This program helping me recover

Good question you asked there about how to get into the Long Covid Treatment Plan at Mayo. I’m going on 3 years without taste or smell. I need help as well! I also don’t have the energy I had 2 years ago, which is not that long ago to be feeling the way I do at times. I want to ask you if you’ve had your Thyroid labs run? You may have hypo or hyperthyroidism and that could be keeping you up at night. I too get body tremors, especially if I’m over tired. I take Synthroid for my hypothyroidism and recently started taking a lower dose and I do feel better. It’s a “let’s try this and see if this works” type of thing and I like many are getting sick of it! I just want to be normal again.

I agree and sympathize with you. Pacing is the only thing that has worked for me, and I had to retire. Working and pacing don't seem to work together, so there seems to be no answers for those who must continue working.
Too many therapies are based on the idea that if we just ignore our symptoms and push through our difficulties, we will get better. I have struggled with this for two years and know that is not true. I think the best that anyone can do now is manage the symptoms and that can lead to a better quality of life.
I am feeling better now because I am no longer using more energy than I have. I am no longer pushing myself so hard that I end up in bed for two days. I am engaging in gentle exercise to try to reduce some symptoms. Unfortunately, I still have to spend much of my time in a recliner and am unable to walk much. My quality of life is better, and I hope that it will continue to improve, but it is going to be a long, hard journey.
Many doctors deny that this illness has a physiological component and that leads them to take our symptoms less seriously. We need to hear the truth which is what can we really expect to happen from these therapies and what we cannot. I do share your frustration and hope that some effective therapies might be developed soon.

Make sure your insurance will cover a visit. I applied only to be quickly rejected because my out-of-network insurance won't kick in. Yes, the Mayo people are helpful and respond quickly, but insurance can be a real stumbling block

New to the forum. I had undiagnosed Lyme for 5 years and have now suffered Post Lyme Syndrome fir 10 years. Research indicates it is very similar to Long Covid. One Dr prescribed Mestinon for brain fog. It worked immediately to relieve it. Cognition is not as pre Lyme but incredible improvement. Good luck.
Still suffering from extreme fatigue. Any suggestions welcome.

If you have continued anosmia, I’d recommend a stellate ganglion block. I’ve spoken to 2 LC docs who specialize in SGB, and it works best for loss of taste snd smell.

Thank you for your feedback, but I’ve already had 7 Stellate Ganglion Block injections and they have not brought back my taste or smell. What the last injection did for me was take my PTSD somewhat away, where I’m not jittery or have involuntary movements any longer. That is also a symptom of Long Covid, but I’m still only getting sweet, salty, bitter on my tongue. No flavors of anything for over 2 years now. I live in the Chicago area and go to Northwestern’s Pain Management Clinic. Thank you again for your suggestion. I do appreciate it.

Did the same anesthesiologist inject you?

I think you nailed it. Any person, website, institution or organization that promises a cure is preying on our desperation. NO ONE understands what actually causes the symptoms of Long Covid or ME/CFS or Long Lyme or any of the post-infectious chronic illnesses, and without that knowledge, no one can guarantee that any sort of therapy will make any difference. I agree that pacing is the best way to get through each day without making our bodies worse, and the goal is to maintain a stable baseline, not be cured. Sending you the strength to continue your own journey and find peace and joy where you can.

I wish I had a “baseline” and did not feel I am still getting worse.
I can’t help but think about where I will be in a year.

That sucks, and I’m sorry that you’re struggling to get to a baseline, but also don’t be under any misconceptions that I have figured it out yet either. I literally just about a week ago got the Visible Plus subscription and the Polar 360 arm band to help me pace better (because I hadn’t been able to do it in any meaningful way at all ever). It’s been a year of push/crash for me, and I finally realized that I literally cannot pace effectively on my own without some better and clearer guidance. As I am only a week into using it, it still remains to be seen whether where I am at _is_ my baseline, or if I can pace effectively for a while and actually get to a point where I can do a little more every day than I can now.

If you can afford it, I do recommend looking into Visible Plus with the arm band. It’s designed by people with Long Covid for people with Long Covid. It continuously tracks your heart rate to provide immediate feedback when you are overdoing it physically. What it has shown me is that I really can’t do much at all, and that I really need to rest more and do way less than I have been. Of course, heart rate isn’t everything, and emotional and cognitive exertion also contribute equally to our energy expenditure, but even getting one aspect under control should help.

Hang in there. We really are dealing with something that no one fully understands, and we need kindness and compassion for ourselves as we attempt to navigate our “new normal”.