My Recovery Story

Dr. Martina Melzer, published: 08/28/2023

After almost 15 years with ME/CFS and other syndromes, and almost 5 years of recovery journey, I can call myself mostly recovered! Hooray! Who would have thought!!!

What helped me get to the point of being mostly recovered? Basically, it was 3 things: I had to work through my past, get my autonomic nervous system out of survival mode, and change the things in my life that I needed to change.

But back to the beginning. How did it all start? It was early January 2009, I remember that day well. I was with my partner in the Lechtal Alps, we wanted to take pictures on the mountains. There was a lot of snow, wonderful weather. I strapped the snowshoes to my feet and the heavy backpack with photo equipment on my back. I was tired, the climb was steep, my legs felt like lead. As if I was dragging a 10 kg concrete block behind me on each leg. I was sweating terribly. I was totally exhausted. Felt sick. The small tour became a Mount Everest climb.

Back home I lay in bed with fever, thick tonsils, sore throat, inflamed sinuses and a bad headache. The doctor guessed tonsillitis and prescribed an antibiotic. It didn't help. Instead, I got a full-body rash that itched terribly. Another doctor suspected mononucleosis. A blood test confirmed the suspicion.

For several weeks I basically just lay in bed, couldn't stand any noise or light, and could only leave the apartment with extreme exertion. After that, I immediately started working again, although my family doctor warned me against it. I was so afraid of losing my job. This decision was a big mistake. Because I simply did not recover from that infection. I struggled for years at my full-time job, forcing myself to exercise. I constantly had colds or other infections. I was permanently terribly fatigued, had gut problems, became weaker and weaker. The more sports I wanted to do, the weaker I became.

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An odyssey of doctors began. 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, food intolerances, leaky gut, restless legs, chronic sinusitis, fibromyalgia-like nerve pain, muscle pain, headaches, 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 blue or whitish hands and feet (Raynauld's disease), I got cardiac arrhythmias, I slept totally badly, and I had constant problems with hypoglycemia. I got terrible rashes on my arms and legs that itched terribly. 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: that's exactly what I have. But all the doctors I asked were unfamiliar with it. Comments like "There's no such thing," "Only cancer patients have that," "That's a fashionable diagnosis" didn't exactly boost my self-confidence and that of the doctors.

It was to take almost 11 years and - if I haven't lost count - 33 doctors before 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 wasn't crazy. I really had something. Then, a few weeks later, it was pretty clear that I could add another syndrome to my list: POTS, or Postural Orthostatic Tachycardia Syndrome.

It was 2019 and I was at the lowest point of my illness for the time being. Even though the standard blood tests showed nothing abnormal, my body was full of inflammation. I had given up sports, including walking, and I was only able to work part-time because my employer was as considerate as possible. There were days when I wanted to walk 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 crawled up and down the stairs sitting or on all fours, 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, and it was not curable. Pacing was the key, supplements could be tried, and a few medications were being tested. He was really sorry that he could not do more for me.

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 had two full binders of logs! Still, it took a year before I could pacing to any degree. And I still crashed regularly. I continued to cut back on work hours, spent hundreds of euros for all kinds of vitamin pills, which didn´t help. What helped my gut were dietary changes.

I continued to see doctors, and on the advice of a doctor I was admitted to a rehabilitation hospital that was supposedly familiar with ME/CFS. Unfortunately, they focused on activation, I was given a full-day program and collapsed. The head doctor said, "I don't believe you can't go on the bike ergometer for 15 minutes." And, "The treatment didn't help you because you didn't take our highly effective homeopathics." I even let them talk me into a heat application, which then finally put my system into emergency mode. My partner says, "That was your worst time."

But I didn´t give up. Not giving up became my motto. Another motto became: Recovery is possible. I will get well. Somehow. By a happy inspiration, I loaded Instagram on my phone and opened an account. So all of a sudden I found more and more people who were recovered. The first was Raelan Agle, with her then-brand-new YouTube channel, where she has now posted well over 100 recovery stories (as of August 2023). In one video, someone said, "Don't google ME/CFS, google ME/CFS recovery." I wouldn't have thought of that on my own. Then I came across Liz Carlson with her great blog, Heal with Liz. I read every article she wrote. Then I found Dan Neuffer, who had also recovered from ME/CFS and fibromyalgia. He runs the ANS Rewire program, which I attended and which would become the foundation of my recovery journey after Pacing. My condition was improving for the first time in a decade.

By now it was 2020, and the Covid 19 pandemic was starting. I was able to work 100 percent out of my home office, which was my salvation. It allowed me to alternate working and resting. I continued to cut back hours. I was hopeful. It was uphill, very slowly, but it was somewhat uphill. I did more classes and programs to deepen my knowledge of the autonomic nervous system and things like neuroplasticity and brain training.

