Any tips to help recovery for a COVID Long-Hauler?

I had COVID 19 Pneumonia for 6 days at home before I called 911 and was hospitalized for 7 days. This was aug 2. I am struggling with shortness of breath on exertion, stroke level hypertension filled by hypotension, then a headache everyday. My legs give out, I have such exhaustion and fatigue, insomnia, depression. And I am on meds for prior health issues such as Stroke, Ankylosing Spondylitis, osteoporosis, and I think since I had Covid, my body doesn’t react the same to the meds I have been on that used to work. I feel like now they aren’t working at all. So tired of being without energy, or the physical ability to even push my self. I was very active prior to COVID and now I am good for two hrs a day max. Ugh.......

This one bear repeating - go to https://www.survivorcorps.com/ and find a long-haul rehab clinic or program in your area.
As to your fatigue, many of us with chronic conditions battle it - sometimes for days, sometimes for much longer. In 2017 -2019, I had a disabling case of pseudomonas plus MAC (mycobacteria aviums) infection in my already challenged lungs. It took nearly 2 years of multi-antibiotic "cocktails" to beat it into submission, and more lung damage occurred. At the beginning, a shower and breakfast were all I could manage without a rest. Over time I progressed, little by little, until I could generally do 2 hours of activity at a time. Now, nearly 4 years later, I can do perhaps 4 hours of fairly rigorous physical activity in a day, interrupted by short sit-down breaks. But by 4pm, my active day is DONE most days. To reach this point, I had to reach out to a pain doc, lung doc, ortho, my primary, and a miraculous PT. I learned when to push and when to back off.
This appears to be the model followed by the rehab program for Covid survivors - I'm sure it won't be easy, but probably worthit to get your life back.
Good luck to you on this journey - stay in touch with us at Connect, we'll encourage you along the way!
Sue

@sueinmn- What did PT do that was so miraculous?

This guy is a pt trained in an osteopathic college, who has also studied Myofascial Release. He has the most awesome knowledge of anatomy, and understanding of all connections - muscle, nerve, tendon, spinal cord and cartilage of ANY medical person I have ever seen.

Every stretch and exercise is targeted to your diagnosis and customized to your ability. The reason & and physiology behind each is explained. Every appointment begins with a status check. When I tell him an exercise hurts or doesn't work or I found a good modification helistens and adapts. Written directions, with picture or videos, are provided for most stretches and exercises, concentrating on form, pace and duration.

He knew exactly which muscles or fascia to stretch, or which pressure points to touch, when my pain was acute.

We have been done with biweekly appointments since mid January, but still do monthly phone check-in.

He sees patients in a PT center, but almost exclusively for my pain mgmt doc and a few good orthos.

This is how PT should be - not a rote set of exercises, one size fits all, for any injury or complaint.

Sjue

I got sick March 2020 and never seemed to recover. No one would test my family at that time. By May I had terrible blurry vision and the fatigue was ongoing. I was in pain on a daily basis and nothing resolved that pain. Nuero offered meds and that did not help the pain at all. I began to receive blood work and input from a dr in Sept/Oct as symptoms seemed to pile on and I could no longer dismiss things. I seemed to feel better after the Pf vaccines. Then 3 weeks after being fully vaccinated and thinking my health was becoming "normal" again some issues have returned. The issues were intense before vaccines and now they are noticeable, yet no where near as intense as before. I have the feeling of fainting, shortness of breath, heart palp and racing heart, numbness and tingling of extremities, blurred vision is slight where as before it was so intense I could not function on a daily basis, nausea, toes tingle yet no discoloration any more (before I had a purple foot on occasion). So slight issues that mimic POTS perhaps? I was so hopeful the past few weeks as I felt better and now I am desperate for things to get better...and fear things will go back to how they were the past year+. I hoped to avoid any type of relapse. I tried to be positive and present in the moment, thinking that would help 🙂 Has anyone had any luck with resolving the racing heart, fainting feelings and blurry vision? I hope we all feel better soon 🙂

Hello @kcartier and welcome to Mayo Clinic Connect. I am sorry to hear of your lingering COVID-19 symptoms after your hospitalization. I think it would be reasonable to consult with your doctor and/or pharmacist to see if they feel that any medications may need review. Have you reached out to see if that is possible?

Hello @mjay8 and welcome to Mayo Clinic Connect and this discussion. You are among other members who understand what you are going through post-COVID. You mentioned POTS so thought I would ask if you have any prior health conditions that could be aggravated?

@mjay8- Welcome to Mayo Clinic Connect. It looks as if you've had a very, very rough time for over a year. You said that you weren't tested early on. Have you since been tested for COVID-19? Did the blood work that you had show any signs of COVID-19? Or for any other illness? Before COVID had you ever had any symptoms like the ones that you have recently suffered?

POTS can be diagnosed using the title-table-test. I strongly suggest that you have this test.
https://my.clevelandclinic.org/health/diagnostics/17043-tilt-table-test
This is a very thorough discussion about COPS and how you can get help. There are also medications that can help:
https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots
Some people who have had COVID-19 have reported that their symptoms lessen after having the vaccine. So this is a good thing.

I also recommend that you contacting VAERS with your symptoms and seek out any help that they can give you.

How to report to VAERSYou can report to VAERS online at https://vaers.hhs.gov/index. For further assistance reporting to VAERS, visit https://vaers.hhs.gov/index or contact VAERS directly at info@VAERS.org or 1-800-822-7967.

Also, you can access Survivor Corps
https://www.survivorcorps.com
Survivor Corps is one of the largest and fastest-growing grassroots movements connecting, supporting, educating, motivating, and mobilizing COVID-19 Survivors. They will help with post covid-care

Merry

Why an osteopathic PT person?

Osteopaths (one of my past PCPs was also one) focus on the interconnectedness of the body systems. In a very simple example, you get less of the "let's fix this limp" and more of the "let's figure out why you limp" - or in my case - "let's figure out where this pain is radiating from" - which was miraculous. The previous PT kept telling me I just needed stronger muscles, this guy got my neck to move so we could strengthen the muscles.
Sue