How are the super long-haulers doing 3 to 4 years out?

Dear bmd,
I wish you the best,too! I don't feel quite as alone and that is meaningful to me! I think you are right...those of us that are older may be stuck with this for the remainder of our lives. Isn't it ironic, though,that we spend so much time feeling exhausted but find it impossible to sleep?
Sending hugs,

I had COVID in March of 2020 as well. I still have heart palpitations, sporadic shortness of breath, extreme allergies including skin lesions/rashes, bone dry sinuses and skin, fatigue, exercise malaise, and mild to extreme pain in joints from overall inflammation. I originally had difficulty walking from the bedroom to the kitchen for about two years, then could walk around the block on a good day and now on low dose naltrexone, I can walk about 2/3 of a mile about 6 days a week and can finally lose the COVID weight. Naltrexone works slowly but after a month I can see the weight loss and feel the increased energy. I still have to be careful as if I do too much, I am down for the next 2-3 days.

I have had long covid since January 2022. That year I had 5 or 6 major infections including pneumonia 3 times. Covid left me with asthma, chronic lung infections,breathing problems. In 2024,I was diagnosed with lung cancer and had a lower left lobe removed. Lung surgery left me with an injured nerve that is extremely painful. I have had chronic pain issues,anyway, due to multiple back surgeries.
Long covid leaves me constantly exhausted. I do best in the morning, am pretty tired by afternoon and close my eyes by 7 or 8pm. That doesn't mean I can sleep. Reading and writing, great joys in my life ,are difficult due to lack of focus.I can't walk any distance, am short of breath. Gummies help me with short bursts of energy and pain. I have been denied by the Mayo covid clinic twice. They work best with patients who have not had it as long and have said they can't help me. I seem to get infections easily and end up on prednisone, Trelegy,albuteral,nebulizers. I do have great Mayo Dr's but there are no easy solutions.
The hardest thing for me besides the pain is I feel so alone. It's hard to explain to friends. My husband of 37 years tries to understand, but can't. My sister writes of her great adventures and I have nothing to say that's positive, so I don't say anything. When I talk about my health issues, I feel like I am constantly whining, Debbie Downer! I miss my old life...date night with my husband, long walks in the forest,outings with friends,playing with my grandchildren, traveling to see them, reading a great book, even trips to the grocery store . I try to count my blessings and be grateful but it's easy to feel discouraged.
Thanks for listening,
Holly

Had Episode 1 Jan thru summer 2021. Episode 2 October 2021 continuing into Episode 3 in March 2023.
Tried low dose naltrexone, nicotine patches and 3 Stellate Ganglion Nerve blocks.
72 YO female. Retired, financially OK and outside of long COVID have what most would consider a low stress life
Never had taste, smell or brain fog symptoms but covered most others thru the years.
Somehow or other symptoms have slowly decreased since Fall 2024. Taking 40 mg Duloxitine and 1000mg taurine daily.
Don't know if this will last but have been slowly rebuilding, going to weekly PT. Fatigue is major remaining symptom.
Hoping there is light at the end of the tunnel for others.

I am so sorry to hear about all your difficulties since COVID. That is sure a lot to grapple with! I don't think most people could handle going through all you have gone through, so don't forget to give yourself credit for making it this far. It is understandable to complain about your health when you have so much going on...if friends and family don't respond well, remember that is their problem and a fault on their part, not on yours. And also due to simple lack of understanding, not any ill intent (in most cases). One thing my therapist said that helps a bit is when I have negative thoughts about illness, to accept them as they are, but to them pair it with a positive thought. That has helped realize the small victories and blessings I do still have in a long-COVID life. Keep hanging in there and taking good care of yourself!

I have had long covid since January 2022. That year I had 5 or 6 major infections including pneumonia 3 times. Covid left me with asthma, chronic lung infections,breathing problems. In 2024,I was diagnosed with lung cancer and had a lower left lobe removed. Lung surgery left me with an injured nerve that is extremely painful. I have had chronic pain issues,anyway, due to multiple back surgeries.
Long covid leaves me constantly exhausted. I do best in the morning, am pretty tired by afternoon and close my eyes by 7 or 8pm. That doesn't mean I can sleep. Reading and writing, great joys in my life ,are difficult due to lack of focus.I can't walk any distance, am short of breath. Gummies help me with short bursts of energy and pain. I have been denied by the Mayo covid clinic twice. They work best with patients who have not had it as long and have said they can't help me. I seem to get infections easily and end up on prednisone, Trelegy,albuteral,nebulizers. I do have great Mayo Dr's but there are no easy solutions.
The hardest thing for me besides the pain is I feel so alone. It's hard to explain to friends. My husband of 37 years tries to understand, but can't. My sister writes of her great adventures and I have nothing to say that's positive, so I don't say anything. When I talk about my health issues, I feel like I am constantly whining, Debbie Downer! I miss my old life...date night with my husband, long walks in the forest,outings with friends,playing with my grandchildren, traveling to see them, reading a great book, even trips to the grocery store . I try to count my blessings and be grateful but it's easy to feel discouraged.
Thanks for listening,
Holly

So sorry, I can relate to some of it. I guess A-fib is the kickoff for Long Covid which I had Feb 17, 2024 after seemingly recovering from COVID. Apparently 3 days in the hospital is the norm which I too spent 3 days in the hospital.

When I was released I thought that was it and I'd be up and around in no time. I have struggled to go back to walking but must do it in increments. Instead of the 45 minute brisk walk I did daily pre-covid, it's now up to 10 minutes 4 to 5 times a day by pacing in the house. I also life 5 lb weight once per week.

Occasionally, we have date night in with dinner and a movie. I do cooking from a chair in the kitchen and take frequent rest periods. I have the keyboard in my lap as I am counting this as a rest period. I'm sure your LC experience is much worse than mine, and I hope you are able to make little changes to build your strength back.
Yes the brain fog is awful. I don't remember things. I write myself notes in order to leave the room to let myself know that at such a time I must turn off the stove or oven. I never needed a cane and still don't, but I now have one to lean on while walking because I seem to be able to walk longer with it than I do without it.
Of course, 3 of my grandchildren are over 18 and sometimes drive across town to see me.
My poor husband has to do many of my chores. He has enough of his own.
I hope something here helps in some small way. I need to go rest.

I know what you mean. I am a women, 82 years old and 4+ years post covid. My main problems are fatigue and PEM (post-exertional fatigue). I had my first episode of PEM about 6 weeks after contracting Covid-19 in Oct. 2020. I take A LOT of supplements which have helped. Most recently, I have added a variety of amino acids for mitochondrial support. And, lately, I've added ATP. I've learned A LOT from the (free) YouTube Channel of Gez Medinger and also the free YouTube Channel of Bateman Horne Center. Am doing YogaNidra with (free) YouTube channel of Ally Boothroyd which does help with energy but not necessarily when I have PEM. I have days when I'm o.k. (not great) so I can't say I'm well, if you know what I mean. I look forward to hearing more from everyone. My best to you all.