Alex & Diana from Klurfeld Cares interview N.H. who had COVID-19, and she has Ehlers Danlos.
Diana Klurfeld: What was that like to go through Covid as someone with EDS?
NH: “It was miserable,” she said, “but not any worse than the flu.”
Klurfeld Cares wants to address the questions and concerns of what you can expect in this uncertain world with COVID-19 lurking around every corner, waiting to grab you and have its way with you. After all, we have a lowered immune system already with our Ehlers Danlos. Plus, how do we tell when we have it? We already have so many of the symptoms. Let’s talk about these concerns.
What Are the Symptoms of COVID-19?
Many people with Ehlers-Danlos Syndrome hate going anywhere—the physical therapist, the walk-in clinic, the neurologist, the rheumatologist, you name it. The specialists always the same questions. “Have you had any of the following symptoms in the last week? Muscles aches or pains?”
Yes. But EDS typically comes with acid reflux, and that causes nausea!
These are all some of the most common symptoms of COVID-19. A few of the others are:
- Loss of taste or smell
- Sore throat
The Ehlers Danlos Society Global Registry and Repository conducted a survey before the pandemic ever hit. According to this survey of 1,340 people, 98% of people with Ehlers-Danlos were affected by daily chronic fatigue and joint pain. Another 74% already had difficulty breathing due to their EDS.
NH went on to tell Alex and Diana Klurfeld that she was “lucky” enough to only get a low-grade fever, but that her temperature typically runs low. “At first, my cough wasn’t bad and was due to drainage,” she said. “I also got a minor sore throat, but that was only for a few days. If it hadn’t been that we were going to travel down to see my in-laws, who were in bad health, I would have never even thought to get tested. After all, my cough and sore throat were minor and fleeting. I thought they were allergy-related.
“I was so sure that I wasn’t infected that I paid the extra $75 for the rapid test so we could still go out of state to see them. However, I chose to be safe rather than sorry, and I’m glad I did.”
So… How do WE Know If We Have COVID-19?
Many have asked themselves this same question time and time again. After all, if you don’t have adequate insurance, testing can get expensive. And self-isolating because you think you might have it gets old when you typically have all the same symptoms all the time already.
The answer is, you’ll know. If NH had waited a few more days, she would have had a clear indication. She states that she started to feel quite rough. Her cough picked up. She got so exhausted that she couldn’t keep my eyes open, and she hurt much worse than usual. Walking to the bathroom became a chore from the fatigue and the muscle pain. “I felt like I had to drag myself there,” she said.
“What keeps going through my mind,” she said, “is what if I had gone to see my in-laws? What if I had drug this down to them?”
According to the CDC, you can be contagious 48 to 72 hours before you ever experience the first symptom!
All you can do is follow the CDC’s recommendations for preventing COVID-19. Those are to social distance, avoid crowded indoor spaces, avoid crowds (whether indoor or out), wear a mask, and frequently wash or sanitize.
How Will COVID-19 Affect Us?
Then there’s another question, how easily can we get COVID-19, and how bad can it affect us with our lowered immune system. This is a real question and one that weighs heavily on all of us.
The good news is that Ehlers-Danlos is not an autoimmune disease, so at least we don’t have that to worry about. The bad news is that, with our immune system being lower, we are more susceptible to catching it. However, it doesn’t seem to necessarily be affecting us any worse or for any longer than the general population.
COVID can start out pretty mild for a week or so, as NH did, and then really pick up steam. If your sickness is mild, you can easily treat it at home. However, if you begin to get worse rapidly, you should immediately contact your doctor.
Some of the emergency signs that everyone must watch out for in this case are:
- Trouble breathing
- New confusion
- Persistent chest pressure or pain
- Inability to stay awake or wake up
- Bluish pallor to the lips or face
If there are any other symptoms concerning you, by all means, call your doctor!
Those COVID-19 Will Affect More Severely
According to research gathered by Alex Klurfeld, there are some with Ehlers-Danlos that are considered at higher risk than the general population. Many people with EDS have co-existing conditions. Some of these health concerns make those affected at higher risk.
