Complex Regional Pain Syndrome

Topic Overview

What is complex regional pain syndrome?

Complex regional pain syndrome (CRPS) is a term used to describe a group of painful conditions. Examples of earlier names for these conditions include reflex sympathetic dystrophy, causalgia, and Sudeck's atrophy.

Pain is the main symptom of CRPS. Most people have severe pain in an arm or a leg. Usually the pain is in a part of your body where you had surgery or an injury. The pain is usually constant and either shooting, sharp, or burning. The pain is much worse and it lasts much longer than you would expect for the kind of injury you had. Some people may not have had an injury or surgery before the pain started, but most people have.

CRPS can happen to anyone at any age, but women in their 40s to 60s are more likely to get it.

CRPS isn't the same for all people. Many have mild symptoms and slowly get better over time. But some people may not recover and may be left with long-lasting pain and disability.

What causes CRPS?

The cause of CRPS is not well understood. CRPS is a reaction the body has after an injury, and the reaction is more severe than would be expected. This reaction happens in the limb (arm or leg, usually) and in the brain. The nerves and skin in the arm or leg are affected and so are the nerves in the brain. CRPS, and the pain and disability that comes with it, is very real. CRPS is not "in your mind."

The pain usually starts after a limb or joint has had a serious injury, such as a broken bone, a gunshot wound, or a deep wound. The injury might also be caused by an accident, a fall, or surgery. It can even be caused by a minor injury such as a sprain. In about 1 out of 10 people, CRPS starts without an apparent reason.^{footnote 1}

What are the symptoms?

Symptoms of CRPS are usually only in one arm or leg and include:

• Pain that's much more severe and lasts much longer than what you would expect for the kind of injury you may have had.
• Skin that may be blotchy or shiny.
• Skin that may feel hotter or colder than other areas of your body.
• Swelling, joint stiffness, weakness, or shaking in the painful arm or leg.
• Sweating, numbness, or tingling in the painful arm or leg.

You may feel as though the painful arm or leg doesn't belong to your body. You may wish you could cut off the painful limb. These are common feelings for people who have CRPS.

Like other conditions that cause chronic pain, CRPS can also cause sleeping problems, anxiety, mood swings, sadness, and depression.

When pain is extreme, some people who have CRPS think about death or suicide. If you or someone you care about talks about suicide or feels hopeless, get help right away.

How is CRPS diagnosed?

CRPS is not common, so diagnosis can be hard.

There's no one test to diagnose CRPS. Your doctor will ask about your symptoms and past health and will give you a physical exam. The exam may include touching your skin or bending your joints in the area that hurts.

Your doctor might also compare the color and temperature of the painful arm or leg with the matching, healthy one. For instance, if your left arm hurts, your doctor will compare it to your right arm.

More tests may be needed to rule out other possible causes of your pain and to make a correct diagnosis.

Because CRPS can be hard to diagnose, your doctor may suggest you see a specialist, such as a neurologist, rheumatologist, or pain specialist.

How is it treated?

Treatment for CRPS is divided into four areas:

• Pain management
• Physical rehabilitation (rehab)
• Counseling or psychotherapy
• Patient education and self-management

Pain management

Medicine can be used to help with pain from CRPS. There are different medicines that may be tried. You may also have medicine to help you sleep.

Medicine is only part of the treatment for pain from CRPS. Most people with CRPS see a pain specialist or go to a pain management clinic. You may work with different people for the various parts of your pain management plan.

There will be times when your pain seems to be getting very bad. This is called a "pain flare," and it is normal in CRPS. A pain flare usually gets better after a few days or a week. During this time, you may need to have less intense physical therapy and may need additional pain medicine treatment.

Rehab

It may seem very odd that treatment for CRPS includes moving your painful limb, especially when any movement of that limb causes you severe pain. But research has shown that physical therapy and occupational therapy are very important parts of treatment for CRPS.

Most patients who have CRPS see a physical therapist or occupational therapist(or both). This type of therapy may not even involve touching your painful limb, at least at first. Gentle limb movement and treatment to help the limb feel more normal (called desensitization) are two therapies used for CRPS. After a period of time, you may move on to more active use of your painful limb, such as doing stretches or weight-bearing exercises.

Rehab may also include other treatment, such as:

• Mirror therapy. For this therapy, the therapist places a mirror so that the reflection of your limb that is not painful makes your brain think it is looking at your painful limb. When you look at this "virtual" limb in the mirror and you move it without pain, your brain "sees" painless movement in your painful limb. Mirror therapy may help people who have CRPS. The studies done so far have been small, and the results have been mixed.^{footnote 2}
• Transcutaneous electrical nerve stimulation (TENS).
• Hydrotherapy.
• Setting goals, pacing yourself, and prioritizing activity.
• Relaxation techniques.
• Sleep hygiene.
• Tai chi and qi gong.
• Electrical nerve stimulation.
• Nerve ablation, such as chemical sympathectomy.

Counseling

Counseling for CRPS includes ways to help you manage the pain and disability that comes from the condition. Cognitive-behavioral therapy (CBT) is the type of counseling used most often for CRPS. CBT can help you to:

• Look at-and change-the way you think about your condition.
• Change things you do (behaviors) that make the pain or disability worse.

CBT will also include training on:

• Coping skills.
• Relaxation.
• Activity and exercise, including taking breaks and pacing yourself.

Education

One of the best things you can do to help with CRPS is to learn everything you can about the condition. Your doctor (or doctors) should be able to help you with this. The more you know about what CRPS is and how you are affected by it, the better you will be able to help in your treatment.

Learn as much as you can so that you know the best ways to help yourself get better.