Many diseases that primarily affect women have been considered “purely psychological” by medicine just because the physical origins of the conditions aren’t yet understood, suggests Maya Dusenbery, writer, editor, and author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.
With it’s long road to legitimacy, fibromyalgia is one such condition. It affects primarily women; an astonishing 75% to 90% of fibromyalgia patients are female. And, before the 1990s, fibromyalgia was widely believed to be a psychological phenomenon, with no organic, physical cause.
Recent Evolution in Fibromyalgia Diagnosis
In 1990, the American College of Rheumatology Research Classification Criteria (ACR RCC) for fibromyalgia was published, giving physical, diagnostic criteria for fibromyalgia for the first time. In order to receive a diagnosis of fibromyalgia, a patient needed to report widespread pain for at least three months and to present with at least 11 of 18 tender, soft tissue trigger points.
Later in the 1990s, causative factors for fibromyalgia were proposed. The ACR RCC revised its criteria for fibromyalgia in 2010 to reflect these changes. A diagnosis of fibromyalgia was then understood to be caused by a hyper-functional autonomic nervous system. This hyper-function could trigger tachycardia, fatigue, insomnia, depression, and hyperthermia, as well as widespread pain. As of 2010, the necessity of displaying specific painful trigger points was discarded by the ACR RCC.
In the early 2000s, a theory initially presented by Johns Hopkins trained neurosurgeon Dan Heffez, MD, to the National Fibromyalgia Research Association convinced some doctors that fibromyalgia may not be a primary condition at all, but rather a secondary condition — meaning the hyper-function of the nervous system seen in fibromyalgia could arise from an underlying cause.
Dr. Heffez works with cervical myelopathy patients — patients who have injuries or degeneration causing compression of their cervical spinal cord (the spinal cord of the neck). Dr. Heffez has contributed to two studies linking fibromyalgia to cervical myelopathy. A 2004 study showed that some fibromyalgia patients have neurological symptoms consistent with cervical myelopathy. A 2007 study showed that surgical treatment of cervical myelopathy in patients diagnosed with fibromyalgia significantly improved fibromyalgia symptoms.
Dr. Heffez theorizes that in significant numbers of fibromyalgia cases, both autonomic hyper-function and its resulting symptoms, including widespread pain, can be caused by positional compression of the cervical spinal cord, or PC3.
What is Positional Cervical Compression (PC3)
Positional cervical compression occurs when parts of the spinal cord in the neck are compressed – but only in certain positions. In cases of PC3, the cervical spinal cord is most often compressed during neck extension, when the patient tilts their head backward, say, to look up at the sky. In cases of PC3, a number of structures can compress the cervical cord with the neck in extension, including displaced discs from trauma or degenerative disc disease, an injured ligamentum flavum (a spinal ligament often linked to stenosis, or the narrowing of the spinal canal), or the Chiari 1 malformation (a congenital disorder that compresses brain and spinal cord structures).
Dr. Heffez believes PC3 has been overlooked as a possible cause of fibromyalgia due to the fact that diagnostic MRIs are almost always taken with the cervical spine in a neutral position. In order to see PC3 in an MRI, the neck has to be in positions other than neutral, with images ideally compared in a neutral position as well as in flexion (looking down toward the toes) and in extension (looking up overhead).
Symptoms of PC3
PC3 can cause both widespread referred pain and neurological symptoms, due to the intermittent, positional compression of the cervical cord. However, each patient is different, and some do not show symptoms. However, when symptoms are present, they can include:
- Diffuse muscle pain
- Worsening pain with neck extension
- Neck discomfort
- Sleep disturbances
- Balance problems
- Gait issues
- Grip strength discrepancy
The list of symptoms can vary from one person to another, and more research is needed to fully understand PC3 and the profound effect it may have on fibromyalgia patients.
Testing and Treatment for PC3
Traditionally, MRI imaging of the spine in multiple positions has been expensive and unlikely to be reimbursed by most insurance companies. Therefore, it’s often not ordered. However, if you suspect PC3 may have bearing on your symptoms, discuss it with your doctor. They may be able to refer you to a cervical myelopathy specialist, which are typically located at orthopedic clinics and departments, and spine centers throughout the country.
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In regards to treatments, both physical therapy or surgery may be helpful in resolving or lessening fibromyalgia symptoms in those who have PC3. One clinic, Pacific Rheumatology Associates in Renton, Washington, has developed physical therapy programs to treat PC3. The programs aim first to improve proprioception (the awareness of where the body is in space), and then to stabilize and support the ligamentum flavum in the cervical spine. Initial outcomes are encouraging, though more research is needed to determine exactly what is working and why.
PC3 in Conclusion
These developments in understanding one possible underlying cause of fibromyalgia are heartening. The authors of the 2004 study (mentioned above) conducted by Dr. Heffez and others suggest that a detailed neurological examination be completed for fibromyalgia patients in order to rule out cervical cord compression. If you feel your symptoms are consistent with cervical myelopathy or PC3, talk with your doctor about further evaluation, and research treatment options accordingly.
In the 2007 study mentioned above, Dr. Heffez and the other authors conclude that surgical treatment of compressive cervical myelopathy or PC3 in patients with fibromyalgia can significantly improve symptoms. Surgery is a major step, and most will only consider it as a last resort — if physical therapy and drug interventions don’t help.
Should you and your doctor decide to look into surgery, consider speaking with other fibromyalgia patients who have made the same decision. There is a support group on facebook through the Cervical Myelopathy Foundation that may connect you to people who can help you make the right decision. Regardless of the path you choose, support from others and sharing information with a community can be a valuable tool on your healing journey.
Shona Curley lives and works in San Francisco. She is co-owner of the studio Hasti Pilates, and creator of the website www.redkitemeditations.com. Shona teaches meditation, bodywork and movement practices for healing Lyme disease, chronic illness and pain.
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