· 

My story – in a nutshell

 

Dr. Martina Melzer, published: 22.01.2022

 

Early January 2009. I want to photograph again. In the mountains. Backpack with photo equipment is packed, I strap on the snowshoes, there is a good 1.50 meters of snow. I am tired. Maybe I slept badly. But it's only 200 meters in altitude. Shouldn't be a problem.

The climb is steep. My legs feel like lead. As if I was dragging a 10 kg concrete block behind me on each leg. I sweat terribly. I am totally exhausted. I feel sick. The tiny tour was a hell trip.

Back home I am lying flat. Fever, thick tonsils, sore throat, inflamed sinuses, strong headache. The doctor suspects tonsillitis and prescribes an antibiotic. It does not help. Instead, a devilish full-body rash. A colleague suspects mononucleosis. A blood test confirms the suspicion.

I lay flat for several weeks, can't stand any noise or light, can't leave the apartment. I feel like a zombie. After five weeks, I force myself to go back to work, even though my doctor warns me not to. But I'm afraid of losing my job.

This decision was a big mistake. Because I never recovered from this infection. I tortured myself into my full-time job for years, forcing myself to exercise. I had constant colds or other infections. In the winters about every 2 weeks. I was permanently terribly exhausted, had stomach problems, I was getting weaker and weaker. The more sports I did, the weaker I became.

a medical odyssey

Then began a medical odyssey. I visited general practitioners, specialists, private doctors, went to university hospitals, went to an Ayurvedic doctor. What was wrong with me? The doctors had no idea, me neither. One examination after the other followed, one blood test after the next. Much of it at my own expense. Since nothing was found, the conclusion was: "You have a depression", "You have a burnout", "You are healthy, we can't find anything (=it's all in your head)".

I was totally desperate and got more and more symptoms and syndromes. Irritable bowel syndrome, food intolerances, restless legs, nerve pain, muscle pain, in general pain of all kinds. My vision was blurry, my brain was foggy (brainfog), I was sweating and freezing at the same time, I had ice-cold hands and feet (Raynauld's disease), I got cardiac arrhythmias and constant problems with hypoglycemia. I could list about 38 more symptoms now. In short, I was a wreck.

In 2014, I heard about chronic fatigue syndrome for the first time. I read a colleague's article and thought to myself: Wow, that's exactly what I have. But all the doctors I asked were unfamiliar with it. Comments like "it doesn't exist", "only cancer patients have it", "it's a fashionable diagnosis" didn't exactly boost my self-confidence and that of the doctors.

11 years, 33 doctors

It took almost 11 years and - if I haven't lost count - 33 doctors until I was diagnosed with ME/CFS in Vienna. And for what felt like the first time in my life, I sat across from a doctor who understood me, explained the symptoms, took me seriously and suggested further examinations. I was so relieved. No, I'm not crazy. I really do have something. Then a few weeks later, it was pretty clear that I could add another syndrome to my list: POTS, which is Postural Orthostatic Tachycardia Syndrome.

It was 2019 and I was at the temporary low point of my condition. Even though standard blood tests showed nothing abnormal, my body was full of inflammation. I had given up sports, including walking, and working was only possible part-time, and only because my employer was as considerate as possible. There were days when I wanted to sneak around the house, but collapsed. I crawled on all fours through the living room, I fell asleep at the dining table in front of the soup, I was too weak to eat, I held on to the walls to avoid falling, I sometimes "walked" down the stairs sitting on my butt, showering was so exhausting that I had to lie down for an hour. This was no longer life.

The ME/CFS specialist told me there was not much you could do with this disease. Pacing was the key, nutritional supplements could be tried, a few medications were being tested. He was really sorry that he couldn't do more for me.

So pacing was my first salvation to slow down the steady deterioration of my condition. I became obsessed with the subject. Monitored my activities, my breaks, noted what I ate, wrote down my symptoms and their intensity. I have two full binders of logs here. Still, it took a year before I could do pacing to any degree. And I still crashed regularly. I continued to cut back on work hours, bought all sorts of vitamin pills for hundreds of euros. I continued to see doctors, and on the advice of one doctor, I was admitted to a kind of rehab hospital that supposedly knew about ME/CFS. However, that did the trick for me.

hope

At the same time, I started searching the internet like crazy. I also started my first Instagram account @mein_weg_cfs. By chance, I came across Raelan Agle, her book, and her then-small YouTube channel. She was fully recovered. In one video someone said, "Don't google ME/CFS, google ME/CFS recovery." I wouldn't have thought of that on my own. That's how I came up with Dan Neuffer from Australia, who had also recovered from ME/CFS and fibromyalgia. He runs the ANS Rewire program, which I participated in and which became the foundation for my recovery journey.

My condition improved for the first time in a decade. Thanks to what I had learned in Dan's program, watched on Raelan's channel, my own research, more classes, and thanks to Covid-19, because it allowed me to work 100 percent at my home office, which was my salvation from disability retirement. Also, I definitely didn't want to catch it, and I asked people for help for the first time.

In 2020, there was a second low point in my CFS career. First, a loved one died suddenly. A few weeks later, it turned out that another person had mistreated me  emotionally for many years. Both slowed me down, set me back, caused many small crashes. Now, in early 2022, things are finally becoming better. And by now, hopefully, I have found all the missing puzzle pieces of my story and can truly heal from the ground up. I have faith in it.  

Everything that has helped me so far, I want to share on the blog and under "Strategies".

 

Important: The content on this page is for informational purposes only and is not a substitute for talking to your doctor or other therapist. The content reflects my personal experiences, research and findings that have helped me and that I therefore want to share. However, in your personal case, completely different things may play a role and other things may help. Please talk to your doctor or therapist before making any decisions that affect your physical or mental health. Also important: I don't want to convince anyone of anything here. Rather, I want to point out possible ways that hopefully can help some people to improve or overcome their Fatigue or ME/CFS.


PS: Of course, I research and check everything I write here as well as possible. Nevertheless, I am only human and make mistakes. In addition, I may draw completely different conclusions as someone else would. Simply because they fit my story. But every story is different.