To carry on with CRPS Awareness Month, here are some myths and misconceptions of CRPS from the National Pain Foundation.
Myth: Doctors know what causes CRPS.
Fact: No one knows what causes CRPS. However, a number of factors have been associated with it, including trauma, heart attack (though extremely rare), cervical spine or spinal cord disorders (rare), cerebral lesions, infections, surgery and chronically painful disorders such as carpal tunnel syndrome.
Myth: CRPS is a newly discovered disorder.
Fact: CRPS-I has been called a variety of names for nearly 140 years. Today, the disorder is most commonly referred to as reflex sympathetic dystrophy (officially called CRPS I) or causaigia (officially called CRPS-II). Lesser known names include Sudeck’s atrophy, post-traumatic dystrophy, shoulder-hand syndrome, and reflex neurovascular dystrophy.
Myth: Minor injuries do not cause CRPS.
Fact: Not true. Even commonplace injuries such as a sprained ankle or a fall can cause CRPS, as can surgery. CRPS can start immediately after the injury or up to weeks later, especially if there is something — such as an undiagnosed fracture – that is causing persistent pain. There are even reports of “spontaneous” CRPS unrelated to any apparent illness or injury.
Myth: Pain from CRPS is not nearly as bad as patients claim it is.
Fact: Absolutely untrue. Severe, constant, burning pain close to the injured area or in one or more extremities, such as an arm, leg or foot, is among the first CRPS symptoms. What is unusual about CRPS is that the pain people experience is far greater than what normally would be expected after an injury. The pain then spreads beyond the area of the original injury.
Myth: People with CRPS suffer no symptoms except pain, swelling, heat or coldness in the injured area and occasionally a change of skin color.
Fact: Some people with this disorder endure many other aggravating symptoms. These include movement disorders such as muscle spasms, tremors, weakness, fatigue and a variety of emotional problems, including anxiety and depression. Inability to work or play effectively also creates social problems, such as loss of important role functions, and misunderstanding on the part of family members, employers, acquaintances and even health-care providers.
Myth: CRPS cannot spread throughout the body.
Fact: In about 70% of people, CRPS does spread, at least locally (in which case it becomes a “regional” disorder). In about 20% of cases, pain spreads into other limbs.
Myth: CRPS will disappear within six months.
Fact: Unfortunately, CRPS can become a chronic problem for many people, although spontaneous remissions sometimes occur and the disease sometimes subsides over time. Many Pain Medicine specialists believe that early, vigorous treatment within the first six months of diagnosis offers the best chance of controlling or curing the disorder. Such treatment may include aggressive pain control with medications, sympathetic nerve blocks, physical therapy with emphasis on activation of involved limbs and psychological counseling. A delay in treatment or inactivity increases the risk that CRPS will become a long-term, chronic disorder. Normal use of the limb is the best therapy.
Myth: Everyone with CRPS should get the same type of treatment.
Fact: Each CRPS patient needs an individual treatment plan. While some medications and therapies may help one person, they won’t necessarily aid another. One “size” does not fit all!
Myth: Any physician can treat CRPS without additional consultation from colleagues.
Fact: Experience in treating a specific disorder is always important. Because CRPS is a complex condition with varying degrees of severity and associated disability, a team approach to treatment – if available – is critical. In addition to a physician trained in pain medicine, the CRPS treatment team might include a physical therapist, psychologist, social worker and others. Having a qualified physician in charge of the team helps prevent medical duplications, serious medical omissions or contradictory treatment instructions.
Myth: Opiods do not help relieve CRPS-related pain.
Fact: Opioid medications can be effective in many patients. Physicians use these medications when non-opioid pain relievers are not effective and before considering invasive treatment such as surgery or spinal cord stimulation. (See CRPS treatment options.) Opioids also are used to reduce the level of pain so that other forms of treatment, such as physical therapy, can be administered without causing additional discomfort. Many pain medicine physicians favor the use of long-acting opioids taken on a regularly timed, rather than “as-needed,” basis. Although opioids are subject to a great deal of misunderstanding, such drugs usually can be used for legitimate medical reasons with little fear of addiction. However, tolerance can develop with long-term use and a patient may require increasing doses for pain control. This can lead to undesirable side effects. Make sure your physician is very familiar with the use of opioid drugs before taking them for pain management. The bottom line is that opioids are useful only if they help promote an increase in physical activity along with offering some pain relief and do not cause debilitating, undesirable side effects. Also, opioids must be used cautiously in patients with a history of addictive behavior.
Myth: CRPS occurs in psychologically unbalanced people.
Fact: Absolutely untrue. People who develop CRPS, in general, are psychologically no different than the rest of the population. At times, when someone endures months of constant, undiagnosed pain, he or she can become depressed or suffer other psychological changes. However, when CRPS symptoms are relieved, these problems typically disappear.