Has anyone experienced internal vibrations?

I know this is a very old thread but I was just wondering how things are now? My internal tremors started a year ago but for the last two weeks every muscle is on fire. All my tests come back normal. The pain is killing me. Getting a referral to Mayo now.

Hello John, and thank you for welcoming me to the group!

I have not been diagnosed with BFS, or anything else for that matter. Like so many others, my doctors are baffled when I initiate a conversation about my situation. A few years ago, I began having what I always refer to as an internal vibration. It starts at about my neck level, and runs down the center of my torso, stopping at about the end of my tailbone area. I visualize it being in the center of my spinal column. I did suffer a lower back sprain in the late 1970's, and throughout the years, have basically maintained the same level of damage, excepting age related deterioration. In 2013, I began seeing a pain management doctor, who did series of lumbar injections, 2 per year, for a few years. They were helpful for my back pain. This was prior to the onset of the internal vibration. I just automatically assumed the vibration was somehow related to the spine issues. I am a self avowed detail maniac, and have a high level of self awareness regarding my body. I also watch for patterns and document timelines. So when I talk to doctors about it, I share specific and detailed information about what I experience. Usually, they stare at me with an eyes wide open look and puzzled expression. I've had 3 neurologists, an internal medicine doctor and an osteopathic doctor tell me they've never had a patient present with an internal vibration, nor have they ever heard of it. I always share with them that should they decide to google it, they will find hundreds of forums with thousands of people discussing very similar symptoms to mine.

Here are the specifics of my issue: It is NOT tremors. It is NOT twitching. It IS vibration, like you would expect if you were lying on a bed that has a massage feature that is turned to low. It is NOT constant. It is ALWAYS engaged when I wake up each and every morning. I sleep in zero gravity, and primarily stay on my back for 7 - 8 1/2 hours, unless my back is out of whack, at which time I may lower my bed and sleep on one of my sides. I have severe sleep apnea and sleep with a CPAP device. I generally do not have trouble sleeping; only on occasion will the vibration be strong enough to wake me up. As I begin my daily routine, the vibration usually is not noticeable. There are times, specifically when I'm stressed or when I drink too much caffeine, that it revs up significantly, and literally feels and sounds like a small motor running inside my body. Occasionally, it is so strong that I become nauseated and can even feel my body becoming anxious, with weakness and tension. I practice deep breathing faithfully, and do muscle relaxation exercises as needed.

The only 3 factors that I can determine are consistent are: the vibration is always present when I awaken; is strongest when I drink too much caffeine and when I am unusually stressed.

I have had nerve tests, and multiple MRIs, from my brain to my tailbone. Nothing stands out that can explain the vibration. Only every once in a blue moon do I become concerned that it is something dangerous. Practically speaking, if it were, I think I would have died by now.

The possible links that I've discussed with my doctors are: during one of my lumbar injections, while under sedation, my doctor called out my name and told me I was going to have to be still. After reading something related to misses during lumbar injections, I've wondered if there is any connection to a possible miss during that injection. In late 2018, I suffered a sudden onset hearing loss, as in overnight, I went from perfect hearing, to a moderate loss in one ear and mild in the other. I now wear hearing aids in both ears. My ENT was concerned that I may have Meniere's Disease. I have 3 of the 4 symptoms...sudden onset hearing loss, tinnitus and "full" or "plugged" feeling in only one ear. The only symptom I have not experienced is vertigo. There is no test to confirm Meniere's, so they have to eliminate other diseases that may involve same or similar symptoms. All tests have good results. Because I do not have the dreaded vertigo, my doctor has suggested we do the "wait and see". Lastly, I have read comments on other forums, regarding pinched nerves in the neck. I have had minor neck issues, so I wonder.

I will conclude with something my sister told me just last night. She has a friend who has something she describes as similar to what I describe. Someone has suggested to her that it may be related to being in close proximity to a 4G or 5G cell tower. I personally have read about people who have high levels of sensitivity to electromagnetic fields. I don't have a specific reason to suspect this is related to my internal vibration, but I also have no reason to believe it is not.

