Signe

This COVID-19 survivor couldn’t work, but couldn’t get a doctor’s note to take time off to recuperate because of a false negative.

POMFRET, MARYLAND: I woke up on the morning of the sixth with a bad migraine-type headache, feeling off. I had a doctor's appointment about my tailbone that day. So I went in, but I was very careful with the hand sanitizer and tried not to touch anything. I came back home and went to bed and had a transient sore throat that lasted less than an hour.

Then it hit me like a hammer. I was down, and I stayed down for a week. It was the exhaustion that you get the third day of the flu when the actual flu part is gone, and you're just completely wiped. Only it lasted for a week, it didn't go away, and it didn't get better. It was like the first day of muscle relaxants where you take one, and 20 minutes later, you're like, “Oh my God, I need to sleep.” And then you wake up, and your body feels like it weighs about 200 pounds more than it does. So I was lying on the couch, sweating like crazy, acutely miserable, and getting hot flashes. I've been menopausal for about two years now, so I'm familiar with hot flashes, but these are weird. They were drenched in sweat hot flashes. I had to get Kleenexes to wipe my face off because the sweat was dripping into my eyes hot flashes. 

I was acutely miserable, and I didn't have a fever — I had an inverse fever.  My body temperature got low and stayed low. I didn't want to take fever reducers because I was already so cold, but I wanted something for the general misery, so I took Tylenol. That lasted about a week. When  I woke up on Saturday,  I was better. I felt like I was recovering, and it was over. That lasted 36 hours. And then Sunday at noon, the whole thing started over again with I had a little bit of a headache, a sore throat, and crushing exhaustion, but it wasn't as bad. And then, over the next couple of days, I was unable to take deep breaths. I wanted to yawn but couldn’t. I had to keep taking extra deep breaths consciously. I wasn't gasping or having trouble talking, but I wasn't breathing properly. I had to think about it, which I've never done before. 

The second week was worse. Before I got sick, I'd been taking about 20 milligrams a day of Flexeril (muscle relaxants) and three Aleve every day for tailbone pain. As soon as I got sick, I immediately stopped both of them and started taking Flonase.  

I lived in London for three years, and I kept getting walking pneumonia. I had double pneumonia three times in a year, and the only thing that prevented it was antihistamines.  If I took Flonase or Beconase and Zyrtec while I had a cold, then it wouldn't progress to pneumonia. So the first thing I did when I got sick this time was to start taking Flonase again. But I started a little too late because there was already a little bit of gunk in the back of my head that first week that gradually worked its way down my chest. It got low enough to be considered bronchitis. But I still wasn't coughing at all. 

So that first week, I hadn't been coughing, and I hadn't been doing much of anything other than trying to breathe in and lying around the house, feeling miserable. Then I woke up on Friday morning, and I had to cough, and it felt like there were pins or knives or shards of glass stabbing all the way around my chest.  It was incredibly unexpected and excruciating. I hadn't run into anything like it, even with walking pneumonia. 

This is not like any disease I’ve ever had or even heard about.  The things that make it COVID are the fact that for six to eight weeks, every three to four days, I had a 36-hour reprieve. I would wake up in the morning, and I would feel much better. And I would know I was very sick because when it went away, it all went away. It wasn't that my muscles were deconditioned from inactivity; it was that the disease was making them feel weak because the weakness went away on the reprieve days, and then it came back 36 hours later.  This thing is evil. The first day I felt better all day. Then you wake up the second morning still feeling better. And at noon on that second day, it comes down on you like Wile E. Coyote getting hit in the head with an anvil.

I would break my experience up into three stages. There's the acute stage where you're just crashed on the couch, and you can't do anything. There's the second stage, where your chest is tight. You're a little short of breath. You can't do anything, but the fatigue is getting gradually better. The shortness of breath is getting gradually better. You have good days and bad days, but on the bad days, the bad days are generally a little less bad than they were before. And then there's the third stage, the convalescent stage, which is where I am now again, which is that the good days are longer than 36 hours. And the bad days are getting shorter and shorter. And your stamina and strength are gradually building up, even on the bad days. The bad days aren't as bad. The good days are better. You're able to walk farther. You're able to hold down conversations for longer. You can stand more. 

