Has anyone experienced internal vibrations?

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?

I saw a neurologist today about my internal tremors that have been going on for 2 months now. He did a few physical tests on me and said I was ok. But I explained to him that I'm in constant pain from internal tremors, head tremors, hands/feet going numb, restlessness/akinisia, and more. He looked at me and said there's no way I could be experiencing all that. I can't believe the situation I'm in. I'm waiting to see another neurologist on April 8. It's really long to wait, but I have no choice.

I saw a neurologist today about my internal tremors that have been going on for 2 months now. He did a few physical tests on me and said I was ok. But I explained to him that I'm in constant pain from internal tremors, head tremors, hands/feet going numb, restlessness/akinisia, and more. He looked at me and said there's no way I could be experiencing all that. I can't believe the situation I'm in. I'm waiting to see another neurologist on April 8. It's really long to wait, but I have no choice.

Since you have head tremors, this is not Parkinson’s. Also, it doesn’t sound like essential tremor. With my anxiety, I can have wicked internal tremors that give me a headache. I have to be honest….it sounds exactly like horrible anxiety of some sort.

I have tremors in my neck which causes my head to have a “vibration” like movement felt inside and seen outside. Not sure if that is what is being talked about.
Mine is from Parkinsonism.
Most likely not the case here……

I saw a neurologist today about my internal tremors that have been going on for 2 months now. He did a few physical tests on me and said I was ok. But I explained to him that I'm in constant pain from internal tremors, head tremors, hands/feet going numb, restlessness/akinisia, and more. He looked at me and said there's no way I could be experiencing all that. I can't believe the situation I'm in. I'm waiting to see another neurologist on April 8. It's really long to wait, but I have no choice.