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.

mspaminreno | @mspaminreno | Mar 24 10:59am

In reply to @samiam1949 "You have given some great suggestions. I will go to YouTube and look up some of..." + (show)

Your reply gave me a chuckle. Only 'one of us' can understand what another is going through and it made me feel 'understood' - thank you so much!
As you will see, Gez Medinger has a brand new video on YouTube (as of this morning); I think you'll appreciate it. Overall, there is a ton of information there.
A big hug back to you.

yaya77066 | @yaya77066 | Mar 24 1:11pm

In reply to @samiam1949 "I'm sorry,Yaya! It is not easy,is it? You have given me a few excellent ideas. I..." + (show)

I often wonder how many don't know of this site, and if nothing else, it provides some emotional support from readers and fellow sufferers.

samiam1949 | @samiam1949 | Mar 24 2:21pm

I just met my first long hauler...a Dr that was seriously ill with covid and was now seriously ill with long covid. I saw him on an emergency basis with another lung infection. He was so empathetic.
I agree. This site offers wonderful emotional support.

mspaminreno | @mspaminreno | Mar 24 8:30pm

Oh, gosh - I feel your pain and frustration. I’m 82 years old and 4+ years post-Covid. Since the very beginning, I experienced bouts of PEM and STILL do together with crushing fatigue at times. The thing that happens to all of us is that we tend to over do it on our decent days. There is a lot I could say at this point but think it’s best to share some of my resources. I’m always happy to share more going forward. I have learned so much from the free YouTube channels of Gez Medinger, and of The Bateman Horne Center plus Raelan Agle and Healing Gems (just to name a few). Sending a big hug 🤗 your way.

pattilhcovid27 | @pattilhcovid27 | Mar 25 8:06am

Hi, I had Covid five times currently I have a cold or the virus that’s going around started with a sore throat. I started getting short of breath last night now I’m on my Covid inhalers, but was good for a whole year. Only brain fog, lingering and occasionally post exertional malaise. I had to start writing in an agenda all my appointments too. I’m 46 and used to be very active. I have PTSD from all this. Hope this cough and shortness of breath. Go away soon.

bmd | @bmd | Mar 26 6:47am

In reply to @pattilhcovid27 "Hi, I had Covid five times currently I have a cold or the virus that’s going..." + (show)

I’m sorry you’re not feeling well. I got sick again last weekend, all the Covid symptoms, then my husband got sick- same symptoms. He tested positive and I tested negative. I read that long hauler’s, because of compromised immunity, may need to PCR test rather than the at home with the antigen tests. Have you, or anyone else on the site experienced this? I ran a fever and had headache with sensitive scalp, in addition to other Covid symptoms, but my husband didn’t. Did you test negative for Covid as well?

pattilhcovid27 | @pattilhcovid27 | Mar 26 8:05am

In reply to @bmd "I’m sorry you’re not feeling well. I got sick again last weekend, all the Covid symptoms,..." + (show)

I did not know that I took a at home test and I was negative. Great now I’ve been running around and infecting everyone else.!!!

bmd | @bmd | Mar 26 8:58am

In reply to @pattilhcovid27 "I did not know that I took a at home test and I was negative. Great..." + (show)

Not necessarily but there’s def a chance of that.

mspaminreno | @mspaminreno | Mar 26 12:30pm

In reply to @pattilhcovid27 "Hi, I had Covid five times currently I have a cold or the virus that’s going..." + (show)

I picked up that darn virus too! (last September) I used Nature's Way Umcka Cough Syrup. It took 2 bottles but I got rid of it...however...every now and then, I cough. My doctor prescribed an Rx but it didn't help. Good luck. Big hug...

pattilhcovid27 | @pattilhcovid27 | Mar 26 1:19pm

In reply to @mspaminreno "I picked up that darn virus too! (last September) I used Nature's Way Umcka Cough Syrup...." + (show)

I have a pumonologist, we have a plan in place every time I get Covid if I have a cough, I use my rescue inhaler as needed and start Breztri bid as long as I have a cough. So that’s what I’m doing right now. My cough and shortness of breath has gotten significantly better. If you do not have a pulmonologist, get one. Establish a plan for when you do get Covid.

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