New to Forum with BFS Diagnosis

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M

mgardner87

Well-known member
Hello,

I'm new to this forum and it has been a great source of reassurance and encouragement so I thank you all who have posted. I was officially diagnosed with BFS about 3 weeks ago (EMG test was ok), I've had this condition for a good 6 months now. For the past couple of weeks, when I put my head down on my pillow either at night to go to sleep or just for a rest, I will get a bit of a vibrating sensation - or maybe a wobbling or pulsating sensation would be a better way of explaining it. It's not real serious where I rock back and forth, it almost feels a bit like my head is moving along with my pulse. I saw on a website that BFS can cause titubations of the head (I'm not sure if this is what they're describing):



Has anyone else experienced this? I guess, like many others, I'm just looking for some reassurance. This morning while in that sleepy wake-up state, my whole head felt like it was jerking - it did this a number of times. I guess this is the myoclonic thing that is mentioned elsewhere on this website?

I hope to hear from anyone with similar experiences. I have had my fair share of anxiety over all this - anxiety to the tenth power which I finally just seem to be getting under control.

Thanks very much, I have some other questions and will post again soon.
Mark
 
Yes Mark, I've had the head vibrations too and only when lying down. I've described it as sort of an internal tremor. I think it's pretty common with BFS, though one of the more frightening symptoms...I had these in the beginning and am happy to say I don't have them anymore. I believe others on this forum have described the same thing and theirs too have abated...Hang in there!
Christy
 
Thanks Christy - your description of an internal tremor is ideal - this is exactly what I'm getting. It has frightened the living daylights out of me. I never get them when I'm up and about - only when laying down, just as you've noted. Once again, thanks for replying and I feel better knowing I'm not alone.
Mark
 
The vibrations in my head and whole body I get. They were my first symptom. I would tell everyone that I am vibrating and they thought I was crazy. I would wake up in the middle of the night and my whole body would start to shake like an earthquake but could not see it on the outside. My head moves a little not alot from the vibrations I cant tell if it is in my neck, face, upperback but I think all. The vibrations are the worseeeee, this is what scared me the most. Once I was dx and let go of the anxiety they are almost gone, I can barely even feel them anymore and I will tell you, I will take the twitches over those any day.

Please don't let this bother you I know that is hard to do but trust me it was my #1 symptom and the strongest one. That is BFS! Hope you feel better....Jenn
 
Thanks Jenn, this has all been very encouraging and I thank you all so far for your replies. You're right about the vibrations being the worst, I would also take the twitches any day over the vibrations.

God Bless,
Mark
 
YES, I have had this exact same thing! It happened mostly in the middle of the night. I would wake up out of a dead sleep and it scared the snot out of me!!!

I figured out for me, that it was in-sync with my pulse and it was a STRONG pulse in my neck causing the vibrating. It has gone away, I hope never to return. Our bodies our complex and who know what causes it???


Tammie
 
Hi all,
I can so relate to the tremor with the heart beat thing i can especially feel it when i put one of my legs on the other 1, i see it and feel it move ever so slightly with my heart beat kind of freaked me out in the beginning i still have not figured it out if thats a tremor or a twitch!!!!
Another thing that has been going on more often is that my fingers and/or limbs just move for like a second especially when i am at rest its really weird.
Well i hope it will get better with time.
cheers
k
 

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