Any tips to help recovery for a COVID Long-Hauler?

Hi @esails, did you get ANA titer lab work done? What were the results? How are you managing your COVID fatigue?

Weeds, it’s a recovery process that requires patience and learning new limits. Do you find it’s like 2 steps forward and 1 step backward, but overall things are getting better?

Yes, in a way it seems to be getting better, but I am being SO careful not to overdo. I dole out marbles for every chunk of energy I use per day-8 marbles max. But also one thing the doctor suggested that seems to be helping; I have quit eating dairy, and am seeing a difference now in both the frequency and length of my fatigue episodes. This was not an easy feat for someone addicted to yogurt, cheese, and cream in my morning coffee! But it has been worth the effort. Has anyone else reported the same?

I had a severe case of covid the first week of last November. I was very ill and had to be hospitalized for 10 days. I am a 7 yr recipient of a deceased donor’s kidney. I was so thankful the Lord protected my kidney. I ended up with pneumonia so breathing was very difficult. I was treated with some oxygen, steroids and Vicodin. My chest was very painful snd it hurt to breathe. I had to have visiting nurses and visiting PTs for a month. I needed a walker to get around for at least 3 months, possibly more. I’m not sure. It took me quite awhile to feel normal again. I still use the seat on my walker frequently for for when I cook and do my hair. I’m 72 but don’t act my age. Even though I think I’m doing quite well, I do still have brain fog and can get winded easily. I don’t let it get me down though because I’m so thankful I got through it. I still have natural immunity so I have not gotten vaccinated. I also have neuropathy and do want to stir up my nerves any more than they are. So far my drs have agreed with me, especially my hematologist.

My Dr said the most effective battle lines against Covid-19 are the same after infection as before. Assess your current level of wellness and work to improve it. Look at your patterns in areas of eating, exercising, and sleeping. Take steps to address any deficiencies in those areas but be gentle with yourself and consult your physician before you get started. Here’s what’s helped in my case. I don’t eat meat and avoid canned food other than soup, tuna and baked beans. I tune into the PBS program canned “Sit & Be Fit” for minimal exercise and stretching. I limit my activities after dark so I can wind down before sleeping. As a retiree, I have very little in-person contact with others so I’m not exposed to the virus much anymore. One year ago I had a quite an ordeal with Covid and really believed I was going to die. My brother and two of my neighbors died from it. I’m so thankful to have survived and to know that you have too !

Has anyone experienced adrenaline surges when falling asleep or that wakes you up, after covid

That sounds like what I experienced during peri-menopause. I don’t know if you’re male or female, but have you ever experienced such adrenaline surges before COVID? If yes, are they similar to that?

When you get these adrenaline surges, do they go away quickly or does it keep you awake for a long time?

What type of doctor could evaluate Post Exertional Malaise? I've had symptoms of Long Covid for 23 months. Yesterday, I bought some flowers and spent about 1.5 hours planting and moving things around. By the time I was done, I was sweating like I never remember doing – wet hair, etc. It was warm but not that warm. Anyway, I did pretty well while planting, resting as needed, babying my bad knee and shoulder. I was breathing heavily but after all, I’m out of shape. I came in to rinse off and by the time I was done, I was breathing hard (SOB), dizzy, legs shaking, had to sit down before I fell down. Took me an hour to recover. Still SOB today. PEM (Post Exertional Malaise)? Felt like a perfect description and has happened to me previously. Thank you for any pointers.

Lucy

I know how you feel. I was diagnosed in December of 2020 and feel blessed that I did not pass it along to my wife or daughter. Thankfully my daughter moved back to our house to work virtually and her company provide a discount and she wanted a Peleton. It probably saved my life as I was able to work out for 8 months before catching covid and dropped about 15lbs . The other 20 lbs disappeared over the next 3 weeks and all 35 lbs have stayed away.

I have to be supper careful walking down stairs, standing up from chairs or after doing andy stretching or core exercising

I few weeks back at the suggestion of my wife I decided to visit Rochester and get checked out. I’m tired of the dizziness , sleeping issues and the lack energy.

All tge best to hiu

I'm sorry for you, too. I used to teach Aerobic Dancing and now, can't even think of trying. I hope the clinic works out for you. I am a virtual patient at the U of MI Post Covid Clinic. They're just telling me to pace myself and gradually work up to more activity. Pacing doesn't allow me to gradually increase activity. Frustrating!! Thanks for writing.