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Living with Polyneuropathy CIDP, GBS, & CMT

Shaking ,tremors,vibrating for hours


#1

Hi crew,

Just wanted to know if anyone has experienced uncontrolled shaking or vibrating.

I m a year into this disease and everday in a new and different situation. Good and Bad...

Please advise if anyone has experienced these tremors,shaking,vibrations...

Peace,

Bobbie


#2

Very occasionally, I've had a finger or two shake. I've had muscle tremors, in very small areas, repeatedly twitch. My neuro calls that fast,,, something another, For the past two months. I've had that going on in one spot on my left bicep giving me slight pain, .5 on a scale of 1-10. When I feel and compare my left and right bicep now, there is gap, muscle loss I'd imagine, in that area. Probably one of the reasons picking up a 40lb bag of bird seed to move is a struggle other than just the crummy balance that comes with it.

On a positive note, I get the bird seed moved, transported, and the birds fead. That give me happiness and I'm proud of myself, as yesterday, when I finished the job.


#3

Yeah it drives my husband crazy!! I had just tonight sitting on our couch my left foot started vibrating....

My doctors don't know why, think it's in my head, likw ao many of my things that go wrong with my body.

I think they just don't know or understand....I know for a fact that the ER I was in last week didn't even under polyneuropathy...and didn't understand. YOU know when they don't know.

Anyway I simfied but I try not to argue with the doctors, on the other hand my husband argues, and I am afaird to.I feel the doctor or nurses will do like they might do at a restuant when you send back food etc. So i try not to tell them everything yes I minized my problem.

I also have a hand thing that I wave but I do think that is just nerves being nervous. But with some of the other things no way. I guess i just have to wait and see if there is another diease they just haven't fig out yet.

Hey when I ask any of the doctors I go to all the time about the IVG thing you all have, they have no idea what Im talking about too? See we are in the dark ages here really. My husband wants me to copy some of the post concerning this....and show it to the doctors....and say, "See they get this" why not me?

And also they never did a spinal tap on me or even suggested one. I only had the EMG's

while I know this isn't probably the right section to talk about on......just saw Barrow's Neuro Hospital /MDA clicnic two days back....they couldn't fig out something I'll write not on your post to tell what they said...it is enlighting how little they do know.

so don't give up.....please


#4

Hello Bobby , Mine is a funny story , I would go to bed and as soon a sI lay down I felt my husband moving ( vibrating) I was concerned and told him this was happening in his sleep and I was worried about him and encourage dhim to see his doctor , He then went away ona business trip and it continued to happen , It was only then I realized it was me that was vibrating LOL My husband cant tell it so I assume it is internal and I just feel it when I lie down .

HDont mean to make light of your situation and hope you feel better soon

Mary


#5

I get them all the time in random places on my body. I don’t think a day has gone by for over a year I did not get some kind of uncontrolled shaking or vibrating. I don’t have any pain with mine but it is annoying.


#6

My muscles are becoming weaker since I started 60 mg of predisone 2 weeks ago... Along with the tremors,shakes.

See my fabulous neurologist today to work on a different plan of action! I also receive IVIG every two weeks for 5days and this was the first time with no improvement.....Journey on and Peace to all. MOVE..always move and go no matter the barriers..because tomorrow may bring the sunshine...a great day to all!


#7

Love the sense of humor..Humor always welcomed!!!

Mary said:

Hello Bobby , Mine is a funny story , I would go to bed and as soon a sI lay down I felt my husband moving ( vibrating) I was concerned and told him this was happening in his sleep and I was worried about him and encourage dhim to see his doctor , He then went away ona business trip and it continued to happen , It was only then I realized it was me that was vibrating LOL My husband cant tell it so I assume it is internal and I just feel it when I lie down .

HDont mean to make light of your situation and hope you feel better soon

Mary


#8

Hi Ruthie,

Thanks for your thoughts and courage to press onward!

See my favorite doc today....I will update later or tomorrow. The IVIG worked for my fist year of CIDP..

ruthie4bearz said:

Yeah it drives my husband crazy!! I had just tonight sitting on our couch my left foot started vibrating....

My doctors don't know why, think it's in my head, likw ao many of my things that go wrong with my body.

I think they just don't know or understand....I know for a fact that the ER I was in last week didn't even under polyneuropathy...and didn't understand. YOU know when they don't know.

Anyway I simfied but I try not to argue with the doctors, on the other hand my husband argues, and I am afaird to.I feel the doctor or nurses will do like they might do at a restuant when you send back food etc. So i try not to tell them everything yes I minized my problem.

I also have a hand thing that I wave but I do think that is just nerves being nervous. But with some of the other things no way. I guess i just have to wait and see if there is another diease they just haven't fig out yet.

Hey when I ask any of the doctors I go to all the time about the IVG thing you all have, they have no idea what Im talking about too? See we are in the dark ages here really. My husband wants me to copy some of the post concerning this....and show it to the doctors....and say, "See they get this" why not me?

And also they never did a spinal tap on me or even suggested one. I only had the EMG's

while I know this isn't probably the right section to talk about on......just saw Barrow's Neuro Hospital /MDA clicnic two days back....they couldn't fig out something I'll write not on your post to tell what they said...it is enlighting how little they do know.

so don't give up.....please


#9

Yes I have at times violent shaking to light shaking like tremors. Almost like a seizure. It can last minutes to hours. I’ve even asked my husband to come hold on to me to try an settle it down but it only hurts me from his weight being on me. After they stop I’m exhausted an very very sore. They seem to happen in lots. I’ll have them back to back for days then they will just stop an not happen for a while just minor tremors an jerking or shaking in a limb somewhere. Hope that helps you realize your not alone. Hugs an well wishes Kelly c


#10

Hi Joe,

my name is Ruth I have just joined this site, I am 42 years old and a single mother of 4 boys. I live in the Falkland Islands. I was diagnosed with CIPD 13 years ago. I have it pretty much under control with Immunoglobulin twice a year. I have done a lot over the years to improve my condition. I live in a small place with a population of only 3,000 I am the only one here with this. My biggest problem is the tremor in my hands, it is really bad. I was commenced on Primidone, this was working but the now want to take me off it and as we have no specialists here I have to go to Chile or UK for an MRI and nerve conduction tests. The specialist wants to rule out anything else as my condition it’s self is good. This is frustrating as the meds were helping, I am so sure that it is the CIDP. I don’t have shaking or a tremor any where else. Are you taking anything and what is your current CIDP treatment?