Internal Shaking is Back !

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Internal Shaking is Back !

Postby Barb916 on October 14th, 2004, 7:30 pm

When I first started twitching, I used to get this kind of internal shakiness. I would feel it in my chest mostly and always right when I woke up in the morning. It eventually went away.

Well, it's back. But now it's not in my chest anymore, it's in my back and neck. Anyone else experience this? It just feels like from the middle of my back and up is shaking or this kind of jittery feeling. I pretty much also only feel this when I wake up during the middle of the night and in the morning upon waking. What's up with this?

Can anyone else relate? Has anyone mentioned this type of symptom to a neuro?

Thanks for any input.

Barb
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Postby homer8 on October 14th, 2004, 7:52 pm

Barb,

I get this too....it is mostly in my back and neck...it is very disconcerting to say the least. It first started around a year ago, I fell asleep on the floor on my back while playing with my kids. I woke up to what felt like a motor running in my neck and back, it quit almost as soon as I set up.

It recently started up again and I hate it. It always goes away as soon a I wake up or move. I read on another board that a guys neuro told him it was stress and anxiety....I find that hard to believe.

I also did a search on a lyme forum and found that alot of folks with lyme have the same thing and it seems to be very prevelant in the head, neck and back. I plan on getting some more extensive lyme tests at some point in the near future.

I am going to have a follow up appointment with my neuro later this month and I am going to ask him about it.

Paul
Last edited by homer8 on October 14th, 2004, 7:53 pm, edited 1 time in total.
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i get that too

Postby eric on October 14th, 2004, 7:52 pm

i get that too! I dont like it and it scares me, it feels like there is a vibration along the spine up into the neck and when i awake it goes away. when i go to sleep it comes back.,
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Postby homer8 on October 14th, 2004, 10:00 pm

Eric,

How long have you had your symptoms?

Paul
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Postby speg on October 15th, 2004, 2:16 pm

My head/neck shakes. I can feel it but can't see it. I have had this for several years, long before the twitching. My guess is either anxiety or essential tremor.

Peg
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Postby mike3456 on October 16th, 2004, 7:50 pm

Hi Peg,

I had the internal shaking for a a little while. I noticed it at night and in the morning when lying still in bed. Felt like in was in my chest and neck. I really felt that it was due to extreme anxiety. I felt it was basically the the "shakes" you get when you are scared. I had been extremely anxious and not sleeping much when I noticed that.
-Mike
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Postby Barb916 on October 16th, 2004, 8:28 pm

Paul

Please do let me know what your neuro has to say about this. One common thread we all seem to have it that we all notice it upon waking. The funny thing is, I truly did not feel nervous or anxious when this all started. Now, Huh...a different story. I've very anxious. So, I agree with you, I don't feel it's related to anxiety.

Thanks for the reply and keep me posted.

Barb
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Postby Barb916 on October 16th, 2004, 8:30 pm

Thanks for all the other "shakers" out there who replied. I'm glad to know I've got company!

BTW - I've been tested for lyme twice. Lyme Titer and Western Lyme Blot...both negative.

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Postby LeeNC on October 16th, 2004, 9:16 pm

Barb and all:

Another shaker here. It's a relief to me that at least SOME "members" experience the buzzing and vibrating and shivers and shakes, in addition to the classic twitches. My main complaint is not the twitches but the constant shaky feeling. I do especially notice it in bed, especially in the morning! This is NOT mere anxiety.

What I appreciate so much about this board is that we can complain about how annoying our symptoms are...but we understand how important it is to assure the newbies...and on that deeper level, we understand how lucky we are that this is as bad as it gets. Thank you all for being here!

--LeeNC
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Postby Bree on October 16th, 2004, 10:01 pm

I had the frightening chest shaking that wakes you up, but only at the peak of my symptoms. Scared me to death. I (thankfully) haven't had that for a while now.

