Long COVID: Accepting my new normal

@da69 I have a similar story to tell. All of my symptoms are pretty much gone with exception of what I call a 'unique head sensation'. My mental and physical energy has returned, I don't suffer from brain fog. I do need to be careful not to exert too much or my Exercise Intolerance and/or PEM rears its ugly head. My 'unique head sensation' feels like dizzy, but not quite like that, feels like dropping on a roller coaster, but not quite that, feels like light headedness, but not quite that. Weird description huh?! If that would go away I'd be dancing, singing , and screaming hallelujah!

Through all this I would say I have learned to cope and if this is the best I can be, so be it. At least I know where my boundaries are.

I had Covid Dec 2020. Was sick for 3 wks but not hospital sick but sick enough to be in bed which isn’t me. I lifted weights for 30yrs, even power lifting for a short period so being healthy and strong and active was my life. It took me 3 months after the infection to feel normal again. To catch my breath and lift normal weight was exciting again. But then 3 months later I started having a slew of symptoms and everything came back with a diagnosis that was not explaining my symptoms and also not anything treatable… cardiologist diagnosed two types of heart palpitations untreatable. GI dr I’m still seeing for the recurring pain has done colonoscopy, endoscopy, ct scan, blood work, 4 types of medicine for far and I’ll see her again in 3wks to try the last option of medication…
My pain, numbness, dizzy, loss of time and energy, leg/muscle cramps, extreme pain after workouts that was debilitating couldn’t be explained by a neurologist who did MRI of neck and lower back but wouldn’t agree to a brain MRI, did nerve function test and told me there is no explanation and I should look into physical therapy.
Went to my rheumatologist who did prescribe meds for my muscle cramps, tried different medications to help with my joint pains that didn’t change my symptoms only made me sicker.
Finally after 6 months of thinking I was dying because long covid only applied to patients who were hospitalized an endocrinologist told me I had long covid.
So after researching long covid a lot of things made sense but still no answers or treatments from anyone.
Wasn’t until April 2023 they discovered PEM as a diagnosis for the extreme muscle pain and fatigue.
If you research long covid PEM research trials I think you’ll see why we are so out of breath and fatigued and in pain.
My lung function tests even with asthma were normal but I can’t walk up 2 flights without breathing hard and my legs being on fire and like they’ll give out.
If you see on the research it explains that 02 levels are actually adequate but the mitochondria in the cells are not functioning properly and not converting the oxygen into ATP (energy) so the muscle is becoming fatigued like it’s in an anaerobic state even when it shouldn’t be. This is at the least explaining the fatigue, short of breath, weakness and pain…. The problem is they don’t know why it’s happening or how to fix it. But knowing the problem can lead to research on how to improve or treat it.
I’ve also a month ago been diagnosed with fibromyalgia. And working in healthcare for 15yrs I never knew much about it but once I researched it I found that I do have a lot of those symptoms too.
Fibromyalgia has been diagnosed in approximately 60%+ of the long covid community…. And again, not a lot of information but from my research studies have identified an increase in painful autoimmune antibodies that are not identified and can’t find a cause…. So again great that there is research linking an actual cause but not any information of the cause or treatment. It’s looking like an autoimmune disease as well that is assumed to be caused by either PTSD, or a viral infection (like Covid) or EBV, Hep C, or HSV…. There is also the assumption that it can be caused from having chronic pain like arthritis or other painful autoimmune diseases which in turn causes the brain to perceive pain more severely where it should not and also causes inflammation in joints & muscles, fluid retention, migraines/headaches, dry mouth, vaginal pain after intercourse, numbness in hands and feet, fatigue after exercise or normal activities, etc.

Just so you guys can look up information for yourself and hopefully find some solace in it.

Maxb
I was tons of fun. (Levity joke)

I agree. It is wasted energy, but sometimes that’s how it goes.
I have better days, and worse days for handling the frustration.

Yes, this is a good place to come to vent, and feel understood.
I do wonder if we will get through this......
I truly hope so.

Yes, the reality is I was the one in my group of friends that always wanted to do more, always go further, always stay longer, rallying up the troops etc. Now I’m the one who never does, and haven’t seen them for quite some time. As far as Getting through it, Hope and understanding is all I have left. So I must believe in that, especially with a group of people here, who may be a valuable asset to our recovering. So in short, yes I believe in one form or another we will get through this.

