What is CRPS or Complex Regional Pain Syndrome

A gradual loss of mobility can put a girl in denial. Mine is accompanied by the most blinding pain. And the decline continues to progress.

I was injured, but how did the loss of mobility and progressive paralysis get to this point?

Upon my neurology appointment this past Friday, the doctor asked me if I was diagnosed with the condition CRPS... and I knew it sounded familiar.

My new spine surgeon, as well as my pain management doctor, have diagnosed me with CRPS or Complex Regional Pain Syndrome. The symptoms are exactly what I have. So we will now be leading the treatment phase with this in mind. Unfortunately, there is no known cure. It began with the concussion, was compounded with the upper and lower spine surgeries done at the same time, etc. So, it seems there may be an answer here as to the "why". Now we need to figure out "how" I can live as normal a life as possible with this. "What", besides my next surgeries of Spinal Cord Stimulator and Rhizotomies, will improve my quality of life? Is it possible to ever walk again? Will I ever be free from debilitating pain? You know, little things like that. If my current in-home physical therapy does not help, I will have a fusion of levels C7-T2 as well as other possible levels not being helped by current surgeries or treatments. Also, how do we calm the tremors? How can we stop the progression of this condition as it continues to spread throughout my limbs?

Here is information I pulled from WebMD.

Complex regional pain syndrome (CRPS), also called Reflex Sympathetic Dystrophy Syndrome, is a chronic pain condition in which high levels of nerve impulses are sent to an affected site. Experts believe that CRPS occurs as a result of dysfunction in the central or peripheral nervous systems.

There is no cure for CRPS.

What Causes Complex Regional Pain Syndrome?

CRPS most likely does not have a single cause; rather, it results from multiple causes that produce similar symptoms. Some theories suggest that pain receptors in the affected part of the body become responsive to catecholamines, a group of nervous system messengers. In cases of injury-related CRPS, the syndrome may be caused by a triggering of the immune response which may lead to the inflammatory symptoms of redness, warmth, and swelling in the affected area. For this reason, it is believed that CRPS may  represent a disruption of the healing process.

What Are the Symptoms of Complex Regional Pain Syndrome?

The symptoms of CRPS vary in their severity and length. One symptom of CRPS is continuous, intense pain that gets worse rather than better over time. If CRPS occurs after an injury, it may seem out of proportion to the severity of the injury. Even in cases involving an injury only to a finger or toe, pain can spread to include the entire arm or leg. In some cases, pain can even travel to the opposite extremity. Other symptoms of CRPS include:

    • "Burning" pain
    • Swelling and stiffness in affected joints
    • Motor disability, with decreased ability to move the affected body part
    • Changes in nail and hair growth patterns: There may be rapid hair growth or no hair growth.
    • Skin changes: CRPS can involve changes in skin temperature -- skin on one extremity can feel warmer or cooler compared to the opposite extremity. Skin color may become blotchy, pale, purple or red. The texture of skin also can change, becoming shiny and thin. People with CRPS may have skin that sometimes is excessively sweaty.
CRPS may be heightened by emotional stress.

How Is Complex Regional Pain Syndrome Diagnosed?

There is no specific diagnostic test for CRPS, but some testing can rule out other conditions. Triple-phase bone scans can be used to identify changes in the bone and in blood circulation. Some health care providers may apply a stimulus (for example, heat, touch, cold) to determine whether there is pain in a specific area.

Making a firm diagnosis of CRPS may be difficult early in the course of the disorder when symptoms are few or mild. CRPS is diagnosed primarily through observation of the following symptoms:

    • The presence of an initial injury
    • A higher-than-expected amount of pain from an injury
    • A change in appearance of an affected area
    • No other cause of pain or altered appearance

How Is Complex Regional Pain Syndrome Treated?

Because there is no cure for CRPS, the goal of treatment is to relieve painful symptoms associated with the disorder. Therapies used include psychotherapy, physical therapy, and drug treatment, such as topical analgesics, narcotics, corticosteroids, antidepressants and antiseizure drugs.

Other treatments include:

    • Sympathetic nerve blocks: These blocks, which are done in a variety of ways, can provide significant pain relief for some people. One kind of block involves placing an anesthetic next to the spine to directly block the sympathetic nerves.
    • Surgical sympathectomy: This controversial technique destroys the nerves involved in CRPS. Some experts believe it has a favorable outcome, while others feel it makes CRPS worse. The technique should be considered only for people whose pain is dramatically but temporarily relieved by selective sympathetic blocks.
    • Intrathecal drug pumps: Pumps and implanted catheters are used to send pain-relieving medication into the spinal fluid.
    • Spinal cord stimulation: This technique, in which electrodes are placed next to the spinal cord, offers relief for many people with the condition.

This is all both enlightening and disheartening at the same time. We now have a name, but what can we do about it?

And the journey continues...