Covid-19: Hope for Long Haul

I want to offer hope to the people with Long Covid-19. Having been through four bad pneumonias, with increasingly long recovery times, and now disabled for doing Family Medicine, I have experience to share. First I want to talk about chronic fatigue and fibromyalgia.

I am a piler, not a filer. Including in my brain. I have been adding to the chronic fatigue and fibromyalgia pile since I was in medical school.

In residency a new patient questions me. “Do you believe in chronic fatigue?” he says, nearly hostile.

“Yes,” I reply, “but I don’t know what it is or what causes it or how to fix it.”

For years different causes were suggested. Often infections: EBV, mononucleosis, lyme disease. Some people didn’t have any infection. I did note even in residency that my chronic fatigue patients all had one thing in common: they were exhausting.

Does that sound terrible? They were all type A, high achievers, often super high energy. Often they got sick or crashed when they were working three jobs, or working 20 hours a day on their own business, or doing something that sounded insanely exhausting and unsustainable. And most of them wanted that back. “Ok, wait. You were working 20 hours a day, seven days a week, got sick and THAT is what you want to get back to?”

None of the chronic fatigue people seemed to be type B.

Eventually I read that one in ten people with ANY severe infection can get chronic fatigue.

Then I work with the U of Washington Telepain Clinic, on zoom. They start studying functional MRIs of the brains of people with fibromyalgia.

They use a thumbscrew. They put a measurable amount of pressure on a person with no fibromyalgia. The person reports 3-4 out of 10 pain. The brain lights up a certain amount in the pain centers on the MRI. The doctors can SEE it. Then they test the fibromyalgia people with the same amount of thumbscrew pressure. The fibromyalgia people report 8-9/10 pressure and they are not lying. The pain centers in the brain light up correspondingly more. So they ARE feeling 8-9/10 pain.

Is this a muscle problem? A brain problem? Or both?

It appears to be both. Chronic fatigue and fibromyalgia and other disorders with pain out of proportion to the physical findings were being called “central pain processing disorders”.

I thought of chronic fatigue as a sort of switch. As if at a certain level of stress or exhaustion or infection the body would throw a switch. And force the person to rest.

I wondered if the type B people just rested and got over it, while the type A people fought it like tigers. Which seemed to make it worse.

And now we have Covid-19. The study getting my attention is saying that 20%, or 1 in five people age 18-64, have Long Haul symptoms. Over 65 it is 25%, one in four. And it can happen in people with no preexisting conditions. Preexisting conditions or not, this sucks. The two biggest complaints are lung related and muscle related.

I have chronic fatigue following my third pneumonia in 2014. I might be just a little type A. I went back to work too soon (6 months after the pneumonia) and after a half day would crash asleep at 3 pm. For another 6 months. Now that I have had the fourth pneumonia and have been off for a year and been on oxygen, I feel better than I have since before 2014, even though I still need oxygen part time. Guess I was in denial about the chronic fatigue. NOT ME!

So, dear reader, learn from me and don’t be like me. The biggest thing that I have had to get through my thick type A skull is that when my body wants rest, I need to rest. This can be hella annoying, as my son would say. I have to pay attention to my energy level and decide what to do. And some of my precious energy has to go to things like laundry and paying bills! How very frustrating. My markers are energy level and also pulse. My pulse tells me when I need oxygen and when I am really sick. With the first pneumonia back in 2003, influenza, my resting pulse stayed at 100. My normal then was about 65. When I stood up, my pulse went to 135. It was EXHAUSTING to stand up. I had to rest half way up one flight of stairs. It was hard to walk two blocks to pick my daughter up from primary school. And I looked fine. Neither my doctor nor I could figure it out. I finally guessed that it was lung tissue swelling and hoped it would go down eventually. It did, but it was a full two months and my doctor partners thought I was malingering. I tried not to wish it on them. It sucked and I felt awful back at work, but my pulse had finally come down. We even did a heart ultrasound, but all it showed was a fast heart rate. My chest film looked “normal”, because the tissue swelling is throughout the lungs, so it cannot be seen on a chest xray. It was very weird, but I recovered. And all the descriptions of Long Covid sound like my lung swelling. Fast heart rate, difficulty breathing, muscle pain and terrible fatigue. Go back to the couch.

Go back to the couch and wait. Do what you have to but if your heart rate is over 100 when you get up, you have to rest. Otherwise you will prolong it. Seriously.

More later. Peace me and sending love and peace.

Anna’s hummingbirds can survive below freezing temperatures by slowing their metabolism at night, until it warms up in the morning. Talk about resting!

wrong word

you are angry you say
I don’t think those are the right words, I say
not angry? you say
bored, I say

BORED you say

Yeah, I say
Well, you say you don’t love me
You say you won’t change
You say you changed once, in the past
You say you won’t go in a church
You say you did that
You say you won’t go in a casino
You did that

I’m BORED

My first thought about the church
My first thought about the casino
Is that is clearly where I can go
If I want to avoid you

My second thought about the church
My second thought about the casino
is ICK. Why am I hanging around
someone who doesn’t love me
someone who doesn’t plan to change?

