How someone reacts to pain is often a clear indicator of how you can – or can’t – support them. Someone experiencing symptoms of complex regional pain syndrome is subjected to a volatile mix of emotions and discomfort, often resulting in them pushing you away. That’s why learning the proper way to support someone with CRPS is essential.
What Is CRPS?
“Complex regional pain syndrome (CRPS) is a broad term describing excess and prolonged pain and inflammation that follows an injury to an arm or leg. CRPS has acute (recent, short-term) and chronic (lasting greater than six months) forms. CRPS used to be known as reflex sympathetic dystrophy (RSD) and causalgia. People with CRPS have changing combinations of spontaneous pain or excess pain that is much greater than normal following something as mild as a touch.”
What Causes It?
The reason for CRPS isn’t fully understood. It may be triggered by injury or abnormality in the central nervous and peripheral systems. CRPS usually happens due to trauma or injury. There are two types:
- Type 1 – reflex sympathetic dystrophy, which happens after an illness or injury that didn’t harm the nerves in the affected limb.
- Type 2 (formerly known as causalgia) – has similar symptoms to type 1 but happens following a distinct nerve injury.
What Are The Symptoms?
- Continuous pain that worsens over time.
- Pain that is disproportionate to the severity of the injury.
- Extreme sensitivity to a very light touch to your skin.
- Pain that spreads.
- “Burning” pain or a squeezing feeling.
- Skin swelling.
- Tremors or decreased range of motion or lack of function in the affected limb.
- Changes in skin temperature.
- Changes in skin color and appearance.
- Changes in skin texture.
- Changes in nail and hair growth.
How Many People Have CRPS?
CRPS happens more frequently in women than men. It can occur at any age but is rare among children and teenagers. It can happen in early adolescence and pediatrics, often between seven to nine years. In adults, it emerges between the ages of 37 to 70. About 66 to 80 percent of all cases are among people of European heritage. In the U.S., CRPS affects nearly 200,000 people annually, including about 5.46 out of every 100,000 per year.
How To Support Someone With CRPS
If you know someone who’s experiencing symptoms of CRPS, it’s sometimes hard to understand how to help that person. It’s human nature to want to help, to relieve someone of pain, but where do you begin? What do you say or not say?
Tips for supporting someone with CRPS
- Encourage your friend or loved one to see a doctor for diagnosis and treatment options. Even though there aren’t any specific tests for CRPS, a thorough history and physical examination by a physician can uncover what’s causing the pain. Oftentimes they may order some tests, such as an x-ray, MRI, nerve conduction studies, and sympathetic nerve blocks to aid them in diagnosis and treatment.
- Help educate your friend or loved one about CRPS and the potential treatment options. An excellent place to start is the Complex Regional Pain Syndrome Fact Sheet. Many CRPS patients have been able to reduce their symptoms with ketamine therapy.
- Don’t assume you know what your friend or loved one is going through. Ask them instead, and be sensitive and compassionate. In some ways, it’s human nature to take snippets of information – factual or not – and jump to conclusions that could make a situation worse. CRPS can foster a sense of physical and psychological isolation, making it harder for someone to interact with others.
- Don’t be personally offended by how your friend or loved one reacts when you want to talk or visit. It may appear they don’t want company, but that’s probably not true. The key is understanding when and where they feel most comfortable to open up to you.
Finally, just be there when you’re needed.
Diagnosis & Treatment
There aren’t any specific tests that can diagnose CRPS, but it often requires:
- A thorough examination by your healthcare provider.
- Nerve conduction studies.
- Imaging nerves through ultrasound or magnetic resonance imaging.
- Triple-phase bone scans
- Sympathetic nerve blocks
Diagnosis may be more successful when symptoms first appear, as they usually worsen over time.
CRPS is often accompanied by symptoms of mental illness, which may require diagnosis by a mental health specialist. It’s not unusual for someone with CRPS to experience sadness, anxiety, self-isolation, sleep issues, and eating problems – all the tell-tale signs of depression.
Treatment may include rehabilitation and psychical therapy, psychotherapy, and ketamine therapy.
If you’re one of the hundreds of thousands of people affected by it and your quality of life has markedly suffered, reach out to your doctor for diagnosis and treatment options. Many organizations can provide help and valuable information.