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.

klf58 | @klf58 | Apr 5 8:41am

5 years out for me. Also high platelets and high red blood cells. Testing for cancer, but keep telling oncologist hematologist that I never had issues since covid. Hydrea? Never heard of that treatment. Glad it's helping you! No energy, short of breath all the time. My old self is gone. Still working full-time as no choice, but hard to do ADLs like laundry and can no longer vacuum or do any "heavy" cleaning. Stairs are difficult. Take care, everyone.

janetbender | @janetbender | Apr 8 6:25am

In reply to @klf58 "5 years out for me. Also high platelets and high red blood cells. Testing for cancer,..." + (show)

I had Covid jan 2020 and have not fully recovered.
My platelet count was 1.2 million when diagnosed - 18 mo of hydroxyurea (500 mg daily) and platelet count now 400k. Hydrea decreased to 5 days a week. Yay!

Also diagnosed with POTS and treatment is hit or miss. I’m taking Fludrocortisone and Midrdine and neither working well. Hoping for a new drug on my next visit…
I’ll ask my doc about stellate ganglion block.

lkirnbauer | @lkirnbauer | Apr 9 9:08am

In reply to @janetbender "I had Covid jan 2020 and have not fully recovered. My platelet count was 1.2 million..." + (show)

I had 7 Stellate Ganglion Block Injections and what they did do for me is take my anxiety/PTSD away. I went for these injections to retrieve my taste and smell. That hasn’t happened yet and I had Covid in December of 2022 and lost both. I was recently able to get an appointment with Northwestern’s Chief of Neuro-Infectious Disease & Global Neurology. Dr. Igor Koralnik told me that I will not be getting my taste or smell back as the Olfactory nerves which are located underneath your brain, were damaged by Covid and don’t regenerate. I’m struggling with this now as I’m only 68 and have to live the rest of my life without ever tasting or smelling anything! So, I basically eat to live! I wish you good luck and repost if you have those blood tests done and how it went.

iamawriter | @iamawriter | Apr 17 1:42pm

In reply to @mspaminreno "Glad you felt so too! I've been with him for about 3 years - whenever he..." + (show)

Yes on debilitating fatigue and PEM and feeling "heard". Good idea about sending the links. My PCP is great but my pulmonary rehab folks in the "Long Covid Clinic" might be able to use. Thanks and good luck to you as well.

mspaminreno | @mspaminreno | Apr 17 5:27pm

In reply to @iamawriter "Yes on debilitating fatigue and PEM and feeling "heard". Good idea about sending the links. My..." + (show)

I can't recall offhand if I also mentioned the Bateman Horne Center. There's a great video in their YouTube channel about the mistakes made by the medical community regarding telling us to exercise more ... it's well worth the time to read.
My best to you...

PO777 | @po777 | Apr 18 10:35am

Almost 4 years here and still have not tasted food and smell is wacky. Very discouraging and depressing. The doctors have not been any help at all. Brain fog, memory issues, fatigue and they say nothing, only they don’t know.

lkirnbauer | @lkirnbauer | Apr 19 9:17am

In reply to @janetbender "I had Covid jan 2020 and have not fully recovered. My platelet count was 1.2 million..." + (show)

I’ve had 7 Stellate Ganglion Block injections and they did take my PTSD away, but didn’t bring back my taste or smell. I caught Covid in December of 2022 and it’s now April of 2025. Loosing HOPE.

bigj | @bigj | Apr 19 12:08pm

In reply to @po777 "Almost 4 years here and still have not tasted food and smell is wacky. Very discouraging..." + (show)

Hi when you say Brain Fog an Memory issues can you please be more Specific
I also have both cant remember much of the last 5-10 years an sometimes what I did 4 weeks ago but it is getting better VERY Slowly
Taste an Smells comes an gos some every other day .
Ps. what HELPS is any from of Exercise

friedrich | @friedrich | Apr 19 12:14pm

In reply to @lkirnbauer "I’ve had 7 Stellate Ganglion Block injections and they did take my PTSD away, but didn’t..." + (show)

To lkirnbauer —

Using the Search function on this website, you can find comments from people who have had some of their ability to smell and taste return. For some people, this has been a result of “scent training.”

The Search process can be time-consuming. You could enter a request for assistance from a Moderator.

Wishing you success in regaining at least some of your ability to taste and smell !

— friedrich

PO777 | @po777 | Apr 19 1:13pm

In reply to @bigj "Hi when you say Brain Fog an Memory issues can you please be more Specific I..." + (show)

I get overwhelmed by every day situations that would not have bothered me before. I’m forgetful now, sometimes have issues getting the words out, indecisive, irritable etc etc. At almost 4 years no taste and limited smell and at times things smell off or smells that don’t exist because I ask someone else if they smell something and they don’t. I have always exercised and continue to. Thanks!

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