The hardest thing I have had to do has been to figure out how to rest mentally. I didn't realize how badly my technical brain was affected until about eight weeks in, when it started to come back. I suddenly realized that I was interested in technical stuff again. Right before the relapse in May, I wasn't doing a lot physically, but I was putting in 12 to 14 hours a day on my laptop. I was only working seven or eight hours a day at my job, but I was trying to get a technical paper done.

Since then, I've been trying very hard to reduce the amount of mental work I do. So I do only two hours on the laptop, and I close it. I do not work on a technical paper or grant proposals. I don't do any of that kind of mental, technical work outside of the work that I'm doing for my job, and I am not having the really serious ups and downs that I was having before. They're much more gradual and much more gentle. I think that's helping. 

The disease itself is weird. It’s not just this sawtooth nature to it where you are good, and then you are bad, and then you are good, and then you're bad. The symptoms are weird. It's bizarre combinations of symptoms, and they last the wrong amount of time. You get symptoms that come and go in minutes that should normally take days to resolve, or they come and go in hours, and they should typically take hours or days. The spleen pain and the sore throat came and went in less than three hours. Where costochondritis would usually be triggered by moving wrong and last for a few days, I still have it after months. 

This whole disease just doesn't make sense. I've been doing inventory every day for the last six weeks. I lie flat on my back in bed, and I poke everything from my pelvis up to my collarbones, and I see what hurts.  And what hurts varies from day to day. There'll be a spot in my digestive system that's painful, and it'll move around. My stomach will hurt. There will be an organ under my rib cage that will be achy for a few days. My rib cage will have a spot where there's inflammation, that it hurts if I poke at it, and it'll be there for a few days, and then it'll die down.  And then I'll overdo it, and a new spot on my rib cage will start being inflamed and start hurting. 

In my patient support group, we've identified five different kinds of chest tightness. We've got chest tightness because of the muscles, chest tightness because of inflammation in the ribs, chest tightness because of lungs not opening all the way, chest tightness because of acid reflux and digestive issues, and the fifth one is chest tightness due to anxiety.

When I experience any kind of stress, I can feel it in my diaphragm. It makes it very hard to breathe, but I'm not anxious about the disease or my work or even the possibility of having a life-changing disease like lupus. I'm anxious about talking to my doctor to try and get that doctor's note. That's what stresses me out. That's what I can feel.

I’m not processing any kind of exertion normally right now. I've discovered in the past few days that the exertion of walking up the stairs and brushing my teeth and braiding my hair before bed is too much. If I try to go to sleep 15 minutes after I do that, I will be miserable tossing and turning in bed for hours. On the other hand, if I go upstairs an hour or two early, and I get ready, and then I go to bed and read in bed for an hour, I can go to sleep just fine. 

Before this happened, I would go upstairs at 8:40 and be asleep by 9:15 at the latest and able to wake up at 5:00 am with no trouble.  Now I have to get ready for bed at 7:40 pm and be in bed at 8:00, and then maybe I can turn the light out around 9:15 and be asleep by 9:30, and even with all that, I'm not waking up until almost 7:00 am. 

It's just a completely different thing. I miss getting up at 5:00 AM and getting a ton of work done before breakfast, but that's not a thing that I can do right now. If I tried that, I'd be getting five hours of sleep a night, and it would be a disaster.

I don't know how to convey how profoundly weird it is.

Doctors

The second week I called the doctor and said, “I'm not coughing, but I can't breathe. My chest is getting tighter and tighter and tighter, and I need to stop and take larger and larger breaths.” I was hoping for a flu test to rule out the flu so I could get tested for Covid.  

I went to my appointment, explained my symptoms through the car window, and was diagnosed with bronchitis and Raynaud syndrome. It was a cold day, and he had trouble getting a good blood oxygen measurement. I've had bronchitis before, but I’d never had bronchitis where I could point to the precise spot where the singular piece of gunk was.

I explained that it didn't seem to cover all the other symptoms, like the crushing, debilitating exhaustion and the weird periodicity of the symptoms, and the inverse fever. And he said, “oh, tiredness is normal with bronchitis,” and listed off a bunch of other symptoms that didn't sound like anything that I'd been experiencing.  I told him it didn’t sound right, and he didn’t listen.  He prescribed me some antibiotics and walked away.

