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.

Hello, thanks for sharing. I’m now in my third year of long COVID. Symptoms including airway tightness, lung irritation and fatigue. Had 2 x rays and 2 CT scans in the first year all came out clear. I had all the tests that I can get access to in the past 3 years, ANA was positive. What makes you decide to do the stellate ganglion blockage? What’s the diagnosis? Thank you so much!

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@bmd

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?

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Hi, I had what I thought (and the Urgent Care doctor) was a sinus infection the first week of this Month. Severe sinus pressure, slight runny nose and strangely I was sneezing. The Urgent Care Doctor did a rapid Covid, Flu and RSV test, came back negative. Prescribed antibiotics, flash forward six days, wasn’t feeling any better and developed a dry cough. Went to my Primary Care doctor he performed the PCR Covid test and a day later results came back positive for Covid. I don’t know if it’s possibly because of what you mentioned but yes it happened to me as well.
I am suffering from LC since the Fall of 2021 and it has been a nightmare! Covid has pretty much malfunctioned my systems; neurological, gastrointestinal, cardiovascular and for four years living with constant sinus inflammation. My post Covid symptoms are far worse than the acute symptoms from the virus. The first time I didn’t even know I had Covid until my husband became really sick with it.
I’m so glad I found this forum, because like many of you it’s been a struggle mentally and emotionally as well as physically.
Sending positive thoughts and healing energy to you all!

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@leahodell

October 2021 is when it started for me. I completely understand the emotional toll this condition takes. I’m not quite as young as you(38), but had just completed 100mile trail race a few months prior to getting COVID. I aspired to do so much more athletically, but I still can’t tolerate exercise. Getting thru Work and taking care of the kids are incredibly hard / impossible on some days.

I’ve definitely experienced moments where I feel like I’m on the other side, only to be disappointed by a flare up or new symptom.

Lately I have been teetering on the edge of giving up on finding answers and just letting this virus have my body. Giving up is not in my nature, but It’s all so exhausting and feels frivolous.

I wish you luck in finding answers and getting back to life.

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I had one Dr who supposedly was specializing in long COVID tell me "May be you should just accept the way you are?"

I could not believe what I heard. It has been 4 years now that I have had this, and I am not getting better. I will never give up looking, trying

I obviously did not go back to that Dr.

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@meiyangyang

Hello, thanks for sharing. I’m now in my third year of long COVID. Symptoms including airway tightness, lung irritation and fatigue. Had 2 x rays and 2 CT scans in the first year all came out clear. I had all the tests that I can get access to in the past 3 years, ANA was positive. What makes you decide to do the stellate ganglion blockage? What’s the diagnosis? Thank you so much!

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Our symptoms sound similar! I decided to do stellate ganglion block because another long-COVID person I was connected with told me about it. I looked up some info on it and asked an acquaintance who is a retired doctor and decided it was worth a try. I had to ask for it, no doctor recommended it for me.But thankfully my primary doctor was supportive and gave me the referral I needed to Pain Management which is the department that does these blocks, at least in my clinic network.

Here are the resources I looked at, but now these are a few years old and there is even more, newer, and often encouraging research out there if you want to look

1. “Stellate Ganglion Block”. https://my.clevelandclinic.org/health/treatments/17507-stellate-ganglion-block
2. “Stellate Ganglion Block Successfully Treats Long COVID/PASC: A Case Series”. https://assets.researchsquare.com/files/rs-873830/v1/80a84314-a831-4ee8-bd3e-cc6501beda46.pdf?c=1631889297
3. “A Review of Stellate Ganglion Block as an Adjunctive Treatment Modality”. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10029323/
4. “Stellate Ganglion Block for Long COVID Symptom Management: A Case Report”. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9822527/
5. “Stellate ganglion block reduces symptoms of Long COVID: A case series”. https://www.sciencedirect.com/science/article/pii/S0165572821003118

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I'm three years into participating in observational and research studies.

My data (along with many) has been used to define what covid is, formalize it as a disease, segment types of long covid, and now shift to clinical drug testing.

I see a lot more research being done globally on NIH's clinicaltrials.gov. In just a few years I've seen science go from "why is this person still showing Covid symptoms?" to much more detailed work getting into testing remedies. This journey isn't fun, but it's nice to see the world working to understand it and solve it.

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Short review: I'm 70 now, COVID March 2020, Neuropathy in legs and back, Raynauds March 2021, > Gluten free, > No Red Meat or dairy, better. Being a retired scientist, I am always testing and evaluating something, because that's what we do! I measured CO2 in two dozen locations during the pandemic lockdown of 2020, CO2 is a great proxy for infection risk. It's 400 ppm outside, inside anywhere from 500-2000. Goaul less than 700. I bought an Air Things 2960 which tracks CO2, PM 2.5, PM 10, Radon and VOC's. I have two HEPA air cleaners, they are very effective at removing PM 2.5 and PM 10 (I did PM testing inside and outside during the June 2023 Wildfire smoke crisis), I would recommend purchasing HEPA air cleaners. Both of my HEPA air cleaners do not use ionization. Air cleaners cannot remove CO2 but they can reduce the levels of "germs". Also..... we all need to protect our lungs during a wildfire crisis or dust storm. On "air now" you can check your community air quality. PM 2.5 is from wildfires. PM 10 is from dust storms. Opinion: During a pollution crisis you need to protect your lungs. That would be a 3M 7502 respirator with 3M 2297 P100 filters. Because this removed 99.97% of damaging particles. An N95 mask at best, takes out 95%, but lets 5% go through. Opinion: Buy from Uline or Global Equipment to ensure that you are getting a real 3M product.

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@mspaminreno

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.

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Watching the Gez video was very helpful - thank you for mentioning it.

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@mspaminreno

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.

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I had never heard of Gez Medinger but checked out the videos about his fasting experiences. I am a staunch believer in the benefits of extended fasting and have done quite a few. It was great to hear - for the first time - another Long Hauler speak to the symptom relief he experienced. I did, too. Also a good reminder that years of LC issues will likely not all disappear with a couple of fasts. The videos re-energized me to gear up for another 3-weeker. Thanks for sharing.

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@iamawriter

I had never heard of Gez Medinger but checked out the videos about his fasting experiences. I am a staunch believer in the benefits of extended fasting and have done quite a few. It was great to hear - for the first time - another Long Hauler speak to the symptom relief he experienced. I did, too. Also a good reminder that years of LC issues will likely not all disappear with a couple of fasts. The videos re-energized me to gear up for another 3-weeker. Thanks for sharing.

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I do Intermittant Fasting because it suits me if you know what I mean. It just came to me automatically. I'm glad you found his videos helpful. I've been with him for about 3 years now; since the beginning - whenever that was. He was the only person who spoke my language because I suffer from fatigue and PEM and no one understood it back then. But, when he mentioned it...suddenly, I felt 'understood' and sent links to his videos to my PCP.
My best to you...

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@mac6169

Watching the Gez video was very helpful - thank you for mentioning it.

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Glad you felt so too! I've been with him for about 3 years - whenever he started posting. He was at that time the only person who spoke my language...fatigue and PEM (post-exertional malaise). I sent links to his site to my PCP which he really appreciated.
Good luck to you, Mac6169

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