Dr. Martina Melzer, published: 10/23/2022
Over 50 percent of people with ME/CFS also have fibromyalgia, according to studies. That's quite a lot. Where does this strong overlap come from? Even in the symptoms? Could both diseases be the same thing or have the same causes?
The most characteristic symptoms of ME/CFS are: marked fatigue, condition worsening after too much physical, emotional or mental activity, sleep disturbances, cognitive impairment, circulatory problems. The main symptoms of fibromyalgia syndrome are: chronic pain in multiple areas of the body, sleep problems, physical and mental fatigue, cognitive impairment.
Researchers are naturally looking for the distinguishing features to better differentiate the two syndromes. For example, the most specific symptom of ME/CFS is condition worsening after activity, post exertional malaise. In fibromyalgia, it's pain in multiple areas of the body. And yet, there are also enough similarities to be found.
The autonomic nervous system
What if both syndromes have the same origin and are thus at least related? Maybe it is even the same illness, just in a different manifestation? In both syndromes, there is sufficient evidence that a dysregulation of the autonomic nervous system (ANS) plays a central role. Since the nerve fibers of this system stretch out their feelers everywhere in the body and help control every organ function, it stands to reason that a wide variety of complaints can result. The autonomic nervous system essentially serves to prepare us for fight or flight in the face of danger and then send us back into rest mode where we rest, digest, etc. It is essential for a healthy balance in our bodies.
Danger signal in the brain
Whether we are in danger or not is decided by certain areas in our brain. They then regulate the ANS up or down accordingly. If stimuli that the brain evaluates as
danger constantly flow in, this regulation gets out of balance. We are constantly in flight or attack mode and rarely get into rest mode. Our brain must somehow tell us that we are in danger.
This can be through the feeling of fear or anger, but also through fearful thoughts, pain, fatigue, and other bodily sensations - all accomplished through the ANS.
The brain is using this to tell us, hey, watch out, get out of here, change something, avoid this. It stores the information to respond to the specific stimulus, the trigger, with feeling A or symptom B. So it learns to respond that way, and does it faster and more intensely the next time. At some point we also become afraid of our symptoms, of the unbearable pain, that flu-like feeling and total exhaustion, feeling frustrated, powerless.
We look for the triggers, change our behavior, restrict ourselves. And get into a vicious circle. Because the negative feelings and thoughts regarding the symptoms and triggers result in an increased danger signal in the brain, which only intensifies the discomfort. It learns: Oh, movement is dangerous. Or: weather changes are threatening. And communicates that to us with pain, exhaustion or other sensations. ME/CFS and fibromyalgia could therefore be an overreaction of the brain to external and internal stimuli.
This thesis is not my own discovery, but that of others who are helping those with fibromyalgia and ME/CFS to recover. Through special techniques, the brain can be
retrained. It learns again, hey, exercise and weather changes aren't dangerous after all, it's all okay. I don't need to send symptoms anymore. That is brain training. And the mechanism behind it
I am aware that my explanatory scenario does not necessarily correspond to what is spread in public about these syndromes. There is talk of autoantibodies, of damaged small nerve fibers, of mitochondria? Absolutely correct. But also about a misdirected ANS. I think all the tiny details that scientists are discovering make sense. Because, when the brain, mind, nervous system, immune system, hormones and body don't work well together or get each other wrong, it messes up every cell in the body. And very importantly, this does not mean that you are to blame for your illness, that you are imagining everything, or that everything is "just psychosomatic." It is simply a learned reaction of your brain, which actually only wants to protect you in this way.
Translated with support of DeepL
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 ME/CFS or other syndromes.
Jesús Castro-Marrero, Mónica Faro, Luisa Aliste, Naia Sáez-Francàs, Natalia Calvo, Alba Martínez-Martínez, Tomás Fernández de Sevilla, Jose Alegre, Comorbidity in
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Nationwide Population-Based Cohort Study, Psychosomatics 2017
Deutsche Schmerzgesellschaft: Definition, Pathophysiologie, Diagnostik und Therapie des Fibromyalgiesyndroms
Institute of Medicine (IOM): Beyond ME/CFS – A guide for clinicians, 2015
Howard Schubiner: Unlearn your Pain/Anxiety and Depression
Dan Neuffer: CFS Unravelled
Alan Gordon: The Way Out