What helps longhaulers dealing with Chronic Fatigue?

My pcp has me on Metoprolol for the racing heart.
For the crushing fatigue, I started taking Royal Jelly made by bees. It gives you energy. I have to take reduced amounts because of medication sensitivity and LC insomnia. Slowly, over the last two months, I have gone from basically being nonfunctional to walking about 2 miles 4x a week. I am nowhere near normal, but at least I have some function. You can find it on Amazon. I get the kind mixed with honey.

Here are medications that help me:

An ADHD stimulant, such as Adderall or Ritalin.
Guanfacine ER, which is also an ADHD drug, but is not a stimulant. It helps with executive functioning.

I was previously taking Diphenhydramine (Benadryl) 25mg up to four times a day, which helped a lot with shortness of breath and exertion intolerance, but it can exacerbate prostate issues when taken for a long time, and I’m a 62 year old man, so…

I have just started taking Famotidine (Pepcid) 40mg twice a day, and it seems to be helping quite a bit with brain fog and some other inflammation related issues.

I don’t have time right now to pull together the links with information on these, but I can do that later if you need me to.

I would suggest that you see a neurologist. My GP is useless with respect to long covid, and the pulmonologist he referred me to suggested ramped pulmonary rehab, which is exactly the wrong thing for most people with long covid. My neurologist actually listens to what I have to say, and the information I find, and she will prescribe things off label when it is safe and there is some credible evidence that it may help.

Good luck!!

I'm encouraged to learn about your increase in exercise tolerance over two months. Perhaps I'll experience the same improvement in exercise tolerance!

May your recovery continue!

I was taking Ritalin for a short time and it helped but I don’t like the after effects so I stopped.

The thing that has worked the best for my fatigue is doing Stellate Ganglion Blockages with a pain specialist. For my racing heart and POTS I am taking ivabradide. I feel much better with them but I am not by any means cured.

I did have long covid symptoms for 1.5 years with fatigue, muscle aches, breathing problems and brain fog. I read about an Italian study that focused on nitric oxide that eliminated symptoms. It is now my “way of life” and I am back to normal.
This may sound strange, but a lot of covid weakness is caused by a low amount of oxygen getting through the arteries / blood vessels that are shrunk tight because of low amount of nitric oxide. You should have foods with nitrates that the body uses to make nitric oxide to allow the arteries to open up.
They say the best way to increase nitric oxide is to have dark greens. The darker the better. When we chew the greens, the good bacteria in our mouth creates the nitric oxide. (Remember, no mouthwash or toothpaste with fluoride that could knock out the good bacteria.)
I try for a type of curly Italian kale, like dinosaur or Lucinato / Tuscan that looks tough but is tender. ( Other choices are arugula or spinach. ) I rinse the kale well and than pull it off the stems and cut it up with kitchen shears.
Beets are a great source of nitrate and you could put some on the greens.
Blueberries are good and could also be added to the salad or have by themselves.
Watermelon is a good source.
If you could find unsweetened cocoa and add honey. I put it in decaf coffee, but you could add or use milk or almond milk instead.
Nuts and celery are a good source, so a nut butter on celery sticks would be good.
Also include some orange slices for vitamin C which is an antioxidant that helps with nitric oxide production.
I take L-Arginine and Citrulline that helps produce nitric oxide. The Italian study used L-Arginine. If you are on any prescription medication be sure to check for interactions.

I have been in the NIH Long Haul research program since 2020. I have been diagnosed with all the tropical symptoms- loss of taste and smell, brain fog, dizziness etc. all have improved over time with the exception of Chronic Fatigue. I have asked, even pleaded with my doctors and researchers for a solution for this and get only blank stares. I have regularly exercised, watched my diet, lost over 30 pds, get plenty of sleep and take all sorts of vitamins and supplements- with no effect. Does anyone have any suggestions? All my blood work and multiple tests with the NIH study come back normal. Very frustrating

seidholz, To me it sounds like you have the fatigue that goes along with Long Covid. I have had it for 2 years. I had my first bout of COVID in August, 2022 (this was the worst) and then I had it again in October, 2023. I was diagnosed with Long Covid in June of 2023.

My main complaint is fatigue. I still take a nap every day. If I overdo, the fatigue is debilitating.

I take a lot of supplements for Long Covid including D3 with K2, C, B complex, Zinc & Vitamin C. I also take NAC for extra mucus. Not sure what you are taking, but, ask you doctor before trying.

I personally would go to an Integrative Medicine doctor that treats Long Covid. They can do infusions to boost your immune system. Sadly, it is out of pocket. I could not tolerate the infusions due to my sensitivity. Glutathione is used to treat Long Covid by an Integrative Medicine doctor. I could not tolerate this one either.

Also, have you had your B12 & D3 & Iron checked? COVID wiped mine out. I am on weekly B12 injections as my body has Gene Mutation issues with absorbing B12. Having low D3 can make you tired as well. A primary doctor can diagnose this.

Praying for you to feel better. Fatigue is frustrating. I will say that a nap daily since COVID does help greatly.

Mayo has a chronic fatigue program. Give them a call and get signed up. I used it and it helped.

I had the fatigue issue long before covid and have been through all sorts of testing, mostly heart, then came covid. had 2 pfizer vax, then had 2 strokes odd thing did not even know i had strokes until mri results. went from typing fast with both hands to slow one finger that takes forever. 80 yrs old now, i just want to go back to how i felt before. been to 4 neurologists, one rheumatologist, functional dr. you name. its hard when you live in an urban area to find someone that doesn't look at you like you are freaking crazy.