Health, Conditions & Treatments

Complex Regional Pain Syndrome Type 1

GENERAL INFORMATION:

What is complex regional pain syndrome type 1?

Complex regional pain syndrome type 1 (CRPS-1) is a painful condition that can occur in one or more of your limbs (arms and legs). CRPS-1 may also be called reflex sympathetic dystrophy or algodystrophy. CRPS-1 is a chronic (long-lasting) condition that can make it hard for you to function in your daily life. CRPS-1 almost always occurs after an injury to a limb. How bad the injury was does not make you more or less likely to get CRPS-1. Unlike a condition called CRPS-2, CRPS-1 is not caused by damage to a nerve.
In adults, CRPS-1 occurs most often in the arm or hand, and is more common in women. Treatment for CRPS-1 should be started as soon as possible. Early treatment can help reduce your symptoms and help prevent damage to the injured limb. Treatment may improve the movement of your limb and decrease your pain. This may help you return to your normal daily activities, such as work or sports.

What causes complex regional pain syndrome type 1? The exact cause of your CRPS-1 may be unknown. CRPS-1 usually occurs after an injury or other damage to a limb. You may be more likely to get CRPS-1 if a close family member had CRPS-1. You are also more likely to get it if your nervous system does not function as it should. Ask your caregiver for more information about the function of your nervous system. The following may also increase your risk for CRPS-1:

A fracture or sprain: Fractures (bone breaks) are the most common type of injury leading to CRPS-1. Fractures are often treated with casts. A cast that is too tight may also lead to CRPS-1. A sprain is a stretch or tear in a ligament that can lead to CRPS-1. A ligament is tissue that connects bones.
Surgery: CRPS-1 can occur after surgery on one of your limbs. Surgeries may include carpal tunnel syndrome repair and ankle or knee surgery.
Medical conditions: A heart attack, stroke, infections, and cancer can increase your risk for CRPS-1. Osteogenesis imperfecta, a bone disease, can also lead to CRPS-1. CRPS-1 can also occur as a result of pregnancy.

What are the signs and symptoms of complex regional pain syndrome type 1? Signs and symptoms of CRPS-1 can be different for every person. They can range from mild to severe (very bad) and can change over time. They may even spread to your uninjured limb. Signs and symptoms of CRPS-1 include:

Pain: You may feel pain in the tissues, bones, or joints of your injured limb. Pain from CRPS-1 is often more severe than you would expect from an injury. You may continue to feel pain even after an injury heals. You may feel pain for no known reason. With CRPS-1, you may also feel pain from something, such as a touch, that is normally not painful. The pain may spread from the site of an injury. Over time, it may affect the entire limb.
Skin and tissue changes: Your injured limb may swell or sweat. You may notice changes in the temperature or color of your skin. For example, your skin may be warm and pink and then change to cold and blue. You may get infections and sores, or your skin may become thin.
Muscle and joint problems: The injured limb may become stiff, and you may have trouble moving your joint. Joints are the places in your body where two bones meet, such as your knee or elbow. You may have movements in the limb that you cannot control, such as jerks or tremors (shaking). The limb may also take abnormal postures (positions). Your muscles may become weak or may shorten.
Hair and nail changes: Your hair and nails may grow more or less than normal.

How is complex regional pain syndrome type 1 diagnosed? The symptoms of CRPS-1 can be similar to the symptoms of other conditions. This can make CRPS-1 hard to diagnose. Your caregiver will ask about your signs and symptoms and your health history. Tell your caregiver if you have had a recent injury, surgery, or other medical problem. Your caregiver will do a physical exam. He may check the movement of your injured limb and compare it to your uninjured limb. There is no specific test for CRPS-1. Tests may be done to check for other causes of your pain. You may need any of the following:

Blood tests: You may need blood taken to give caregivers information about how your body is working. The blood may be taken from your hand, arm, or IV.
Imaging tests: These tests create pictures that can show problems inside the body. Imaging tests you may need include:
- X-ray: This is a picture of the tissue or bone in your injured limb.
- Bone scanning: This type of x-ray can check for breakdown of bone. It can also check for fractures.
- Magnetic resonance imaging: This test is also called an MRI. During an MRI, pictures are taken of the inside of your body. This test may be used to check for problems and changes in your bones and tissues. You need to lie still during an MRI. The MRI machine contains a very strong magnet. Never enter the MRI room with any metal objects. This can cause serious injury. Tell your caregiver if you have any metal implants in your body.
Skin temperature and sweat tests: Testing may be done to check for temperature differences between your injured and uninjured limbs. Sweat testing is done to check for increased sweating in your injured arm.
Blood flow testing: Testing may be done to check the blood flow in your injured limb. Caregivers are checking for poor blood flow that can cause pain and other symptoms of CRPS-1.
Nerve conduction tests: Testing may be done to check for damaged nerves in your injured limb.

