This story was told to CreakyJoints by Amy Siniscalchi, a 45-year-old social worker who lives in Westchester County, just north of New York City. Until recently, she was also an avid hiker, volleyball player, and someone who exercised six to seven days per week. She says her friends refer to her as the “health nut.” Her only underlying conditions were chronic migraine and an underactive thyroid that’s been successfully treated for more than 20 years.
In March 2020, she was exposed to two individuals with COVID-19. Shortly after, she started experiencing symptoms that seemed to become more serious by the day. What started as shortness of breath turned into burning sensations throughout her body, crushing fatigue, and much more. Nearly six months later, many of her symptoms have not receded.
Amy may be one of thousands of individuals who are considered COVID-19 “long-haulers” – those who contract the virus and experience symptoms for weeks, months, or maybe even longer. For Amy, it still impacts her everyday life.
This is her story.
A Cavalier Beginning
When the COVID-19 pandemic was starting, I can admit I was a bit cavalier.
I said to other people and myself: Let me just get this thing and get it over with. I’ll clear it fast because I’m healthy, and then maybe I’ll have immunity. I don’t think I wished it on myself, per se, but I would never think those things now because of the range of symptoms and the amount of time I’ve been suffering as a result of COVID-19.
For work, one of the programs I oversee is an emergency shelter for domestic violence and human trafficking victims. In March, we were one of the first shelters in New York State that had a COVID-19-positive resident. I was also exposed to another COVID-positive individual, a community partner who came to our office for a meeting in March. At that point, nobody was wearing masks. He was in a small conference room, and when he came out, we were cordial and talked in the hallway. Then, I went into the conference room and sat in the very seat he was in just a minute before.
Two weeks later, I started to have shortness of breath on March 25, but I didn’t think anything of it. Part of the interesting thing about my story is that I never tested positive for COVID-19. I got the nasal swab test on March 27, and I tested negative. What doctors have said since is that I very likely missed the window of when I would have tested positive for the active virus if I had contracted it earlier in the month.
Based on the symptoms that I developed, which at that point included really bad fatigue, a burning in my lungs, and losing my voice in addition to shortness of breath, my primary doctor said, “You have COVID-19, you need to act like you have COVID-19, and I don’t care what the test says. You need to quarantine.”
That was at the very end of March.
The Recovery That Never Came
After about 10 days I started to feel a little better, so I assumed the coronavirus was like a flu — you start to feel better, so that means you’re getting better. I started to exercise again, and then I relapsed. I went through these ebbs and flows where I started to get better, and then I would do too much physically. I would crash and the same symptoms would come back again.
Although I stayed home and quarantined, I didn’t really take much sick time in the early days because we were all working from home already.
But after the first major relapse, my symptoms were much worse than they were in the beginning. I would do a couple hours of work and then I would fall onto the couch. I couldn’t do anything. I couldn’t breathe and I would lose my voice. I ended up taking a two-week leave from work at the end of April.
I slowly started to feel like I was better again. I had a couple of weeks in the beginning of June where I felt like I was 100 percent recovered, almost completely back to myself. I was exercising, hiking, doing housework, and working from home. But in the middle of June, I crashed so hard — and I’m still in that relapse now.
The Mysterious and Persistent Symptoms
In addition to fatigue and shortness of breath, I started developed other symptoms. I had problems with my gait and I was having trouble with remembering the words I wanted to say — like a brain fog. I kept having this feeling as though someone was rubbing icy hot on my limbs; they felt cool to the touch but like on the inside they were burning.
I have a long sticky note in my notebook of the symptoms I’ve had since March. It includes:
- Shortness of breath: That comes and goes, but I still have it.
- Crushing fatigue: It’s not tiredness like you did a little too much. You can’t do anything when this fatigue comes.
- Burning in lungs: That went away after the first eight weeks.
- Icy/hot and burning sensation in limbs: That’s a very prominent symptom I still have.
- Brain fog: Using the wrong words, not being able to pull up a word, just generally having a hard time concentrating.
- Coordination: My coordination and my gait problems went away, so that’s better.
- Purple fingernails and toenails: In mid-June, I noticed that the skin under some of my fingernails was purple. I still have that, and it’s under my toenails, too. My dermatologist friend looked at the pictures and said, “Those are COVID toes.” I didn’t go to a dermatologist to get that confirmed.
- Peeling skin: Randomly I will wake up one morning and the skin on my hands will be peeling. Not dry skin, just peeling hands. Like a mystery, it goes away the next day. That has happened three to four times.
- Other sensations: Lately I have this symptom that I saw described online, and I always thought it was weird, but then I started having it. It’s this feeling like my blood is gurgling, almost like somebody opened a can of seltzer in my veins. It’s intermittent, but that’s been a symptom that started about two weeks ago.
A Slew of Many Doctors and Tests
Within a few weeks of the June relapse, I started researching and looking at articles. I got on all these online support groups for COVID-19 long-haulers. My big whirlwind diagnostic journey began. I just decided: I have to go see all the doctors and figure out what’s going on.
