How long have you had post-covid?

I suffered for 21 months. Collectively I began to receive effective treatment in June 2022 at Mayo in their PRC program. The. In July I had 3 months of Hyperbaric Treatment at AVIV.

I have documented my findings on Social Media. I was suffered my COVID injury September 28th 2020.

#covidrecoverymama

I rely on the Whoop to avoid pushing and crashing. I use their metric with a modification I created/use based on my experience and symptoms.

Everyone should watch Limitless on Disney Plus.

Use the whoop.

Stop chasing your symptoms with drs that don’t have enough data to treat you..

It’s a cyclical spiral of highs and lows believing you’re getting somewhere.

I was on 13 meds a healthy 46 year old with an infectious disease doctor, cardiologist, pulmonologist, neurologist, urologists, psychiatrist and psychologist.

Now I’m independent with good and bad days pain free. Disassociated from my symptoms and still recovering.

If you want more links on content I’ve posted a lot in these chats and they are in the realm of Instagram and Facebook. There is hope and you can heal when you become and expert on your own injuries caused by COVID.

I am a newbie at this compared to many people who post here. I am only 3+ months into this. My symptoms made it very scary as I live alone and could not take safely take care of myself. I have no local family. I lost some local friends and some acquaintance neighbors, who simply did not “get it.” I didn’t “get it” either. I did not know this was “long Covid.”
I feel for you being in a situation where both you and your son are affected. From reading the posts it is clear to me that many long haul people have had much more serious and devastating problems over a period of years. I am just sharing my personal experience which is mild in comparison.

My message of the day is never give up hope and to notice any small improvements.

In my early days, about 8 weeks, I was confined to bed or the sofa all day. I slept well, but felt totally weighted down when I woke up. I was in a deep brain fog all day everyday. I had no sense of time. I had heathy foods in stock, many were perishable. I forgot to eat them and they went bad. I had a few frozen dinners in stock. If preparing a frozen meal took 2 steps, it was too hard to complete the task. I did not have the presence of mind to write down any type of reminders. I had trouble reading with comprehension. I was unable to problem-solve or take care of time sensitive issues. My judgement was way off.
Beside brain fog and extreme exhaustion, I had other symptoms that seemed just plain weird, because I had no idea what was wrong.
Body aching. One night, several weeks in, I had full body aching that was not relieved by pain med. The next day, I had no body aching. A few days later joint pain would return but would be more localized, hips or shoulder, or knee. I did not have this problem during my original Covid, of before.
Shortness of breath- once I was able to function at a low level, I became short of breath doing routine household tasks like making my bed or taking laundry out of the washing machine.
Lightheadedness - anything that increased my heart rate caused lightheadedness, eg, trying to go for a walk, or rushing around the house.

Here are some subtle changes/improvements

I became mentally clear for about 2 hours / day, usually in the late afternoon. Weeks later there were times when I would have unpredictable brief periods of mental clearing at other times of the day. I can now sometimes figure out what I need to do on a given day, and follow through. The tasks are as simple as clean up the kitchen, go check the mail, take a shower. Fortunately, I am retired. Anything that “strains my brain” wipes me out for the day. It’s still progress.
The symptoms that seemed random, and less bothersome have gone away. I no longer have shortness of breath. I no longer have random joint aching.
The lightheadedness has improved, but there is a limit. I tried a very easy exercise class that was mostly stretching, mild muscle toning, balance exercises. I had to stop half way through the class and I was wiped out for the day.
I have the judgement to drive short distances, when I am mentally clear.
I can walk (saunter) increasing distances.
I know not to try to walk briskly, or do anything that will increase my heart rate. I trust that will come in time.
I can engage in some activities that I have enjoyed in the past, eg birdwatching from my balcony, easy reading for pleasure (nothing complex). I used to play a lot of word games online daily with friends/acquaintances. I sometimes forget for 5 days or more. I have lost several “playmates,” but I am back in the game.
I think most of all, I have learned a lot from this support group. Knowledge is power.

It was several years ago that I learned, “never give up hope.” It is serving me well in this situation.

I wish you and your son the very best. I hope that your are able to see some improvements, even though they might be very small.

2.5 years. Sometimes, I'm OK but I continue to have bouts of SOB with exertion. Very frustrating. Has anyone been treated for Micro Lung Clots?

I've only heard of the microclot last week. I read on it and it makes sense. Now as your SOB is a real "SON" of uum,,,,I think you get what I am saying. Have you tried any nebulizer treatment? Plus, if you can find any.. you can take some Vicks or eucalyptus oil in a steam pot let it get good and steamy take from burner , with a towel over your head and breath. Also another one is just lemongrass. It will help loosen some mucus up so you can extract it. I have COPD and Asthma. When I was at that phase I was down a good 2 weeks and in a climate change. I had a really bad time and my mom who as been in the medical field my whole 48 years. Showed me how to do that. Plus, I use my defuser with a little bit in it next to where I am sitting and sleep. She swears by Neb treatment but me myself I like to do the natural remedies. Like sushi with wasabi or hot and sour soup with pickled Chinese cooking pepper or kimchi but unfortunately I'm no longer allowed to have kimchi. Because I am now in the gastro neur part my nervous system my digestive system my kidneys my eyes brain heart that kind of good stuff but I wish you all the best and I hope this is a little bit of help I know I'm not a physician but I just know what's helped me for 3 years

Me too about the same. Got it in November 2019. Then a few months later started having neurological stuff. Especially tremors.

2 years 2months

First got covid in August 2021. Didn't know why I was not feeling better. Went to Dr., got head MRI, chest cat scan, and x-ray for aortic aneurysm. Results were I had a recent stroke and pneumonia.
January 22 got Moderna vaccine. Lost significant weakness in legs. Fell a few times.
Got 2nd Moderna vaccine in March. Fell multiple times, requiring assistance getting up and got sent home until I got better.
The next day, I was positive for covid - again. I was transported to the hospital for 10 days. Started using a walker to get around. Back to work until June when I was told to retire due to health issues.
Still fell. One fall I fractured 3 vertebrae in my lower back. My doctor thought I had long covid.
Now in January I am still reading everything I can find on long covid.

Thanks for your message of hope.
We all need that.
I appreciate your advice about limiting specialists, unless it is truly necessary (eg respiratory problems), severe depression, POTS.
I am also paying attention to your comment about ending up with 46 meds. Before Covid, I was on 5 meds that all worked well (I am in my 70’s, very active before long covid.) So far I have only added B12, D3 and MVI on the advice of my PCP. 8 meds daily is startling to me. I cannot imagine 46.
I appreciate your story about recovering over time. Very helpful. Best wishes on your ongoing recovery over the long haul.

Please let us/me know how your appointment at Northwestern goes. I am thinking of you.

Thank you!!