Glimmers of Hope: Post-COVID Syndrome Research

I have long covid and sometimes hiccups wake me up...and I have to work at not hicupping during the day by deep breathing frequently...the phlegm bothers me if I eat anything, as though my stomach wants to "lube" my throat to vomit...have to spit out the phlegm a lot, and it has eased up a bit, so hang in there!

24 days after testing positive for Covid and I still get a fever of 100. 5° every day about 3 p.m.
I wish this would stop. The fatigue in the afternoon is overwhelming and I can sleep for 3 hours once the fever comes. I don't take Tylenol to prevent it because I'm waiting for the day it doesn't happen so I know it's finally over.

I came down with long covid three months after 3 weeks of hospitalization for covid. Now 13 months later I am seeing a major decrease in the symptoms I had.
Be patient as there is not much else you can do. I hope your symptoms subside as mine have.

September 2022 - Six months ago. The article recommended an opioid drug for the symptoms. I know there are probiotics that have helped some people with their GI issues. Could you call my doctor and fill him in - I could use some help.

Thank you for your reply.
13 months!! That is so hard on you. Can I ask what symptoms you still have? Did you experience this everyday fever also?

I never had a fever with covid or afterwards with long covid. Once again I was hospitalized for a week to determine what was wrong with me. Heart cath of both sides, blood, and just about every other organ were tested and everything showed just fine--result--long covid.
My symptoms were a smell of burning wood in my nose, labored breathing with just even walking across a room, loss of smell and taste. Smell has returned fairly well, but my taste is still off--food or beverages do not taste as they should. Extreme fatigue--just taking a shower required a lie down afterwards, maybe even sleep. I would take 2 to 3 hour naps after a night of 10 hour sleep, and last but not least trembling hands, body jolts in legs and torso when I would lie down, and extreme perspiration with the slightest exertion.
And I am not sure if the last thing that has affected me is from covid or not, but about 2 months ago I awoke with the lower part of my face swollen on both sides. A week later at the junction of my neck and shoulder-both sides simultaneously, a pocket of fluid or what I thought was fluid appeared. Many doctors later with no explanation of cause, I had a CT scan and it appears these are swollen bucal fat pads. It is going down very very slowly and if I don't return to normal I may have to have liposuction of these areas.
The symptoms I now have are the recurring smell of smoke, but just occasionally and sometimes for just a few moments, body jolts just ocassionally, and sometimes the trembling of hands.
Do you have more than the fevers?

I also get body jolts, specifically in my torso, when I lie down. It’s been going on ever since I had covid in July 2022. When I try to go to bed at night, they immediately start in, even though I’m not even drifting off to sleep yet. They continue about once every minute until I fall asleep, but needless to say, it’s makes it extremely difficult to fall asleep! Sometimes it goes on for 15 minutes! None of my doctors care about it.

Isn't that amazing? Most of my jolts were in my legs, the ones that affected my torso seemed to be much stronger and cover the entire torso--it was scary. And I had the same reaction from doctors. You would think this would be of interest to them. It is very strange to have these jolts, and though I am getting so much better, I still get them at times. Not every night as I used to. I wonder why its only when we lie down?? Perhaps some day we will have answers, but for now I am grateful that these symptoms are subsiding.

My sympathy for all of the symptoms!

Suggestion for possible symptom relief:
Less caffeine later in the day? That has helped with my restless legs.

I never got the torso jolts with Covid, but I have had restless legs off and on for many years, even prior to Covid. "Restless legs" sounds similar to what you are describing. I wonder if there is a connection.

About doctors and their reactions:
As a retired teacher, I am amazed at the lack of intellectual curiosity exhibited by doctors. How did they get the grades to get into medical school without curiosity? Does medical school training beat it out of them? Does an over-loaded work schedule wear it out of them? If a symptom or a group of symptoms present a challenge to the norms they learned in medical school, then they ignore them, or they blame the patient. (It's all in your head. You are hyper-vigilant, etc.) Could it be that their egos are so delicate that they can't admit that they don't know something?

It's infuriating to me as a patient and counterproductive in obtaining a diagnosis.
Medical science and patient care cannot advance without acknowledging the unknown, the unusual, and the unexpected.

I was a critical care nurse for 40 years and I have never seen anything like this. Just read through all the varied symptoms we display. Most docs are as confused as we are. This is a new and very complicated disease. Insurance ties the hands of doctors and government regulations has them jumping through hoops to prove compliance with the regulations. They have to work long hours to make enough to sustain a practice, pay their staff, pay off loans etc. Covid is a work in progress and so complicated. This runs the gamete of no symptoms to mildly ill to very ill to death to long Covid. Congress needs to allocate funds for research. The least you are owed is respect and if your doctor doesn’t listen to you and show compassion, find another.