It didn't feel like a bacterial infection. It didn't feel like there was stuff in there multiplying, causing bronchitis. It felt a little bit of gunk had gotten into my chest and was not being adequately expelled. So I didn't see why I would need antibiotics. Four days later, I called to let them know that I was getting worse and not better. They asked me to finish the full ten days of antibiotics and then call them back.  Every time I’ve had antibiotics before, they have started helping in the first three days.  They didn’t even listen to me explaining that they were making me worse, not better.

So I made an appointment with a telehealth doctor through my insurance, and she was marvelous. We did a FaceTime interview, and she watched me breathe. She looked at where I was pointing when I said that I hurt. And she diagnosed me with viral bronchitis and costochondritis (inflammation in the chest wall). She put me on a 12-day tapered course of prednisone and an inhaler for the bronchitis. I used the inhaler, but I didn't need it much. I was still a little bit queasy, and it took a few days for the prednisone to kick in. There were definitely three or four days where I felt worse rather than better and a couple of nights where I wasn’t able to sleep, but by the fourth or fifth day, it was amazing. I felt everything was getting better, and it was all good.

And then I ran out of prednisone.  I hadn't gone back to my primary care doctor. The prednisone was working and the telehealth doctor had said that if it's not better in five to seven days, then I should go see someone.  I was better. Then the prednisone was gone, and I went right back to where I was before, only not as bad. I still had shortness of breath. I still had chest tightness and a little bit of pain. So I called the telehealth group again to say, “Should I be concerned, or is this okay?”

They diagnosed me with asthma, referred me to a pulmonary specialist because I still felt queasy, and prescribed an inhaler that did nothing. This felt completely wrong. I didn’t have generalized inflammation in my chest while breathing; I had pain in my chest wall.  So I went to the urgent care center, where they did some blood work and an x-ray and had me breathe into a tube. The results were negative, so they told me to treat the costochondritis with Tylenol and heat and to see my primary care doctor in five to 10 days. At that point, I was still not comfortable going to my primary care doctor, so I just kept treating myself at home.

I was getting better by the end of April. In May I had to give a talk. After having a lot of cereal with milk, I had intense stomach cramps and diarrhea and just barely made it through my portion of the talk. A week later, I again changed my diet and had the same symptoms. I assumed that it was just too much dairy, and I needed to be more careful about my diet.  But in the third or fourth week, I had the same symptoms when I hadn't had anything except my usual mug of tea. And it was followed by the same sequence of COVID symptoms that I'd had before. 

I was gradually getting stronger and better and more able to do things, so I thought maybe this was a sign that I had pushed myself too hard. I rested on Friday and started feeling a bit better. On Saturday, my chest was still tight, and the dog needed a walk. I thought that I would just take him outside so he could run around in the yard, and I could rest and (theoretically at least) not overdo it. I ended up spending 20 minutes playing chew-tug, and it was too much. On Sunday morning, I had a very bad crash, and it was like the whole progress of the disease started all over again from the beginning, only this time with diarrhea as my first symptom. Only this time, the acute stage only lasted a day and a half. The chest tightness and soreness showed up on the second day instead of in the second week.

This time I tried a new primary care physician to see if I could get tested and diagnosed. Someone at my husband's workplace had a cough and got tested for covid, so my husband and I were eligible to get tested. That would have been about five days after my big relapse hit. Of course, the test came back negative. 

They managed to fit me in for a telehealth appointment with the new primary care provider on the 17th of June, almost three weeks after the relapse. I tried to explain what had been happening and told them I suspected it was Covid.  I told them that I didn’t have a positive test and that I wasn’t getting better. I spent 20 minutes trying to list off my symptoms and explain what was going on. We got cut off for 10 minutes, and then she said, “it could be any of these things. Let's do blood work.” Everything except the ANA was normal, but the process of seeing the doctor and having the blood drawn triggered another relapse. I got a stabbing pain in my spleen and had an excruciatingly painful lump in my throat for about three hours. I had a pounding headache. I was a disaster for a day and a half as a result of that and I still had to push her to get a note for me to not work. That was the other thing. It was a telehealth appointment. So  Because the ANA came back positive, she felt that it explained my symptoms, and I didn’t need a follow-up appointment.  Instead, I had an appointment with a rheumatologist on July 8th. 