I wound up changing primary care doctors. Because I had gone through a lot of blood tests and chest X-rays and they all came back totally fine, my first primary doctor kept saying things to me like, “You’re perfectly healthy!” And I said to her: “Obviously I’m not healthy, something’s wrong.” But she refused to push any further.
By this point, I had gotten one nasal swab and one antibody test for COVID-19 (both negative), and then I went back and got another swab and another antibody test, and they both came back negative again. I’ve read about other long-haulers who can’t prove that they had COVID-19, and it’s reassuring and disheartening at the same time.
By now I’ve seen:
- Two different primary care doctors
- Two different neurologists
- A rheumatologist
- An infectious disease doctor
I have also been to the emergency room for really bad shortness of breath.
The tests I’ve had include:
- Bloodwork panels
- Rheumatology panels
- Infectious disease panels
- Complete blood count (multiple times)
- Chest X-ray
- CAT scan of the lungs
- Brain MRI
- Neck and spine MRI (twice)
- EMG nerve test
I did a mix of in-person and telehealth visits, which was really helpful because there were moments where driving wasn’t safe for me.
After all of these tests, the only thing that came back was a newly developed lesion on my brain, which wasn’t there when I had an MRI of the brain about a year ago. I subsequently found out from an infectious disease expert (but not the one I saw) that COVID-19 has been leaving brain lesions in some of its patients, specifically in the corpus callosum area of the brain, which is where my brain lesion was found.
All of these doctors that I started to see back in early July, when there wasn’t as much information about COVID long-haulers, told me, “It’s possible that you didn’t have COVID because you tested negative.”
And I said, “Right, it’s possible. That’s why I’m here.” I wanted to rule out all these other things.
Last week, the rheumatologist officially diagnosed me as having myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It’s essentially a rule-out diagnosis — it can be diagnosed once other health problems are ruled out — so there’s no test for it.
One of the main features of ME/CFS is called post-exertional malaise (PEM). Essentially, when you extend more physical or mental energy than you are able to, you crash. That is exactly what happens to me.
The Next Steps as a Long-Hauler
What people like me don’t know at this point is: Am I going to eventually clear these symptoms, or is this going to become a chronic medical condition?
The challenge I’m having now is that there is no real treatment for ME/CFS, although I have a massage therapist who was trained to treat chronic fatigue syndrome. The treatment is not like a traditional massage, but rather a very gentle lymphatic drainage series that she does with me weekly. I do it at home now, too. My main doctors — my primary doctor, neurologist, and rheumatologist — have all admitted they don’t know much about CFS or how to treat it.
I’m starting to develop anxiety, and I think low-grade depression. I don’t think that’s systemically caused by this, but may be a result of my whole world shrinking. I don’t see anybody anymore, and I’m normally an extrovert and an athlete. It’s been really hard.
Early on when I started to relapse, I decided I was going to be very open about what I was going through. My feeling was that the news and medical community were talking about the people who have been in critical condition or died from COVID-19, and the people who are at high risk of complications from it. But they haven’t been talking about thousands of previously healthy people like me who are suffering badly after having COVID or COVID-like symptoms.
This has probably been the hardest thing I’ve ever dealt with in my entire life, but I’m trying to make hay out of it by raising awareness.
The long-hauler community has been lifesaving. I’ve had a few nights during these relapses where I felt like I didn’t know if I was going to wake up in the morning. There were times where I thought, this is what it feels like right before you die.
The people in these long-hauler Facebook groups are just so affirming, loving, and supporting, and everybody is cheering each other on. There are also long-haulers who do seem to have recovered, and they stay in the groups and they share their stories and give the rest of us hope.
Today, I was crying to my husband because the thing I’m most concerned about is that I’m not going to recover. I had to take a leave of absence from work in mid-August. I was getting sicker and sicker the longer I worked. I love the work that I do, and the idea that I wouldn’t be able to work, exercise, go back to my volleyball team, or hike again crushes me mentally and emotionally.
To take care of myself, I’ve started very regularly meditating. I make sure that I rest, and I get a little bit of movement in just walking around the house, but I don’t push it. I signed up for online therapy last night, which I think will help.
Supporting Research to Make a Difference
I’ve also learned that legislation has been introduced in the U.S. House of Representatives to fund more research for post-viral ME/CFS that is related to COVID-19. I wrote to all my legislators asking them to sponsor the bill. I also shared about it on social media, and I’m asking everyone I know to write to their legislators to have it sponsored.
That’s what I find helps me feel like I can keep going. The one way I can take control of this is to act.
What You Can Do to Help: Become a Patient Advocate
You can reach out to your representatives to urge support for legislation that would increase research funding for certain conditions that are affecting COVID-19 long-haulers. Read more about the bill here.
For help contacting your representatives and to learn more about patient advocacy generally, join our 50-State Network.
The grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, it is comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
