more and more scared Need help

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more and more scared Need help

Postby nrwtwitcher on May 18th, 2014, 11:41 am

Hi again, sorry but I am so scared. My twitching, nearly 8 months now, goes bad from day to day. I have 24/7 fasciculations in both calves and feet and random everywhere. My fasciculations are really strong and they appear in series of fast strong (you can feel and see them) fasciculations. I have 4 EMGs (pig up fasciculations), spinal tab, MRI... The dx is BFCS. But I do not understand this progression. Is there anybody there who has such strong and fast series of fasciculations? Thank you...sorry, I know I am full of anxious, but I have lost my laugh... Thanks
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Re: more and more scared Need help

Postby ShawnW on May 18th, 2014, 3:59 pm

Right above my elbow has been going for 2 days now....strong enough to move my arm at times. If you read the stories here, yours sounds just like them.
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Re: more and more scared Need help

Postby DoubleD on May 18th, 2014, 8:52 pm

All classic BFS. my BFs continued to get stronger for about 2 years then tabled off. Everyone is different of course. Don't discount normal every day getting older and life challenges. With BFS and anxiety and fear that comes effects how we feel. with it we tend to forget that some days depending on what we eat, how much sleep we get, sickness, allergies.........affects how we feel.

It's going to take you some time but when you finally get a grasp on this that you're not dying and that you have a condition that will not take your life, then you will start to get better slowly but surely. The anxiety that goes along with the BFS really affects our nervous system and turns it on and blows it up. I twitch from head to toe. Sometimes there is fast, slow, wormy, hamsters boxing, thumpers, popcorn you name it. Yesterday I did a lot of landscaping and in this morning my legs were freaking out! It looked like somebody playing the piano on my calves :D

I know I am full of anxious, but I have lost my laugh


That is your main problem right now. Not BFS. You had four EMg's and been diagnosed with BFs. You've got to start to enjoy life. Whatever you can do to get some hope back in your life do it.

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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Re: more and more scared Need help

Postby RGB on May 18th, 2014, 9:26 pm

nrwtwitcher wrote:. But I do not understand this progression.


One other interpretation of "progression" is that your symptoms 'worsen' as part of their natural variability, understandably you become anxious, this ramps up your nervous system and so your symptoms worsen (and on and on it goes). You need to break this cycle.

RGB

PS All the people that have viewed your post but not replied... they are just thinking "You've had 4 EMGs, you're fine" :)
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: more and more scared Need help

Postby nrwtwitcher on May 21st, 2014, 12:18 pm

RGB, Shawn and DD: Thank you for you for answering my post and for your words. I have not replied yet, because I felt so bad the last couple of days. I could not sleep more than 4 hours every night. The last night was better. DD, I have read all you have written. It is fine for me to know that there are others with a similar "progression" of their symptoms (twitches). I have also read your other post. It is really important, high important for me to calm down and bring my mind into focus on other things...away from my twitches and weak feeling and cramps. And yes: The anxious is extreme and maybe the main problem of all of my problems. I will try to go on with my life. It is so difficult, you know, when I have cramps and twitches all the time... I will read your words more than one time to make me clear that I lost time when I am fixed all the time on my symptoms... These symptomcomplex is really an exam for me. Thank you for your time and for your words. I am grateful for this board and his members.
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Re: more and more scared Need help

Postby nrwtwitcher on May 23rd, 2014, 5:20 am

Hi guys, I am really trying what DD adviced...but: Whatever I do, if I try to go for a walk, if I try to relax or try to sleep, the twitches are so bad at time... every muscle of my feet an calves are twitching constantly. Also cramps in feet and calves. In adition my left hand feels weaker and weaker from day to day. Gabapentin seams to work not for me. My neuro saw the fascicultations and he said that it is my bfcs, I am not sure anymore. Thanks for reading and I would glad for any thoughts.
My little finger and my wrist on my left side feels weak, my finger feels weak by typing...
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Re: more and more scared Need help

Postby nrwtwitcher on May 23rd, 2014, 5:24 am

I have forgotten to say: My twitches are multible and constant. I feel I am not the same as the most on this forum, because they don`t go away, not for a minute. And there are a lot of at the same time on my feet and calves. They are always visible... I am 8 months in... is this the beginning...? Or could this really be bfs, also with such strange symptoms??? I am thankfull for every answer. Thanks.
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Re: more and more scared Need help

Postby Yuliasir on May 23rd, 2014, 6:24 am

ask Matt bobajojo, he has nonstop twitching for well over 2 years (had 3d anniversary recently I think). Matt also has benign diagnosis by Mayo clinic.
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Re: more and more scared Need help

Postby DoubleD on May 23rd, 2014, 8:58 am

i still twich like a machine and get cramps and have soreness..... I played softball the other day and my feet and legs are KILLING me! :cry: It feels like I am walking on marbles and my legs are very stiff. It stinks. With BFS things will hurt when you do them. esp at first. However when you find a good low impact exercise like swimming or biking it is less you have to pay for later.

