Refugees and Fibromyalgia

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Recently there has been a lot of discussion about (and increased research of) mental illness in refugees due to the trauma that they experience. However, there is another potentially trauma-related illness that may affect refugees far more than we realize - fibromyalgia. In this post I will briefly explain what fibromyalgia is, share my personal experience with the condition, talk about how it is linked to PTSD, and how refugees and fibromyalgia may be closely connected.

What Is Fibromyalgia?

Fibromyalgia is a chronic illness characterized by widespread joint and muscle pain for longer than three months and tenderness at a certain number of points on the body. Fibromyalgia often comes with other comorbidities, such as chronic migraine, irritable bowel syndrome, restless leg syndrome, depression, and insomnia. The cause of the condition is currently unknown and there is no cure. A patient’s symptoms can only be managed, but not eliminated. The condition is often triggered by a serious illness, or a physically or emotionally traumatic event. Fibromyalgia does not show up in any blood test or x-ray, so many doctors still refuse to believe it is a legitimate condition. In fact, fibromyalgia was only given its own diagnostic code in the International Classification of Diseases (ICD) in 2015. The ICD is used by doctors to bill medical insurance companies and for other medical reporting and research. This means that many patients go undiagnosed and untreated because doctors refuse to believe that their symptoms are real.

My Fibromyalgia Story

I was diagnosed with fibromyalgia in April 2014, but my symptoms began four years earlier in the summer of 2010. While on a summer mission trip in Zambia my team and I experienced an attempted robbery at gunpoint in the middle of the night. Though I did not immediately suffer psychologically due to the incident, the adrenaline that was released in my body that night triggered fibromyalgia. I returned to the US two weeks later and within a month my health had deteriorated so much that I could not walk without severe joint pain. Doctors could not find anything wrong with me, and some even told me that my symptoms were purely psychological and that I should seek counseling. So, I ceased all major physical activity, and did my best to cope with my symptoms. Four years and many doctors later, after doing my own research, I found a doctor specializing in fibromyalgia and made an appointment. After hearing my story he immediately diagnosed me and started me on my current treatment regimen.

Fibromyalgia is a major reason why I became involved in working with refugees and have chosen to pursue a career in refugee advocacy. I had originally intended to do missions overseas and actually studied linguistics during my undergraduate degree, in order to do Bible translation. When I was diagnosed with fibromyalgia my doctor told me that I would probably never have the physical stamina to live long-term in the developing world and would need to live somewhere with access to the medications and therapies necessary to manage my symptoms. So, I naturally shifted to volunteering with refugees, many of whom are from exactly the parts of the world I had hoped to work in.

Fibromyalgia and PTSD

Fibromyalgia has been linked to PTSD in multiple studies, but it is still not clear whether or not PTSD can cause fibromyalgia. Some have speculated that traumatic experiences and PTSD may simply open the door for fibromyalgia to develop in an already susceptible person. It’s as if living through a traumatic situation, like an attempted robbery at gunpoint, leaves the body vulnerable for fibromyalgia to take hold. In a 2004 study of Israeli war veterans, 49% of those with PTSD also had fibromyalgia. While there is a lot more research to be done concerning this link, I cannot help but wonder how refugees and fibromyalgia may be connected through PTSD.

Fibromyalgia and Refugees

Since I began working with refugees in college I have been curious about whether or not they are more likely to suffer from fibromyalgia. Most of the refugee women I have been friends with have occasionally complained of aches and pains, but usually the language barrier did not allow me to ask any specific questions about their symptoms.

Periodically I would search for medical studies about refugees and fibromyalgia, but I could never find any. Recently I came across the first one of its kind. A study of 384 Syrian refugee women in Jordan last year found that 30% of them showed symptoms of severe fibromyalgia. That’s compared to 2% of the US population - a staggering difference. While this is only one study, I hope it will be the first of many and that this topic will continue to be researched.

While organizations that work with refugees have significantly improved the mental health care that they offer, for some refugees the trauma they have experienced may also affect them physically through chronic illnesses like fibromyalgia. Those of us who work with refugees should be seeking every possible means to help them, especially since many doctors still do not understand the condition, and some even refuse to believe it exists. All refugees who are resettled in the US have medical check ups shortly after they arrive. While it is unlikely that fibromyalgia screening will become a mandatory part of these check ups, volunteers and organization staff who accompany refugees to these appointments should be aware that refugees may be especially vulnerable to developing chronic illnesses like fibromyalgia.

If you would like me to write a post specifically about warning signs of fibromyalgia in refugees and the unique challenges that refugees may face in securing a fibromyalgia diagnosis, let me know in the comments. Also, if you have any questions about my personal experience with chronic illness, I would be happy to answer them. You can contact me here.