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@smdawson540

I have POTS from Long COVID which attacked my autonomic nervous system causing several life long issues. I go to the Johns Hopkins Long COVID clinic where I am lucky to have a physical therapist who works specifically with POTS patients. I have been told there are not a lot out there. I wear an abdominal binder, compression socks are also an option. I can't wear compression socks due to CRPS in my right foot - extreme form of neuropathy. I have a physiatrist at UVA and a Rheumatologist. This team of doctors has been wonderful. Had many trials with other doctors and tons of medical testing before getting to this point. I am trying to be in the present with my medical issues and do what I can to alleviate/mitigate as many of the symptoms as I can. Since wearing the abdominal binder, I can sit up and stand most of the time without insane dizziness. I also do not pass out when wearing the binder. I got it on Amazon. Best thing I have bought since getting Long COVID. I have more "less horrible days" now. I still have some really bad days as the barometric pressure impacts my neuropathy and CRPS. I have been told I might not be able to fly again. At this point, going out of the house to do anything is enough. I have made a point to research each of the issues that Long COVID triggered in me instead of looking for a cure for Long COVID. I need to be able to understand what is wrong with me now and what I can do about it right now. I tend to live day to day now. It helps keep my anxiety level in check along with breathing exercises. The more anxious I get, the more my symptoms all go crazy. I am so sorry you are going through this! I would have your blood work done to see your antibody level before being boosted. My Rheumatologist did this for me. I have a very high level of antibodies. She has advised me to not get boosted. This may not be the right thing for you, but the more you know the better your doctor can help you. I am very big on being a self advocate. Especially since we got the unlucky position of being the forerunners of this. Good luck. Again I am so sorry you and all of us have this!

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Replies to "I have POTS from Long COVID which attacked my autonomic nervous system causing several life long..."

Thank you, I’m so sorry for your struggles and conditions as well. I went to my primary care doctor in October and yes he tested my antibodies levels for Covid and my results were; Covid antibodies > 2500.00 U/ml. He said that was high, I’m guessing the doctor at the Long Covid Recovery Care was suggesting doing the booster thinking I might have some remnants of the virus still in me.
So I’m doing the other management options, staying Hydrated, my blood pressure is great so he said I can try upping my sodium intake, and the compression socks and abdomen. So I guess like you I’m living day, these symptoms are frustrating and debilitating most days, but what can you do unfortunately this is the hand I’ve been dealt.
I wish you better health and a complete healing.