I appreciate the opportunity to share my experience with this issue.

Well apparently my insurance will not cover anything at The Mayo Clinic, so I guess I am off to my 4th neurologist. None of my doctors have even heard of internal vibrations so I do not hold out hope. I do not have anxiety. I vibrate all day long, even my eyes which does not help to go to sleep. They feel less intense if I am standing, when I touch my arm or sit/lie down they are magnified. I have a pajama shirt that shows the vibrations so I wear it to each appointment. When you touch me you feel nothing. Within the last two weeks my leg and arm muscles feel like I swam across the ocean after running across the country All Day Long.

Has anyone on this message board received an answer for the vibrations???

Not being facetious at all, but what was a huge help to me, mentally, was realizing that I’m not dying from it and it isn’t taking my mobility degeneratively. Is it highly disturbing and disruptive and trying on the patience? Absolutely, but, at the end of the day it’s nothing that is genuinely nasty in most cases. Also there is hope that it will subside, lessen, or at least wax and wane (like in my case).

The insomnia is tough because you know it’s going to get worse when you lay down and your brain slows, so you don’t want to do it... that’s when it rears up, just as you enter sleep. Still, even though I am where I am mentally now, I don’t sleep until I’m basically going to keel over. Combination of my gabapentin and knowing that, at rest the vibrations amplify. It’s also counter productive since there is a solid informal link between adequate rest and lessening vibrations and fasciculations.

Just as a quick recap for those who don’t know or remember my prior posts, I’ve just passed the 1 year mark of a monthlong mystery illness that walloped me, followed by severe internal vibrations including vocal cords, neck, throat, head and chest in addition to the more common leg and arm areas. Had every test under the sun and all were fine, which led to two independent neuro provided BFS / CBFS diagnoses.

One year ago I was bed ridden, crying non stop, scared out of my mind, 2-3 doctors per week, and felt like I was dying of something. Even when I tried to get around my legs would cramp and shake and give out. My nights were a hell of vibrating and waking up screaming with my voice fluttering from the vocal cords fasciculating. My thighs would wake up my wife from vibrating. I tried to walk outside and would collapse from the thigh and leg pain.

Now, my legs buzz often, most of the time one muscle somewhere is going nuts (my left foot arch is bumping and popping as I type this), but my mind and body have improved enough that I got to the point where I’d walk 7 miles golfing 2-3 times a week all fall, and now I’ve been skiing 3 times this winter.

Hang in there. Follow up with your medical team and get any testing they suggest, which will likely put your mind more at ease and/or help you if something simple can be done like a vitamin or hormonal correction.

@novajeff I know I'm responding to your post from last year but I was inspired by you and just had to give you a shout out!

What an impactful account of what you went through with BFS/CBFS and how you managed to come out on the other side through perseverance, a little luck, and positivity. I like that you say your mind and body improved, and you recognized you weren't dying from your symptoms or sacrificing degeneration. This is a huge revelation to pull strength from, and be able to manage existing symptoms in a more productive manor. Good for you!

Are you still able to maintain the activity level you mentioned last year at this time?

Hello John, and thank you for welcoming me to the group!

I have not been diagnosed with BFS, or anything else for that matter. Like so many others, my doctors are baffled when I initiate a conversation about my situation. A few years ago, I began having what I always refer to as an internal vibration. It starts at about my neck level, and runs down the center of my torso, stopping at about the end of my tailbone area. I visualize it being in the center of my spinal column. I did suffer a lower back sprain in the late 1970's, and throughout the years, have basically maintained the same level of damage, excepting age related deterioration. In 2013, I began seeing a pain management doctor, who did series of lumbar injections, 2 per year, for a few years. They were helpful for my back pain. This was prior to the onset of the internal vibration. I just automatically assumed the vibration was somehow related to the spine issues. I am a self avowed detail maniac, and have a high level of self awareness regarding my body. I also watch for patterns and document timelines. So when I talk to doctors about it, I share specific and detailed information about what I experience. Usually, they stare at me with an eyes wide open look and puzzled expression. I've had 3 neurologists, an internal medicine doctor and an osteopathic doctor tell me they've never had a patient present with an internal vibration, nor have they ever heard of it. I always share with them that should they decide to google it, they will find hundreds of forums with thousands of people discussing very similar symptoms to mine.

