Monthly Archives: August 2007

‘Beyond Praying for Death’: A PA Battles Constant Pain

Beyond Praying for Death’: A PA Battles Constant Pain
By Shelley L. Wood, PA-C, PhD

On a mid-September Sunday, two days after my 52nd birthday, an unusual burning pain began in my left forearm extending to my palm. I made the presumptive diagnosis of herpes zoster. Later, as I sat at my computer, just gently resting my palm on my desk triggered a lancing pain that took several minutes to diminish. I searched for typical zoster lesions and found none. Sleep was disrupted that night by relentless, burning neuropathic pain from axilla to palm.

Two days later, I developed my first lesions on my back in the T1 dermatome. They were painless. That evening after work, I went to a local urgent care clinic. Thinking that this pain would be of short duration with an antiviral, I returned to work the next day.

By the end of Wednesday, finding no relief with the antiviral and with hydrocodone, I was exhausted from the constant pain and the lack of sleep. Zoster lesions occurred in the T1 and T2 dermatomes down my arm and across my back. (Dermatomes often overlap.) My supervisor kindly told me to stay home, which is a dual-edged sword, because although a few of the scheduled morning patients would be seen by a newly hired PA, most of my patients would be scheduled into my already full schedule over the next two weeks. For that reason, I returned to work two days later and implored a PA student to work with me and type my progress notes. Because of the sedation that can be associated with the gabapentin I had been prescribed, I was titrating up the dose gradually to try to achieve some pain relief while still being able to work. But before I reached maximum dose, the pain ended as abruptly as it had began three weeks earlier.

I was relieved to be over that saga of my life. Of course, I had no idea of what was to happen later.

A Temporary Reprieve

At first myalgias anteriorly of all four limbs came and went intermittently. By mid-November, though, the aching anterior pain had increased in my legs to the point that I couldn’t get up my townhouse stairs without using the banister. Concerned about polymyalgia rheumatica and worse, I returned to the urgent care center two months after my first zoster lesions. Feeling as if I must have an ESR of at least 70, I was surprised (and relieved) that it was 4 (normal is up to 20).

However, that was the beginning of, “Well your tests are normal,” combined with increasing pain that would plague me. My internist repeated the ESR and also performed a CK; “Well, they’re normal. Let’s do an EMG.”

In the meantime, I decided to utilize the expertise of a rheumatology fellow at my work; he offered to get me an appointment at the University. Knowing that the University Medical Center is very busy with patients, I was surprised that the secretary paged me that afternoon and offered to schedule an appointment; I was less surprised that the appointment was three months away. Nonetheless, a few days later, the rheumatology fellow left a message that there had been a cancellation and I could be seen the next week. Feeling that this would surely reveal an answer, I was disappointed again that all the blood tests were normal. I needed a diagnosis and treatment. In December, the constant aching pain increased to a constant burning pain, still anteriorly in all four limbs. Because of the pain, I avoided such normal activities as putting anything on my lap and crossing my legs.

I went to a neurologist for follow-up of the EMG, which I already knew would be normal. Because three doctors had evaluated me by then, the neurologist felt compelled to order a cervical MRI to evaluate for anterior motor neuron disease. The MRI, of course, was normal. He prescribed muscle relaxant. When that didn’t relieve my pain, he advised tonic water in case the pain was secondary to “muscle cramps,” which didn’t fit my burning anterior limb pain.

Another Problem

About a month after the zoster episode had begun, I had also developed a constant pain in the tuberosity of my left fifth metatarsal�a new problem. I searched out a podiatrist close to my home, who diagnosed a stress fracture of my metatarsal. My X-rays were, of course, “normal.”

A stress fracture was the only diagnosis I would have come up with as a primary care PA, but I thought it was unusual, since I’d stopped my walking exercise during the zoster pain. He treated me with a surgical boot, and the foot pain decreased in a month. I began having some mild lumbar pain beginning in November, but I didn’t think much of it. I’d had worse pain in the past secondary to internal disk disruption, but I had learned to avoid this pain by not torquing my back.

The day before Christmas, on my way to visiting my parents, I walked seemingly for miles in the airport, wearing hiking boots in case I returned home to snow. On Christmas Day at my parents’ house, when I got out of bed, pain began immediately in my left foot from my heel to the metatarsal region. Plantar fasciitis, I thought. My parents were both coughing severely, so we all went to the local urgent care center the next day, where they received antibiotics and I got crutches.

