Has anyone experienced internal vibrations?

Do you have any other symptoms? I have them, but I will also get a pins and needles feeling and when they stop, I feel a weird rush and nerve aching. Sometimes I will have to suddenly urinate.
Strangest thing, but painful at times.

@brayimee Curious if you have ever researched Small Fiber Neuropathy? Many of your symptoms can be associated with it. May be worth a check as SFN affects autonomic, sensory and motor nerves.

Yes, as a matter of fact I do have SFN. Strange that the Dr didn’t link this together.
Thank you so much for your response.
Michelle

Yes, I also experience pins/needles effect. The pain in my stomach is sporadic but when the pain comes it stops me in my tracks.
Thanks for responding- have a great day!
Michelle

@michelles123, Here is some more information from Medical News Today on internal vibrations that may sound familiar to your symptoms -- Causes and treatment for internal vibrations: https://www.medicalnewstoday.com/articles/322217

Are you still being treated for Hemifacial Spasms by your neurologist?

@michelles123 you may also be interested in following the discussions in the Neuropathy group: https://connect.mayoclinic.org/group/neuropathy/

Have you researched benign fasciculation syndrome? Check out the symptoms for that, and possibly you may align with them, like I did.
After having every test under the sun, and everything coming back “normal”, I finally received three separate neuro diagnoses of BFS with cramping.
Unfortunately, BFS is in its infancy of being understood by the medical community. It will likely be many years before it is better treated or controllable. The “good” news is that BFS isn’t something life threatening, but to call it “benign” is sometimes frustrating given the impact it has on daily life.

Personally, 6 months in now, about half the days I still wake with buzzing in my calves, globus in the throat, and tinnitus. Half the days I am actually pretty good. I am FAR ahead of where I was in February, physically. Oh bad buzzing days, like today, I also get clinical fasciculations in the calves that are distinct “boom, boom, boom” pops of the muscles.

My thigh muscles are the most challenging now. It is my own theory that due to the tremors inside (micro fasciculations), the leg muscles are more tired than they otherwise would be. There have been several days recently where walking long distances becomes difficult because of a feeling of knives in my thighs. Some sort of cramping, I think. These aren’t textbook cramps that lock you up like a Charlie horse or toe cramp. Just painful and over tiredness in use. Thankfully, my calves have cramped much less as of late.

FWIW, my team has decided to treat me with gabapentin (4 months now). Not sure if that is responsible for my improvement, or if it’s more just a time/healing thing, or a combination. I tolerate it quite well so we are not in a position yet to back off of that medication to experiment.

Best of luck.

Hi @novajeff,

I appreciate your sharing about your diagnosis of BFS with cramping. This does seem to be a rather new diagnosis and somewhat rare as well. Here is some information from a website that may help others understand the symptoms and treatment for this problem, https://www.healthline.com/health/benign-fasciculation-syndrome#treatment.
This sounds like a very painful disorder. Is physical therapy an option to treat this problem?

Cramp Fasciculation Syndrome also sounds very similar to your diagnosis. Here is some information from the Rare Diseases website of the NIH, https://rarediseases.info.nih.gov/diseases/6205/cramp-fasciculation-syndrome

As this is an unusual diagnosis, do you mind sharing what tests were used? I noticed in the article that I listed in the first paragraph that often an electromyography EMG is used. Did you have that test?

Hello,

Happy to share.

The condition is mildly painful but more often than not just very irritating, disconcerting, and disruptive. At its worst it had me bed ridden for weeks and in tears thinking this was a terminal condition. Now, it sometimes has prevented me from continuing on a hike, or like last week, after walking 9 holes of golf, the last 9 I was in a lot of thigh pain and couldn’t really continue comfortably.

Physical therapy is definitely an option. In lieu of that (cost, COVID, time, etc), simply walking or swimming or exercising seems to help. Stretching also isn’t a bad thing but I don’t know that it is a major help. Bottom line is, the muscles are being used at high frequency low amplitude Fasciculation/tremors, so they do get more stiff more often, like if you ran 5 miles each day.

Testing wise, I had almost the full gamut. EMG, MRI, EEG, EEG in home, every blood test looming for muscle overuse, flags, virus, vitamin levels, thyroid, hormones, endoscopy (due to globus). Everything was “clean” and good.

The only tests I haven’t completed, due to COVID (and likely will not, at this point), are a skin punch biopsy (looking for SFN), a spinal MRI, a voltage gated potassium channel test, and a sleep study with EMG/EEG, looking for muscle movement during sleep.

The reality of BFS / CBFS is that there is no test to diagnose it. It is a diagnosis of exclusion. You test to rule out MS, ALS, PD, small cell lung, srojens, lime, Epstein bar, neuropathies, brain tumors, eosinophilic esophagitis (globus is common with BFS) etc etc. When all that looks fine, yet you still have muscle buzzing/vibrations, PERCEIVED (NOT clinical) loss of strength, soreness, tingling, globus, tinnitus, numbing of the tongue, and the myriad of craziness that comes with BFS, then you likely have BFS.

One similarity that people can often relate to, diagnosis wise, is Fibromyalgia. We don’t really have tests to pinpoint it yet, but given time and persistence in symptoms, it’s a diagnosis that can eventually be reached.

Not sure if this is allowed but hopefully it is...what helped me in a VERY big way was joining the reddit group for BFS. It was ASTONISHING how many people came there scared out of their minds (usually Dr. Google pointing people to think ALS). So many people posting the huge list of EXACT symptoms I had/have. Google will wreck your head if you start typing in things like tremors, weak feeling, etc. It is not a good path to go down, mentally. Instead, that group I found was a huge help in educating me and helping me have better conversations with my medical team.

One shocking trend I found in that group was that the large majority of people noticed the onset of symptoms after one of three things: bad viral infection, traumatic injury, or a highly stressful life event. For me, mine started after being walloped by a severe viral infection in December. My vibrations began in the weeks after starting to recover, and it all grew into the BFS situation I’ve had for 6 months now.

Happy to answer any other questions.

I appreciate your sharing your path to this very unusual diagnosis, @novajeff. I will certainly keep you in mind when others with similar symptoms post on Connect!