A CFS Story, Part II

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This post is a personal story for ME Awareness Week.

I am entering my second decade with ME/CFS. The first decade consisted of numerous doctor’s visits, medical dismissal, and a diagnosis for which no treatment was offered. The first 10 also consisted of some of my worst symptoms to date. This included crippling fatigue with menial tasks like showering, brutal insomnia, flu-like symptoms with exertion, and dizzying brain fog. The post-exertional malaise was less apparent then, because my symptoms were severe ALL of the time.

Back then, I wouldn’t have predicted how different the second decade would be. I finally received specialist care. I received treatment targeted to my specific symptoms. I learned there were treatable aspects of ME/CFS, once one stopped staring blankly at this “mystery” condition, but instead looked at the gut, the endocrine system, the whole person—me. Not so mysterious.

What worked best in my 20’s

  • Proper and thorough investigation of the whole person

  • Personalized treatment that addressed modifiable factors of my ME/CFS (gut, thyroid, immune system)

You can read more about my initial treatment in another post.

I grossly underestimated how different ME/CFS would feel at age 30, than at age 20. My symptoms have shifted now that I’m well into my 30’s. My fatigue is more subtle, and too the brain fog. My post-exertional malaise is now dominated with widespread pain and days long lactic acid ache. The flu-like symptoms are replaced simply with mild malaise. Then there are many days I have no symptoms whatsoever.

What changed? Simply put, better control. I no longer talk about relapse. I have mostly good days, and the occasional bad day that can be mitigated with strategies I’ve found to work well for me.

What works best in my 30’s

  • A nutrient-dense diet that is low in carbohydrates

  • Periods of fasting to boost blood ketones and NAD+

  • When not fasting, early time restricted feeding

  • Low dose naltrexone (4.5mg) as needed to treat PEM or reduce it in anticipation of the coming day

  • Mitochondrial nutrients (ATP Fuel)

  • Anti-inflammatory nutrients (curcumin, resveratrol, etc)

  • Multi-vitamin/multi-mineral

With better control, I’m able to enjoy my life now as an ex-pat. In Bavaria, I enjoy the ease of travel. I hike beginner courses. Here in my Munich suburb, I bike to get anywhere I need to go. I’m not able to exercise like before, but I do body weight exercise without PEM or POTS.

I sleep better. I exert myself mentally and physically more than ever before. That includes academic studies, a work-from-home job, consulting with people like you, and all the content required for this site.

Who knows what the next decade will bring. I’m confident however that new research will spur even new strategies to target the main tenets of this condition.

How has your ME/CFS changed with age?

Dr. Craigpersonal