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More Than a Feeling: New approaches to treating complex regional pain syndrome are helping redefine

June 15th, 2009 (05:38 pm)

From the desk of thematrix777: This is a story of people who live their everyday life with CRPS (RSD).  I am re-printing this story in hopes it will give someone else the will to keep trying...

No matter how bleak your life may feel at this very moment, if you give up and surrender, "IT" WINS..."IT" can be your  constant pain, your CRPS, your RSD or any other condition that keeps you from improving your quality of life. 

I am not just another person trying to perk you up. Most of you know my story. I suffer with you. I cry, scream, and I ask GOD "Why Me"?.  I have RSD (Reflex Sympathetic Dystrophy), neuropathy, cervical and lumbar issues that are inoperable in addition to many other "minor" aches and pains that come just from living.

Are you looking for an excuse to give up or are you a winner? I have plenty of reasons (or excuses) to give up. I have a whole list of them just in case you don't have enough of your own. lol 

But I won't! give in to them.  I decide how to live my life, not my illnesses. Do I need help? Yes, I do require help, but I am not embarrassed or ashamed to ask when I need it. However, I try to do it myself first,  If I can't do it, then I ask for help.

Are you a quitter? Do you want a life? How hard are you willing to work for it? If you not willing to work and I mean WORK HARD, don't waste your time reading this article. This story is for winners..........................

No one is promising a magic cure. In fact, there is no cure for my RSD. it is chronic, progressive and very painful. But your mind is a powerful weapon if you learn how to use it to your advantage.

I choose to live my life with dignity, self-worth and enjoy every day of my life that GOD gives me.

“I don’t let the pain define who I am anymore,” Max Sokolnicki

Max Sokolnicki knows all too well how the pain of complex regional pain syndrome (CRPS) can take over your life. Sokolnicki, 52, of Chesterfield Township, MI, used to be a project manager in a technical
training firm in the automotive industry before a botched hip replacement surgery in 2002 damaged his sciatic nerve and triggered.

Today the former soccer player and coach is unemployed, lives on disability, and uses a cane or wheelchair to get around. The pain is centered in his right foot, he says, which feels as if it is surrounded by a block of ice and is often so cold that it burns. That’s only part of the sensation, however; the other
part feels like “some kind of small animal chewing at my foot as someone tries to peel my skin back.” While he has found some relief with neurostimulation, he says he is never pain free.

Molly Skipper, who also suffers from CRPS, spent her 16th birthday bedridden, rocking back and forth in pain, terrified that doctors were going to amputate her leg. All because a few months before she’d slipped and fallen, banging her left knee on the handle of a kitchen cabinet.

It’s an injury that in most people would have resulted in nothing more than a bruise and some minor discomfort. But for Molly and thousands like her, a bump, fracture, or surgical procedure can turn into intense, unrelenting pain that sends them careening from doctor to doctor in search of relief.
These people have a condition called complex regional pain syndrome (CRPS), previously known as reflex sympathetic dystrophy (RSD) or causalgia (from the Greek words for “heat” and “pain”).

Relatively rare—it affects an estimated 26 out of every 100,000 people—CRPS is up to four times more common in women and affects people of all ages, including children as young as three.

Traditionally, anesthesiologists and other pain specialists have treated CRPS. But it is first and foremost a neurological condition, according to Anne Louise Oaklander, M.D., associate professor of neurology at Harvard Medical School in Boston and an expert on the disease.

Her research has begun to unravel the specific neurological mechanisms that may be at work in CRPS. Thus, she says, more neurologists need to be trained to diagnose and treat this devastating
condition as a neurological condition, not a pain condition.

“Having the pain reformulated as a neurologic problem opens the door to the kind of approaches neurologists are expert at,” she says. “Not just giving pain medication but curing
the underlying problem.”

The primary symptom of CRPS is pain out of proportion to the initial injury that continues long after the trauma heals. The pain More Than a Feeling.  New approaches to treating complex regional pain
syndrome are helping redefine “mystery pain.”


n addition to hypersensitivity to touch and ongoing pain, patients with CRPS may have one or more of the following. (No two patients are the same, however, making diagnosis difficult.)
  • Swelling. The leg or arm may swell so much that that the skin appears tight and shiny and may even begin to break down.
  • Excessive sweating.
  • Change in skin color. The area may turn red, blue, or purple.
  • Change in skin temperature. The area may become very hot or very cold, depending on blood flow.

Muscle changes, such as tremors, weakness, joint stiffness, or inability to control movement. This is likely related to dysfunction of nerves in the spinal cord that control movement. typically occurs in the hands, arms, legs, or feet, but can occur anywhere in the body. Left untreated, it can spread to other parts of the body, most commonly the “mirror limb” opposite the one where the damage first occurred.

The pain is sometimes described as “burning,” and may be so bad that patients thrust the affected limb into buckets of ice or drape it in wet, cool cloths to stem the sensation.

