Fibromyalgia, chronic fatigue syndrome and other nebulous energy-zapping conditions can be difficult to diagnose and treat. The symptoms are far-reaching and can be indicative of a myriad of other imbalances and illnesses, so often a patient with symptoms of insomnia, brain fog, inflammation, depression, fatigue, and consistent unexplained pain is sent on a merry-go-round of doctor visits and years of consultations with specialists and labs to determine the cause.
My journey and diagnosis
As a child, I was bedridden for months at a time a few different times. I had pneumonia when I was 8, which was my first introduction to the waiting room life. I then contracted mononucleosis when I was 13, which kept me out of school and in bed for 4 months. Add a couple of bouts of anaphylactic shock, and the result was many weeks of reading fantasy novels in bed, convalescing and longing for a life of vitality, adventure and travel. Instead of that, however, with reality came a few decades of fatigue and pain, and a continuously compromised immune system.
Bitter pills to swallow
Throughout my teens, I was treated for headaches and depression, which landed me prescriptions for Prozac, Fioricet, Vicodin, Xanax, Zoloft, and other neurotransmitter and stress-hormone affecting pharmaceuticals.
In college, my brain fog was diagnosed as adult-onset ADHD, for which I was prescribed amphetamines: Ritalin, Adderall, and Dexedrine. For me personally, all of these medicines created a negative feedback loop that prevented adequate nutrition and rest and made my symptoms worse.
I veered away from taking any pharmaceuticals at all in my 20’s, but my symptoms persisted and worsened after I had children. In mid-morning for no apparent reason, I would experience an energy crash, in which suddenly I could barely talk and would need to find a place to lie down for 20 to 30 minutes in order to restore myself and become functional again.
A negative feedback loop
More and more I experienced insomnia, which inevitably would lead to headaches, joint tightness and inflammation, and debilitating fatigue. After staying in bed all day most days for a couple of months, I finally gave in and decided to see some specialists.
After many months of tests and appointments, at the age of 28, I was diagnosed with fibromyalgia and joint hypermobility syndrome.
The Mayo Clinic defines fibromyalgia as a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
The theory is that patients with fibromyalgia do not make enough of a particular chemical in their sleep, which results in heightened pain sensation. Substance P is a neurotransmitter that is released when axons are stimulated. Elevated levels of substance P increase the sensitivity of nerves to pain or heighten awareness of pain. Four independent studies have found that levels of substance P are 2 to 3 times higher than normal in the CSF of patients with fibromyalgia. These elevated levels cause fairly normal stimuli to result in exaggerated pain sensitivity.
About 70% of patients recognize a connection between poor sleep and increased pain, along with feeling unrefreshed, fatigued, and emotionally distressed.
What is joint hypermobility syndrome?
Turns out being double-jointed is more than just a party trick. My joints bend back double the amount of a normal person, which creates ongoing tightness and inflammation. I was given muscle relaxers and narcotics by my physician but I was not responding well to them so continued to look for solutions.
It has been suggested that many people with ‘everyday’ non-inflammatory musculoskeletal problems may have undiagnosed joint hypermobility syndrome (JHS), a complex multi-systemic condition. JHS is characterized by joint laxity, pain, fatigue and a wide range of other symptoms.
For fibromyalgia, I was prescribed Tramadol— a synthetic opiate that also acts as an anti-depressant–– 4x per day. Let me tell you it functioned just a little too well as an anti-depressant— within 9 months of taking this medicine I was a major space case and I felt very disconnected. I was not in pain and I was not bedridden but I felt like an empty shell floating through the ether, but sometimes would become a little manic.
I was a bit alarmed at my state of mind after 9 months of taking this medication, and so I got seriously interested in natural medicine modalities and protocols. I knew there was a lot of quackery around, but also that herbal medicine is a time-honored practice going back thousands of years, and also that modern research is now easily accessed and in abundance, shedding light on the efficacy of alternative health modalities.
In the next part of this series, I will talk about what I have personally found benefit from to help restore my vitality and minimize my chronic pain– what helps me sleep, and what has helped mitigate biological anxiety responses.
Complementary and Alternative Medicine includes conventional
The results are promising and the future is bright. While my journey through conventional medicine has done wonders to inform and shed light on my condition, many of the treatments I find effective are not commonly suggested by physicians, and the pharmaceutical solutions offered by classical physicians just didn’t mesh with my sensitive biology. Rather than throw the baby out with the bathwater and shun all doctors, however, I wanted to learn solid, science-based techniques for self-care that were also safe, while under the supervision of a medical doctor. In Part 2 of this series, I will share the pearls of wisdom I learned from my expedition into alternative medicine for the treatment of my condition, and share how how complementary and classical medicine are not mutually exclusive.
Did you know ACHS offers a Bachelor of Science in Integrative Health Sciences (BSIHS)? In this course, students learn to integrate modern science with holistic health and wellness principles. After exploring biological sciences such as anatomy, physiology, psychology, biology, and chemistry, students delve into the scientific world of natural health such as aromatherapy, herbal medicine, lifestyle modifications, and holistic nutrition. To request information about this type of training, click here.
Do you have a story, an experience with pain and fatigue? What helped you? What stage are you in the process of learning about your unique biology, and how can we help you discover wellness? Leave a comment below!
About American College of Healthcare Sciences
Founded in 1978, ACHS.edu is a Portland, Ore.-based, accredited college offering online, on-campus, and study abroad integrative health education. With undergraduate and graduate degrees, diplomas, certificates, and continuing education units in integrative health, ACHS makes holistic health and wellness education accessible to a diverse community, including healthcare professionals, military students, stay-at-home parents, and lifelong learners. Specializations include aromatherapy, herbal medicine, holistic nutrition, and integrative health. ACHS is a Certified B Corporation® and was named two of 100 Best Green Workplaces in Oregon 2017 by Oregon Business magazine. ACHS is also accredited by the Distance Education Accrediting Commission (DEAC), which is recognized by the U.S. Department of Education and by the Council for Higher Education Accreditation (CHEA). In response to our commitment to service members, veterans and military spouses, ACHS has been designated as one of the top 16% of military-friendly institutions in the U.S. for nine years in a row. For more information visit achs.edu.