In 2021, there was a second low point, a profound one. First, a loved one died suddenly and tragically. A few weeks later it turned out that not only chronic stress, but also traumatic experiences, adverse childhood experiences and the issue narcissism had made me so ill. And, that I not only had ME/CFS, POTS, IBS, and probably fibromyalgia (I certainly had something like that, but refrained from further marathons with doctors), but also complex post-traumatic stress disorder (cPTSD). This set me back significantly at first, causing many crashes and new symptoms. I got horrible nightmares, flashbacks, my hair fell out, my monthly cycle went crazy, I had panic attacks, abdominal cramps, hypervigilance, nightly food cravings and more. It became also clear that I am a highly sensitive person.

This worst time of my life so far was nevertheless the turning point in my recovery journey. Now I knew why I had so many syndromes. It wasn't the virus, it was decades of stress, starting in childhood (as for so many people). Other traumatic experiences, such as a life-threatening horseback riding accident, were added to the mix. The Epstein-Barr virus just broke the camel's back. It was clear to me: all my syndromes are connected, are one and the same, have the same causes and disease mechanisms. Later, I also found the overarching name for it: I had several forms of mind-body syndrome, a disorder, a malfunction of body, mind and brain.

But I now also knew what I had to do to get better: Work through my past, set boundaries for other people and myself, change a relationship that was unhealthy for me, change behaviors, change my lifestyle, identify stressors, question beliefs, access suppressed emotions, allow them to come out and let them go, recognize inner conflicts, face my triggers and fears, get my brain and autonomic nervous system out of survival mode, get clear about who I am and who I want to be, what life I have and what life I want to have. So it took a lot of inner work. And I dove deeply into topics like mind-body medicine, trauma, stress an polyvagal theory.

This process has taken over two years and is not over yet. I have really fought, yes fought, through these issues every single day alone or with the support of a psychotherapist and other therapists. Every single day. I often heard in recovery stories and in Dan's program to stop fighting and to come into acceptance, acceptance to stimulate self-healing. My path was not that. I had to really fight my way out of a lot of things that were making me sick and keeping me sick. It was the fight of my life. That took an awful lot of strength and was ultimately only possible through long-term sick leave.

Two years after the terrible event in 2021, I came to a point where I felt: I have the worst behind me. I've dealt with the big issues of my life. I've made it through. A few weeks of deep exhaustion followed, but it was different from ME/CFS fatigue. My body recovered from fighting, I felt relieved, grateful, proud. My goodness, what I had put behind me. I could finally take my eyes off the past and look forward. I now had the inner strength necessary to change more things. I began to face my biggest triggers and fears, to draw more boundaries, to quit my job of many years.

One trigger was so massive that I had the worst flashback yet. I used all the techniques I knew. And there were many - physical and mental ones. But nothing helped. Nothing got me out of survival mode. I was in despair. Then a therapist treated the old scar I had from my riding accident. It was a tip from my breath coach to do that. Even on the drive home, I noticed something was going on inside me. Back home, I spontaneously remembered special physical exercises I had already tried in 2022: Trauma and Tension Releasing Exercises (TRE), also called: neurogenic tremor.

I sat down on the couch and just waited, desperate, strained from the scar treatment. Suddenly my body began to move, I shook, made the wildest movements. It didn't take any more exercises to get my brain, my nervous system, my body moving. It did it all by itself. Three weeks later, I knew: I was mostly healthy. My body had shaken itself out of the freeze-and-shutdown mode of the nervous system. Suddenly I had so much energy, I wanted to run, my body was flooded with happy hormones, from week to week one symptom after another disappeared. And finally all my brain training methods were working! And the physical therapy kicked in! And I started building muscle and conditioning! And I could laugh again, take little trips, live! My goodness. Unbelievable.

I can't say if the scar treatment was the reason or the trigger, or if it was all coincidence. In any case, the evening after the treatment, when I no longer knew how to get out of the flashback, finally brought the turn. Since then, things have been going uphill fast. I'm still very weak physically, so that takes time. My nervous system still needs to settle better, that also takes time. I still have two symptoms, but they are also getting better.

That's why the journey continues. And that's why I don't call myself fully recovered, but mostly. I continue to recover. Recovery is a process. Changing yourself and your life is a process. Balancing the brain and nervous system is a process. Managing stress better is a process. Ultimately, all of life is a process, isn't it? And some inner wounds probably take a lifetime to heal.

Translated with the help of DeepL

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. However, in your personal case, 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.