When I got home from visiting my parents, trying to work at a large medical center on crutches was a challenge, which I ended up doing for two months. I became very grateful for the rides and support from family, friends and colleagues. It was a change from my lifelong independence. The podiatrist decided that the recurrent metatarsal pain was secondary to flat feet and a subluxating cuboid, which caused plantar fasciitis after my long airport walk. Having never had foot pain before, I’d never even examined myself for flat feet, which is impossible to accomplish. He advised orthotics but delayed casting my feet for two weeks; making the orthotics took another two weeks. I was frustrated that he hadn’t examined my feet better in October and advised support shoes and orthotics then. That would have prevented the plantar fasciitis and crutches, which added additional pain to my increasing four-limb pain.

A nurse at work, who had experienced arthritis foot pain for years, provided more information about the best support shoes than I’d even known. I didn’t mind having to wear “grandma” shoes two decades before I had expected�as long as they prevented further foot pain. Eliminating any source of pain had become a primary goal in my life.

Finally, a Diagnosis

In early February, a doctor whom I’d been seeing for over a year for prolotherapy to my neck from a previous rappelling injury did quantitative sensory testing (QST) of my arms—a test I’d not heard of previously that was more sensitive than the traditional EMG. QST has become commonplace in clinical neurophysiology units; measurement of the thermal and vibratory senses provides an estimate of the function of sensory small and large fibers.

The physician knew that I had a high pain tolerance. She told me that the QST results were consistent with complex regional pain syndrome type 2 (CRPS-2), presumably secondary to the herpes zoster. CRPS, previously known as reflex sympathetic dystrophy and other names, had been reclassified in 1994 as CRPS-1 (RSD) and CRPS-2 (causalgia or definitive nerve lesion). That was the good news and the bad news. She said, “Now no one can doubt that you’re definitely in pain.”

I’d ignored the subtle signs of CRPS for the past four months because of ignorance—the increased mottling of my skin, the mild edema and skin thickening of my wrists and ankles.

In mid-February, I began awakening every two to three hours with terrible pain in all four limbs. The pain was not only constant burning pain, but also a lancing, stabbing pain in my upper arms. CRPS can suddenly crescendo. I called in sick and tried to cope. In previous years, I’d experienced such severe pain from endometriosis and migraine headaches that I’d prayed to die; mercifully, that pain would diminish in a couple of hours. However, this neuropathic limb pain was relentless. I found a dark side beyond praying to die: There’s a level of desperation I’d never known before.

Pain in Perspective

But there was another interesting level to that pain: While waiting for the hydrocodone to even slightly decrease my pain, I’d think of the millions of impoverished people in the world who have no analgesics, nor food, nor even a decent bed. An estimated 65 million Americans suffer from chronic pain. That’s probably an underestimation. The suicide rate among people suffering from untreated pain is incalculable.

Because I was supposed to be making my third medical trip to Haiti in March, I thought a lot about the poorest nation in the Western Hemisphere with such terrible conditions and unbelievable suffering.

When I called in sick again, a nurse practitioner called me back to see if I would be coming into work that week. I could tell that she’d assumed I had a short-term viral illness. In tears, I told her that I had RSD. She responded, “You’ll never get better.” It was the worst thing anyone could say. We had all seen or heard of patients who lived with chronic, unremitting RSD pain. I knew that I’d live through this, but with how much pain and for how long?

I returned to my prolotherapy doctor in tears because of the increasing pain. She knew I needed more help than she could give. She began calling pain specialists whom she knew, asking them about doing sympathetic blocks to my limbs. The first specialist was going on vacation for two months. The second doctor was too busy. However, the third doctor offered to see me that day and try an alternative therapy to a block. This physiatrist discussed with me doing percutaneous neuromodulation therapy (PNT). PNT is FDA-approved and involves the targeted delivery of electrical stimulation directly to deep-tissue large nerve fibers near the spine. This appears to induce a lasting neuroplastic change in the dorsal horn of the spinal column, restoring a more normal response to non-noxious stimuli and improving the patient’s ability to function.

At that point in time, he could have offered to shoot me and I would have accepted. So I desperately tried it. After my first 30-minute treatment, I returned home hoping and praying this new treatment would help.

Pain on Top of Pain

That night, I kept touching my upper arms, thinking that the lancing pain actually was less intense. After four treatments, the physiatrist told me that he didn’t think I had sympathetic pain. I convinced him that while the pain in my legs hadn’t decreased, the pain in my arms was improving. That’s when we both realized that I probably had two sources of neuropathic pain.

After six PNT sessions, my arm pain was remarkably improved, but my leg pain was unchanged. The physiatrist ordered an MRI of my back, which revealed L5, S1 internal disk disruption, and he recommended trying a steroid epidural. I was willing to try anything that would make walking without increasing pain possible, but worried that L5, S1 didn’t correspond with my leg pain.

