ME/CFS: Kathrin's road to recovery

 

Dr. Martina Melzer, published: 28.05.2022

 

Deutsche Version

 

Kathrin Frischmann lives in Tyrol in Austria and is a social worker, psychological counselor, creative trainer and psychoneuroimmunology trainer. She classifies herself as 80 to 90 percent recovered. She has been feeling really good for a few months and has even been symptom-free for a few weeks. She thinks, however, that there will certainly be another crash, which is why she does not yet want to classify herself as 100 percent well. Everything is still so fresh. I can understand that very well. Here she tells me what all has helped her on her journey to recovery from ME/CFS.

Dr. Martina Melzer: Hello Kathrin, thank you so much for taking the time to talk to me. I am already very excited!

Kathrin Frischmann: You're very welcome. I feel honored.

What triggered your ME/CFS? Often there is a certain event, for example an infection, or a stressful period in life.

It started about four and a half years ago. My son was nine months old at the time, and I had an infection or the feeling of getting the flu about every two weeks. That went on for half a year. I went back to work anyway, to an intense job as a social worker. But that didn't go well. I then went to doctors, EBV reactivation was diagnosed, Lyme disease, I also got a vaccination. Because of the birth, maybe hormones played a role as well. So I think it was less of a single event, but more the coming together of all these factors.

That sounds intense.

Yeah, I was like in fight mode. I was dragging myself into work, taking care of my son, and otherwise just needing to rest. I was continuously getting worse.

When you look back now: Did you possibly have a lifestyle, certain personality traits, or were there events that may have made you more susceptible to ME/CFS?I am in no way suggesting that you may be "to blame" for your disease. Rather, I hear and read so often that a person's history, their life, can increase their susceptibility to Disease A or B.

Yes, definitely there was that. It was actually obvious that I was going to get something like that at some point. Do you know the book Decode Your Fatigue by Alex Howard (yes, I know it)? He describes certain personality traits. For example, I was very ambitious, could never rest, always went to work sick. That was not good.

When I had to list all my symptoms for the application for severe disability, I came up with about 48. What were your main complaints?

What was bad was this constant feeling of being sick, that was my No.1 "hate symptom." And Post Exertional Malaise (PEM), this deterioration of condition. I had a lot of pain, in my jaw, ears, neck, spine. And I had a pronounced muscle weakness. I was so weak at times that I had to dress my son sitting on the floor because I just couldn't get on my feet. Night sweats were a problem. I sometimes had to change t-shirts twice and felt like I was being run over in the morning.

I get goosebumps when you tell me that. I know exactly what you mean. How did the PEM affect you?

It was an extreme feeling of sickness, I was extremely weak, always had to lie down. I once had to lie down on the floor in the bathroom because nothing worked anymore.

 

You can watch a summary of this interview on my YouTube-channel. The language is German, but you can select another language when you go to the settings button, activate subtitle, go back to it and choose your language (where it works):

 

 

Or you can listen to the summary on Spotify and Anchor (in German!):

 

How long did it take for you to get the diagnosis?

I ran from doctor to doctor for about two and a half years, nobody knew what I had, I was desperate. What was wrong with me? Then I went to the University of Innsbruck. The doctors diagnosed a fatigue syndrome. However, they disagreed whether it was very long postviral fatigue or "already" ME/CFS. From the point of view of the infectiologist and the neurologist in Innsbruck, it was clearly ME/CFS. The ME/CFS specialist in Vienna said that although I would meet the diagnostic criteria for ME/CFS, he would rather classify me in the area of postviral fatigue, since the EBV virus was quite clearly shown to be a triggering factor in my case.

Was that a relief or more of a shock for you?

I was shocked. It was the low point, so to speak.

Why?

Well, I had already googled ME/CFS beforehand. It said: not curable, no therapies, maybe you will become a nursing case. That was really bad for me.

I can understand that very well. How long did you have the disease, how severely were you affected and did you have any of the typical concomitant diseases such as POTS or fibromyalgia?

A total of four and a half years I would say. I think I was moderately affected. Still able to get around my home and take my son to kindergarten, but largely housebound. I also had POTS.

Were you still able to work?

At some point, no longer. In Austria, it's possible to take what's called educational leave. That suspends you from work for a year to do an education. During that time, I studied creative training and psychoneuroimmunology. That could be done largely online from home. After that, I didn't go back to my old job. There was one day, my birthday, when all I did was cry. I decided: I was going to get 100 percent better. I was living off my savings, and my husband and parents were very supportive.

