Dr. Frank Rice remembers the day when he realized he was onto something.
“There was something very unusual that we had just never seen before,” Rice recalls. “It’s one of those things that get you jumping up from the microscope and running down the halls, grabbing people and saying ‘Here, come take a look at this!’”
What Rice was looking at under his microscope was skin biopsy tissue, less than half the size of a pencil eraser, taken from the palms of female fibromyalgia patients. In 17 of the 18 samples that could be analyzed, Rice says the patients had an unusual amount of extra nerve fibers that had somehow “sprouted” around tiny blood vessels in their skin.
Finding the same disorder in 17 out of 18 patients was significant – even for a small study.
“That was what was so striking about this. It was so drastically different from anything we have seen before,” says Rice, who is president and chief scientist of Integrated Tissue Dynamics LLC (Intidyn), a bioresearch company based in Rensselaer, New York.
“It was a really, really striking pathology.”
What Rice and his colleagues at Intidyn and Albany Medical College may have discovered is the first biological evidence of what causes the pain and other symptoms of fibromyalgia, a complex disorder that has stumped physicians and researchers for decades.
Fibromyalgia patients typically suffer from joint pain, deep tissue pain, fatigue, depression, headaches and lack of sleep. What causes this whole range of symptoms – which are difficult to treat, much less cure – has long been a mystery.
“We suspected there would be something to see. Yet this is such an ‘out of the box’ finding about fibromyalgia that it has the potential to change not only the way we look at the disorder but also the way we can treat it and more effectively take care of people who have it,” said Dr. Charles Argoff, an Albany Medical Center neurologist and pain specialist, who was the study’s chief investigator.
Argoff and Rice compare fibromyalgia to a car with a broken cooling system. When the engine first starts, the car runs smoothly. But eventually the engine overheats and the car breaks down.
What causes the body to “overheat” with fibromyalgia?
The culprit may be those excess nerve fibers, which accumulate around tiny muscular valves or “shunts” that have a unique structure in blood vessels on the palms of the hands, as well as the soles of the feet.
The shunts, which are about the size of a pencil point, act as thermostats that regulate body heat. Under warm conditions, the shunts close down to force blood into the capillaries of the skin – radiating heat away from the body. Under cold conditions, the shunts open wide, allowing blood to bypass the capillaries in order to conserve heat.
That may explain why fibromyalgia patients often have painful or tender hands, and are sensitive to sudden weather changes. The shunts could also be interfering with the flow of blood to muscles and organs throughout the body, which would account for the widespread pain, achiness and fatigue that occurs in fibromyalgia patients.
As we reported last week, Rice and Argoff have reported their findings in Pain Medicine, the journal of the American Academy of Pain Medicine. They are also broadening their research, to see if excess nerve fibers may play a role in other chronic pain disorders.
“Now that we know that these nerve fibers can be problematic, we are extending into other areas. There’s been a lot of mysterious diseases, chronic fatigue, post-traumatic stress, irritable bowel, restless leg. They all share the same enigmatic, is it real, phenomenon” says Rice.
One such study is in its preliminary stages in San Diego, where researchers are looking at men who suffer from fibromyalgia and post-traumatic stress (PTSD), a chronic anxiety disorder that people experience after a traumatic event. Many patients who suffer from PTSD also have symptoms of fibromyalgia, and some experts believe the two disorders could both be triggered by chronic stress.
“A stressful situation could be causing activity out to the body tissues and is causing the nerve endings to change their characteristics,” says Rice. “The other possibility is that there may be a genetic predisposition, that there’s something about these people who develop fibromyalgia that make these nerve endings more susceptible to changing due to hormonal changes or dietary changes. We don’t know.”
Rice has looked at some of the first biopsy tissue samples from San Diego and seen some of the same excess nerve fibers he saw in fibromyalgia patients.
“We have seen the same pathology; it’s just not as consistent as those. When you’re dealing with PTSD, you can have more of the depression and not necessarily the pain symptoms that the fibromyalgia patient has,” Rice told National Pain Report. “We don’t yet know what we’re seeing there.”
“We haven’t found this particular finding in individuals with other chronic pain states. We haven’t seen that yet,” adds Argoff. “But what we do know is that in other chronic pain states there are abnormalities of expression of various neuroactive agents in the skin.”
“For the last decade there have been increasing numbers of reports in diabetic neuropathy, in complex regional pain syndrome and now in fibromyalgia of abnormalities of neurochemistry in the skin that may have much more importance than ever recognized in understanding what is happening in the nervous system.”
If the skin and peripheral nerves are responsible, Argoff says the finding would reverse “previously published dogma” that fibromyalgia is a disorder of the brain and central nervous system.
“But we have to prove that. And we have not proven that,” he adds.
About 10 million Americans suffer from fibromyalgia, and one in 20 people worldwide. Many have been told by their physicians that the disorder is untreatable, incurable and “all in their head.”
This new research may not lead to a cure, but it could finally give fibromyalgia sufferers some long sought answers.
“The key to the finding is that there is something really there. Whatever the cause is, it’s important for people to understand that something is physically wrong. And that’s a big step,” says Rice.
“Just to know there is something wrong, I found among friends, is an enormous relief in its own right.