Internal vibration with "nerve firing"

Posted by brayimee @brayimee, Aug 2, 2020

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!!

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

@brayimee

Hmmmm! I did just now read about it. I do have some symptoms. I will see if my doctor wants to take a look, he hasn't been open to many of my suggestions.
I was sick most of January this year and was put on antibiotic doxycycline in February. That is the only thing I can think of. I woke up end of March with upper left abdomen pain that wrapped around to flank. It lasted a few days and subsided. Then a few weeks later, I woke up with the same pain and it never went away. Everything got worse. Some pain has subsided, but my left side has so very many symptoms ( and sometimes the right side also gets tight around the abdomen) and the heart rate?? I was a weight lifter, runner, HIIT junkie and now going up my stairs causes a 150 pulse. And these weak legs scare me.
I just don't understand and it makes me so very sad that I just lay around all day after being so active. I'm not a quitter, and this has stopped me in my tracks.
Thank you so much, Hank!!
Aimer

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@brayimee also, what was the specific thing that they were giving you doxycycline in January for? I have read that infections can lead to GB syndrome as well.

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@jesfactsmon

@brayimee Not that I want this to be your ultimate diagnosis, but it's really important to rule it out. And if it is Guillain-Barré at least you will know it.

Here are two Mayo Clinic web pages on it:

https://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/symptoms-causes/syc-20362793
https://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/diagnosis-treatment/drc-20363006

This page has Mayo doctors that treat Guillain-Barré:
https://www.mayoclinic.org/diseases-conditions/guillain-barre-syndrome/doctors-departments/ddc-20363037

Do you live near any of the Mayo sites? Best, Hank

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I will definitely mention this and read up.
I am in Michigan, so not far, but not close 🙂
Aimee
My health is worth the travel.

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@jesfactsmon

@brayimee also, what was the specific thing that they were giving you doxycycline in January for? I have read that infections can lead to GB syndrome as well.

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No real reason. Just because I had been sick for a month and it was given incase I developed pneumonia. I wasn't even tested for flu.
Aimee

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@brayimee

No real reason. Just because I had been sick for a month and it was given incase I developed pneumonia. I wasn't even tested for flu.
Aimee

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Okay, well, it's possible whatever was wrong with you in January could be related to your developing this illness, especially if it turns out to be GB. I read that it can take up to six weeks to develop after the trigger event (such as having a flu) and that sounds like the right time frame doesn't it? Well, If it turns out not to be GB then maybe it could be related to contracting some type of weird virus.

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@brayimee did u get these internal vibrations sorted. I have the same thing 24/7 going past a yr. Feels electric and wen it slows or stopped ur body feels ugly

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@brayimee

I'm 41 years young. So I'm not sure about menopause?
I will keep digging and advocating for myself. I need to get better for my family. 5 children keep me going, but I can't mom the way I did 5 months ago and it breaks my heart.

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Did you have covid or a vaccination before these symptoms?

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Hi @brayimee. Did you ever receive a diagnosis? I am experiencing the exact same symptoms and could really use help as my doctors have sent me for so many tests and cannot tell me what’s going on.

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I have similar symptoms and of course nothing was found until one neurologist suggested doing genetic testing. I found out I have a rare neurological disorder called Hereditary nerve Pressure Palsy. As I got older it got worse and started affecting my bladder and bowels, all my muscles in arms and legs and I get lots of internal vibrations and nerve pain and fatigue. I highly suggest genetic testing.
Good luck and I hope they find the source of the problem. It’s very frustrating!

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I was googling my symptoms and you came up.
I had a bad reaction to a vaccine April 2021.
I swelled up everywhere, it affected my heart, liver, pancreas, entire digestive system.
I would get a shaking or a tremor starting under my heart at the xyphoid process, I had so much swelling back then, stomach, arms legs, ankles face my BP was very low 80/50 even lower at times, took a long time to go away, I thought I was going to die.
But now, the tremor goes all the way down into my abdomen and can make my legs feel like they are shaking and then weak/heavy after. The worst is about 3:00am in the morning and I'm sleeping on my back and it wakes me up. Sometimes it feels as though there is glass in my abdomen when I turn on my side? With it is often a terrible sweat with nausea. Mornings are rough getting going mainly because I don't get sleep after that but it gets better and is just little tremors occasionally during the day. I'm tired after 4 hours of sleep a night.

My Ct scan showed liver cysts, a nodule on my lung, diverticulosis, some engorged adexnal veins? basically I got systemic inflammation, but also showed compression of the celiac plexus by the arcuate ligament. I think that is near T-11-12. My bloodwork was crazy too.
Have you ever cut your finger on glass? That is the feeling I get when it's bad. I didn't get any treatment Dr. said it would take time to go away, and said I had something like long haul covid but for vaccines except this last bit with the tremor has not, might even be getting worse.

Did you have covid? I had covid in March of 2020 but it was just a fever and a really bad sore throat and I was fine after that. They thought maybe that's why I had such a strong reaction to the vaccine, but your symptoms sound a lot like mine. I thought it was vascular but maybe its neurological, or poor lymph drainage and the swelling presses on nerves.

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Hi I know this is a few years old but did you ever figure it out?

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