Her note only exempted me from work through June 26th, even though she had given me precisely no guidance about how to get better and knew that I wasn’t able to see the rheumatologist until July 8.  In retrospect, that’s when I should have realized that she didn’t believe that I wasn’t able to work.

When I finally had my rheumatologist appointment, she said, “I can't write you a note because we don't have a relationship yet. And if it's post-viral syndrome, you have to see your primary care doctor about that. I can only evaluate for lupus and rheumatoid arthritis,” which were the two things that the ANA came up with. She asked me all the lupus questions. And all my answers were “no” because I didn’t have any of those symptoms. I had 60 other symptoms, but I didn't have those.  At the time, my pinky finger joint was sore and inflamed because I rested my phone on it a lot when I was lying down (and I was doing a lot of lying down because I couldn’t stand for long and the tailbone pain meant I couldn’t sit). She said it might be rheumatoid arthritis and asked for more blood work and X-rays. My follow-up appointment on the 22nd indicated that there wasn’t anything serious enough for her to need to treat it.  I didn't have anything severe enough to warrant the fact that I am still only capable of doing about an hour a day worth of work. So I called my new primary care doctor back, and this time I scheduled an in-person appointment. I was hoping that physically being there so that she could see how much difficulty I was having with breathing,  and the moving around,  and the standing up, and all the rest of it and would help her understand why I needed the doctor's note. I wasn't able to be vertical enough to interact with my laptop for more than a couple of hours a day.  

Normally she is exactly the kind of doctor I would want. She's thorough, and she wants to be sure she's got the right diagnosis. So methodically works her way through all the different possibilities, one at a time. But the trouble is that I've been sick for four and a half months, and I have no sick leave left, and I can't borrow any more annual leave. And I can't get advanced sick leave or permission to take leave without pay without a note saying that I'm not going to be able to work full time for a while. Given that it's been five months, I would expect that writing a note that says “Signe is probably not going to be able to work full time for another month” would be a no-brainer, but she looked at me like I was crazy. So while I was waiting for the follow-up appointment with the rheumatologist, we tested everything.

Blood work for infectious diseases: Shocker - I don't have syphilis, I don't have HIV, and I don't have active cytomegalovirus or active Mono. I had a brain MRI. I don't have multiple sclerosis lesions. We reached the point where what's left is rheumatoid arthritis and depression or anxiety. That's it.  In her mind, COVID is out, so she doesn't have anything left but anxiety. 

The rheumatologist was the only one who has believed that I’ve had COVID, and she said that she couldn't help me. None of my other doctors, even the sympathetic ones, said, “You had COVID.”  They said, “ it sounds like you had a virus.” None of them have acknowledged that COVID is a possibility. My primary care doctor did an antibody test for COVID and it came back negative and so she is taking it as gospel that I haven't had it, even though the antibody test was taken on day 117. And by day 90, only 17% of people still have detectable antibodies.

I've been avoiding taking aspirin and Tylenol, even though they help.  When I take them, I feel better, and then I do too much, and then I crash, and it's bad. I managed to find a nice trajectory where I'm ramping up. I can work for two hours a day now. We had a research proposal due, and I had to work three and a half hours, and I was a disaster afterward. I had to go upstairs and eat dinner in bed and lie in bed for three hours before going to sleep because I couldn't function. I couldn't sit up. I couldn't move.  I was exhausted and a little emotionally fraught, but mainly physically exhausted.  I don't want to jeopardize my progress again because three or four weeks ago, I could only do half an hour, maybe an hour a day. So I don’t take things that make me feel better, and I’m careful about how much I do

Work

Friday, I finally felt a little hopeful because I submitted my advanced leave without pay paperwork. And my boss had said that he's happy to sign it without the doctor's note. I have an imaging document that says fatigue, chronic fatigue, and a history of viral illness on it. As far as he's concerned, that's enough. So I was relaxed because I got the paperwork signed. I have a plan, for now, assuming I can continue to increase my work hours by about a half-hour a day, every other week, and by November, I'll be back up to full time. And I was going to have enough cushion in there if I have one or maybe even two more relapses; I would have enough time if I needed it. 