But what I keep reminding myself is that I CAN do these things. Not as good as I once could thanks to BFS, but I can still move.

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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Re: more and more scared Need help

Postby Xina535 on May 23rd, 2014, 9:01 am

I am so sorry you are having severe symptoms like this.

It may not be clear to you what and why and how.....but to the medical professionals, they know you do not have anything serious. They can't explain BFCS either, no doctor can, there is not enough research there. But whatever is causing your BFCS is not serious, according to all of your tests and doctor opinions. Maybe this can comfort you a little.

We all have different kinds of twitching, some severe, different patterns, constant, etc. That is the whole thing behind BFS, no rhyme or reason to the way we twitch.

We DO know that BFS feeds off anxiety like a parasite. The fact that you are not getting more than 4 hours of sleep is enough to increase your twitching. I remember when I couldn't sleep well, and guess what? It was at a time I was twitching the worst!

I recommend that you tackle the anxiety, in anyway you can (books, progressive muscle relaxation, hypnosis, baths, sauna, yoga, walks, massages, and repeat!). Every day, a little more and more, and consistently for several days and weeks. I know it is hard to do this yourself and to stay consistent, so that is why they have these psychosomatic clinics that can help with this if you can't or do not know how. I know there are some of these clinics in my area in Germany, so there is probably something in your area. Just a suggestion - which was also suggested to me from a doctor once.

I have found that I need ME to really help ME! I can't count on anyone else to help me feel better and relieve my symptoms.
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Re: more and more scared Need help

Postby nrwtwitcher on May 23rd, 2014, 10:30 am

I am not sure that could be psychosomatic, Xina. My twitching looks like the twitching in Raindogs videos... really so extrem. But it is also true that it flares up with anxious and lack of sleep. DD, I will go for a walk now...but you can assured, that I will cramp and twitch away after this. But I must try it now. The sun is shining and I have to bring my mind in another way... Thank you all for answering, it is so helpful for me
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Re: more and more scared Need help

Postby DoubleD on May 23rd, 2014, 12:09 pm

Cramp away! It will get better. Drink some gatoraid or eat some bannannas. Take a warm bath. Its ok to do things in fear. Its ok to hurt.

when I first got back in the saddle it hurt like crazy! But i just powered through. I could not even walk ONE block. Not one! i felt hopeless. But I was determined. Now i can hike mountains. It hurts to do so but man it feels awesome at the top. :D

have fun in the sun. Curse your BFS after you are done but not during. :wink:

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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Re: more and more scared Need help

Postby nrwtwitcher on May 24th, 2014, 6:03 am

so... yesterday I was walking and I was suprised, no increase of my twitching after that. But this night I had a very strong cramp in my right calf :(
Another part is: My left wrist hurts and feels weak since 6 weeks. My left ring and pinky fingers are weaker than the both on the right side, I have tested it :oops: , also the left arm. :? With my left arm I am able to hold a full water bottle straight of for 15 seconds, with the right hand for 30 seconds... I hope that there is nothing going on after 8 months in it... Have a nice weekend, here in westgermany it is worm and a little bit rainy today.
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Re: more and more scared Need help

Postby DoubleD on May 24th, 2014, 9:23 pm

so... yesterday I was walking and I was suprised, no increase of my twitching after that
.

Awesome keep it up! If you had ALS you could not do this.



But this night I had a very strong cramp in my right calf



Me too. Rub it out and get some heat on it. Stay hydrated.



My left wrist hurts and feels weak since 6 weeks. My left ring and pinky fingers are weaker than the both on the right side, I have tested it , also the left arm. With my left arm I am able to hold a full water bottle straight of for 15 seconds, with the right hand for 30 seconds..
.

Stop testing. Just stop

I hope that there is nothing going on after 8 months in it...


The only thing going on is you getting better. :)



Have a nice weekend, here in westgermany it is worm and a little bit rainy today.


Perfect weather to get outside

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
User avatar
DoubleD
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Re: more and more scared Need help

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