Here are the specifics of my issue: It is NOT tremors. It is NOT twitching. It IS vibration, like you would expect if you were lying on a bed that has a massage feature that is turned to low. It is NOT constant. It is ALWAYS engaged when I wake up each and every morning. I sleep in zero gravity, and primarily stay on my back for 7 - 8 1/2 hours, unless my back is out of whack, at which time I may lower my bed and sleep on one of my sides. I have severe sleep apnea and sleep with a CPAP device. I generally do not have trouble sleeping; only on occasion will the vibration be strong enough to wake me up. As I begin my daily routine, the vibration usually is not noticeable. There are times, specifically when I'm stressed or when I drink too much caffeine, that it revs up significantly, and literally feels and sounds like a small motor running inside my body. Occasionally, it is so strong that I become nauseated and can even feel my body becoming anxious, with weakness and tension. I practice deep breathing faithfully, and do muscle relaxation exercises as needed.

The only 3 factors that I can determine are consistent are: the vibration is always present when I awaken; is strongest when I drink too much caffeine and when I am unusually stressed.

I have had nerve tests, and multiple MRIs, from my brain to my tailbone. Nothing stands out that can explain the vibration. Only every once in a blue moon do I become concerned that it is something dangerous. Practically speaking, if it were, I think I would have died by now.

The possible links that I've discussed with my doctors are: during one of my lumbar injections, while under sedation, my doctor called out my name and told me I was going to have to be still. After reading something related to misses during lumbar injections, I've wondered if there is any connection to a possible miss during that injection. In late 2018, I suffered a sudden onset hearing loss, as in overnight, I went from perfect hearing, to a moderate loss in one ear and mild in the other. I now wear hearing aids in both ears. My ENT was concerned that I may have Meniere's Disease. I have 3 of the 4 symptoms...sudden onset hearing loss, tinnitus and "full" or "plugged" feeling in only one ear. The only symptom I have not experienced is vertigo. There is no test to confirm Meniere's, so they have to eliminate other diseases that may involve same or similar symptoms. All tests have good results. Because I do not have the dreaded vertigo, my doctor has suggested we do the "wait and see". Lastly, I have read comments on other forums, regarding pinched nerves in the neck. I have had minor neck issues, so I wonder.

I will conclude with something my sister told me just last night. She has a friend who has something she describes as similar to what I describe. Someone has suggested to her that it may be related to being in close proximity to a 4G or 5G cell tower. I personally have read about people who have high levels of sensitivity to electromagnetic fields. I don't have a specific reason to suspect this is related to my internal vibration, but I also have no reason to believe it is not.

I appreciate the opportunity to share my experience with this issue.

Thank you!

I try to help people here and on the Reddit BFS group (things can get a little fishy over there, as fair warning) because I’m hoping I can give some comfort to some of the (probably MANY) undiagnosed patients suffering with these symptoms and when they google, thinking the worst.

To answer your question, yes, I am able to have the same if not better physical activity. Still ups and downs. Still bad nights and bad days.

Last night I had aching feet from it, and restless sleep, and when I woke, my calves were crampy and popping more than usual. Still, I hopped in the car and ski’d hard for 4 hours, and after some rest, I plan on paddle ball this evening. I’d say that’s pretty active!

@novajeff Awesome news, you're able to stay active! Thanks for being real regarding your symptoms and acknowledging they still exist despite your activity..

Thank you for supporting the Connect community. Comfort in connecting with others is so important. No doubt you have made a difference in someone's life.

You mention having bad nights. How do you handle those?