And then this morning, I got an email saying that they can't approve the annual leave. They can't approve the form without the doctor's note.

So I feel like I'm in debtors' prison because I can't get approval to take the leave that I need to get well without taking actions that cause me to get sick because the diagnostic process causes me to get sick. Every time I get blood work done, every time I go to the doctor, it takes me a day to recuperate. They keep coming back with negative test results, so they can't get a diagnosis. They won't give me a doctor's note because they don't know how long I should expect to continue to be sick. And the threshold for it transitioning from post-viral fatigue syndrome into chronic fatigue syndrome, where I will likely be dealing with this for the rest of my life, is six months.

In some ways, that would be a relief because it would mean that I would have a diagnosis, and I would not be expected to be a hundred percent in the next year or two. People do get to the point where they recover, and they can have reasonably normal lives. They just have to be a little careful around the edges. But I feel  I have one month left to prove that all I need is an extended convalescence. I have no way of proving to anybody that's what I need, but if I could get an extended convalescence, if I could let my body take its own time to heal, maybe reaching full health would be possible. 

 It's frustrating because my bosses would be fine with me taking three months, working two hours a day, or even three months, not working at all. As long as I had a note saying that's what I needed. I do research. The work that I'm doing can wait another three months. It's not a crisis. 

I feel like our medical system has cut a deal with the employers, that their job is to be the gatekeeper for the employers and prevent people from malingering. Their job right now is not to identify and treat symptoms. Their job is to diagnose and treat underlying causes, which is fine if you know what the underlying cause is, but they don't know the underlying causes. And so they're trying to apply current diagnoses to this new thing, and it's not sitting in any of the normal buckets. And so the next call from the doctor is, well, we ran out of options, so I'm sending you to mental health. The mental health specialist is going to say, yeah, you're a little depressed because you're sick.  And that's not going to help me get this note. That is the thing that is standing between me and convalescence.

My other options are to just put down annual leave and sick leave and not get paid. And I don't have quite enough money to cover that gap. Now I am intensely privileged. I am smart,  have a good job, and accommodating bosses. I'm white. I didn't start with as much sick leave as I would normally like to start with because I started teleworking about a month before I got sick because of my tailbone.  And then COVID and the lockdown hit, and I just didn’t get better. But what's depressing me is the fact that I can't work, that my technical brain is not properly back, that I don't have the stamina to do the work that I enjoy because physically, every time, I try it just kicks me back. 

 I just want convalescence, and I can't figure out how to get it.

No one ever talks about the impact of false negatives. They talk about false positives all the time, but I've seen one, maybe two articles that explicitly said there are false negatives with this that are going to impact people's care and their ability to get the support they need. Lots of people are going to doctors with symptoms and are being told that they have depression or anxiety and they're not getting treatment for the symptoms. They're getting mental health care, but they're not getting treatment for the physical problems. That even if it is also triggering mental problems, the physical problems are still happening and still need treatment.  And the lack of diagnosis itself can cause more mental problems. There doesn't seem to be any recognition of the way the system is set up to only support people who can get an official diagnosis. You can't get a note because you can't get a diagnosis. The doctor isn't going to write your note without a diagnosis. Because if the doctor writes a note without a diagnosis, they could be subject to lawsuits by the employer saying, “You said this person was sick when they weren't”.

I can see where they're coming from. But in these particular circumstances, the CDC ought to be putting out guidance that says, “Post-COVID is a thing. There is evidence that post-COVID is a thing and here is the symptomatology. Here's how you diagnose post-COVID in the absence of positive tests. Here's the appropriate treatment.  Graded exercise therapy is bad because if you push people to their limits, they will crash. So you have to keep how much you're pushing them under what their current limits are.”

They're doing none of that. There's no recognition that maybe we need national medical guidance about some of these things, that it's not as simple as “did you die?” or “did you spend weeks in the hospital?”

