Moving Past Pain: With Complex Regional Pain Syndrome

Katie Wamsley, Health ReporterLeave a Comment •Filed under Health

Anyone living with a chronic pain condition will tell you they are living with devastation on a daily basis.  Both the body and mind have a cause and effect on a person who is daily fighting for their freedom from Complex Regional Pain Syndrome (CRPS). This group of people who suffer from CRPS are called CRPS Warriors in the chronic pain community.  It affects a person’s behavior, thinking patterns, and it is known as the suicide disease.

Complex Regional Pain Syndrome (CRPS), formerly known as Reflex Sympathetic Dystrophy, was first described by Silas Weir Mitchell, a U.S. Army physician from the U.S. Civil War (1861-1865) in his medical journal  “Nerve Injuries” dated 1864.

Until you reach a point that you will do anything to get your life back.

This is my eleventh year battling this chronic pain disorder and I fight back everyday to have a more normal life.  CRPS Warrior Chris Pentico and I hope you will pass this article on to someone you know who is struggling with chronic pain.

Moving Past the Pain

Pentico enjoys collecting pennies and creates souvenirs.  You never know where you will find a lucky penny.  At the mall, in the park or at a restaurant.  He just places them in random places along his travels.

While engaging in hobbies pain behavior changes and symptoms begin to subside even if it’s temporary relief.  It then spirals into an attitude that if you’re going to be in pain, you might as well start working again/doing activities again.  CRPS Warriors face good days and very bad days, but it’s time to take back your life.

Fighting to be on disability wasn’t, easy nor is living from paycheck to paycheck.  I had attempted returning to school early in my diagnoses and I couldn’t make the grade through online studying (Ashford University).

Yet, I forced myself to go for nature walks with my cane.  I took my children, or I went by myself, and I eventually walked out of needing my cane.  I’ve fallen in grocery stores, out by a lake, in medical appointments and at home.  It’s nothing short of embarrassing especially when in the beginning I was only 27.

I had enough of being drugged by medications that only stabilized my pain as Physiatrist Dr. Reinhard, M.D. states: “This medicine will keep you at bay, so the pain doesn’t drive you crazy.”

I was a victim of CRPS, much like CRPS Warrior who goes by the handle “The Lucky Penny Guy” Christopher Pentico.

Pentico was wheelchair bound when we first met on a online support group.  We attempted to meet-up and start a group of support , however the unpredictability of CRPS has made this impossible for most of us living with this pain disorder.

There comes a point in every Pain Warrior that suddenly decides to themselves: if I’m going to be in pain for anything, I might as well get up and get going in life.  For me that meant working part time (under 20 hours a week) and last summer beginning again as a student in ACC (online schooling wasn’t for me).

Imagine not being able to hug your children because your clothing already hurts touching you.  Taking a shower soothes your aching limbs and a few hours later it hurts to have water touch your hands or to bathe the following day. When the pain flare strike you can’t always wash it away.

You look normal in your peer interactions, unless they see you in a pain flare. This might come across as a limp one day to constantly having to readjust your position in your chair or even scratching every which way-everywhere as your clothing just hurts to be worn.  It hurts to even scratch your body.

You might see a CRPS Warrior out trying to be fit one day, out for a walk or a jog, and then the next day using a cane (walker or wheelchair) as they are paying for being overactive one day to the next.

Pentico, understands this all too well.  Just days before this article he was out for a walk with his wife and suddenly the pain overcame him and he fell.  His fall cost him a broken arm.

What is Complex Regional Pain Syndrome?

CRPS is a multi-function pain disorder that affects the sympathetic, central and peripheral nervous system. This neuropathic pain disorder has to be caught early and treated early for any hope of recovery.  If at any point of the care therapy is interrupted, CRPS becomes a long lasting for life kind of disease.

Not only is CRPS considered like a cancer as it manifests toxins that destroys the neural pathways, it engages in over producing free radicals that hinders neuroendocrine responses that cause inflammation (European Journal Of Orthopedic Surgery & Traumatology).  It feels like a sunburn with needles, ouch.

Patients complain and display a wide range of pain behaviors and symptoms. From buzzing, causalgia (burning), vasoconstriction and atrophy, one end of a limb might be sweating, while the upper extremity will be freezing.

Dysesthesia, the nerves can activate what feels like rain drops when the person is inside a building and is not getting rained on at all.

Allodynia, hyperalgesia-hyper sensation to touch.  Cold allodynia-sensitivity to the cold and Dysesthesia-no touch at all with the sensation of pain.

These weird sensations and horrific pain is very counterproductive to one’s daily living experiences.

Vasoconstriction (spasms)  and  Insomnia (Emotional Disturbance)

Pain changes within the limbic system, it devastates a persons short-term memory, which causes difficulties in concentration, and creates irritability.

History and Treatments

The first descriptions of CRPS were documented during the U.S. Civil War (1861-65) by Silas Weir Mitchell MD, a young US Army contract physician, who treated soldiers with gunshot wounds. In his book “Gunshots Wounds and Other Injuries,” he described pain which persisted long after the bullets were removed from the bodies of soldiers.

Calmarett Scrambler Therapy/Sequential Simulator

Calmarett Scrambler Therapy is a non invasive treatment for those who are too sensitive to medications.  Sequential Simulators (SS) go beyond a TENS unit for treating chronic pain.  SS can send a current that relieves sore muscles and then can retrain the brain in firing the nerves in a more correct manner.

Exposure Therapy

Sometimes the only way out of pain is by going through more pain.  While there is a number of ways one can chose their method of exposure it might be as easy as activating upon a somatic point of view.  Desensitizing the affected areas of hyper-tonic to hypo-tonic areas of the body, such as rubbing the area affected with a feather to a rough sponge.

Diagnostic testing for CRPS is definitely a exposure therapy experiment that is also painful. Which is called the Quantitative Sudomotor Axon Reflex Test (QSART test)  It measures the quantitative amount of sweat from one limb to another in comparison.  My body had stopped sweating from one limb compared to the other.  These suction cups with electrodes are placed on your body and with a strong current it collects sweat.

I was invited to a one time Lakota and Cherokee sweat lodge experience. Within their Native American practices my body experienced profound release.  My entire body sweat from head to toe. A spiritual connection occurred between my soul and my body reuniting.  After the sweat we celebrated eating in raw traditional foods (eating raw meat was really gross, but I experienced it).

Although, I was sworn to secrecy about the “how” they do their practices. I hope to be able to experience this healing method sometime in the future. By allowing fellow pain warriors to have this awesome experience for themselves as well.

Constant detox has also been a vital role in clearing free radicals on a weekly basis.  In turn creating more movement and less intake of calories while increasing vegetables and fruit with less carbs has made a difference in intestinal health and weight loss.  I’ve dropped in clothing sizes (six sizes) and have gained more muscle mass (the scale hasn’t changed too much); however, I look and feel better most the time.

Want to see more on detox, see my article on Squashing Migraines.

Arapahoe Pinnacle • © Katie Wamsley, 2017