Strange symptoms rapidly worsening -back pain, vibrating legs and body

Posted by tennis123 @tennis123, Jun 3, 2023

I have been having extremely weird symptoms and I've been having a hard time getting in to see a neurologist. I have been having extremely bad low back pain for about 6 months now with weird tingly sensations in the area. It has progressed and gotten severe and now am having muscle spasms in my legs and pelvic area. I am now also experiencing a vibrating sensation in my pelvis and both legs if I sit down. If I lay back and put any pressure on my spine, I am now experiencing it throughout my whole body. It only occurs when putting pressure on my back. If I lay down on my stomach it doesn't occur. Has anyone heard of this?

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

@tennis123

Hi,

I've made a post in another group but I am convinced that I may have a form of neuropathy, so I thought I would post here and see if anyone has any advice or has experienced similar symptoms.

I am in my late 20s and have been having strange symptoms for a few years that have been having a waxing and waning kind of pattern. The symptoms include tingling, whole body fasciculations, muscle tightness and spasms. Most recently for the past few months, I have been having terrible hot flashes with excessive sweating on the central areas of my face, terrible neck and back pain (tightness with sharp stabbing, burning areas of pains in random areas of my spine), and worse tingling/fasciculations/spasms. My muscles have started shaking when doing things such as if I squat down or lean my head on my arm, when this sort of thing never happened previously. When I sit down my entire lower body feels like it's vibrating. I haven't received a diagnosis, and I don't know what to do at the point as everything seems to be worsening and I'm at my wits end. I have had all sorts of testing and everything has come back normal. It is worsening so fast that I'm considering going to the ER but I know it would probably be a massive money sink without much benefit. Has anyone experienced anything similar or have any advice?

Jump to this post

I have experienced some of these symptoms. Tingling, facial snd neck spasms snd vibrating when sit or lie down. The fact that it is intermittent or waxing and waning is a real clue.
Stress. Pure stress.
Ask yourself sone questions about your life. Are you living your best life? Are you living according to your belief system with expectations met? Do you have positive people around you.
If not, instigate some lifestyle changes.
Eat healthy
Exercise (yes) walking, swimming, gym
Make some changes where needed - job, partner, family,
Take charge of your life.
Laugh at funny movies every day
Don’t take others stuff on board.
All your symptoms can be related to stress.
Give it a good go
Ready steady GO

REPLY
@tennis123

Hi,

I've made a post in another group but I am convinced that I may have a form of neuropathy, so I thought I would post here and see if anyone has any advice or has experienced similar symptoms.

I am in my late 20s and have been having strange symptoms for a few years that have been having a waxing and waning kind of pattern. The symptoms include tingling, whole body fasciculations, muscle tightness and spasms. Most recently for the past few months, I have been having terrible hot flashes with excessive sweating on the central areas of my face, terrible neck and back pain (tightness with sharp stabbing, burning areas of pains in random areas of my spine), and worse tingling/fasciculations/spasms. My muscles have started shaking when doing things such as if I squat down or lean my head on my arm, when this sort of thing never happened previously. When I sit down my entire lower body feels like it's vibrating. I haven't received a diagnosis, and I don't know what to do at the point as everything seems to be worsening and I'm at my wits end. I have had all sorts of testing and everything has come back normal. It is worsening so fast that I'm considering going to the ER but I know it would probably be a massive money sink without much benefit. Has anyone experienced anything similar or have any advice?

Jump to this post

@tennis123, you will notice I have moved your post into your other post on this topic to keep all of your updates together for members to follow along. You can find your post here:
- Strange symptoms rapidly worsening: https://connect.mayoclinic.org/discussion/lower-back-pain-vibrating-legs-and-body/

REPLY
@tennis123

Hi,

I've made a post in another group but I am convinced that I may have a form of neuropathy, so I thought I would post here and see if anyone has any advice or has experienced similar symptoms.

I am in my late 20s and have been having strange symptoms for a few years that have been having a waxing and waning kind of pattern. The symptoms include tingling, whole body fasciculations, muscle tightness and spasms. Most recently for the past few months, I have been having terrible hot flashes with excessive sweating on the central areas of my face, terrible neck and back pain (tightness with sharp stabbing, burning areas of pains in random areas of my spine), and worse tingling/fasciculations/spasms. My muscles have started shaking when doing things such as if I squat down or lean my head on my arm, when this sort of thing never happened previously. When I sit down my entire lower body feels like it's vibrating. I haven't received a diagnosis, and I don't know what to do at the point as everything seems to be worsening and I'm at my wits end. I have had all sorts of testing and everything has come back normal. It is worsening so fast that I'm considering going to the ER but I know it would probably be a massive money sink without much benefit. Has anyone experienced anything similar or have any advice?

