How to treat complex regional pain syndrome

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Complex Regional Pain Syndrome (CRPS) is ranked as the most painful form of chronic pain that exists today.

Complex Regional Pain Syndrome (CRPS) is a chronic pain condition that can affect a limb of an individual and typically occurs after an injury or trauma in over ninety percent of the cases. CRPS will present with prolonged, chronic (> 6 months in duration) pain in the injured limb long after the initial injury (phases of healing) has occurred. The pain is often described as a burning, or “pins and needles sensation”. Other common features of CRPS include:

  • changes in skin texture on the affected area; it may appear shiny and thin
  • abnormal sweating pattern in the affected area or surrounding areas
  • changes in nail and hair growth patterns
  • stiffness in affected joints
  • problems coordinating muscle movement, with decreased ability to move the affected body part
  • abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the limb.

CRPS usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas. [1].

CRPS is divided into two different types: Type-I and Type-II. Type-I involves CRPS when there is no known nerve injury that has occurred. Type-II is used to describe CRPS when there is a known nerve injury. CRPS is sometimes referred to as Reflex Sympathetic Dystrophy Syndrome or RSD. However, this is an older term that now is referred to as CRPS Type-I [2].

What Causes CRPS? (Complex Regional Pain Syndrome)

Peripheral nerve abnormalities are found in individuals with CRPS and usually involve the small unmyelinated and thinly myelinated sensory nerve fibers (axons) that carry messages and signals to blood vessels. (Myelin is a mixture of protein and fat that surround and insulate nerves.) Because nerves communicate with blood vessels, injuries to the fibers may trigger the many different symptoms of CRPS. Chemicals secreted from the ends of hyperactive nerve fibers contribute to inflammation. These peripheral nerve abnormalities in turn trigger changes in the spinal cord and brain.

Blood vessels in the affected limb may dilate (open) or leak fluid into the surrounding tissue, causing redness and swelling. The dilation and constriction of small blood vessels are controlled by small nerve fiber axons as well as chemical messengers in the blood.  The underlying muscles and deeper tissues become starved of oxygen and nutrients, which causes muscle and joint pain as well as damage.  The blood vessels may over-constrict (clamp down), causing old, white, or bluish skin.

CRPS also affects the immune system. High levels of inflammatory chemicals (cytokines) have been found in the tissues of people with CRPS.  These contribute to the redness, swelling, and warmth reported by many patients. CRPS is more common in individuals with other inflammatory and autoimmune conditions.

There is very limited data supporting genetic differences in those with CRPS (Complex Regional Pain Syndrome)

CRPS

CRPS involves changes in the nervous system.

Individuals who suffer from chronic pain conditions can often hear that the pain “is in their head” because it is frequently difficult to pinpoint a reason for the pain. Such is not the case with a diagnosis of CRPS. CRPS is diagnosed, in part, because there are physiologic changes that take place within the body.

These physical changes occur due to hyperactivity of the peripheral and central nervous system in the involved limb. The hyperactivity has been compared to a food allergy to help better understand and explain the pain. With food allergies, an individual has an intense, adverse reaction to a food that is innocuous to the majority of the population. Similarly, an adverse reaction occurs to individuals diagnosed with CRPS after the injury to the involved limb. The injury can be severe or very minor, ranging from a surgical procedure or a fracture to something as small as an ankle sprain or prolonged immobilization. This injury than is reacted to by the body by an intense hyperactive response, much like a food allergy. [3]

Since CRPS is multifactorial in its causes and presentation, there is no singular treatment that works best. Preferred treatment often depends on each individual patient. A point of emphasis found in the literature is that immobilization is detrimental to individuals with CRPS, movement is key. It has also been shown that early intervention often leads to better outcomes. This is usually problematic due to the difficulty and time needed to make a proper diagnosis of CRPS, however, the quicker one can receive treatment, the better [4].

