My journey to get the ME/CFS diagnosis

I wrote back in June that I was in the process of being diagnosed with ME/CFS, which has now actually come true. ME/CFS is not only a word that is difficult to grasp, the abbreviation means: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. But the disease is equally difficult to grasp.

What is ME/CFS anyway?

ME/CFS is a severe neuroimmunological disease. Not psychological, not psychosomatic, but since 1969 officially classified by the WHO as a neurological disease. ME/CFS can be a consequence of Covid, even if the infection itself was not severe. This is often referred to as Long Covid.

ME/CFS is often triggered by viruses, and the Epstein-Barr virus is particularly often involved. Still, even the trigger is something that, like so much else in this disease, remains to be researched.

Symptoms of ME/CFS

One of the main symptoms is severe fatigue, or physical weakness. This has nothing to do with not sleeping enough or not exercising enough, but with not being able to do many things. In addition, there are a lot of different symptoms:

• Brain fog, I feel like thick clouds in and around my head, which makes thinking extremely difficult.
• Concentration problems
• Forgetfulness
• Word finding problems
• Pain in different parts of the body
• Heart palpitations
• Dizziness
• Nausea
• Trembling
• And much more!
  

Post-Exertional Malaise (PEM)

Post-exertional malaise, or PEM, is one of the leading symptoms of ME/CFS. This refers to a worsening of symptoms from even minor physical or mental exertion. One feels as if one has the flu. In severely affected patients, which fortunately I am not one of at the moment, even brushing your teeth or taking a shower can lead to bed rest for days. Some sufferers even go days between exertion and collapse.

It happened to me several times that I got so sick that I had to throw up! Before the suspicion arose, I was afraid that I could not tolerate something again, but I could not find out what it could have been. After the diagnosis, I realized that I react to exertion with nausea – usually hours later or the next day, which is typical of PEM. But of course, after overexertion – on some days a small purchase is enough – I react with exhaustion as well.

My path to diagnosis

How did I get the idea that I could have ME/CFS? I have been struggling with my health since my difficult pregnancy with hyperemesis gravidarum, which caused me to vomit up to 10 times a day until I gave birth to my son in 2010. In 2013, I was diagnosed with celiac disease, and we thought that was the cause of my weakness. But even after strictly switching to a gluten-free diet, it only improved a little. Then came the suspicion of endometriosis. I changed my diet to avoid sugar and started taking green tea capsules without caffeine because I have Hashimoto’s. Caffeine makes me feel anxious due to the L-Thyroxine. All this helped with the endometriosis pain, but not the exhaustion.

The radio story

In March and April 2022, two nasty cold viruses had hit me right away, and after that I was definitely down. And I just didn’t understand what was going on! My husband heard a radio program where the interviewee, who was talking about a completely different topic, said she was doing the interview from bed because she was too weak due to ME/CFS. He came rushing right down the stairs shouting, “Honey, I know what’s wrong with you!

Check-ups

So I started reading about what to do. I went to our family doctor, who fortunately believed me and took me seriously. He checked me for everything, thyroid levels, inflammation levels, heart, diabetes, and on and on. My pulmonary doctor said my asthma levels were very good and also gave me a mobile sleep lab, which like everything else was also unremarkable.

“Then that will probably be it”

Those were finally the words of my family doctor in September. When I left the doctor’s office, I felt many things at once. Relieved that the doctor continued to take me seriously. Happy that there was nothing else. Shaken because it was now official.

The next few days were a huge mix of emotions. It took me a little while to understand that the fight for the diagnosis was over. At the same time, it was still horror that it was actually ME/CFS – even though I had been dealing with it for a while. Only slowly did the realization set in for me that it was now “just” a matter of me getting well again as much as possible.

Getting healthy

With Hashimoto’s, asthma, endometriosis and celiac disease, I can of course never become 100% healthy again in a conventional sense. But I know that I can become as healthy as possible! And that is my goal now, and I will report about it in the future here in my blog. Because I hope to help others with it and to give them courage to not give up!