Internal vibration with "nerve firing"
Hello everyone! I am so very happy to have found MayoClinic discussion boards.
My doctors are becoming very stumped on my case and I am becoming more hopeless as to them finding the issue. I am a 41 one year old mother of 5 and was incredibly active with weight lifting, HIIT workouts, very active in my home and with my kids. One day in early April, I just stopped working. This has taken a huge toll on me and my family as I am resting 90% of the day as to stay comfortable.
my story is long, so I will shorten it for a quick read. about 5 months ago, the left side of my body decided to cause me major issues. I feel like it completely shut down. I get terrible internal vibrations and when they stop, I feel this strange release and I get different nerve pains in my left side and right glute. Following these "episodes" my legs get so terribly weak (sometimes overall weakness), I feel like I am going to fall and my bowel and bladder continually become disrupted. I started to monitor my pulse during these episode and see that much of the time they work together somehow.
**An example: I will go up my stairs and my heart rate will Increase to 150 and I will notice I am also having an internal vibration. When it stops, I feel this flow through certain nerves, my legs get very heavy and weak, I have had numbness/tingling, and sometimes I get an urgent need to urinate or I start feeling my Bowels moving and making noises. I told many doctors I feel like something is misfiring, pinching nerves or causing vascular issues, but no one can find anything. I feel the best when I am laying down on my back and just resting. I use tennis balls along my spine to try and help pass gas (I feel like my intestines shut down constantly). Many times when I am just resting, my pulse will climb and I will start feeling all the nerves sensations and weakness setting in. The vibrations happen all day and wake me up in the night even on medication. Its a continuous cycle all day everyday and it's so very odd. I admit it gets me down going from incredibly fit and healthy to laying in bed, having bowel issues, bladder issues and very weak legs.
I'm looking to connect with those of you who have any suggestions or knowledge on my particular issue.
I had a battery of tests thus far : 2 CTS with contrast, Blood work, urinalysis, Thoracic MRI, Brain MRI (Pending results), ultrasound, HIDA scan, wore a heart monitor for 2 weeks, ECHO, 2 EKGs, Endoscopy, Multiple X-rays, Lumbar MRI (pending), I am in PT and seeing a Chiropractor, vaginal ultrasound. I am sure I am missing something, but I have been scanned pretty thoroughly.
Findings: 2 hemangiomas T1 & T11( where I get back pain), PACs, SVTs (Never have had heart issues), bochdalek hernia ( 1st CT, 2nd CT didn't show).
Specialists/Doctors: Cardiologist, GI, Neurologist, OBGYN, Primary care doctor, PMR doctor, Physical therapist, Chirop
Thank you for reading!!
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We are exactly the same. I am having Physical therapy now.
Brayimee, does your Vibrations ever stop or go to a diff speed? Have you taken any certain Vitamins or just reg every day Vit. ? Also have you been on any Prednisone ? These are hints that I’ve been researching. I too have been to numerous Drs. Who has NO idea what I’m experiencing. I’ve had them since Sept 20’. It’s miserable. Mine started in my left foot then next month it was at both knees by thanksgiving it shot up to my Bra line. So many tests. I feel like a Guine Pig. I go see another Nuerologist on Wed. @ Henry Ford. All this has taken a toll on my body. I feel like I’ve aged 10 yrs. I can’t sleep. I get 1-6 hrs a night. Sometimes I don’t at all like it’s 5:30am so what’s use of it now? I’m still trying to help get these Drs attn n looking up hints that’ll direct them which Dr to send me next. I’m not kidding, each week it’s a new Dr. my family has been trying to get me to start logging in my foods, Vits. Etc each day n go back over it to compare any days to each other. Well it’ll soon be 4 yrs this Sept. I’m leaning towards a pinched nerve n gonna Beg the Drs to re-check my MRI n see if they can see anything. Keep in touch on what you find out about your findings. I learn a lot from here. God Bless. Ohh, did I mention these internal Vibrations are 24/7… they never stop unless I’ve had a steroid. But that’s sometimes a 50/50 chance. It feels like grinding to the trunk of my body. It’s really bad at my groin section. I might be okay with it if I could only get rid of the Vibrations that goes down my leg to my feet. But I tend to fall over. I loose my balance. I too have had incontinence issues but been a yr since that happened. I have a feeling this all started from a bad vertigo spell where I went down hard. Try keeping a log n see if you notice any changes in your routines. Even cut back on caffeine. I hardly get any.
