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

Posted by lauragwi @lauragwi, May 30 3:04pm

I came down with COVID March 31 2020 and have had long-COVID ever since. Moderate fatigue, lung irritation and trouble breathing, some brain fog, and crashes of 2 to 3 weeks where I feel extremely fatigued and ill are my main issues. Plus other systemic things...heart rate not coming down after strenuous exercise, responding too strongly/not properly to vaccines (COVID or otherwise), etc. I would say I'm lucky in that I can still work full time 75% of the time, and I am still able to push myself to do activities I enjoy like hiking, walking, travel, so really I don't have it as bad as some people. But it still disrupts life quite a bit.

Each year I get a little better...the crashes don't last as long, some of the systemic things have gone away (like nearly passing out in hot temps), and I've gotten a tiny bit of energy back. The thing that helped me most was a stellate ganglion block, which has gotten rid of most my lung symptoms and I no longer need any inhalers (I still take Quercetin antihistamine supplement for lung irritation - can't quite go off that altogether). This January, I was starting to have some days where I felt normal. I could actually wake up feeling refreshed sometimes, I could do more physical activity without over-tiring, and I wasn't getting sick either with a virus or with a crash.

But now I feel like I've slid back a whole year or more. My fatigue is worse and more frequent. Over the past 2.5 months, I've had a total of 5 viruses or crashes making me sick and I feel like I am starting a crash today because I'm so tired I can barely get through the day. Haven't been sick this frequently for a couple years now. I'm in my 30s and feeling so frustrated that 4+ years of the prime of my life I've had to hold back on normal activities, miss so much work, and feel so listless. Also, I have thankfully only had COVID just the one time.

I am wondering how the other "long long-COVID" people who've had it 3 or 4+ years are doing physically and emotionally? Have you gotten any better? What is still hard? What has helped the most?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

2roses | @2roses | Jul 5 2:41pm

I will pass along something that I have been trying for a month now and it seems to help with the crushing fatigue. Royal Jelly that is made by honey bees to produce queen bees that outlive all other bees in the hive. This natural phenomenon is an amazing story in itself and I encourage folks to read about the process.

I use the royal jelly that has been mixed with honey. The dosage I take is reduced in volume and frequency because I have had issues with reactions since having Covid. I have had to give up most of my supplements, give up or change some of my Rx’s and stay away from some foods, but this is a topic for a separate discussion.

I had Covid for the first time in December of 2021 and then again in August of 2022. Like most on this forum, quality of life has gone downhill. I am female and in my early 60’s and already have a rare Primary Immune Deficiency that took 25 years to get diagnosed. I have been on immunoglobulin infusions since 2012 that I do at home sub Q weekly. I had to leave my job on disability retirement.

As someone who has been living with a chronic illness for many years, I want to encourage you to take one day at a time. If you are able, do one thing each day that allows you a small victory. It can be as simple as making the bed or unloading the dishwasher or putting away clothes that have sat in the laundry basket for a week. One little victory a day adds up and is good for the soul. If you can’t do anything today, that’s okay. Maybe tomorrow you can . Chronic illness, whether temporary or life long, steals from our physical health. It wants to steal our mental health as well. One little bitty thing a day that we accomplish can make a difference. Hold on and don’t give up. Focus only on today and find that one thing that you can do. Even if it’s just putting the toilet paper roll on the holder. You can do it. You are a conqueror.