The specific areas of concern are those with pre-existing heart conditions, underlying lung conditions, severely reduced immunity, Dysautonomia, pregnancy, Kawasaki-like diseases, and those on non-steroidal anti-inflammatories and antibiotics for Bacterial Pneumonia. However, not many people with EDS will have these concerns.
What About POTS?
Some people get what is called “post-COVID POTS.” Several different things can trigger POTS. As more and more reports are coming in of people who have had mild COVID developing POTS, it appears that one of those new triggers may be COVID-19.
How Do I Know if My COVID-19 Caused POTS?
If you have Ehlers Danlos, it may be difficult to tell. Some of the symptoms of POTS are:
- Severe fatigue
- Memory problems
- Brain fog
- Chronic nausea or fatigue
- Spiking pulse
Yeah… Much of this is run of the mill for EDS, right? However, if your symptoms get worse than what’s typical for you, speak to your doctor immediately so he can rule it out and rule out other complications.
What If I Develop post-COVID POTS?
Right now, according to Diana Klurfeld, her volunteer group Klurfeld Cares hasn’t been able to uncover any evidence that there is a singular, specific method of treating post-COVID POTS-like symptoms. Yes, some people have the symptoms of POTS and aren’t necessarily tested for POTS itself. Instead, each person’s treatment is personalized to them.
If their doctor does confirm that they have POTS, they’ll typically start aggressive hydration, certain medications, and dietary modification. They’ll also begin physical therapy after a few months of treatment. Most patients aren’t ready for physical therapy right away.
What If I Already Had POTS?
COVID-19 is a viral infection. Any viral infection can temporarily worsen POTS symptoms, and recovery may be more difficult due to it. Because COVID-19 is a new disease, doctors don’t yet know the long-term effects of COVID-19 in POTS patients.
It’s vital to work closely with your doctor while you recover from COVID-19 if you contract it. Your medications may need to be adjusted, and you may need your diet adjusted for a time.
Are Those with POTS at Higher Risk with COVID-19?
It doesn’t seem that those with POTS are at any higher risk than everyone else. POTS affects the autonomic nervous system disorder and not the immune system. However, if POTS patients have the same co-existing conditions such as diabetes, high blood pressure, an autoimmune disease, or asthma, they may be in the high-risk category.
Although POTS doesn’t seem to make COVID-19 any worse for those who have it, it may delay the time it takes to recover from it. Those with POTS may experience post-infectious dizziness, fatigue, sleep problems, or headache, just like with any other viral illness. However, it is unknown if there are any other short- or long-term complications because the virus is so new.
What About Chronic Fatigue Syndrome?
Another one that makes the diagnosis of any illness difficult is Chronic Fatigue Syndrome. People with Chronic Fatigue Syndrome face the same difficulty that we with Ehlers Danlos do. Is my fatigue, sore throat, pain, headache, and dizziness due to my Chronic Fatigue Syndrome, or do I have COVID-19?
When COVID-19 Causes Chronic Fatigue Syndrome
Yes. You read that right. Several things can bring on Chronic Fatigue Syndrome. Viral infections are one of them. COVID-19 is one of those viral infections that have been a culprit.
How Do I Know If I Have Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome (CFS) is complicated. In a nutshell, it’s characterized by extreme, unexplainable fatigue that lasts at least six months, worsens with activity, and doesn’t improve with rest.
Other symptoms of CFS include:
- Difficulties with focus, memory, and concentration
- Sore throat
- Sleep that isn’t refreshing
- Dizziness worsens when you stand from a lying down or sitting position
- Enlarged lymph nodes in your armpits or neck
If these symptoms are new or worse for you, you should see your doctor. Persistent or excessive fatigue is typically a cause for concern and can be a symptom of several different illnesses that should be ruled out.
Ehlers-Danlos, POTS, and Chronic Fatigue Syndrome all make it complicated to know if you have COVID-19 or not. If you think you have any of these, and if you have not seen a doctor before, you should make an appointment. If you have EDS, POTS, or CFS and think you have COVID-19, don’t hesitate to get tested. And, please, take care of yourself. You are your own most precious resource!