Unfortunately, the epidural caused intense pain in the sacrum, with bilateral radicular-type pain posteriorly. Pain on top of pain had been my life for months.

That night I called a good friend, Lori, who had previously worked as a PA in a low-back clinic for a decade. I wanted to know when the sacral pain would end. Lori avoided answering the question. The next day, there was no position without pain. I called the clinic, only to find out that the physiatrist had Fridays off. His medical assistant wanted me to come to the clinic and see a physical therapist about an RS-4i muscle stimulator.

“You don’t understand!” I said. “I’m in too much pain in any position, let alone to drive to a clinic more than 50 blocks away.” Surprisingly, she replied that she would arrange to have a representative bring the device to my home. Even more surprisingly, the representative called shortly thereafter and made arrangements to come that morning. However, she became stuck for a while in a snow bank, and then had to go to the hospital to do her day’s work there, so she didn’t arrive until evening.

The RS-4i stimulator is different from the TENS units that have been used for years in that it provides, through electrode pads, 15 minutes interferential stimulation for acute and chronic pain; it also provides 30 minutes of muscle stimulation for relaxation of muscle spasm, prevention or retardation of disuse atrophy and increase of circulation. The result is a release of endorphins and, thereby, pain relief.

That night, my friend Lori and her husband, Jeff, came over. They brought food and provided music—they’re professional musicians, as well. Nourishment was needed. Music distracts from pain and helps heal. Over the ensuing weeks, the sacral and radicular-type pain from the epidural decreased. The burning, lancing pain of my arms resolved with PNT. The burning pain of my anterior legs was believed to be secondary to my sacroiliac joint; it has decreased to a tolerable level with prolotherapy and medication.

What I Have Learned

Remember our important responsibility in relieving pain. We must get patients in severe pain from the proverbial edge of the cliff.

Keep in mind that degenerative joint disease can cause significant pain for years—especially in adults over 50�before it shows on X-rays. Many people can’t take nonsteroidals because of gastrointestinal problems.

Shelley L. Wood is a PA in Peoria, Ariz.




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Can medical miracle relieve life of pain?


Can medical miracle relieve life of pain?

Woman to undergo experimental treatment

Posted by the Asbury Park Press on 08/29/07

BY ERIK LARSEN
COASTAL MONMOUTH BUREAU

OCEAN TOWNSHIP — Imagine that the sharp pain caused by anything from a stubbed toe to a surgeon’s scalpel never went away.

Welcome to Judy Hopkins’ life.

The 25-year-old West Allenhurst resident suffers from a nightmarish rare disorder called Reflex Sympathetic Dystrophy Syndrome, also known as Complex Regional Pain Syndrome, a chronic neurological disease that leaves its sufferers in constant pain following physical trauma or surgery.

Hopkins, once a dancer and high school basketball player, first experienced symptoms of RSD in 1998, at age 16, after undergoing surgery on her right foot to remove shards of broken glass she had stepped on while working as a lifeguard.

In the years that followed, operations to correct intestinal issues have left Judy Hopkins a weak, homebound insomniac, downing 25 to 30 prescribed pills daily while wearing a Fentanyl transdermal patch to manage what has become excruciating pain. She is cared for by her parents, Robert and Linda, with whom she lives.

After having exhausted all treatment options in the United States, Hopkins is at the top of a two-year national waiting list to travel to Germany for an experimental procedure so dangerous the U.S. Food and Drug Administration does not allow it here.

“Some people can go their entire lives and never know they have (the disease),” Judy Hopkins explained as she sat in her dining room one recent afternoon. “One of the scary things is that anything, from a minor to major trauma to the body, can trigger it. If you are lucky, you can get it into remission.”

That’s what Hopkins’ parents are praying for as they prepare to take her on what will be an exhausting and emotionally draining journey before the end of the year to undergo the experimental procedure in question, called a “Ketamine Coma,” at the Klinikum Saarbruecken in Saarbruecken, Germany.

Medically induced coma

Once there, Judy Hopkins will be put in a medically induced coma for five to seven days and administered dosages of up to 900 milligrams of ketamine, enough to cause brain damage, kill her, put her RSD into remission or do nothing at all.

Dr. Robert J. Schwartzman of Drexel University’s College of Medicine in Philadelphia, perhaps the leading RSD expert in the country, has advised Hopkins to put her affairs in order, her family said.

The hope is that the high doses of ketamine will reset her malfunctioning central nervous system, which for lack of a better term, is stuck in a kind of repeating loop, still firing pain receptors, unaware the body has long since healed from the trauma that first triggered the pain. If successful, the effects of the treatment should be immediate.