Jump to this post

Nearly same symptoms as you describe started 5 months ago and experiencing most daily since. 2 trips to ER were huge waste$. I’m 64 and it’s frightening how fast they’ve come on and without “remission”. Have had 4 mri I insisted PCP order. While I wait for appointment with neurologist next month, PCP says MRIs all normal. Very obvious to me that something is very wrong. Also muscle tone gone flaccid real fast, even in cheeks of my face.
PCP put me on gabepentin. Does nothing but help me fall asleep for a few hours at night, while body vibrates with electri current 24/7.
I hope you find some answers soon.

REPLY

Hi,

I am in my 20s and have started having symptoms that have been worsening. The symptoms include hot flashes with profuse episodes of facial sweating, waxing and waning neck and back pain (which has now progressed to always being in pain in some area of my neck/spine), muscle spasms in my pelvic area and legs, fasciculation in legs, vibrating sensation in back and both legs (sometimes I can feel the muscles in my thighs and physically feel them moving/tremoring very very fast). My legs have recently started vibrating/tremoring/shaking when I'm standing up (I am very scared). The pain is usually dull/boring pain along with nerve like pain like sharp pains. It sometimes feels like my entire spine/spinal cord is being pulled on from my neck all the way down into my lumbar spine. I had a non contrast MRI of my entire spine months ago before the symptoms got as bad as they are now. I am very scared and am having the worst time getting into a neurologist. I've had repeated workups that have been negative such as acute phase reactants and autoimmune panels etc. Has anyone experienced anything like this? It almost feels like the inside of my spine is inflamed throughout the length of it or something structural maybe in my neck causing pain all down my spine.

REPLY
@tennis123

Hi,

I am in my 20s and have started having symptoms that have been worsening. The symptoms include hot flashes with profuse episodes of facial sweating, waxing and waning neck and back pain (which has now progressed to always being in pain in some area of my neck/spine), muscle spasms in my pelvic area and legs, fasciculation in legs, vibrating sensation in back and both legs (sometimes I can feel the muscles in my thighs and physically feel them moving/tremoring very very fast). My legs have recently started vibrating/tremoring/shaking when I'm standing up (I am very scared). The pain is usually dull/boring pain along with nerve like pain like sharp pains. It sometimes feels like my entire spine/spinal cord is being pulled on from my neck all the way down into my lumbar spine. I had a non contrast MRI of my entire spine months ago before the symptoms got as bad as they are now. I am very scared and am having the worst time getting into a neurologist. I've had repeated workups that have been negative such as acute phase reactants and autoimmune panels etc. Has anyone experienced anything like this? It almost feels like the inside of my spine is inflamed throughout the length of it or something structural maybe in my neck causing pain all down my spine.

Jump to this post

Do you have a primary care doctor who could do an expedited referral to a neurologist? With these symptoms, you need to see someone quickly. You could also try an ER at a major hospital. An MRI of your brain might be helpful, if a doctor orders one. So the MRI of the spine was normal?

Have you had Lyme test? Try to get a Western Blot, not the Elisa they use for screening. You can ask your PCP about this.

REPLY
@tennis123

Hi,

I am in my 20s and have started having symptoms that have been worsening. The symptoms include hot flashes with profuse episodes of facial sweating, waxing and waning neck and back pain (which has now progressed to always being in pain in some area of my neck/spine), muscle spasms in my pelvic area and legs, fasciculation in legs, vibrating sensation in back and both legs (sometimes I can feel the muscles in my thighs and physically feel them moving/tremoring very very fast). My legs have recently started vibrating/tremoring/shaking when I'm standing up (I am very scared). The pain is usually dull/boring pain along with nerve like pain like sharp pains. It sometimes feels like my entire spine/spinal cord is being pulled on from my neck all the way down into my lumbar spine. I had a non contrast MRI of my entire spine months ago before the symptoms got as bad as they are now. I am very scared and am having the worst time getting into a neurologist. I've had repeated workups that have been negative such as acute phase reactants and autoimmune panels etc. Has anyone experienced anything like this? It almost feels like the inside of my spine is inflamed throughout the length of it or something structural maybe in my neck causing pain all down my spine.

Jump to this post

I recently went to the ER at one o the Mayo campuses a few days ago actually. I was hoping to get rescanned there but they only did repeat blood work because my neurological exam is overtly normal. I have no focal deficits which I guess is fortunate but unfortunate in the aspect that I'm taken less seriously. They did however give me a referral to neurology and they said they usually can get you in within a week, so I should be able to see one soon!

I had a broad based disc bulge at C5/C6 with no signs of damage or compression of the cord and otherwise my MRI was completely normal. I will ask for a Lyme test! Thank you.

