--Mine has threatened to leave because it is taking up all the emotional bandwidth of the relationship. And she is correct, so is your wife. You need to get CBT.

"its hard coping with this, whilst working and taking care of your family ... "
--I am the sole earner in our family and it just adds more stress, two kids, mortgage, school, boy scouts, sports, etc.

"yes I try to do many different things and keep my mind busy ... but still its easier said than done ..."
---Amen to that

" especially with all the things that I have read on the internet over the past 3 years ... the brain doesnt forget what its read ..."
-- agree 110%. A long term twitcher I met (30 years) said he had it tougher because there was no internet to find people to relate to. I beg to differ. I wish there was no internet and that I never read the *beep* stories that I have read. I sometimes wish this forum didn't exist because of the studies I have read and dissected. They are burnt into my brain and they will never leave. Every new symptom I get, fine twitches, carpal tunnel, sensory symptoms, blah blah blah it all gets related to a story I read early in my journey before I learned to stay away from other forums.

"although I would love for my brain to relax and forget all that ..."
--That is the goal of CBT, not to forget per say, but to rationalize.


So as you can see, we are twins. After the 3 year mark for me I started to get the kind of twitching you describe. Feels like ants crawling and a bag of worms under my skin. It was happening in odd places too like the lower back area and the back of my neck. This sent my anxiety to another level and made another trip to Mayo. You can see the results of my Mayo trip if you search for it.

People on this board fall into two camps (my opinion), those with a few twitches here and there and they are anxious people to begin with, their twitching often leaves in less than a year or two max. Then there are those like me and Matt and others who twitch non-stop for 24/7 even all through the night, often having to adjust sleeping positions just to get some relief. You appear to be like us.

There are some people who are ok with this level of twitching and just feel like complaining about it, there are others, like me, who aren't ok with this level of twitching and want answers and a way to stop it. Admittedly, this leads to more anxiety and doctor visits and dead ends.

So long story short, you are not alone at all, get help with a therapist for CBT, stay in touch here when you need to. Try your best to distract your mind.
-Greg
A very proud fasciculator since 8/14/2011. :)
User avatar
Ghayes420
Hero
Hero
 
Posts: 464
Joined: August 29th, 2011, 9:00 pm
Location: Nor Cal

Re: Here I am again ...

Postby crotwich on March 30th, 2015, 10:55 am

Even though I'm only 8 months into this madness, can I please join the club? ...Started in calves and within one week spread into the whole body. And the frequency of fasics is constantly increasing... Each *beep* second I can feel 2-3 of them. Can't no longer sleep normally. I don't want to look my legs anymore since probably I would have fallen into despair.

Three weeks ago examined by one of the best ALS experts in Europe. Says it's benign (as the other neuros I visited). Well, that's definitely great to hear, but I so hate this condition. It's so *beep* annoying...
Sorry guys, I didn't sleep much last few days so I needed to vent a bit. But when my wife comes home from her job and my daughter from crèche I'll be as good as new. (I'm lying). :)

All the best,
Cro
crotwich
Senior Member
Senior Member
 
Posts: 58
Joined: July 31st, 2014, 5:33 am
Location: Europe

Re: Here I am again ...

Postby bobajojo on March 30th, 2015, 11:03 am

I hear ya Cro.

Can I ask, how often do you feel them above your waist? Mine used to be primarily in my calves with random pops everywhere else but now my upper body is constant. Sucks.

Matt
Over 10 billion twitches since May 2011.
User avatar
bobajojo
Saint
Saint
 
Posts: 1013
Joined: July 1st, 2011, 6:41 am

Re: Here I am again ...

Postby will97 on March 30th, 2015, 12:02 pm

Greg, sorry to hear that you have all those crappy symptoms as well ... I find it really hard ro deal with ... I will look into CBT, my neuro told me that I should consider that as well ... I guess it cant do no harm.

Do you guys ever get deep, massive cramps as well? Is this normal in BFS? As I type these words, I am having massive cramps in one of my calves ... wow quite deep and painful ... I know that there are people out there who are much worse off than I am ... but *beep* I am struggling with all this ... and my fore arm, like I said I have such weird feelings in my fore arm and it hurts as well ... I believe that my muscle is strophying and my arm does feel weaker ... maybe its not but it so does feel and look that way :(
will97
Senior Member
Senior Member
 
Posts: 70
Joined: August 12th, 2012, 10:32 pm

Re: Here I am again ...

