Pain and ME/CFS - When even rest is exhausting

"I'm tired" - this sentence is often used, but it is rarely meant in an existential sense. In ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), however, fatigue is not a vague mood disorder, but a debilitating, omnipresent condition. A condition that does not improve with sleep, but often worsens massively with minimal exertion.

A silent disease - with a loud body

According to estimates, ME/CFS affects over 300,000 people in Germany alone - the number of unreported cases is likely to be significantly higher. Many patients spend years searching for a diagnosis, are treated incorrectly or misinterpreted as psychosomatic. Yet the WHO is clear: ME/CFS is a neurological disease - with a sometimes dramatic course.

The focus is on post-exertional malaise (PEM) - a drastic deterioration after even minor exertion, be it physical, cognitive or emotional. A walk, a conversation, sometimes even physiotherapy treatment can be enough to trigger days of deterioration.

Pain is part of the syndrome

Pain is also part of the symptoms: muscle pain, neuropathic symptoms, headaches, joint pain - diffuse, wandering, difficult to grasp. Pain processing is often centrally sensitized. In addition, there are vegetative symptoms such as circulatory problems, irritable bowel syndrome, cardiac arrhythmia or temperature regulation disorders.

And then there is cognitive exhaustion, often referred to as "brain fog": Concentration, speech, reaction - everything becomes laborious.

Therapy - between sensitivity and respect

For us therapists, ME/CFS is a borderline case: traditional concepts such as activation, increasing the load or functional exercises do not work. They can even be harmful.

So what to do?

• Teaching pacing instead of prescribing training

• Offering security instead of setting goals

• Support regulation instead of demanding function

• Recognizing resources instead of fixing deficits

Breathing work, body awareness, vagus-friendly positioning, stimulus shielding, passive mobilization, energetically gentle impulses - all of these can help if used in an adapted and respectful way. Therapy should never be "too much". Not even emotionally. Not even verbally.

Therapeutic attitude: Being is working

ME/CFS not only requires us to have specialist knowledge, but above all an attitude:

• Patience instead of pressure to progress

• Trust instead of belief in feasibility

• Presence instead of actionism

We have to learn not to do too much - and to remain effective at it.

Conclusion:
ME/CFS requires a radical reversal of our therapeutic thinking. We do not accompany patients on the path to performance, but on the path to a stable balance within the limits of what is possible. Small steps. Big impact. And sometimes: just being there.

🧠 Want to delve deeper into the topic? Then join my webinar:
"Pain & ME/CFS - between exhaustion, overstimulation and therapeutic limits"

📅 Dates & registration as always at: www.hockenholz.com/webinare