What am I actually supposed to be doing to get better?

I'm in the same boat as you and I've been to a long COVID clinic. I've only been dealing with the sever symptoms for about 5 months, and just was denied Long term disability and had to resign from my job teaching as I had no further FMLA or sick time I could take.
The long COVID clinic in Orlando,FL states that they "don't deal with LTD paperwork". How else am I supposed to get a diagnosis?!

God Bless You! I too have Long Covid. I have been to an Integrative Medicine doctor for 6 months and I was unable to tolerate any of the treatment plans. IV infusions, Glutathiane (SP?), Naltrexone, NAC, etc.,

I can tell I am older than you. I have had to learn to take it 1 day at a time.

If I push too much...I pay for it with exhaustion. I also have other pre-existing health issues, which COVID worsened.

Praying for you. America was not prepared for COVID and the doctors are still learning. Don't give up! Hugs & Prayers....

I would take it slow and steady..... I would just do some exercise but not too much.....for awhile anyway....it's not worth risking "a crash" again.

Athena... I read your post and thought... you and me both! Me and a lot of other people in this support group, I'm sure. I was diagnosed with Covid on 3/17/23 and began seeing my doctor a few weeks later when I was beginning to feel worse (my symptoms... bone crushing fatigue that comes and occasionally goes, insomnia with that; brain fog, confusion (math problems!), facial rash that comes and goes (it's back now and down my neck), and dizziness (worse lately), so there's fear of falling and anxiety about all of it, etc., etc. I got two different diagnoses (and treatment plans that didn't work) for the rash. My PCP said "I don't think it's Covid, it just takes some people three or four months to get over it," (isn't that the very definition?) ... and also of course, "hydration, rest when you're tired, and maybe you need some tests... " So I got a lot of tests and I'm normal! So, I need some more tests?, until finally, after reading these posts for a few months, I realized it's just Jell-O at the wall, and neither she (nor anyone else) has any idea about what to do. I finally wore her down to the point where she gave me the diagnosis of LC. So I got on the wait list for a LC clinic in my home town (Chicago), at a highly rated hospital (the other ones didn't evens return calls), and was scheduled to begin 4/1/24, only to be told a few days ago that's cancelled because that neurologist is no longer seeing LC patients, and my appointment has been moved to 9/11/24. From April Fool's Day to Nine One One, not auspicious. All I can say is this Forum has been a gift; reading everyone else's struggles makes me feel very sad, and also less alone. Reading about all the "treatment/cures" that people have tried is discouraging; some help a bit (maybe, for a while), and some make some people feel worse. I've read recently that the LC clinics are overloaded partly because many doctors are leaving to go on to other specialties where they can actually help people get well; this can't be fun for them either. My takeaway (for now, it's evolving), is ... keep coming back to this support group for the collective wisdom here, keep doing whatever helps you feel better, keep doing the research (I plan to be among the first to know when treatment becomes available). The season of the year (Easter, Passover, Holi, whatever) reminds me that hope springs eternal. BTW this is how I feel on a GOOD day when the sun has been shining and I got some sleep last night. I hope for some better days for all of us in the near future, when some of the LC research begins to pay off.

I find I can be doing something physical or mental for about 4 hours/day. That counts everything from the time my feet hit the floor until I'm again seated with a DVD to watch or a book to read. I can read without it counting as paart of the 4 hours, but I can't do computer work of any sort. The doc's who have advised you to not overdo are spot on. Each time I overdo, and there is so much to do just keeping a house going, and the down time required before I can again be active for a few hours a day, makes me much more cognizant of not overdoing. I have hired a woman whose children are in school to come in a few hours one week to do things I just can't get done, and the alternate week she comes in to do a thorough cleaning. This is much less expensive than assisted living. Right now, on top of LC, I've got a UTI. Once over the UTI, my doc has suggested I do a trial of Provigil (Modafinil). Smallest tab is 100 mg. Sleep doc suggested I start at 100 mg/day ; LC doc says to start at 25 mg/day and build up because there is less change of being on too high a dose. Too much will leave me agitated.
One other thing to pay attention to is to stay on top of lab work: thyroid panel (not just TSH) checking for T3 as well T4, plus B-12, and D-2, and whatever else your doc recommends. My recent labs showed I was again T3 deficient; bringing the T3 up to "normal" may lead to me having a bit more energy - it certainly won't hurt.

I remembered this old post from a different discussion - doctor's story with LC. The "radical rest" bit stuck with me as it seemed the way forward with LC.

"emo | @emo | Feb 28 7:04pm

I haven’t personally experienced this pattern (I got long covid after getting covid in 2022, and I was vaccinated), but one of my doctors had a similar situation as you.

She got COVID in 2020 before a vaccine was available, it was a mild case, and she got long COVID. She got well enough to return to work, but then had debilitating fatigue, brain fog, she used to be excellent at mental math and now struggles with it, has short term memory issues, had to see a pulmonologist, etc.

I see her quite regularly, including when she had to take a medical leave and now she’s one of the specialists on the long covid team at the medical center where I’m a patient…she’s shared bits and pieces with me over time, especially after I got COVID, and that’s how I know this.

She has improved, or at least, she returned to work, though she still had the brain fog and cognitive slips. I believe she takes medication, though our conversations aren’t to that depth. She has shared with me that she had to take “radical rest” to recover and now she has to adhere strictly to pacing her activities. I remember when she first returned it was with limited patients, and now she only works during specific times of day. But not everyone has the luxury to do that.

I figured I’d share her story though if it helped to know you’re not alone and she did get better."

I have been struggling with LC for two years. A couple of months ago I started taking LDN, low dose naltrexone, 3 mg, and my neurological symptoms appear to be lessening. Headaches are better, horrible head noises have diminished greatly, and fatigue has lessened. LDN is touted for helping with these kinds of symptoms and I do believe it is working.
There are no side effects and I have to recommend you give it a try. I get mine from a pharmacy in Florida as my doc feels they have the best product. It is by prescription only. Hope this helps. Best to you all.

I highly recommend reading the book "Eat to Beat Disease" by renowned physician-scientist and Harvard-trained physician Dr William Li. He founded a nonprofit organization you can read about on his website, Angio.org. His research includes using food as medicine to activate the body's natural defense systems to fight disease and repair damage to the body. The guidelines have helped me stabilize some of the health issues I developed after COVID. I am encouraged to learn that there are specific bioactives naturally in food that can help heal the body and prevent disease.

My daughter had Chronic Fatigue Syndrome and was ill and bedfast for a good part of 18 years.
I do know that this can be a long proposition. Two years ago she hiked the Pacific Crest Trail in WA State, from the Columbia River (border with Oregon) to 11 miles short of Canada, for a total of about 280 miles. One can recover!

How did she get better?