Postby Ghayes420 on March 30th, 2015, 1:04 pm

Cramps are all part of BFS/BCFS. That's what the 'C' stands for!

I am lucky and don't get a ton of cramps, when I do it is a setback for my mental recovery but logic wins out in the day .

My neurologist was surprised that I don't cramp more than I do given the amount of twitching I have.

What state or city are you located and I can recommend a CBT specialist that can assist you.
A very proud fasciculator since 8/14/2011. :)
User avatar
Ghayes420
Hero
Hero
 
Posts: 464
Joined: August 29th, 2011, 9:00 pm
Location: Nor Cal

Re: Here I am again ...

Postby will97 on March 30th, 2015, 1:20 pm

Hi Greg - I really appreciate your help and support its appreciated. I live in Canada, in the south shore area of Montreal. Where are you from?

I dont get cramps too often, but when I do ... OUCH!!! they are pretty deep ... a few weeks ago I had such a bad calf cramp that it litterally woke me up in the middle of the night ... scary stuff I must say ...

Why oh why is neurology so complicated???
will97
Senior Member
Senior Member
 
Posts: 70
Joined: August 12th, 2012, 10:32 pm

Re: Here I am again ...

Postby will97 on March 30th, 2015, 3:06 pm

I also wanted to ask a general question as well concerning muscle atrophy ... do we notice the atrophy when the muscle is flexed or at rest?

I am concerned about my fore arm flexor muscle ... when I flex my muscle I can really see a big hole (dent type) where the muscle should be full ... but I only notice this when I flex my fore arm ... and like I said I have been twitching in the fore arm for the last 2 weeks ... and that area also seems to be sensitive (light pain) ...

I dont know if this is atrophy or if its always been like that ... just so worried :(
will97
Senior Member
Senior Member
 
Posts: 70
Joined: August 12th, 2012, 10:32 pm

Re: Here I am again ...

Postby Ghayes420 on March 30th, 2015, 4:12 pm

Relax. This is normal. Atrophy is seen when the muscle is at rest AND flexed. It is unmistakable. And only a trained professional can be the one who can dx such a thing. You would not be having true clinical atrophy without noticing a weakness of some kind.

For CBT in Montreal: Adam S Radomsky PhD, Concordia University 514.848.2424 x2202, [email protected] & Debbie Sookman PhD. McGill University 514.842.1231 [email protected]

I live in St. Louis now. :)
A very proud fasciculator since 8/14/2011. :)
User avatar
Ghayes420
Hero
Hero
 
Posts: 464
Joined: August 29th, 2011, 9:00 pm
Location: Nor Cal

Re: Here I am again ...

Postby will97 on March 31st, 2015, 9:42 am

Hi Greg,

Thanks for the info .. I looked up Debbie Sookman and must say that her reviews were not all that great, however I did some additional searches and might have found someone, Dr. Emily Blake. She seems to have freat reviews and is rated #1 psychologist in the Montreal area ... I will try and see if I can get an appointment with her ...

I do hope this will help me to deal with my panic attacks, ... however it still doesnt help the fact that my deep twitches that are in my fore arm are still there.

I am very frightened by these twitches as they are not my ususal type of twitches. The only time that I can actually feel or see those twitches is when my arm is laying against something solid, like an arm chair or a desk or something like that ... my arm seems to be tight ... it slike if I feel that the muscle is being pulled (stretched out) ... it sucks and I feel as if this is here to stay ... I have had some bad phases throughout my 3 years, but I think right now I am in a bad phase ... just cant take this much more ...

I also have very cold hand all the time its like if I would stick my hands in the freezer all the time ... is that part of BFS as well?

Once again, thanks Boba, thanks Greg and to all those who offer support and reassurance ... we all need that time to time and I need it now ... it somehow helps us to know that others have or had the same things and that they are all ok ...

I think that it would be great as well if we could know where people are from so that we could potentially meet up and talk about our situations ... I dont know if that would really help but its just food for thought!!!
will97
Senior Member
Senior Member
 
Posts: 70
Joined: August 12th, 2012, 10:32 pm

Re: Here I am again ...

Sponsor

Sponsor
 

Next

Return to General Topics

Who is online

Users browsing this forum: No registered users and 4 guests