Anyone Found Help/Explanation for Long Covid Neurological Symptoms?

Hello, First comment through here as I am searching for answers myself. I feel as if I can duplicate what you had wrote except I chose not to be medicated even though the gave me gabapentin. I am a personal trainer very physically active (or at least I was as I have had to retire a few of my favorite outdoor activities like running) The neuropathy I experienced started 1 year ago after my recovery from covid 19 The year has been filled with a long list of tests and doc appointments to no avail. It started in my calves and feet after a walk/ run with a client. then after my second vax it went into my arms . Now 1 year later I have non stop tingling feet, legs, arms and face. It sometimes feels as if I am wearing lead thigh highs and it is not painful ( there are times ) but irritating and constant. I have scheduled my clients with breaks in between so I can take 'power naps" to work through my day and am physically and mentally exhausted when I get home. I have had to reschedule people so it is affecting my quality of life daily.
I created a time line of how things happened through the year and would really like a second opinion from Neurology as I am in the Mercy Health System. There is definitely something wrong with my nerves. I currently am not on any meds nor was I before the start of this. It was almost reliving to hear someone else has this too. I am not the only one. Have you found any answers yet?

Hello, First comment through here as I am searching for answers myself. I feel as if I can duplicate what you had wrote except I chose not to be medicated even though the gave me gabapentin. I am a personal trainer very physically active (or at least I was as I have had to retire a few of my favorite outdoor activities like running) The neuropathy I experienced started 1 year ago after my recovery from covid 19 The year has been filled with a long list of tests and doc appointments to no avail. It started in my calves and feet after a walk/ run with a client. then after my second vax it went into my arms . Now 1 year later I have non stop tingling feet, legs, arms and face. It sometimes feels as if I am wearing lead thigh highs and it is not painful ( there are times ) but irritating and constant. I have scheduled my clients with breaks in between so I can take 'power naps" to work through my day and am physically and mentally exhausted when I get home. I have had to reschedule people so it is affecting my quality of life daily.
I created a time line of how things happened through the year and would really like a second opinion from Neurology as I am in the Mercy Health System. There is definitely something wrong with my nerves. I currently am not on any meds nor was I before the start of this. It was almost reliving to hear someone else has this too. I am not the only one. Have you found any answers yet?

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:

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?

I’m sad to share that I have not found any answers for our condition. I do have an virtual appointment with Northwestern’s Long Covid Neuro Clinic on March 23rd. I have been waiting over 8 months for this appointment. Hoping they have some insight on our neuro involved long Covid. If you are interested in learning more about Northwestern’s clinic it’s easy to find by just googling them.
I too get intensified symptoms after activity. Though I will say many days there is a continuous present thrumming under the skin. I was also very active before Covid. Runner, hiker, distance cycling. I have had to give up all of it. When I have a good day, even a slow walk around the neighborhood, with assistance of my cane, can land me with over active nerves, muscle twitches, extreme leg weakness and tremors. And since the booster shot I got the end of Dec, I get all those symptoms in my upper body, back, arms and hands too.
I had mentioned in a previous post here that I am very curious about the research on micro clots in the blood possibly causing symptoms that mimic neurological symptoms. The information I saw was research coming out of South Africa and Europe. I’m wondering if they are re looking for this is patients in the US. It will be something I am sure to ask when I talk with Northwestern next week.
Lastly, I wanted to share this resource. https://youtube.com/c/RUNDMC1
I have been following Gez for the year now and find the information he shares as VERY helpful. Maybe some others following this thread will find this helpful also. (Hope it’s ok to share this here)

I've been dealing with chronic symptoms Post viral perhaps Covid from early 2020. All of us in our health care office were sick with respiratory problems with lots of coughing for weeks. After that my feet started getting numbness and my shoes felt tight. I had been very active at the fitness center prior, evening teaching an aerobic dance class. My feet kept getting worse. Then we were quarantined and I lost my job. It was still just my feet that bothered me and I began getting blood tests and other testing done at Mayo in Rochester, MN. In Feb 2021 I got the 2 vaccinations (Pfizer). That Spring and summer my symptoms started crawling up my ankles and calves. Over the last half a year now the nerve zaps going up my legs, both lateral and medial, up into my crotch and buttocks. Now I get nerve zaps all over my body, up and down my spine, breasts, arms, even my head. My legs are very fatigued all the time. the numbness never goes away and sometimes turns into pain. I live within an hour of the Mayo Clinic in Rochester, MN and also see doctors in Red Wing Mayo. I cannot seem to take the medicines offered, but they didn't help anyway. Gabapentin, Cymbalta, and Lyrica. Symptoms actually got worse. I'm at the end of my rope. I am hoping your system could be done in Minnesota. Thank you, Cher Marie, Pepin, Wisconsin.

Wow, thank you so much for introducing Gez and his you tube videos. I watched 2 so far and they will be extremely helpful as I navigate long Covid.

I've been dealing with chronic symptoms Post viral perhaps Covid from early 2020. All of us in our health care office were sick with respiratory problems with lots of coughing for weeks. After that my feet started getting numbness and my shoes felt tight. I had been very active at the fitness center prior, evening teaching an aerobic dance class. My feet kept getting worse. Then we were quarantined and I lost my job. It was still just my feet that bothered me and I began getting blood tests and other testing done at Mayo in Rochester, MN. In Feb 2021 I got the 2 vaccinations (Pfizer). That Spring and summer my symptoms started crawling up my ankles and calves. Over the last half a year now the nerve zaps going up my legs, both lateral and medial, up into my crotch and buttocks. Now I get nerve zaps all over my body, up and down my spine, breasts, arms, even my head. My legs are very fatigued all the time. the numbness never goes away and sometimes turns into pain. I live within an hour of the Mayo Clinic in Rochester, MN and also see doctors in Red Wing Mayo. I cannot seem to take the medicines offered, but they didn't help anyway. Gabapentin, Cymbalta, and Lyrica. Symptoms actually got worse. I'm at the end of my rope. I am hoping your system could be done in Minnesota. Thank you, Cher Marie, Pepin, Wisconsin.