My sister and I talk
about the people who don’t change
about the people who remain the same
about the stubborn who bury their heads

We notice them shrinking
as the world changes around them
the things they are willing to do
the people they are willing to talk to
the places they are willing to go
get smaller and smaller and smaller

You dream of a small cabin in the wilderness
your brother shows up and an attacking bear
in another dream I am well and busy and happy

May all your dreams come true
my love
if you really want them to

I am well and busy and happy

are you?

__________

April 18, 2022

Covid-19: simplified self care

  1. I am a Family Practice Physician for 30 years. I have had pneumonia four times. I last got pneumonia on March 20, 2021 and I am still off work and on oxygen. This is the first time I have been on oxygen. No tobacco, no marijuana, no lung disease found to date but my mother had tuberculosis when I was born and my father smoked unfiltered Camels. With the hospital beds filling up, this is to help keep people out of the emergency room if they don’t need to be there and to help people track how sick they are.
  2. Learn to take your pulse. You need a second hand. Your heart rate is the number of beats in 60 seconds. Take it at rest (which means sitting or lying down). Then try taking it after you walk. It should be regular unless you have known atrial fibrillation. Also, if you are fifty or older, you may skip some beats so that you have early or late ones. That is not worrisome.
  3. Normal is 60-100. If you are very out of shape, you might go up to 120 after you run up the stairs or walk fast.
  4. If your resting pulse is 120 or higher, call your physician. If you are very short of breath with that or your lips are turning blue, call an ambulance right away.
  5. If your resting pulse is normal, say, 70 beats per minute, and your pulse after walking goes up 30 points or over 100, you are sick. If you are very short of breath after walking you may need oxygen. Call your physician and walk… really… slowly. When your lungs are swollen, there is less air space to exchange oxygen and your heart makes up the difference. If your heart is beating at over 100 for long, it is like running a marathon. Don’t stop walking completely because you are at risk for blood clots. But walk really slowly.
  6. If your resting pulse is normal and your walking pulse is ok, try a loaded walk. Carry something that weighs 20 pounds if you can. Then sit down and check a pulse again. If it is over 100 or jumps 30 points, you too have lung swelling, it’s just a little more subtle. You need to rest too.
  7. With practice, you will have a good idea what your pulse is before you do a formal count.
  8. You can use a pulse oximeter but you have to use it accurately. The fingers should be not moving and lying on the person’s knee or table or something. Otherwise it will give inaccurate readings and scare you. With a regular heart rate, look for the light to be picking up regularly before you believe the oxygen level. O2 sats under 87% need oxygen, but also if someone is going below 95% or is a child, call doctor or ambulance.
  9. Take a multivitamin. It is a lot of work for your heart to race fast. Rest, rest, rest. I have had 4 rounds of pneumonia with lung swelling. It took two months, two months, a year and this time I am five months post pneumonia and still on oxygen.
  10. Don’t use quack supplements and don’t take veterinarian ivermectin. Hello, you are not a sheep.
  11. Remember that if someone is hypoxic, they may act goofy, happy and unconcerned or be scared or have memory loss or just be confused. I write really weird rhyming songs when hypoxic and have the poor judgement to sing them to my doctor.
  12. GETTING VACCINATED IS YOUR BEST BET TO NOT DIE OF COVID-19. AND WEARING A MASK ALL THE TIME AROUND OTHER PEOPLE.

Good luck and take care.

Influenza: check your pulse!

This year influenza is bad. My key test in influenza is not a chest x-ray. It is taking a resting pulse and a walking pulse.

Why? Influenza can cause a walking pneumonia. Walking pneumonia is where the lungs are infected throughout and there is tissue swelling. It is different from a lobar pneumonia. In lobar pneumonia people run a higher fever, look sicker, and on the chest x-ray, that part of the lung is white: infection, not air.

In walking pneumonia, the chest x-ray may be read as normal. This is because all the lung tissue is equally swollen. The swelling means that there is less air space. The person may feel ok at rest. They feel exhausted when they walk because the heart must take up the slack for the missing air space, the swollen lungs. At rest this week one person’s heart rate is 84. After walking it is 124. Normal is 60-100, so 124 is like running a marathon: exhausting and hard on your heart and body.

I have patients saying “I was sick two weeks ago and I am still exhausted.” If their pulse is much over 100 after they walk, they cannot work until it comes down. If they work and wear themselves out, the lungs can’t heal. The treatment is rest. If they are at work with a pulse of 114 or 124, then they risk getting a secondary infection in already damaged lungs. They could die.

Check your pulse at home. Count the number of heartbeats in 60 seconds. That is your pulse. Walk around, sit down, and check again. That is the walking pulse. Over 100 is not normal.

This is a bad influenza. The tamiflu (oseltamivir) helps but works best in the first three days of flu. Check your pulse, be seen, rest and get well.

http://www.peninsuladailynews.com/news/three-die-of-flu-on-peninsula-public-helath-officals-say-a-fourth-death-said-to-have-been-in-seattle/