I would recommend Manuka honey. I get mine from Whole Foods. It is one pound from Australia for $36 with a rating of 300. I skim the top with the edge of a teaspoon to get a small amount. If I dip the spoon into the honey, too much sticks to the spoon, like over a tablespoon. For me, too much can bother my stomach.
I have been battling long covid since 9/22. I was doing better this winter, just sitting around the house, but on a nice weather day, my wife and I decided to go for a 1/2 mile walk. I did it but glad it wasn't longer. Two days later, the fatigue and breathing problems came back strong with the PEM.
My family got me the Manuka and now I am starting to feel much better. I understand that it has to do with the Manuka assisting the T cells and the cytokines. Whatever, I feel better. Hope it will help you.

Through all the Covid and long Covid, based on CT scans, exrays, and pulmonary function testing, there is no lung damage. There is no opaque presentation, ground glass, or scar tissue.

But, I contract bronchitis fairly regularly, am unable to do any physical work, no exercise, and no walking of aubstance. All these things I try make everything worse. A link to PEM on this thread explained that for me. Thanks to all which spoke about that issue.

Back to bronchitis and lung function.

I have had long covid many times since Dec 12, 2020. The regimen my PC doc, my wife, and I have determed the best is:

1) recognize the overall symptom quickly (fatigue, sleepy, possible feaver from Covid, flu, RSV, or other respiratory virus),
2) begin puff of albuterol and budesimide, repeating albiterol each 4 to 6 hours and budesimide each 12 hours,
3) get rapid tests of all other viruses, get blood sample for Sars CoV-2 antibody test (only 100% fool proof way to determine Covid negative or positive for having or had ashort time prior to blood test,
4) begin all other plant source treatments for positive identified pathogens. I am allergic to many medications, so tamiflu or like, cause issues and/or fail.
The plant phytochems in the plant itself or in supplement form (available to absorb) are most of my solutions outside of prednisone, and
5) get on azithromycin, a very broad spectrum antobiotic with high efficacy on: a) rwpiratory bacteria (specifically pneumonicaucal), b) mycoplasma (cause flu-like symptoms), and non respiratory bacteria.

The faster one attacks, the faster the minimizing or preventing other infections and symptoms..

I also have similar issues and need to begin items 1-5 with: high pollen count, dusty conditions,

Jt

Thank you. With any movement of substance (take a walk around the house ot to the barn, lift a 5 lb dumbell three sets of ten, or anything along those line) in an hour to half day my symptoms are all much worse. These lasted weeks or months. The monkey and the hammer test (monkey does something.... hammer wacks the hand) has trained me to not even try, which is exactly opposite what should be done.

I was unaware of PEM. It explains everything with the attempting to build some strength and stamina.

Thank you.

Jt

Thanks Max,
Yes, I was the “spark” in my group too. I can’t provide that anymore. I’m barely making it through the day. But because my symptoms are largely sensory, other than weight loss, I don’t look sick to others.
I think they believe I’m just being dramatic! Nothing could be further from the truth. It takes so much energy to appear to be normal in noisy restaurants and out around people, that it just isn’t possible for me.
My husband stands by me and my children try to understand. I’m know I am more fortunate than many.

Similar situation for me. Got first round of covid in March 2020. Have had pcs since then. Severe fatigue, sleep issues, right lung pain, that lhc cough. Even lost some short term memory for 6 weeks initially. Have had 6 vaccines, but none sold me from grungy it 2x more. It was the last time in Dec 22 that I developed the never ending cough.

Nothing has really helped, though I see my specialists ever 4 months. Recently I started seeing a new specialist. One thing he did is test for thyroid, but not just the standard tests docs give. I always come out normal. But he has even written research articles, published, on this. He does several other thyroid tests. I had no idea how this issue could affect so much. Metabolism is the magic word I think. It helped my friend who referred me immensely. So I am going to be starting his regiment this week. Fingers crossed. I'll report back.

@cropdoc Mayo is big on moderating your exercise and/or activity level so that you don't trigger PEM. It is really tough to do, because when you have a few good days you will want to race around doing things which triggers the PEM or Exercise Intolerance. Where once I was 45 minutes 6X per week aerobic and restistance in the gym Mayo has restricted me to 10 minutes focused on muscle not aerobic exercise. You should start low, see where your tolerance is, and over time work your way back. Mayo coaching was "consider yourself an injured athlete, you can go right back to where you were pre injury". Wish you the best.