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Anyone Found Help/Explanation for Long Covid Neurological Symptoms?

Posted by robinholly @robinholly, Feb 13, 2022

Has anyone found some help and explanation for their neurological symptoms? Symptoms like tremors, dizziness, difficulty walking, tingling in legs and back, muscles twitches in legs, hand tremors, cognitive dysfunction, ringing in ears, pain and burning in toes and feet. I have these symptoms and more. I have been through MRI of brain and full spine, peripheral nerve testing, muscle function and short fiber nerve tests all in the normal range despite the symptoms. I have been on 900mg gabapentin daily with little improvement, then things got much worse after getting the booster last month. Would love to hear from some that have found help and explanation.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

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lesligirl02 | @lesligirl02 | Apr 27 10:01am
In reply to @elliep "@lesligirl02 i used LDN until it stopped working. my suggestion is when you find an effective..." + (show)
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@lesligirl02 i used LDN until it stopped working.
my suggestion is when you find an effective dose stay on it, don’t go higher.
when my tremors worsen i take a small dose of Valium which works really well. it is very hard to get a prescription, but the doctors know Valium is what works.

Jump to this post

@elliep

I think as to the tremors, it would matter what type and where they originated from.
I am attaching the LDN info guides and they might provide some insight to you and your doctors as to helping the tremors.

Shared files

LDN 2026 patient guide (LDN-2026-patient-guide-7.pdf)

LDN 2026_Prescriber_Guide (LDN-2026_Prescriber_Guide-8.pdf)

LDN 2026_Mental_Health_Guide (LDN-2026_Mental_Health_Guide-8.pdf)

LDN 2026-DOSING-GUIDE (LDN-2026-DOSING-GUIDE-2.pdf)

REPLY
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truwomandi | @truwomandi | May 6 12:11pm
In reply to @rwinney "Hi @robinholly and @vonpinnon. How frustrating this all is, especially for a 12 year old. I..." + (show)
Profile picture for Rachel, Volunteer Mentor @rwinney

Hi @robinholly and @vonpinnon. How frustrating this all is, especially for a 12 year old. I have no experience with COVID, but do have experience with the symptoms you've describe. All of my neurological tests were also negative and caused more confusion as to why I was experiencing this uncertainty in my body. Ultimately, I discovered that I have Central Sensitization Syndrome (CSS) and was treated at Mayo's Pain Rehabilitation Center (PRC) by Dr. Christopher Sletten.

CSS, as explained by Dr. Sletten in the following video, is an upregulation of the central nervous system which can affect a plethora of symptoms like nerve, muscle, joint and bone pain, sensory issues, tremors, vibrations, gut issues, etc... The body experiences hypersensitivity and goes into fight or flight mode. The upregulation takes place in the spinal cord and brain sending louder messages.

Find more info here:


Many specialists, like neurologists, do not know much about CSS or symptom management beyond medications such as nerve meds.

I wanted to bring Central Sensitization in to the conversation as you continue researching and connecting with others experiences in hope that it may make some sense of the unsettledness you feel.

Please free to ask any questions you may have. I am rooting for you! Do you mind getting back to me with your thoughts on what I have presented?

Jump to this post

@rwinney The end of the video says to call if you struggle with daily functioning. Then what? What do they do or suggest?

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1 reply
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taunya6543 | @taunya6543 | May 6 8:02pm

My doctors told me not to get the boosters anymore..said they did not know what it would do to me...sorry it made you worse..

REPLY
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tiredoflc | @tiredoflc | May 7 6:19am
In reply to @rwinney "Hi @robinholly and @vonpinnon. How frustrating this all is, especially for a 12 year old. I..." + (show)
Profile picture for Rachel, Volunteer Mentor @rwinney

Hi @robinholly and @vonpinnon. How frustrating this all is, especially for a 12 year old. I have no experience with COVID, but do have experience with the symptoms you've describe. All of my neurological tests were also negative and caused more confusion as to why I was experiencing this uncertainty in my body. Ultimately, I discovered that I have Central Sensitization Syndrome (CSS) and was treated at Mayo's Pain Rehabilitation Center (PRC) by Dr. Christopher Sletten.