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barb western blot

Postby eric on October 17th, 2004, 4:27 pm

western blot is a test to see if you have any bands and this test is not accurate, by the tests that you have taken you cannot rule out lyme disease.period. you may have lyme disease and the tests will all be negative,
if you take the western blot it should go thru igenex in ca. they are reliable.
find out what bands you have . this feeling in the night does it feel like your back is vibrating from the spinal cord? does it only occur at night?has you toe sensation come back? do you feel dizzy?cant think? off balance or vertigo ? do you feel strange sensations in your legs? do you feel pains here one day and there the next?do you ever feel that you are going nuts?
these are some of the symptoms of lyme, remember cdc guidelines are that tests are not for diagnoses, symptoms and state of the patient are the only way to diagnose the disease. sometimes they will give you a trial of antibiotics but it must be off the right dose and length of time.
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Postby Barb916 on October 18th, 2004, 8:04 am

Eric

I've had 4 docs say they don't think I have Lyme, My GP, his PA, my Neuro and a "guru" in my area who is now retired but my GP called him just to get his opinion...and he agrees, no lyme.

As far as my symptoms go: Yes, I only feel the shaking/vibration feeling upon waking (whether I wake up during the middle of the night or in the AM...that's when I feel it). It does feel like it originates from my spinal cord. My legs do get a strange feeling occasionally where I feel like I have to move them to stop the feeling....maybe RLS? No dizziness or vertigo.

Isn't a BIG sign of lyme swollen and painful joints? and low grade fever....which I don't have. I know my docs aren't going to do any more tests for lyme( at least for now). They all feel that's not what going on.

THanks for your input.

Barb
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what is lyme

Postby eric on October 18th, 2004, 6:06 pm

lyme is a spirochete that is able to evade detection. you will not find it in your blood because its in the nerves. Im not a doctor but what you desecribed is the same thing that i went thru. i had the funny sensations form the back. but also i kept telling my neuro that after a while i could not feel some nerves. and that i was getting worse. as if my nerves were shuting down , well it was lyme , they changed the antibiotic and i started to get better. now im not saying that you have lyme but it is now one of the most missdiagnosed diseases. just keep that in mind when they tell you you dont have it. western blot is 23% accurate. all im asking is that you keep an open mind about lyme.
hope all is well.
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Postby Buzzygirl on October 18th, 2004, 6:14 pm

Wow, it sure is reassuring to hear that this is such a common complaint from so many of us with BFS. I was diagnosed with this disorder in Dec. 2003. One of the most disturbing symptoms has been the internal sensation of trembling which would always start after lying down to go to sleep. I feel it across my shoulders, in my back, and on some really bad days, maybe when I've been more physically active than usual, my body trembles head to toe! Fortunately, it does usually dissipate within a few minutes of lying down, but with each turn during the night, and when I wake in the morning it's there again. Klonopin does help some. I don't really have the twitching of muscles much anymore. But the other symptoms, vibration sensation in leg. tingling, numbness, a quivering sensation in my right arm, these have all persisted. I will say...the most disturbing is the trembling or shakiness at night. Initially it scared me to death, and lead to panic attacks. Now I just try to ignore it, and use pillows to support the limbs, which helps to lessen the sensation. By the way, I did tell my neurologist about it. He didn't really say much, but he was the one who diagnosed BFS. My GP didn't have a clue what was wrong, and thankfully she did order MRI and EMG to rule out MS, ALS.
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Postby LeeNC on October 18th, 2004, 6:57 pm

Oh, Buzzygirl, we are in the same boat.

I am more bothered by the shakiness than the twitches. I have come to a point of peace with this weird stuff, though, and now truly believe it is benign, if annoying. But I sure do like to sleep with extra pillows. That seems to help stabilize my arms & legs, so I don't perceive as much shakiness. I wake up every morning feeling like I'm cold, even when I'm not, and I yawn a whole lot more than I ever used to. If this sounds familiar to any of you, bring on the reassurance that I'm not alone!

--LeeNC
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