ME/CFS is considered a chronic, non-curable disease for which there are no approved therapies. How did you get involved in recovery?

I found Raelan Agle on YouTube and watched all the recovery stories on her channel! She also has a great Facebook group. That was my turning point. And I bought a lot of books, for example, Dr. Sarah Myhill's.

Raelan Agle is awesome (we both get goosebumps and drift off for a second). What happened next? What did you do, what helped you?

I did a lot, really a lot. Totally helpful was the program ANS Rewire by Dan Neuffer. It's very comprehensive, contains about 40 videos, imparts a tremendous amount of knowledge. So I understood what I have and also lost the fear of the crashes. I knew it would get better, it wouldn't stay that way. That was very relieving psychologically. I was just a little sloppy with the brain training I have to admit.

Then I found Liz Carlson and her site Heal with Liz (I'm screaming out, yes, I love that one too). She raved so much about the DNRS program, that's where I did it. There you had to commit to doing the Brain Training every day. It was a lot about visualization, nice memories from the past, how to imagine the future, etc. It changed a lot in me. My husband said, "Since you started doing your exercises, things are looking up."

Wow, that sounds great. I also did ANS Rewire, really a great program. What else has helped you?

My Lyme disease was treated. I found a great doctor with whom I addressed EBV reactivation. Pacing was totally important and insanely helpful. That's when I took a class with Pamela Rose. She had a lot of tips on how to avoid a crash. Liz Carlson talked in a recovery interview with Raelan Agle about the recovery mode you need to get into. So get out of stress mode, into recovery mode. I took that to heart. Meditated a lot, did vagus exercises, breathing exercises according to Wim Hof, Restorative Yoga, one long and many small relaxation exercises daily, paid attention to my posture, at least eight hours of sleep. I took my tiny walks at a snail's pace and as relaxed as possible. I had learned that from Dan Neuffer.

Routines were very important to me. For example, getting some daylight in the morning, oil pulling, tongue scraping, doing lymphatic massage according to Dr. Perry. A few supplements helped me, such as Gingko for my brainfog. I did osteopathy, saw a breathing therapist, a physical therapist who teaches Somatic Experiencing. I had to de-stress my whole life.

It's really very comprehensive and a lot of it sounds familiar. Has your training as a creative trainer and psychoneuroimmunology trainer influenced your recovery journey?

Yes, totally. The creative training was a lot about self-awareness, setting boundaries, being able to say no sometimes. I started painting so-called expressive pictures. In psychoneuroimmunology, you learn how the psyche, nervous system and immune system interact. That it's all one unit and influences each other. That has helped me a lot.

In my recovery journey, repressed emotions play a big role, and how you learn to deal with them. Was that possibly the case for you as well?

I was already very angry inside that I was so sick, at myself for going over my limits too often. I learned to express the anger and just let it be there. Journaling was also very important to me in the process. Emotions have a purpose and you should pay attention to them.

I see it that way too. How did you actually manage to pace and get better despite having a child?

To be honest, my son was a great support for me. He built me up, gave me inner strength. My husband and my parents also supported me a lot. I am infinitely grateful for that. What I could not do physically, my husband took over. If I had a crash, my parents or my husband took care of my son. If he was in kindergarten, I used the time for rest and for my healing strategies. I always told him that his mum had a little less energy than others, but didn't talk about illness. However, I had a terrible guilty conscience, felt like a bad mother. I had to deal with the bad conscience intensively.

Kathrin Frischmann has written an extensive article about this (in German): https://www.wieder-aufladen.at/newBlogPost-zKFY6c

On your website you offer coaching and the so-called Recharge Program. Would you like to say something about it?

Yes, with pleasure. For the Recharge Program, I have combined my insights from creative training and psychoneuroimmunology, and what else I have learned. It's a self-help course consisting of about 30 videos, for example, on pacing, stress management, social law, dealing with work and education, parenting, etc. The goal is to have a daily plan, what can I do to get out of it?

Anyone who books coaching with me automatically gets the Recharge program included. However, it takes a doctor's recommendation to book me.

It's certainly all been a lot of work and I think it's great that you now want to help other people with ME/CFS or Long Covid. Do you have any final message for sufferers?

Never give up hope that things will get better! Watch recovery videos!

Dear Kathrin, thank you very much for the interview.

 

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.

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. That also applies to Kathrin Frischmann in this interview.