CSS, as explained by Dr. Sletten in the following video, is an upregulation of the central nervous system which can affect a plethora of symptoms like nerve, muscle, joint and bone pain, sensory issues, tremors, vibrations, gut issues, etc... The body experiences hypersensitivity and goes into fight or flight mode. The upregulation takes place in the spinal cord and brain sending louder messages.

Find more info here:


Many specialists, like neurologists, do not know much about CSS or symptom management beyond medications such as nerve meds.

I wanted to bring Central Sensitization in to the conversation as you continue researching and connecting with others experiences in hope that it may make some sense of the unsettledness you feel.

Please free to ask any questions you may have. I am rooting for you! Do you mind getting back to me with your thoughts on what I have presented?

Jump to this post

@rwinney
Great talk about
CSS Central Sensation Syndrome
by Dr Chris Sletton
I learned a lot
Health care providers need to
hear this !
Thank you for sharing

REPLY
2 replies
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tiredoflc | @tiredoflc | May 7 6:21am
In reply to @tiredoflc "@rwinney Great talk about CSS Central Sensation Syndrome by Dr Chris Sletton I learned a lot..." + (show)
Profile picture for tiredoflc @tiredoflc

@rwinney
Great talk about
CSS Central Sensation Syndrome
by Dr Chris Sletton
I learned a lot
Health care providers need to
hear this !
Thank you for sharing

Jump to this post

@tiredoflc
correction from prior post
CSS Central Sensitization Syndrome

REPLY
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elliep | @elliep | May 7 8:57am

when my internal tremors, etc. get bad i take a quarter of a 5 mg valium. it is the drug that works best for me. it is very difficult to get a prescription. i only take it when i feel it is necessary. Zoloft did not work, nor Cymbalta for me. both are easy to get. maybe they could work for you.
LDN made me feel better but was not effective. i took it early on.
other drugs that i have tried briefly and not successfully were gabapentin and propranolol. i tried a CBD product recently which made the tremors worse.
sorry for your pain.

REPLY
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Mentor
Rachel, Volunteer Mentor | @rwinney | 2 days ago
In reply to @truwomandi "@rwinney The end of the video says to call if you struggle with daily functioning. Then..." + (show)
Profile picture for truwomandi @truwomandi

@rwinney The end of the video says to call if you struggle with daily functioning. Then what? What do they do or suggest?

Jump to this post

Hello @truwomandi. You can find more information about the Mayo Clinic Pain Rehabilitation Center, as well as apply, in the following link:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
And here is the Mayo Clinic Pain Rehab Center blog written by PRC staffers which offers a wealth of knowledge about the program including participants experiences:
https://connect.mayoclinic.org/blog/chronic-pain-symptoms-rehabilitation/
There's a lot of good stuff to review! I'm hoping it provides answers to your questions of "then what?" and "what do they do or suggest?"

Were you inquiring for yourself or someone else?

REPLY
Profile picture for Rachel, Volunteer Mentor
Mentor
Rachel, Volunteer Mentor | @rwinney | 2 days ago
In reply to @tiredoflc "@rwinney Great talk about CSS Central Sensation Syndrome by Dr Chris Sletton I learned a lot..." + (show)
Profile picture for tiredoflc @tiredoflc

@rwinney
Great talk about
CSS Central Sensation Syndrome
by Dr Chris Sletton
I learned a lot
Health care providers need to
hear this !
Thank you for sharing

Jump to this post

You're welcome @tiredoflc.

REPLY
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bereese | @bereese | 1 day ago

It sounds as though whatever medical protocols you do... the tremors do not go away. After 6 years of 24/7 internal tremors, I feel as helpless as ever. I would love to lose the fatigue, indigestion, brain fog, insomnia and all the other hindrances to a "regular" healthy world, but if the tremors don't go away... 😫

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