Anyone Found Help/Explanation for Long Covid Neurological Symptoms?

Thank you, this is something I have thought about, going to a neurologist, But wasn't sure what can be done to help repair, or at least maintain and hopefully not get any worse..

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Hi @dawnmw and others in group. I was not hospitalized but ER doctors and PCP basically told me same thing. Feel my past experience running multi physician specialty practices over 20 yrs., need to share perspective and please dont give up and use helpful info from this site to find healing info specific to you. -Took pick of my lower legs and feet yesterday to prove year later still issue. Also had rare 1 inch round inverted bumps throughout my body which even caused difficulties breathing on neck, could not get appt for months when nothing present and told call for appt when reappear? Still laying in bed typing this after taking almost 3 hrs meditating/breathing exercises due to nightly covid created apnea episodes of over 20 hr. /O2 in 80’s, finally verified by sleep study thru post covid doctor year later ( only one visit allowed with them in my healthcare system) , yet still cant get physical assistance ordering/transportation to obtain respiratory therapist supported oCPAP(most insurances do not cover even with dme benefit), months later. Yes even used professional sources thru social work/local county and state to no avail. Worse, yesterday after over year no ability to work/no income creating no heat in house with high 55 for over a month that Pcp states need to get heat for exacerbating symptoms?, Social Security Disability/Health Human Serv rep stated I could just complete paperwork in remainder of 24 day period allowed-week to receive it, week to try to fill out few lines, few days to be well enough again to make call requiring oxygen to prevent crash after, to be told family member/friend etc can assist in remaining few days and not the over phone completion promised by local office months prior? ☹️, No notes available/read by rep ? And the sad audacity to assume everyone has help, is lessen every person in capacity to be making these life affecting decisions should have at home in person experience with the disabled ,or heaven forbid, have gone thru something like this themselves as so many on these support sites have no help. This journey has proven to me how broken healthcare is, needs pivot to truly enable appts at time of symptom/issue with providers who are given/required/verified training of debilitating symptom info as we are all sharing the truth of things previously perceived doubtful. Yes, took couple of hours to type this and I will pay dearly but our stories need to be heard to hopefully help all! Healing journeys to all🌈

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Yes, well just reset your nervous system by natural means instead. An ice bath will work (2-3 minutes if you can stand it), or do the same in the shower by switching from VERY hot to VERY cold water, back and forth, as much as you can stand it. A total reset of the vagal nerve is necessary, as well as an anti-inflammatory and low-histamine diet.

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glad to see someone putting this simple solution in the blog... The science is in and ice baths are neurologically beneficial. Documented in science based clinical trials. Dopamine without withdrawal and it can last most of the day.

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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?

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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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Hello @okradurham- it is a powerful feeling, isn't it? Feeling validated and heard made me cry, too, when I first watched the CSS video. It's my pleasure to help any way I can. You and many others are really going through it without complete understanding. It's important to be given facts about why your body is in this upheaval and how to manage symptoms. There is hope, and is a plan, but of course not everyone can get to the Mayo Clinic Pain Rehabilitation Center. However, following the components and teachings of the rehab plan can benefit anyone. More is explained here:

Mayo Pain Rehabilitation Center:

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

You said it well, "giving yourself permission to not do things". We call that "push/crash", in the PRC. Giving ourselves grace during the process of recovery and getting to know our new selves, is pivotal. The program covers a lot of CBT (cognitive behavioral therapy) which is kind of the foundation to progress forward.

I have more videos to share from the PRC Family Days, which are held once a week during the 3 week program for families to learn about what patients are going through and how to be their positive support system during and after PRC. Are you thinking about attending the Pain Rehab Center? Which location are you closest to?

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Absolutely no energy to attend but would love the videos! Today is a very bad day I just need to rest

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Absolutely no energy to attend but would love the videos! Today is a very bad day I just need to rest

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