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Anyone Found Help/Explanation for Long Covid Neurological Symptoms?
Post-COVID Recovery & COVID-19 | Last Active: Oct 13, 2023 | Replies (143)Comment receiving replies
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:
https://youtu.be/vJNhdnSK3WQ
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?
Replies to "Hi @robinholly and @vonpinnon. How frustrating this all is, especially for a 12 year old. I..."
This sounds like a POTS precursor?
Well I am sitting here in tears.. I loved this video . It explained what I am going through post Covid to a (T)!!! The doing and crashing is sooo familiar! I have never had Abnormal bloodwork until Covid knocked me flat! It’s not terribly abnormal just in the red zone SLOWLY improving. Now I’m learning to put the brakes on! Giving myself permission to not do things. Thank you so much. I feel validated for the first time ! I didn’t think I was crazy ‼️😊
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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.