I've been wearing a neutral palette but Fred has a collection of orange tees, so he's been representing
-- he just did not know it. He also has a collection of butt-ugly kelly green tees representing a fine local elementary school. They had a surplus supply on sale outside the gymnasium where we cast our recent ineffectual ballots.
Luckily, Fred has an impeccable sense of style and has been able to mute the blaring, screaming, Munchesque insanity of his well-constructed cotton raiments, able to bring stinging tears to the eye, by careful pairings. The unexpected tweed, a vest, studied distressing.
Oranges, yellows, and greens are the precise seasonal colors I was warned to avoid as I grew into a sallow-skinned woman, flirting with the stylishness of permanent jaundice. I remember my stepmom going through some rabid phase that led to women breathlessly inquiring of one another: "Have you had your colors done?" When shopping, small color wheels could be surreptitiously consulted -- along with carefully constructed portfolios of looks from foreign fashion magazines, including hair styles and colors meant to best complement, say, a round faced, frizzy-headed, heavy-lidded, thick-browed thin woman in the late stages of liver failure, who could benefit from a chin implant and another half-inch of nose.
Right!
Okie-dokie, then!
Here are some recent CRPS / RSD articles, most meant to inspire and just get the word out of the existence of this soul-sucking disorder.
Some of you have wondered how I am doing.
I am doing badly and have given up trying.
I am also inspired by the bravery of those who never cease their efforts to inspire others -- inspired during those brief breaks from the disgust that colors everything... orange.
They picked orange because the iconic red had been snagged by HIV / AIDS but needed something to make folks think of fire, burning, heat -- since one of the favorite, oft-repeated descriptions CRPSers toss off in studied blitheness is to urge the poor soul who dared wonder aloud what CRPS must feel like, since it looks so darned enticing, is " imagine your hand/foot/leg/arm was doused in gasoline, lit on fire, and then kept that way..."
There are other popular versions, some of which have the burning gasoline coursing endlessly through veins, arteries, and capillaries, many quoting the McGill Pain Scale, in which CRPS / RSD is usually represented by "causalgia." It's confusing, but the disorder used to be divided into "Reflex Sympathetic Dystrophy" and "Causalgia," now represented by "Complex Regional Pain Syndrome," Type 1 (the former RSD) and Type 2 (the former causalgia). Sadly, some medicos don't stress the distinction, but there is one, or several. The cocktail party version is that Type 1 lacks an evidentiary nerve lesion and Type 2 presents with a documented lesion or nerve injury. After the second smoked salmon hors-d' oeuvre, the crib-noters will wave a savory cracker about and say something like: "But it makes no difference, because the treatments, such as they are {snicker::snicker}, are the same." Untrue, but there is usually some party-goer anxious to talk football.
Ah, the McGill Pain Scale. Here it is, and the spiel that goes with:
This must be an updated version. I'm glad, because explaining how I have causalgia in my right leg and left arm, but reflex sympathetic dystrophy in my left leg and right arm? It's a buzz kill, for sure. Don't get me started on my new diagnoses of ulnar nerve palsy and bilateral carpal tunnel entrapment... or the CRPS in the lower part of my face. That, in party terms, could carry us through the canapés and a light dessert wine.
The bottom line? In the orangy month of November, when sufferers of CRPS, that ancient degenerative neurological disease without a cure or a decent treatment dance around the graying trunks of Fall's stark trees, Saying "constant, unrelenting pain" does not have the panache of the more restrained and easily extrapolated experience of being injected with burning fossil fuels. Then try explaining the concept of "spread," and the addition of spasm/dystonia.
Drunk in the cracked vinyl bench back seat of the cab, loving the old oily scent of cigarettes and a mélange of good and bad perfumes and hair products, wondering which home the cabbie has chosen for destination, my mind wanders to that weird and wonderful time in Montréal... home to McGill and the famous scale, as well as to a summer "collecting" joual for a linguistics prof, and eating every version of trout known to the Canadian chef.
Now, as for those articles, here are a choice few, with excerpts:
COMPLEX REGIONAL PAN SYNDROME CRPS/RSD
CRPS involves a malfunction of the nervous system that causes pain (often diffuse, intense and unrelenting) and related sensory abnormalities). Dysautonomia means dysregulation of the autonomic nervous system (ANS). The ANS controls involuntary bodily synergies between the sympathetic and parasympathetic nervous symptoms. Necessary involuntary functions include things like heartbeat, breathing, digestion, and body temperature regulation. Studies have also linked the nervous system to the immune system, suggesting a possible correlation between ANS and autoimmune disorders.
In dysautonomia, the ANS does not respond to stimuli appropriately, either the parasympathetic or sympathetic nervous system can be hyporesponsive or hyperresponsive, often heightened by physiologic and psychologic stress. In those with mitochondrial dysautonomia, mitochondrial dysfunction is believed to cause the dysautonomia.
Since mitochondria provides a source of energy for cells, fatigue related diseases are common among mitochondrial myopathies. Nerve cells in the brain and muscles require significant energy and are depleted with mitochondrial malfunction.
