When to accept permanent long covid?

I can empathize with your post. Going on 3 years of this. I lost my partner of 20+ years 12/18/23. I found him deceased in our house. He was 56. This is an autoimmune disease. I am convinced of that. Inflammation plays a big part of this. I, too, have tinnitus. Sometimes it is louder than other times. (Usually in the morning and evening). The doctors are stumped, honestly. There is research going on. I suggest you check out https://recovercovid.org/ They are doing research, in fact they have a large study beginning at the end of the year and are looking for participants. They also have webinars that discuss the results of studies they have finished. Some of it is over my head, but in the beginning, I had to do my own research due to the doctors I saw, knowing NOTHING about LC. I want to say that I understand the hopeless feelings. I also want to thank you for your post. You are still here and I know it feels as if there is nothing left. I have felt that as well, but you are here and your post has helped me realize I am not alone. This support group has helped me so much. Hang in there. You are not crazy. I have to remain present, in the moment. My mind will spin out and "future trip." I do not know the future. All I have is today.

Here is a link to some of the studies so far from https://recovercovid.org
https://recovercovid.org/research-summaries

I believe I began loosing my taste and smell after my first Covid Vaccine of Pfizer. I detected a metal taste in the back of my throat just after being injected. I caught Covid in December of 2022 and it’s now May 2025 and I still don’t have it back, but only detect salty, sweet or bitter tastes on my tongue when I eat. When I’m not eating, I will get an awful bitter taste on my tongue that is really awful! I do, on occasion, get whiffs of perfume or coffee in the morning but other than that, can’t smell anything. I was also recently told by the Chief of Neuro at Northwestern downtown that I won’t get my taste or smell back if it’s been over a year. Well, it’s been almost 3, so…I guess this is my new normal, unfortunately.

Diverdown1
Yes. Staying in the moment is is good way to live life in general. All sounds familiar to me. Do i hear you may also have mostly morning issues? In my case mornings are worse and I usually am functional and feel better as the day progresses, until I feel almost normal late afternoons and evenings. Very confusing. But realize how lucky I am. Have not heard of anyone else with this situation. Anyone else with this type of situation? Best of luck to all of us. Thank you support group..

Absolutely, I started feeling a little better each day and by the time I reached 5 days I had to stop, I relapsed by the first day I stopped and got quite sick. I would definitely recommend Paxlovid and now you’re allowed to take it for the full 10 days but I’m not sure if you can still relapse, I suppose it’s possible.

So sorry you have lost two of your senses that are such a part of making life more enjoyable and complete. Try to stay positive and HOPE for a better future. Good luck.

First of all, I am so sorry you’re suffering for so long. I am going on 3 years in December with Long Covid, (no taste/smell, lightheaded and feel like I’m on a boat, tremors in my body if I overextend myself). I had more of the light headedness early on, now it is less often as I believe the water in my head is dissipating. I’ve had 2 brain MRI’s and it showed left sided swelling on my brain. The Chief Neurologist at Northwestern Chicago told me that this was something he thinks happened during childbirth. How he knows that, I don’t know! I believe it’s from long covid! I wish I had a magic wand to help you, but unfortunately, I don’t. He also told me that after 1 year of no taste/smell I probably won’t be getting those senses back. I pretty much walked out of there with no hope! I am a strong willed woman and am refusing to loose hope! Keep looking for web sites that are positive and keep hope alive for us living with Long Covid.

Check out Cleveland Clinic. I see 3 doctors there that have checked for other things and also concluded I have LC. One has put me on a regiment called Low Dose Naltraxone, which I can say hasn't helped my dizziness or balance (and maybe made it a bit worse, but I feel stronger inside and am not so depressed. At least he is trying something.

I am dealing with the same, and CFS baffles me...I'm just exhausted, but not all the time. Stressful situations seem to bring it on.
Chronic cough, muscle aches, brain fog are rotating symptoms that accompany the fatigue

I also have balance issues. I did physical therapy..
It helped somewhat, however I had to give up ballroom dance.
I am slow and cautious when walking.
Be gentle with yourself