And a lot of that is simply the direct result of following the instructions they gave us. They said, if you get sick, take care of yourself at home, only go to the hospital if it's a crisis; you don't want to get other people sick. You don't want to use up scarce medical resources. So you're sick, you're at home, and you have a temperature of 94.5 ℉ that you don't get seen for because you're supposed to be taking care of yourself at home. And then you have no documentation that you were sick. So you don't have anything that you can show your employer or your doctor to prove that you've been sick.

It feels like they think they don't have to treat the symptoms. They don't have to give you a note while you're sick because they can't give you a note until they know what it is.

Where I Am Now

I’m slowly getting better.  Laughing doesn't hurt anymore. All of the random stabbing pains in my chest and abdomen have gone away. Things are tight and tired and a little achy now. And I still can't wear a bra because costochondritis sits right at bra strap level. The doctors have said that if it hurts when you press on it, it's not your heart or lungs, and you don't need to freak out about that. But I've had moments where I’ve felt my heart going all over the place, and I don't know why.  I still get hot flashes when I'm having a relapse. The hot flashes are beyond strange and very intense. My heart is pounding. My skin is drenched in sweat. And I have to lie down. There’s no fever associated with it. It just feels like you have a fever for a minute or so. And then it goes away. And it's often localized in the head. I have no idea what's going on with it. It's bizarre. 

Someone recently posted the chronic fatigue syndrome fibromyalgia rating scale of fatigue. I'm currently between a 20 and a 30 on that. I leave the house to meander down to the mailbox and back once a day. And I gauge how good a day it is by how many times I can get to the mailbox and back. Right now, I'm at about two and a half. I'm not bedridden. I'm up and around. I can make myself lunch and breakfast and flavored water to drink. But I'm not leaving the house. I'm not able to work much. I'm not physically active.

I used to drink six to eight cups of fluid a day, and I was fine even in the summer. Now I have to drink a minimum of 10. If I'm going to be functional, I aim for about one cup for every hour that I’m awake, and that's good. And I don't feel sloshy or feel like I have to go to the bathroom all the time.

I have no idea what's going on other than it's profoundly unpleasant, and I can't wait for it to be over. And I suspect that the most effective treatment plan is not going to be pills. It's going to be convalescence, in the old-fashioned sense of “they send you to a place in the country without cell phone service and with no internet, just a hard line to the television for Netflix.” And your job is to sit around in lounge chairs on the deck,  in the common room, wherever, just resting, for three or four months.  And you gradually get better and hang out laundry, and you learn to milk the cow.  But the point is that what we need is not two months of diagnostic tests and stress and struggling to get a doctor's note. What we need is just to rest. If we could do that, we would get back to a hundred percent.

 I do feel myself getting better. It's just so much slower than anything else I've ever had to deal with. I had mono as a kid, and I was out of school for six weeks, and this is so much slower than that. I can do things that involve standing for short periods but if I try anything that involves bending over, I am just flat out.

Even though I have been sick for five months now, I can't get a note for a week off work. The system is fully and completely broken. The things that doctors focus on do not appear to include care for the patient. The focus is on evaluations of the patient, on a diagnosis of the patient. The doctors provide services for the patient, but even though the patient pays, the patient isn’t employing the doctor. The doctor’s employer is either the insurance company or the business that employs the patient. The doctor isn’t providing patient care to the patient. The doctor is providing patient management to the insurance company and the patient’s employer.If they were providing patient care, my doctor would have given me a fatigue survey and asked what my fatigue was on a scale of zero to 100. My doctor would have given me an energy envelope form to fill out, to find out my tolerance for standing, for driving, for exercise, for mental work, for social interaction. I've had to find that myself. Even though I've been sick for four and a half months, I have had to find that myself.

Update: I’m 15 months in, and my fatigue is mostly gone, but it didn’t even start to improve until well after that 6-month mark. I found a helpful doctor, I got my note, and I’m now up to 5.5 hours of telework a day. I’ve been approved for the maximum amount of leave available over the next year, and I’m hopeful that I will eventually return to full health, probably over the next year or two. But the system is still broken, and far too many people are still struggling with the impact of negative test results.