“One of the things they’re finding, it (the treatment) doesn’t last as long as they had anticipated, even if it puts you in remission, there’s no guarantee it will last,” Hopkins said. “The fact is, I’m now full-body RSD-CRPS-I, that’s the worst category. These things are unfortunately counting against me. It’s really a game of chance.”

But given the amount of pain — she has been unable to leave her house in recent months except for doctors’ appointments and relies on a cane to walk outdoors when she does — she believes this treatment is her last hope.

The cost of travel to Germany and the treatment itself, which is not covered by any insurance carrier, is estimated at between $35,000 and $50,000, and friends of the family have started raising money to offset expenses.

Traced to Civil War

Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association, established in 1984, said the disease was first identified in Civil War veterans.

“A neurologist in Philadelphia, Silas Weir Mitchell, was treating Union soldiers who were complaining of stabbing pains from injuries that had healed,” Broatch said. Mitchell first named the disease causalgia.

Given the limits of medical science, more than a century would pass before the pathology of the disease was better understood and treatment options explored. At the beginning of the 21st century, the origins of the disease remain a mystery to the extent that Judy Hopkins suffered with RSD for four years and saw multiple doctors before she was correctly diagnosed by a neurologist in August 2002.

“I wasn’t able to complete college,” she said. “After my second year, I had to have multiple surgeries. From that point on, my life really changed. I used to do things, I went to school, I went out clubbing, but I would come back to my room and cry all night . . .”

After her sophomore year of college, when she received the RSD diagnosis, her doctor and her parents told her it would be impractical for her to continue at college.

“It still baffles me that putting a sock on makes me cry,” Judy Hopkins said.

“You asked us how this affected our family — I can’t hug my daughter, I have to let her hug me,” Robert Hopkins said. “If you touch her left arm, she’ll go through the roof. That’s just one impact. I don’t want to hurt her.”

“I don’t find any comfort in dwelling on my misfortune,” Judy Hopkins said. “I’m very fortunate my parents have the money to cover my medical expenses. It’s become my line, when someone asks me how I’m doing, I’ll say: “Can’t complain.’ If someone wants to hug me or touch me, I would rather grind my teeth — I actually chipped my tooth once — than let them know they’re hurting me.”



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Vitamin C Prevents Fracture Complication


Vitamin C Prevents Fracture Complication

By Kimberly Beauchamp, ND

Healthnotes Newswire (August 16, 2007)—Wrist fractures can be serious business, such as when they lead to a condition called complex regional pain syndrome. According to a new study in the Journal of Bone and Joint Surgery, the syndrome might be avoided by taking vitamin C.

Complex regional pain syndrome most often follows an injury to a limb. Although the nerves themselves are not directly injured, symptoms are related to changes in nerve function.

If it’s not treated early, complex regional pain syndrome can lead to irreparable muscle damage, causing the fingers or toes to stay in a fixed position. While medications and physical therapy can ease symptoms, preventing the syndrome altogether is preferable.

Earlier studies have shown that vitamin C can help reduce the likelihood of developing complex regional pain syndrome following a wrist fracture. The new study aimed to determine the optimal dose of vitamin C to reduce risk.

After being seen in an emergency room for a wrist fracture, 317 people were given vitamin C (200 mg, 500 mg, or 1,500 mg per day) and 99 people were given a placebo for 50 days, starting the day of the injury.

A total of 18 people, all elderly women, developed complex regional pain syndrome within one year after fracturing a wrist. Those women whose casts caused them discomfort were more likely to suffer from the syndrome. Taking 200 mg of vitamin C wasn’t enough to significantly reduce the risk developing complex regional pain syndrome, but taking 500 mg or 1,500 mg decreased the risk from 10% in the placebo group to just under 2%.

“By scavenging free radicals, vitamin C might help speed healing time and prevent future inflammatory conditions,” says Dr. Clara Barnett, a naturopathic physician and licensed acupuncturist practicing in New York City.

The researchers concluded, “The present study confirms that vitamin C can have an inhibiting effect on the occurrence of complex regional pain syndrome after wrist fractures. We recommend 500 mg of vitamin C per day for 50 days after a wrist fracture because we believe that such treatment may prevent complex regional pain syndrome.”

Dr. Barnett added, “Vitamin C is a low-cost, safe supplement; it’s worth a try for the suffering it could help prevent.”