God Bless our Country 🇺🇸
Keep in touch.
Thinking outside the box…I wonder if “some” of these internal vibrations being reported throughout this blog could be related to our sensing an overload of our natural internal energies? Which drive all our individual autonomic nervous systems. As an example, we breath air, our heart beats, etc. for the most part subconsciously, but like the sleeping cat we only focus when there is a differential change; something not within our normal functioning. If your arm is suddenly injured we hyper-focus our attention to that injury. But, if suddenly we sense a new sharper pain somewhere else on our body we re-focus a vast majority of our attention there, away from our initial injury; the arm. Try refocusing your attention to an area that is normal, if possible. That may actually help? The causes for these vibrations likely run the gamut from newly sensed normal to dangerously abnormal. However, medical doctors use a standardized learned terminology; not our lay description's, so our descriptions may not compute, or fit their differential analysis. I once went to Norway where their English is like perfect. I was raised in Southern California and unconsciously use a lot of slag. A lot of the time they had no idea what I was saying…then I realized they never learned 1960’s local slang; especially from Southern California. That was a wake up, From their perspective, I didn’t speak understandable English; my native language. 🤔 We only know what we think we know…as we age we realize…
Do you have any thing like a Pacemaker or other electronic devices?
Yo nunca había tenido temblores internos hasta que al día siguiente se vacunarse contra COVID en mí cerebro sentí unos temblores espasmódicos A veces eran tan cortes que la mano y codo izquierdo se movían involuntariamente Luego dejó de pasar a los dos o tres días de vacunada Y tiempo después me volvió a pasar pero más débilmente. Nunca supe qué fue ni por qué se fue. Relajarme y tratar de dormir me ayudaba. Sé que no es tanto como te pasa a ti Pero quizá puedas relacionar el inicio de tus síntomas a algo en particular Un hecho puntual como una vacuna o un disgusto emocional potente A veces jamás se sabe qué es pero si desde cuándo aparece y eso ayuda a luchar contra eso que te afectó! No me.vacuné con pfizer. Por suerte no una de ellos usé.
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I have had the same problem for many years. Been through so many tests over 9 years. Now esophagus is not working properly, have Hashimoto's but my thyroid is still kicking. Finally had blood work done that shows I have Connective tissue disease with overlap. So far, it's Scleroderma, Lupus, Raynaud's, and a few more. Possibly have them do bloodwork for autoimmune problems. Stick to your guns with the doctors. Sometimes it takes years to figure these out. Big hugs.
This is interesting
https://multiplesclerosisnewstoday.com/news-posts/2024/04/18/aan-2024-ms-study-long-term-cnm-au8-shows-myelin-nerve-cell-gains/
https://www.alzforum.org/therapeutics/cnm-au8
I’ve had internal vibrations occasionally — started sometime after I was diagnosed with needing to go gluten free, and also diagnosed with EPI which is pancreatic insufficiency, probably caused by having a gut surgery in the past (I had bile duct/intestinal surgery a number of years ago, which is a known risk for getting EPI.)
The vibrations are very hard to explain!
Or…It may have been simply my switching from daily pop (12 - 24 oz daily) to black tea with spices (1 to 2 cups a day) that took care of the vibrations, as I haven’t had them since I switched (though I’m not sure the dates match up totally.). Dr explained that caffeine & other ingredients in soft drinks were bad for heart, etc. Caffeine in tea, evidently, reacts differently than caffeine in soft drinks….
How did you get on in the end? Sorry to ask as I can see it was a few years ago you posted . I am experiencing similar issues and nothing shows up in the MRI etc. Wishing you all the very best xx
How about seeing an endocrinologist? At times my body goes into overdrive from hyperthyroidism/graves’ disease.