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

Posted by lauragwi @lauragwi, May 30, 2024

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.

I've been at it since June '22. Same exact symptoms: headaches between eyebrow region/ bridge of nose, fullness/pressure/inability to clear my ears (eustachian tube dysfunction), and intermittent tinnitus. It has not gone away in almost 3 years- not one day. Have seen numerous providers. Finally getting into Emory's long Covid clinic and Dr. Alex Truong in 3 weeks. I've managed okay until this spring's pollen outbreak which was horrendous. I have to admit, this is really wearing me down.

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@mspaminreno

I'm 83 years old and caught Covid 19 in October 2020. I had what's referred to as a 'mild case' meaning I didn't wind up in the hospital. I had my first case of PEM (post exertional malaise) 6 weeks after my original infection. I take *A LOT* of supplements; something to support every system in my body. I was extremely active in my previous life and now I'm happy to be able to manage a short shower; do some light housekeeping (now and then); feed my kitty; manage my meals and get together with a friend occasionally over lunch. I could go on and on...but, you get the picture.
For sure, I am better. In addition to my nutritional/supplemental needs, I have been forced to change my life-style (no more multi-tasking, etc.) and I practice yoga nidra 1 or more times per day which definately helps my nervous system and gives me back some energy. I continue to believe I can get back to feeling normal. Time will tell.
I get a lot of help from some free YouTube Channels and highly recommend: Gez Medinger (he's one of us), Healing Gems (let's try to get her to 1000 'likes' so the ads will be turned off) (Gemma is also one of us), then, there's Raelan Agle who is recovering from CFS and lastly check out Bateman Horne Center.
My best to all,
Pam

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Thank you 🙏🏽

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