(J Bone Joint Surg Am 2007;89:1424–31)

Kimberly Beauchamp, ND, earned her bachelor’s degree from the University of Rhode Island and her Doctorate of Naturopathic Medicine from Bastyr University in Kenmore, WA. She cofounded South County Naturopaths in Wakefield, RI. Dr. Beauchamp practices as a birth doula and lectures on topics including whole-foods nutrition, detoxification, and women’s health.




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Living life with pain, on camera

Living life with pain, on camera

01:00 AM EDT on Sunday, August 12, 2007

The Carolyn Lenihan Video holds little promise for major hits on YouTube.

The video is about three minutes long, and the production values alone put it somewhere below a 1968 home movie shot by a tipsy grandfather at a backyard barbecue. The movement is slow, the transitions awkward.

Even Lenihan, who stars in the video with her car, pans this vapid piece of work.

“It’s so odd to me,” she says.

Odd, because she didn’t know it was being shot. But also odd because of the subjects the stalking photographer focused on.

“I didn’t understand that leaving my house to get a haircut was such a big deal,” says Lenihan after a recent viewing of the video on her home computer in Westerly.

There’s something creepy going on here. Lenihan has been trying for years to prove she is disabled by “reflex sympathetic dystrophy,” which is also called “complex regional pain syndrome.” It is a disorder that is all about pain that gradually radiates through the body after an injury.

“Four hours after I get up, my legs feel like they have been run over by a car,” she says.

But as severe and controlling as the pain is, and as certain as the medical diagnoses have been, she continues a long and frustrating struggle to prove that those crushing feelings in her legs and all the other pain that is constantly with her have left her disabled.

She has been dealing with the pain for 16 years. It is 10 years since she has been able to pick up a brush and continue her art career. And it is more years than she cares to remember that she has been going to Workers’ Compensation Court, in the Garrahy Judicial Complex in Providence, for round after round of legal sparring with Aetna Insurance.

It was in court earlier this year that she saw the video and realized that someone had been following her, slinking about with a camera to catch her doing something she shouldn’t be able to do.

There are possibly worse jobs than being a hired video hit man for an insurance company, but none come immediately to mind. Imagine, sneaking about on the fringe of someone else’s life, searching out places to hide and point a camera and turn an unguarded personal moment into a genuine insurance industry “gotcha.”

Lenihan says the video seems to be creeping out her friends more than her. She watches it and can’t figure out what it could possibly prove other than that there are few limits on what an insurance company will do to shoot down a claim.

The video shows her walking into Ray’s Hair Cutting, in Westerly. It shows her coming out and getting in her car. It shows her going to a hardware store, a TJ Maxx. It shows her bringing her right hand over left to close the car door because of the pain. It shows her gray Hyundai a lot. It shows her smiling once, which could be suspect. It doesn’t show her running wind sprints or lifting hay bales.

She says it sometimes seems in the long hassle over her disability case that insurers would prefer that she simply take to her bed with a TV remote and assorted medications.

“But you have to make parts of your life happy and do things you want to do,” she says.

The pain has been with her so constantly and so long that she knows nothing else anymore. So she lives within it.

Her friends call her Tippy, but only her good, close friends. The name comes from the brain surgery she had in 2001 to deal with trigeminal neuralgia, a nerve disorder that causes additional pain on the left side of her face.

“I never regained my equilibrium,” she says. “I bounce off the walls dozens of times a day.”

She holds on to those close friends and the small pleasures of the gardens in her backyard that yield raspberries and strawberries and apricots. In the interest of full disclosure, I left her house with a container of raspberries and some very good apricot cobbler.

She is never still. She is constantly shifting about, trying to find the position that will make the pain a little more bearable. She has to lie down for a few hours every afternoon. And she is wired. She wears a small machine on her waist that sends out electrical impulses to ease nerve pain.

She’s funny too. She once dated an Elvis impersonator, while she was an art student in London, and still gives a special place to the near life-size Elvis cutout in her basement.

Being funny helps when you’re dealing with an insurance company and you find out that a guy’s been shadowing you with a camera. Lenihan has another court date later this month, and she thinks this actually might be the last one, that the evidence that she is disabled is real and easily outweighs whatever that video was supposed to show.

“It’s a grotesque waste of court time and money,” she says.

There is no cure for reflex sympathetic dystrophy. Pain is part of the rest of Carolyn Lenihan’s life. And while she has found, much to her surprise, that there is no such thing as a “permanently disabled” person in Rhode Island, she wants to take her case to the limit. She wants her due.

“I’m a loudmouth and I fight,” she says. “No one will do it for me — that’s been my motto for the last 16 years.”


bkerr@projo.com







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3 Videos on Accupuncter for RSD…


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