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

Hey There! I am going into my 3rd year with Long Covid. I had COVID again last October. My fatigue has worsened since having it again, I still have brain fog (but not as severe). I have more joint pain, fibromyalgia has worsened and more upper respiratory infections and asthma.

The first round of COVID, my heart rate stayed at 136 doing nothing. It took 3 months to come back down and the shortness of breath took about 3 months as well. I had double pneumonia the first time with COVID.

I went to an Integrative Medicine Doctor who was wonderful, but, I could not tolerate the infusions or the Glutathione to treat Long COVID. I am on a lot of vitamins for long COVID.

To be honest, I feel like I have aged a lot since the last round of COVID, BUT, I am grateful to God for the things I can do. I have had to learn (I'm a type A) I cannot put too much on my plate or I crash.

Praying for you and I am glad you are doing better and pray you continue to do better.

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.

You have described a journey very similar to mine. Got Covid in November 2020. This last Christmas I had a few days where I was hopeful it was going away, but I crashed with the fatigue after about 3 weeks of near normal. At least I got some hope that life might be normal someday. I’m going to have my blood tested for micro clots soon and if it is positive I will proceed with treatment. I’m glad you have had some good days as well as that gives us some hope!

First off, I’m so sorry you are suffering so badly. I can’t even imagine…, but kind of. I contracted Covid in December of 2022 and have not had any smell or taste since. I’ve had 3 Stellate Ganglion Block injections and have had only slight success with that. I’ll be having a 4th Stellate Injection on June 13th at our big hospital, Northwestern in the city of Chicago. I can smell the ground coffee in the morning on most mornings and am able to smell other things on occasion. I do taste salty, sweet and sour but no flavors of anything. I’ve done smell training with different essential oils and test myself daily for both smell and taste. It’s been quite awful, to say the least, but the only good side is that I’ve lost some weight. I wouldn’t recommend doing it this way! I am going to suggest to you because you talk about extreme fatigue, having your Thyroid Levels checked. It’s done through a blood test and what you should ask to have done is a complete Thyroid Panel, testing TSH, T-3Free, T4-Free and your Thyroid Antibodies. Since you seem to be fatigued often, you could be hypothyroid, which I also am, along with having Hashimoto’s. I have given up Gluten, Dairy and Soy due to the Hashimoto’s, which seems to trigger my inflammatory symptoms. I am feeling much better that way, but this no taste and smell thing is not much better. Before I was diagnosed with Hypothyroidism, I felt extremely fatigued and my blood pressure was quite low as well. Since starting on Synthroid which is the medication I take for Hypothyroidism, I’m back to having a normal B/P and don’t feel tired all the time. I now can walk 4 miles 3 x’s per week again and do light weight training. I should also state that I had a mild case of Covid, but my sinuses were extremely plugged. I’ve been to an ENT and he told me there are no blockages, but my ears feel full most days. I was also told by my Functional Medicine Doctor that I have a lot of histamine in my body. I’ve eliminated several foods that I found I was sensitive to, but still am not tasting and smelling.
I wish you success on your health journey and please post an update on how you’re doing.

I am 3 years out and what I have learned is to not allow myself to get too tired, mentally or physically. The result from either is the same, sore throat (to worn me I am pushing too hard) , brain fog (brain turns off), body aches, crash, wake up feeling like I have the flu, rest rest rest and start again. I think I am somewhat better from the beginning of this nightmare but it also might be that I have just learned how to live in this body.
I am so sorry, You are too young to be dealing with this. Good luck, I hope a 100% recovery is in your future.

Like the other responders I am finding Long COVID to be episodic. 1st was in Jan 2021 and thankfully I didn't know back then that it would reoccur. Trying to maintain with a low stress lifestyle, mostly homebound. Hoping that they find key diagnostic indicators and some cures soon. 71YO female.

Well, lauragwi, you ask a loaded question - "How are the super long-haulers doing 3 to 4 years out?" I had Covid in August 2020 and am still dealing with SOB, dizziness, PEM, blurry vision, etc - most of you know the drill. My journal is now 95 pages of my feelings, state of my body, doctors, resources, procedures and more. I had a little respite when I was diagnosed with POTS and prescribed 30 mg of Mestinon twice a day. From October '23 - March '24, I was walking at top speed, playing golf, gardening, aerobic dancing again and enjoying my pre-COVID life. Now, I'm back dealing with everything again and waiting for test results that probably won't change anything. BTW, I'm 77 years old but know I can act like I'm 50 if this d...... syndrome would be done with me. Good luck to all. This forum helps!!

Thanks for sharing! I am sorry you got COVID a second time and had worsened fatigue. And having such an elevated heart rate and double pneumonia does not sound fun! Thanks so much for your good wishes. Sending some prayers and good vibes back your way. May you continue on the path to full healing.

Hello, thank you for sharing about your experience. I am sure it is so hard to go from being that active (100 miles, wow!) to not being able to do much activity. I can relate that sometimes just getting through the basic daily routine can be so difficult or impossible. I know it is so frustrating, but maybe you can view it not as giving up, but accepting what is and saving energy by not struggling against it. That's something I need to work on too - it's ok to accept not feeling well, and recognize our daily limits, which is not the same as giving up altogether and still leaves room for hoping and working to feel better. Keep hanging in there! May you continue on the path to full healing.

It's good to know that others are finding some relief after all this time too! Even though the crash after can be so much more frustrating. Like you, feeling close to normal for awhile gave me hope too, and was a reminder that our bodies are capable of getting out of long-COVID mode. Good luck with your upcoming testing!