REPLY

Hi @tennis123, I merged the 3 discussions you started into one discussion that appears in both the Brain & Nervous System support group and the Spine Health support group. I did this so that you can see all the comments in one place and keep members posted on your progress.

I see that you've had a neurological exam that didn't show any abnormalities. I'm glad that Mayo ER made a referral to Neurology for you.

Do you live in a tick and high-risk Lyme area?

REPLY
@tennis123

Hi,

I've made a post in another group but I am convinced that I may have a form of neuropathy, so I thought I would post here and see if anyone has any advice or has experienced similar symptoms.

I am in my late 20s and have been having strange symptoms for a few years that have been having a waxing and waning kind of pattern. The symptoms include tingling, whole body fasciculations, muscle tightness and spasms. Most recently for the past few months, I have been having terrible hot flashes with excessive sweating on the central areas of my face, terrible neck and back pain (tightness with sharp stabbing, burning areas of pains in random areas of my spine), and worse tingling/fasciculations/spasms. My muscles have started shaking when doing things such as if I squat down or lean my head on my arm, when this sort of thing never happened previously. When I sit down my entire lower body feels like it's vibrating. I haven't received a diagnosis, and I don't know what to do at the point as everything seems to be worsening and I'm at my wits end. I have had all sorts of testing and everything has come back normal. It is worsening so fast that I'm considering going to the ER but I know it would probably be a massive money sink without much benefit. Has anyone experienced anything similar or have any advice?

Jump to this post

You say you haven’t received a diagnosis yet you’ve been experiencing this for sometime. Have you seen a medical professional and have you had any studies done to help identify your problem? As John Bishop stated we’re jointly all sufferers of one kind or another and we confuse you with too much anecdotal info of our own issues.

REPLY
@tennis123

Hi,

I am in my 20s and have started having symptoms that have been worsening. The symptoms include hot flashes with profuse episodes of facial sweating, waxing and waning neck and back pain (which has now progressed to always being in pain in some area of my neck/spine), muscle spasms in my pelvic area and legs, fasciculation in legs, vibrating sensation in back and both legs (sometimes I can feel the muscles in my thighs and physically feel them moving/tremoring very very fast). My legs have recently started vibrating/tremoring/shaking when I'm standing up (I am very scared). The pain is usually dull/boring pain along with nerve like pain like sharp pains. It sometimes feels like my entire spine/spinal cord is being pulled on from my neck all the way down into my lumbar spine. I had a non contrast MRI of my entire spine months ago before the symptoms got as bad as they are now. I am very scared and am having the worst time getting into a neurologist. I've had repeated workups that have been negative such as acute phase reactants and autoimmune panels etc. Has anyone experienced anything like this? It almost feels like the inside of my spine is inflamed throughout the length of it or something structural maybe in my neck causing pain all down my spine.

Jump to this post

I have not experienced this, and I'm sorry that you are going through this. The only thing I would do is to take Magnesium citrate (400mg) and potassium citrate at least 10 capsules (99mg each). This calms the nervous system. I would do this until you get the help you need. Good luck with everything.

REPLY
@tennis123

Hi,

I am in my 20s and have started having symptoms that have been worsening. The symptoms include hot flashes with profuse episodes of facial sweating, waxing and waning neck and back pain (which has now progressed to always being in pain in some area of my neck/spine), muscle spasms in my pelvic area and legs, fasciculation in legs, vibrating sensation in back and both legs (sometimes I can feel the muscles in my thighs and physically feel them moving/tremoring very very fast). My legs have recently started vibrating/tremoring/shaking when I'm standing up (I am very scared). The pain is usually dull/boring pain along with nerve like pain like sharp pains. It sometimes feels like my entire spine/spinal cord is being pulled on from my neck all the way down into my lumbar spine. I had a non contrast MRI of my entire spine months ago before the symptoms got as bad as they are now. I am very scared and am having the worst time getting into a neurologist. I've had repeated workups that have been negative such as acute phase reactants and autoimmune panels etc. Has anyone experienced anything like this? It almost feels like the inside of my spine is inflamed throughout the length of it or something structural maybe in my neck causing pain all down my spine.

Jump to this post

This sounds very similar to what I’m experiencing. I was convinced it MS, but neurologists, based on MRI, does not. 5 months of living in pain or extreme discomfort on good days. About to get a spinal tap and I want to be sure they test for everything possible, so I have been doing research. Years ago I got genital herpes and after the original outbreak, I would get an outbreak only very occasionally usually during extremely stressful times. I never took anti-viral, because it would typically be gone in 3-5 days and happen maybe once every couple years. I bring this up because I think this has something to do with the hell storm of neurological attacks happening to me right now. I’ve found articles too that support.
While I find a lot of information here, I’ve yet to find anyone with my symptoms, but what you describe comes close. Hope you find some answers soon.

REPLY
Please sign in or register to post a reply.