I guess this is sort of “old news,” since the research was published in 2013, but I only heard about it for the first time yesterday when an obscure reference popped up in my news feed. The link I saw mentioned the findings, but didn’t even cite the original article, so I wanted to do a little more digging and share what I found.
With connective tissue disorders like Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSDs), chronic pain is a common issue. And in any discussion of chronic pain, fibromyalgia is likely to rear its ugly head.
I say ugly head because fibromyalgia is a hotly debated topic, and in my experience, the discussion surrounding this diagnosis is either misinformed, misguided, or simply out of date. Among doctors and patients and those unaffected alike. As visibility of the disease has increased, many doctors use fibromyalgia as a catch all term for chronic, widespread pain, and haphazardly apply the label to patients without performing the most critical part of the diagnosis: ruling out all other possible causes of the pain the patient is experiencing.
Hypermobility can be one of those causes.
Fortunately, research into this often debilitating condition is ongoing, and scientists are getting closer to understanding how the disease operates. Unfortunately, spreading the findings of the research is a bit slower going. And we all know there’s nothing harder than getting someone to consider new facts on a topic they think they already understand completely.
For background, according to Wikipedia, fibromyalgia is
“a disorder of pain processing due to abnormalities in how pain signals are processed in the central nervous system… The cause of fibromyalgia is unknown. However, several hypotheses have been developed including “central sensitization”. This theory proposes that people with fibromyalgia have a lower threshold for pain because of increased reactivity of pain-sensitive nerve cells in the spinal cord or brain.”
This is the explanation I was most familiar with, that doctors and scientists who actually treat fibromyalgia seriously no longer believe that it is “all in your head,” but it IS in your brain, and how your brain processes information.
But what I didn’t find referenced in the entire Wikipedia article was this research article published in June 2013 in Pain Medicine: Excessive Peptidergic Sensory Innervation of Cutaneous Arteriole–Venule Shunts (AVS) in the Palmar Glabrous Skin of Fibromyalgia Patients: Implications for Widespread Deep Tissue Pain and Fatigue.
The article is pretty technical, so for an easier read, I recommend the press release related to the article: Researchers Discover a Rational Biological Source of Pain in the Skin of Patients with Fibromyalgia.
Here are the highlights from the press release:
“[R]outine testing has been largely unable to detect a biological basis for fibromyalgia, and standard diagnosis is based upon subjective patient pain ratings, further raising questions about the true nature of the disease. For many years, the disorder was believed to be psychosomatic (“in the head”) and often attributed to patients’ imagination or even faking illness. Currently approved therapeutics that provide at least partial relief to some fibromyalgia patients are thought to act solely within the brain where imaging techniques have detected hyperactivity of unknown origin referred to as “central sensitization.” However, an underlying cause has not been determined, leaving many physicians still in doubt about the true origins or even the existence of the disorder.”
“Now, a breakthrough discovery by… neuroscientists Dr. Frank L. Rice and Dr. Phillip J. Albrecht, reports on a unique peripheral neurovascular pathology consistently present in the skin of female fibromyalgia patients which may be a driving source of the reported symptoms.”
““Instead of being in the brain, the pathology consists of excessive sensory nerve fibers around specialized blood vessel structures located in the palms of the hands,” said Dr. Rice, President of Intidyn and the senior researcher on the study. “This discovery provides concrete evidence of a fibromyalgia-specific pathology which can now be used for diagnosing the disease, and as a novel starting point for developing more effective therapeutics.””
““We previously thought that these nerve endings were only involved in regulating blood flow at a subconscious level, yet here we had evidences that the blood vessel endings could also contribute to our conscious sense of touch… and also pain.””
“To analyze the nerve endings, Drs. Rice, Albrecht, and postdoctoral researcher Dr. Quanzhi Hou, used their unique microscopic technology to study small skin biopsies (less than half the size of a pencil eraser) collected from the palms of fibromyalgia patients… What the team uncovered was an enormous increase in sensory nerve fibers at specific sites within the blood vessels of the skin.”
“Although they are mostly limited to the hands and feet, the shunts [controlling the blood vessels] likely have another important function which could account for the widespread deep pain, achiness, and fatigue that occurs in fibromyalgia patients… “In addition to involvement in temperature regulation, an enormous proportion of our blood flow normally goes to our hands and feet. Far more than is needed for their metabolism” noted Dr. Rice. “… the pathology discovered among these shunts in the hands could be interfering with blood flow to the muscles throughout the body. This mismanaged blood flow could be the source of muscular pain and achiness, and the sense of fatigue which are thought to be due to a build-up of lactic acid and low levels of inflammation fibromyalgia patients. This, in turn, could contribute to the hyperactivity in the brain.”
“Dr. Albrecht also points out that alterations of normal blood flow may underlie other fibromyalgia symptoms, such as non-restful sleep or cognitive dysfunctions.”
This finding is absolutely HUGE and I can’t believe it hasn’t gotten more attention!!! For a disease that was originally treated as psychosomatic (aka made up), to now have evidence of very real, PHYSICAL differences in not just the brains of patients, but in their very bodies is nothing short of revolutionary.
For scientists to say, “Hey, we thought we knew how these nerves worked, and didn’t think they had anything to do with touch or pain, but it turns out we were wrong and didn’t really know what we were talking about,” is astounding.
And not only that, but it also turns out that the very nerves in question are found in higher abundance in people who say they experience more pain than others. It’s almost like those patients KNEW what they were talking about. Weird.
What truly boggles my mind is that while I’ve been given a diagnosis of fibromyalgia and discussed this diagnosis with many doctors in the course of my care, NOT ONE of those doctors mentioned this research. I’ll definitely be bringing this research up at my next rheumatology appointment.
I hope sharing this research will help contribute to more informed discussions of not only fibromyalgia, but also other conditions resulting chronic pain, and lead to a better understanding of the impact of these disorders.