Lets start with Chronic Fatigue Syndrome

In 2019, I found a decent job, I worked at a deli and I loved it, My co workers and boss were great and at this time I have been employed there for 3 years. Life was going as planned, until it didnt.

One day, I was at work and I was feeling extremely tired, like I did not get enough sleep or something, but I did not think anything of it. This continued for some time. One day I was home and I felt sick to my stomach, and when I was vomiting, I had these crushing thunderclap headaches. It was like nothing I ever felt, and I fell to the floor crying, just laying there crying. I did not connect the three yet. I called out of work almost every other day due to feeling sick like this. My body was aching, my eyes were burning, my spine was so painful.

I went back to work, and at the end of my shift, the last 30 minutes, I wasn't doing too well. My supervisor said I had a rash all over my chest, and I felt dizzy and sick again, like I was going to pass out. I went to the bathroom, and the same thing happened: vomiting with thunderclap headaches. I was crying and said enough is enough; this is weird and definitely not normal for me. I went to my head boss and asked if I could just skip out on the last 30 minutes and head to the hospital. That's when I don't remember much. I don't remember the ride home; I do remember going into the front door and falling to the floor. I was so weak and tired and in a lot of pain. My husband was confused, and I said I need you to take me to the ER now.

The ER

We get to the ER, and this particular emergency room is usually not busy, and they have you in and out within 90 minutes. But it was so busy that day, and I do not know why. So as I'm waiting, I'm getting new and concerning symptoms, like I'm slurring my words, so now I am thinking it could be a stroke. I let triage know, and they got me in right away.

The nurse comes in, checks my vitals, and leaves. Then, all of a sudden, a bunch of doctors and nurses charge into my room. At this time, my husband had to leave real quick, so I was alone and scared. I was like, "What is it?" I really didn't think it would be anything, and the doctor said, "I need to get you into CT now. Your blood pressure is 200/a number I can't remember." I was like, "200? That's not right; my blood pressure always runs low (this will make sense in the POTS post)."

After all the scans, all the emergency everything, they diagnosed me with high blood pressure and sent me home. I was like, "No, this isn't high blood pressure, I am having other issues, and my pressure is never this high," but nonetheless.

I went home had a doc note for work and what not but i still felt something was wrong.

Two days later, I went back to the ER with the same onset. This time, they sent me home saying I had Lyme disease. I thought they had already tested me for it, so I was glad to have an answer! However, I got a call saying I was negative for it, and that's when I learned they never tested me and just assumed. That's cool. So, I am back to square one.

Answers

I had enough with the back and forth hospital visits. I have been out of work since. I knew something was wrong; my body felt sick, not me, my body did. Like an autoimmune issue or something. I am someone who never sees my doctor, maybe once a year if even that, so doing all this medical stuff is kind of weird for me. I made an appointment with my primary care physician.

I had to see eight different doctors at the practice before I would even get an answer. Most answers were "stress," "your weight," "breast cancer" because my mom was diagnosed that month with it, "mystery illness." That's my favorite, mystery illness, their way of saying, we have no idea what you have, but you have something. All my blood work and other tests were coming back normal. I begged them to please test me for every single thing you can test me for, and at that practice, they could only test me for 20 autoimmune-related illnesses. And they did, over and over and over again, and everything was fine, other than my red blood cells being a little more than my white.

The real answer

I can't tell you how frustrating it is to know you have something, to suffer every day, and to see a clean blood workup. You pray something comes back so we can start going to the next step. I was about to leave in total loss when I realized there was one doctor I had yet to see, Dr. Stiffered. He is about my age, totally cool, and my actual assigned primary, so I asked to see him. I came back the next day. He came in the room and asked me what's going on. "There's something wrong. I've been to the ER and here many times. I have had all the tests and scans done, and everything is normal. I am feeling sick but not like sick sick, like my body is sick. I am tired, like my eyes are burning tired, my body is achy and heavy, I'm getting migraines, and thunderclap headaches." Then he was like, "Okay, hold on, let me go through everything. You just needed one doctor to look at everything and try to fix this, and I promise you I will give you an answer. It may not be today, but I will." It took him about 20 minutes, then he asked me the most important question of my life: "Do you feel flu symptoms after doing any sort of physical activity?" and I thought about it and said, "Actually, yes, I do. My throat hurts all the time when that happens, and I get bedridden," which is why I called out of work so much. He looked me dead in the eye and said, "You have Chronic Fatigue Syndrome." At first, I was totally taken aback; I was actually insulted. "It's not just fatigue; the worst is the pain." He says, "Yes, that's all part of it." He then goes on to describe everything about this condition I had never heard of.

Next steps

I then asked, "Okay, so what is the treatment?" His face kind of looked sour, and he said, "There is no treatment and there is no cure." I was like, what? No way, everything has treatments... don't they? I looked at him and said, "Okay then, what exactly is the prognosis of this thing?" He gently looked at me and said studies show people who have cancer have a better life outcome than those with this. But because it's so highly dismissed, nothing is getting done about it. After he said that, things kind of faded out. I kind of remember him saying we have to treat each issue separately, so he was going to put me on some antidepressants known to kill pain and start there. I didn't care anymore; I just wanted out. I left, checked out, and made a new appointment. At that time, I looked at their TV, and playing on the news was how COVID was all over China and coming into the US. I should have paid better attention.

Covid ruined everything

So the doctor indefinitely took me out of work. And New York State announced it was shutting down due to the virus, stating schools will now be closed and only essential workers will be working, but my doctor's office was closed and could only respond through calls. This was a very scary time for me; I was just diagnosed with a disease I had never heard of, that has no treatment and a bad prognosis. I had questions and lots of them.

Social media did its thing

I went to Facebook and looked up CFS, and found some CFS support groups and joined all of them. Let me tell you how these people helped me when doctors could not. With this new scary illness going around, I had no idea how my body would react if I got it, so I stayed inside. These other patients taught me a lot about it and how to help.

So eventually my body was under a bit more control. I am still not working a normal job, and I have been dealing with these debilitating symptoms since 2019 and it's now 2025. It's a huge change and a really hard thing to get used to. I get depressed sometimes about it, grieving the life I used to have and the life I'll never have again. Since then, I have a new primary doctor due to my previous doctor moving on. I am on better pain management, and the ADHD meds help with fatigue, but that's about all I am treating with this.

It's a lot about finding your body's limits and paying attention to them; that was my hardest takeaway from this. You need to work around the illness.