How many people do you know that have Long Covid?

Did you do anything to make it better? PLEEEEEEASE!! You sound like it was awful— and after all the mucinex, saline rinses, gerd meds, nasal sprays, and sudafed I still cannot sleep

(There is a whole other thread abt mucus in throat, post nasal, etc. Just got too gross to read for me!)

I find it very interesting that Covid was thought ti be a respiratory disease when I got it in 3/20. Then blood clotting… and on it goes. I spoke to a Nurse Practitioner who told me that my ( the illness we were discussing) was extremely rare— but since Covid she’d seen a huge uptick ( like from 1 a year to 12). She also said that she felt like doctors were not discussing Covid and long haul enough. I wonder why it has remained so political?! ( please don’t answer that. I’m not interested in hearing how our medical practices are being influenced and effected by our political policy, or ANYTHING political).
It must be messing with our cellular makeup— too many different symptoms to call it “just_____” Neuro, Psych, Endocrin., etc. The research on mitochondrial damage interests me. In the mean time? We must reinforce one another.

To kagnteacher - I don’t know anyone who has long covid and I don’t know anyone who knows anyone with LC. Before joining this chat room, I felt so alone in all this wondering if I’m the only one in my whole community suffering from this. Even none of my doctors tell me they have other patients with LC. At the beginning, when the CDC was recommending vaccines and Paxlovid to prevent LC, there was stuff written about it, but now I don’t see anything in the media. It’s as if when the govt. declared the pandemic over, LC disappeared!
I was fully vaccinated, and took Paxlovid when I got Covid in Feb. 2023. Since then, I’ve been continuously short of breath, had a hypertensive crisis after a course of prednisone for lung congestion and developed complete heart block necessitating a pacemaker. I feel like I’m living on the edge - if I over extend myself, my lungs shut down and I’m short of breath for the next day or 2. I also have a weird smoky smell and burning in my throat. It’s like an aura that signals my lungs are shutting down. I’m so thankful to be a part of this group so I don’t feel so crazy but still discouraged and anxious that I’m never going to get back to normal. Blessings to everyone!

YES! I know NO ONE that has LC & I have had it for 3yrs now & I'm getting worse actually w/some of my symptoms. I have not gotten the help in need here in my ST & I'm beyond frustrated. The 15+ debilitating symptoms I have rotate unpredictably & I'm unable to live a normal life now or work a job. It's very lonely & more depressing than I was before. I thought coming here would help expecting to get advise on treatment but that hasn't happened. It only makes me feel worse.

Had Covid 9/22 and still tire at times. If I need a nap or a few minutes rest I take it.
I’m not going to waste my time asking PCP’s what to do, when they don’t know that much about it.
It’s not going to ruin my life. Doing my best to not let it bother or take my life over.
Enjoy your life - there’s no practice days.

I am not shilling for Mt Sinai, but thinking about Kndr’s isolation…, thot this might help
Post-Acute COVID-19 Syndrome is New—But It’s Real

“Because post-COVID symptoms are such a new phenomenon, many patients find that friends, family, and even some physicians dismiss what they are experiencing. This can cause anxiety and depression on top of the physical burden. We know, however, that there are enormous numbers of patients who are presenting with these symptoms.

Many of our patients at the Center for Post-COVID Care are in their 20s to 40s, were relatively healthy, and had mild cases of COVID-19. Most were never hospitalized. Some patients come to the center with diagnosable damage from COVID-19, especially in the lungs. However, many have no clear cause for their symptoms—except that they had COVID-19. One theory is that the immune system is still in overdrive from fighting the virus during the infection. We are studying commonalities among patients, using data we have compiled on lungs, hearts, and brains from high resolution imaging. This will help us determine the effects of COVID-19. In many patients, we are also finding microscopic blood clots in the lungs, heart, liver, and the brain.

“The virus has many different effects on the body. Because the virus goes everywhere after it goes to the lungs, the immune response goes everywhere as well. So part of the damage is from the virus itself, but the immune system is also doing damage to your organs. Your immune system starts by activating cells that kill the virus. But sometimes these cells damage the organ the virus is next to, so it’s almost like collateral damage,” says Zijian Chen, MD, medical director of the Center for Post-COVID Care.

I do know that our American go to it attitudes of “ you can do!” or the “indomitable spirit” press, and “the think positive yourself out of it” and “ live your best life” DOES work… for milder cases. But, so not helpful if you are experiencing severe multi-systemic symptoms. I’m saying this not to offend, but to warn— there are support comments I’ve read that do the “exercise regardless” and “pull up your britches” cheering. I think most on this thread are much more severely effected than any “pull on big folk pants” can alleviate. If you are really struggling, know that some of us GET it! I’m a “do a zillion things “ at a time hyper A person too— but talk about a knockout punch! During a flare? No choices at all. Just survival.

From @caro's comment and the quote from Mt Sinai:

It is helpful to hear of the age range (20s to 40s) and types of people that Mt Sinai is commonly working with. I'm in my 30s with Long Covid. I have have felt isolated from my friends who are in the same age range, many of whom are working heavily on careers & family or or taking athletic adventures. One strategy that I have found is to tell people: "Long Covid taught me to release the idea of goals entirely." My only goal has been to get well, and that is not under my control. So this has been a practice of release and moving though uncertainty.

Since getting Covid, I've developed a number of symptoms that include hypotension/POTS, fatigue, loss of temperature control, extreme heat sensitivity, and heart palpitations. I recently started a Caring Bridge site which helped me reach out to friends and family in a more coordinated way. Like others have shared, it has taken time (sometimes longer than I'd like) to help some people understand what I am going through. It is not just about walking more slowly. But I have found that the Caring Bridge site is really giving me an important outlet, much like this discussion board.

I have had long covid for two and a half years. My problem is stomach pains. I take the generic for Elovil and Pepcid. It has helped the stomach pains considerably. I lost ten pounds with covid and I have gained ten pounds with the Elavel. My metabolish seems to be shot. I have had one test after another and everything looks fine. I am going to go to Cedar Sinai in July. I hope they can help with this problem, but I am not hopeful. I have seen 5 doctors, none of which seem to know what to do. My hair is also thinning.

I got Covid 12/19/21..the day my world forever changed. I was unable to work for several months. I went back to work and then out again for another month. The fatigue was unreal. A lot of nerve pain, my right arm was unreal. It felt like I was getting zapped by an electric fence 24/7. My toes are still numb , reddened and sore from my covid toes. For the last year 1/2 it hurt to walk and put shoes on, I just went to a foot doctor the other day, he took xrays and told me to get some blue accommodator orthotics. I wore them yesterday , and for the first time, I could walk without the nerve pain. How wonderful is that. The worst part of this is the way covid attacked my immune system and left me with a severe case of ulcerative Colitis. Medications do not work. My hair falls out daily. So many side effects from the medications, it was worse than the disease itself. Hospitalized twice, unable to eat normally. I have a physical job and I have told that the physical activity and lifting revs up my gut. This is the worse part for me as I have been very isolated as people do not get this long covid syndrome, so I have preferred to be myself. It just makes it easier. I hope you find some help . It takes a long time , patience and prayers. There is no cure for this syndrome as they do not know what to do with all of us. We a mystery to the medical profession. I hope some day they can help us. Hang in there. You can write me anytime. I love this connect at least we are not alone. Sincerely, Kitty2