Others, however, can’t tolerate any cold and find their pain worsens in the winter. Over the years, doctors have used numerous tests to definitively diagnose CRPS, including X-rays, bone scans, MRI, thermography (which measures heat), and electromyogram (which measures nerve conduction).

Sometimes these tests can help; but just as often, they can all be negative even in someone with CRPS. Plus, the testing itself can be extremely painful to someone with the condition. Basically, then, CRPS is diagnosed based on the patient’s description of the symptoms, a comprehensive medical and
physical history, and the exclusion of other conditions. That’s one reason the condition remains significantly under-diagnosed even by neurologists and pain specialists, says Joshua Prager, M.D., who directs the Center for the Rehabilitation of Pain Syndrome at the University of California, Los Angeles.

In fact, a survey by the support group American RSDHope (rsdhope.org) found that people with CRPS often see five or more doctors before receiving a diagnosis. Patients are often told they are depressed, anxious, or have some other psychiatric condition; suspected of trying to get drugs; or accused of “malingering,” says Dr. Oaklander.

The reality, however, is that the pain itself typically causes mental health issues. The RSDHope survey found that 67 percent of people with CRPS had considered suicide. The best option to ensure you get the correct diagnosis, says Dr. Oaklander, is to see a peripheral nerve specialist, a common neurology subspecialty.


Every time you touch something hot, bang your shin, or get a paper cut, the communication network of your body switches into high gear. The pain signal travels along axons, fiber-like extensions from neurons that function like individual wires in a large fiber optic cable. The axons use special chemicals called neuropeptides to transmit the pain signal to nearby neurons. Eventually, the signal reaches the spinal cord and shoots up to the brain where it is “read.” All in a split second, of course.

Axons come in all lengths, some longer than your leg. Until recently, researchers focused on large axons, the kind covered in fatty sheathing called myelin (hence the name, “myelinated fibers.”) As the tools used to observe nerve fibers have improved, researchers have been able to identify very tiny axonal fibers in peripheral nerves like those in the arms and legs.

More recently, Dr. Oaklander and others examined skin biopsies from patients with CRPS and found significant damage to these small-fiber axons. In some cases, they found, even the slightest injury to these fibers can cause misfiring and the  release of excess neuropeptides. Essentially, the nerve fibers
become stuck in the “on” position and burn out, leading to the numbness and loss of sensation people with CRPS often describe in the originally injured area. What appears to happen next is that other nearby fibers step in and also begin overfiring, says Dr. Oaklander. The result is hypersensitivity and chronic pain.
Dr. Oaklander’s finding of small-fiber axonal damage is important  because it helps convince clinicians that CRPS is a real neurological condition. It also helps patients get approval for disability benefits or even certain medications, something that is difficult if no clear cause for the pain can be seen. “So being
able to show damage with an objective test is critical,” says Dr. Oaklander.

Functional MRI studies, which image blood flow to different parts of the brain in response to various stimuli, also show underlying changes in people with CRPS. A study published in November 2008 in the journal Neuron found significant alterations in the white matter of the brain, the part that transmits chemical messages between neurons, and shrinkage in the neuronal area, or gray matter. The changes are likely due to the pain itself, says Dr. Oaklander, since other MRI studies find such changes reverse when the pain improves.

One of the earliest written descriptions of CRPS comes from S. Weir Mitchell, a Civil War doctor who was struck by the severe,persistent pain experienced by some soldiers even after their wounds healed—pain that occurred with just the lightest touch.

“He is…nervous and hysterical to such a degree that his relatives suppose him to be partially insane,” Dr. Mitchell wrote of a young man who had been shot at Gettysburg. “It is difficult even to examine him properly on account of his timidity, and his whole appearance exhibits the effects of pain…and want of rest.”

When Molly Skipper was in the midst of her CRPS episode, she was lucky if she averaged four hours of sleep a week. Her pain began about a week after she fell, just as she started her dream job at a newspaper in Meridian, MS. Within a few days she was on crutches. Then she couldn’t walk at all. “I couldn’t touch my leg, it was so painful,” she recalls. She saw numerous doctors, including a psychiatrist. Initially, the doctors thought she was imagining the pain. They came to believe it was real, however, when she was still in agony even after five nerve blocks, a procedure in which a local anesthetic is injected near the nerve. At one point she was taking 13 different medications and still found no relief. Doctors told her she would never walk again.

Finally, in the spring of 2006, her father’s coworker learned about Dr. Oaklander and her practice at Massachusetts General Hospital. Molly’s mother, Leslie Doolittle, called the doctor’s office and left a message. Dr. Oaklander returned the call on a Saturday morning and, after listening to a description of Molly’s condition, said, “I think I can help your daughter.” Molly’s mother burst into tears.

Continued in Part 2 which will go through the Molly's therapy at the hospital as well as meeting a few other patients along the way.

"Where there is a will, there is a way."