Chronic pain isn’t all in the brain,
which is good news for sufferers
Complex Regional Pain Syndrome (CRPS), one of the most severe body pains, can occur after injury to a limb. The injury preceding the condition may be small, sometimes a bee sting. Large parts of the limb become excruciatingly painful and virtually untouchable – even a draft of air may be difficult to bear.
As with other chronic pains, many of us experts have been assuming the main problem for these patients is in the brain. But it recently emerged that the blood of patients with this condition carries specific immune substances, termed “autoantibodies”. These substances can probably cause pain by binding to peripheral tissues, prompting sensory nerves to misfire – although the exact pathway is not understood. Misfiring of sensory nerves results in a state where the central nervous system, including the brain, has become “wound up”.
In CRPS, peripheral nerves may thus play a role comparable to electronic transistors: with very low abnormal peripheral input generated by the autoantibodies, the nerves steer a massive central abnormality. Without trauma these newly discovered antibodies are probable harmless; the trauma-induced inflammation is required to render them harmful.
In fact, these antibodies may only be present for a limited time, during a “window of vulnerability”, in sufficiently high concentration to cause harm after trauma; the same trauma sustained either earlier or later may not trigger CRPS. The good news is that there are treatment methods, originally established for the treatment of other diseases designed to reduce or remove auto-antibodies, which can now been tried.
Fort Washington man with rare pain syndrome seeks relief from nine years of anguish
Move forward a few years: the RSD/CRPS, now plaguing Justin, inspired the Brown family to seek extreme measures in pursuit of a cure. In 2009, they flew to Monterrey, Mexico, to the Hospital San Jose Tec de Monterrey, where Justin underwent an experimental treatment, allowing doctors to induce a ketamine coma, essentially powering down his brain for five days.
“Basically, what it did for five days was shut down [his] nervous system,” Joan says, “almost like rebooting a computer, and then bringing him out of the coma, thus trying to reboot his nervous system so it stops sending the [pain] messages.”
Waking up from the coma was difficult, Justin says. He experienced hallucinations and a sort of mental jetlag; Joan and Rick had to repeatedly remind him who he was and where he’s from. They showed him old family photos to help reorient him.
“It was a horrific experience,” Joan says, “for him, for all of us. He went through the coma and came out of it and then he was doing better,” things seemed to be looking up.
But then another of many misfortunes struck him
“He got the swine flu in the hospital in Mexico,” Joan says, adding that an illness as serious as the swine flu typically wreaks havoc on someone suffering from RSD/CRPS, taking the victim’s already excruciating pain and amplifying it. The swine flu and the subsequent months of recovery “pretty much wiped out everything that the coma had done for him.”
It was back to square one. After six months — during which the family was living in of the hospital, sleeping on couches and air mattresses — it became clear that there was no fix for the RSD/CRPS in Mexico. The family headed home, and over time, weathered a number of other medical travails, including Justin’s fight with pneumonia and the removal of his gall bladder.
By now, Justin has endured nearly a decade of hell, to the point that even sleep is a source of terror and exhaustion for him. With a third of his life given over to unending pain, Justin says he now suffers from Post-Traumatic Stress Disorder; at night, the terrors overtake him.Integrating Biofeedback into Pediatric Pain Programs Brings Opportunities and Obstacles
Children experiencing pain from conditions ranging from asthma to trauma can benefit from the use of biofeedback. A new focus on interdisciplinary medical care is integrating biofeedback with other forms of care. As health professionals collaborate for optimal patient care and outcomes, both advantages and disadvantages appear for biofeedback clinicians.
In this issue of Biofeedback, an article explores the integration of biofeedback within the larger treatment of pediatric pain. Biofeedback services in pediatric pain are described and three case studies illustrate issues that arise in interprofessional care. Biofeedback can play an effective role in combination with other therapies, although it can be difficult to isolate its influence as one part of a medical treatment plan.
An integrated inpatient pediatric pain program has been designed in one clinic to treat children with chronic conditions, including complex regional pain syndrome, daily headache, and fibromyalgia. A typical program involves 3 weeks of treatment, in both individual and group settings, and incorporates biofeedback along with rehabilitation therapies, behavioral health services, medical subspecialty care, alternative therapies, and school. Biofeedback enhances the teaching of self-regulation skills and motor control. This program has shown clinically significant changes in the lives of patients.
A hospital outpatient pain program treats pediatric headache, post-concussion syndrome, and chronic pain. A pediatric neurologist evaluates the patient's medical needs and develops a treatment plan. This can include biofeedback, physiotherapy, occupational therapy, social work, and psychology. Patients learn to control breathing, heart rate variability, and temperature as stress recovery techniques to help them cope with or avoid pain.
For biofeedback clinicians, this team approach to care increases access to the patient, raises the consistency of therapy, and allows more immediate impact--knowledge gained from a biofeedback session can be incorporated into a physical therapy session the same day. Ongoing communication among team members can ensure that biofeedback supports the larger, unified aims of the program.
Integration also poses obstacles, including scheduling a patient around multiple providers, difficulties offering individualized biofeedback treatment protocols, and issues of reimbursement. However, the development of interprofessional care teams provides the opportunity to expand and strengthen the field of psychophysiology and biofeedback.
© 2013 L. Ryan
