ACEs and Fibromyalgia

Episode 12: All the Questions and Some of the Answers

ACEs and Fibromyalgia

I was asked today, "is fibromyalgia a rare disease?". I guess I can understand asking that question considering I had to ask "Fibro-what...???!!!" when I discovered last year that this disorder had been listed on my medical chart for over 10 years.

The answer to that question is that fibromyalgia is not a rare as you may think. According to the Mayo Clinic, " fibromyalgia affects around 4 million U.S. adults, or about 2 percent of the adult population". Fibromyalgia is one of many chronic pain disorders that affect 1 in 5, or 50.2 million Americans today.

Fibromyalgia is a chronic pain disorder characterized by widespread bodily pain sustained for over three months. Fibromyalgia is not a disease. It is not a rheumatoid nor inflammatory disease. However, this disorder affects all four quadrants of the body and is often accompanied by fatigue and trouble sleeping.

There is no cure for fibromyalgia, but the symptoms can be managed with medication and combination of therapies including physical, psychological , and behavioral therapy.

I keep coming back to the question: what CAUSED my fibromyalgia? As I have mentioned in other posts I am a survivor on many fronts: childhood abuse, sexual assault, rape, and date rape. With all of that trauma, if we just focus on childhood, we may have the answer. Childhood Adverse Experiences, or ACEs, are often the catalyst for disease, and in this case, fibromyalgia.

What are ACEs? What are the Consequences?

ACEs are Adverse Childhood Experiences. According to the Centers for Disease Control, A.C.E.S. are, "potentially traumatic events that occur in childhood. ACEs can include violence, abuse, and growing up in a family with mental health or substance use problems". Specifically, these traumas can include:

• child emotional, physical, sexual abuse

• physical and emotional neglect,

• growing up in a household with a family member with alcohol/drug use disorder and/or mental illness,

• spousal abuse and violence in the home,

• parental separation or divorce,

• a member of the family involved in the prison system.

Other ACEs can include:

• racism

• discrimination

• community violence

• lack of services

This is a short list intended to be used as a guideline. However, it is estimated that 61% of adults across the United States have experienced at least 1 kind of ACE before the age of 18 years old, and the CDC says, "nearly 1 in 6 reported they had experienced four or more types of ACES."

Source: Centers for Disease Control and Prevention Credit: Robert Wood Johnson Foundation

Sadly, higher ACEs scores can be linked to a higher potential for chronic illness in adulthood, a higher likelihood of substance misuse and abuse, and according the World Health Organization, "ACEs account for 29.8% of all psychiatric disorder". This is of concern because the risk of depression increases by 460% and the risk of suicide increases by over 1000% with an ACE score of 4 or more. ACE scores do not define us; they don't take into account positive circumstances like strong relationships, or help from community services, but they can inform us about our potential risk for negative health outcomes later in life.

My ACE Score

When I was a new teacher, I became interested in ACE scores with hopes to better understand my students behavior. Then, I took the ACE quiz myself because I realized that this information was important to understanding my own experiences. My eyes were opened. I had had many of the experiences on the quiz and more importantly, I had suffered some of the negative health outcomes associated with a higher ACE score. I have taken several ACE quizzes and score a solid 6 each time. I am a candidate for chronic illness, alcohol use disorder, and mental illness - all of which I have experience with today.

Want to find our your ACEs score? Take the NPR ACE online Quiz

Fibromyalgia and ACEs

How are ACEs related to fibromyalgia? As noted in previous posts, I am a firm believer in the understanding brought to light by Dr. Bessel Van der Kolk that "the body keeps the score", and that our bodies retain the memory and the pain of our adverse experiences. Dr. Van der Kolk says,

"After trauma the world is experienced with a different nervous system. The survivor's energy now becomes focused on suppressing inner chaos, at the expense of spontaneous involvement in their life. These attempts to maintain control over unbearable physiological reactions can result in a a whole rage of physical symptoms, including fibromyalgia, chronic fatigue, and other autoimmune diseases" (53).

Traumas are associated with chronic illnesses in adulthood. This is not only the finding of Dr. Van der Kolk, but a whole host of doctors and researchers focused on the causes of chronic pain. In an in-depth review of literature, Tidmarsh et. al. concluded that there is a greater prevalence of "chronic widespread conditions like fibromyalgia" associated with adults with ACEs. After reviewing the data from a study by RheumatologyInternational, Jared Kaltwasser of the American Journal of Managed Care stated, "Adverse Childhood Experiences [ACEs] appear to increase a person's risk of fibromyalgia"And in a 2015 dissertation, Susan Fay concluded that, "Exposure to ACEs can place a child at a high risk for developing different diseases or illnesses in adulthood, including fibromyalgia." It is clear that ACEs can be the root cause for many people living with fibromyalgia.

In Sum, Fibromyalgia is not Rare

Fibromyalgia, is not a rare disease. Fibromyalgia is a disorder that is diagnosed in 2% - 4% of the population worldwide. It is more commonly considered a disorder of the central nervous system called central sensitization which is a collection of disorders where "the central nervous system misfires and amplifies sensory input" resulting in pain, fatigue, and sleep problems.

Fibromyalgia can be caused by a number of factors, but coming into light more and more is a persons exposure to adverse childhood experiences, or ACEs. As stated above, my ACEs score is a 6, making me vulnerable in adulthood to mental illness, substance use disorder, and chronic illness. I have been diagnosed with PTSD & major depressive disorder, I am 300+ days alcohol free (Yay! Me!), but the most pronounced issue I am forced to deal with right is chronic illness - my diagnosis of fibromyalgia. I am not a rare case. I am one person of the 2% to 4% of the population worldwide - or, one of two hundred ten million, six hundred thousand people - living with fibromyalgia today.

If you enjoyed this post, share it with your friends and colleagues, and consider becoming a subscriber. If you have any tips or suggestions about how to better cope with chronic pain, leave a comment. I would love to hear from you!

Karen Palmen, EdD is a veteran educator in Saint Paul, Mn. She teaches Dance and English at Saint Paul Central High School. She has an active TikTok page that features humorous, political, mental health, and educational content (kickin it with karen). And a a dormant YOUTUBE channel with the same name, featuring fermented foods and other cooking oddities.

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