CRPS

Foods to avoid as much as possible include:

  • Processed meats, such as cold cuts.
  • Enriched, or bleached flour products, such as white breads and pastas
  • Margarine, Crisco, and other shortenings – olive oil should be used instead
  • Sweetened beverages such as soft drinks
  • Cookies, cakes, pies, donuts, and ice cream
  • Alcohol, such as beer, liquor, and wine

Three Action Steps for Those with CRPS (Complex Regional Pain Syndrome)

Here are a few actionable steps to support and prepare you for a full recovery and return to a pain-free life.

1. Find a Physical Therapist with advanced knowledge, experience, and skills that may apply to your condition and physical therapist who is well-versed in the treatment of CRPS or other complex, painful conditions. Exercise, Graded Motor Imagery, Pain Exposure Therapy, Aquatic Therapy and relaxation exercises are primary treatment modalities physical therapist use and often the most beneficial for those with CRPS. These are crucial to start the journey back to life with less pain.

General tips when you’re looking for a physical therapist (or any other health care provider):

  • Get recommendations from family and friends or from other healthcare providers. Be cautious, many physicians have a poor understanding of physical therapy treatment for those with pain, or how it supports both the brain and body. You may have to do some research on your own for a qualified physical therapist. You may have to ask for a referral is it is not freely provided. The longer you wait to initiate movement, the longer the CRPS and pain will persist.
  • When you contact a physical therapy clinic for an appointment, ask about the physical therapists’ experience in helping people with painful conditions.
  • During your first visit with the physical therapist, be prepared to describe your symptoms in as much detail as possible; keeping a journal highlighting when you experience pain will help the physical therapist identify the best approach to your individual treatment.

2. Secure Psychological Support. Understand that your pain is not in your head. It is very real, trust your instinct that you need help to heal. Psychological factors such as overcoming fear and acceptance are needed to move forward. A psychologist can provide much-needed support as well as stress management, coping strategies and general counseling to talk through your worries, anxiety, and concerns. Depression may accompany CRPS and require treatment. Support from friends and family are crucial and may require you to ask for more help when needed. There will be those who rally around you. Others may barely understand what it is like to live a life with pain.

3. Speak with your insurance company, health care providers and employer. CRPS can take weeks to months to heal. You may have to prepare yourself and your family for financial changes as pain care is poorly covered by major medical insurance. Discuss your benefits with your insurance carrier regarding physical therapy, occupational therapy, nutrition, and psychotherapy. All may be needed to fully recover. Discuss lost time and wages with your human resource department or employer. You may need to discuss out of pocket payments with your provider should insurance not cover the required treatment.

CRPS Care Begins with Compassion

Living with CRPS or any chronic pain condition is not easy. Chronic pain imparts significant psychosocial burden to the individuals and their loved ones. Pain is both a sensory and emotional experience and nowhere is this more apparent than in those who suffer from CRPS. Along with the obvious physical changes come the emotions of frustration, anger, resentment, sadness, grief, and fear. Caring and compassion are needed for those who struggle with CRPS.

Anger is an important emotional link in chronic pain and is likely to occur as those with CRPS negotiate the medical system and try to solve their pain puzzle. Anger and animosity towards others as well as towards oneself, including disappointment and frustration with pain care, self-blame, self-criticism, and poor acceptance of one’s physical limitations are common and understandable. Anger has also been associated with reduced pain treatment response and impaired relationships with friends and family. Eastern traditions prescribe compassion cultivation to treat persistent anger. Compassion cultivation has been shown to influence emotional processing and reduce negativity. The cultivation of an 8-week compassion meditation practice can help those with chronic pain decrease pain severity, anger and work toward acceptance of their condition. Meditation can help individuals cope with CRPS by using the non-physical mechanisms of our nervous systems to decrease the perception of pain and promote well-being. [8] Developing compassion toward oneself and others can be developed through a loving-kindness meditation practice with a psychotherapist or meditation teacher.[9]

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