What medicines may be used to treat complex regional pain syndrome type 1? You may need any of the following medicines to treat your CRPS-1:

Pain medicines: Most pain medicines are taken by mouth. Others can be applied to the skin as a cream or gel or given through patches put on the skin. Ask your caregiver for information about these or other pain medicines you may be given:
- Nonsteroidal anti-inflammatory medicine: This family of medicine is also called NSAIDs. Nonsteroidal anti-inflammatory medicine may help decrease pain and inflammation (swelling). This medicine can be bought with or without a doctor's order. This medicine can cause stomach bleeding or kidney problems in certain people. Always read the medicine label and follow the directions on it before using this medicine.
- Opioids: This medicine is given to block pain signals from anywhere in your body. Pain is caused when pain signals from the body are sent to the brain. Opioids are also called narcotic pain medicines. Take this medicine exactly as directed by your caregiver.
Steroids: This medicine may be given to decrease inflammation.
Antidepressants: These medicines are used to treat depression (deep sadness). They may also help decrease your pain.
Anti-seizure medicines: These medicines are used to treat seizures. They can also help relieve pain from CRPS-1.
Biophosphonates and calcitonin: These medicines help prevent bone damage which can help relieve pain.
Calcium channel blockers: These medicines may be given to help improve blood flow in your injured limb.

What treatments may be used for complex regional pain syndrome type 1? Ask your caregiver for more information about the following treatments for CRPS-1:

Therapy: Therapy should be started right after you are diagnosed with CRPS-1. Therapy can decrease pain and improve movement. As a result, it can help reduce or prevent loss of limb function. The main types of therapy are:
- Physical therapy: You may need to see a physical therapist to teach you special exercises. These exercises help improve movement and decrease pain. Physical therapy can also help improve strength and decrease your risk for loss of function.
- Occupational therapy: Occupational therapy (OT) uses work, self-care, and play activities to help you function with an injury. An occupational therapist can help you learn to use your injured limb during your daily life. You and your therapist will plan a therapy program that is right for you.
Treatments to block pain signals: The following treatments help interrupt or block pain signals to decrease pain from CRPS-1:
- Nerve blocks: During this treatment, medicine is injected into the body to block pain signals. This helps relieve pain in the injured limb. The medicine may be injected directly into the limb. Or, it may be sent into the body through a tube placed in the neck or the spine. Medicine may also be put into an IV (intravenous) in the injured limb. An IV is a tube placed in a vein to give medicines or liquids.
- Transcutaneous electrical nerve stimulation: This treatment is also called TENS. During TENS, small pads connected to a power source are attached to the skin, often near the problem area. The power source sends mild electrical signals to the pads. The signals go into the skin and help ease pain in the problem area.
- Spinal cord stimulation: This treatment is also called SCS. With SCS, a small device is placed in the spine during surgery. The device sends electrical pulses to a certain area of the spinal cord. SCS may give you long-term pain relief and help you function better. SCS may be used if other treatments have not worked to decrease your pain.
- Sympathectomy: This procedure is done to damage the area of your nerve that is sending pain signals to your brain. A sympathectomy can be done using surgery or by injecting chemicals into the problem nerve. It can also be done using radiofrequency by sending mild electrical signals to the problem nerve. The electrical signals damage the nerve. A sympathectomy is only done if other treatment options do not work.

What else might my caregiver suggest to treat complex regional pain syndrome type 1? Ask your caregiver for more information about other treatments that may help treat problems related to CRPS-1. These treatments may include:

Relaxation therapy: This technique teaches you how to calm your body and mind. The goal is to feel less physical (body) and emotional (mind) stress. Relaxation therapy may help you cope with your pain.
Biofeedback: This treatment is a special way to control how your body reacts to pain. During biofeedback, electrodes (wires) are placed on different parts of your body, such as your chest. The electrodes are attached to a TV-type monitor that gives a paper tracing of your heart beating. The electrodes are used to monitor your body responses. You will learn how to control body changes, such as slowing your heart rate when you have pain.
Acupuncture: Caregivers insert very thin needles just under your skin. This is believed to help certain fluids flow better in your body. Acupuncture treatment may decrease pain and improve healing. Always see a caregiver for this treatment. Do not try to give this treatment to yourself.

Can complex regional pain syndrome type 1 be prevented? Some cases of CRPS-1 may be preventable. After an injury, vitamin C prescribed by your caregiver may help reduce the risk of getting CRPS-1. This treatment seems to be most helpful after a wrist fracture. Ask your caregiver for more information about vitamin C and preventing CRPS-1.

What are the risks of complex regional pain syndrome type 1?

Medicines used to treat CRPS-1 may cause tiredness, dizziness, headache, and confusion. They may also cause weight gain. Certain medicines may cause a fever, low blood pressure, or abnormal heartbeats. When taking opioid pain medicines, there is a risk of becoming addicted.
Risks of nerve blocks include bleeding, infection, dizziness, nausea (upset stomach), and nerve damage. Risks of SCS include pain, bruising, infection, and bleeding. Also, the SCS device may not work. Procedures or surgery to treat your CRPS-1 may not work or may need to be repeated. Surgery may cause nerve damage and pain. Even with treatment, your CRPS-1 may not get better or go away, or your symptoms may return.
If you do not get treatment, your symptoms, such as pain and swelling, may get worse. You may have increased muscle weakness, joint stiffness, and trouble moving the injured limb. These symptoms can cause problems with your daily function. You may not regain full function of your injured limb. With CRPS-1, you are at risk of becoming depressed (deeply sad). Talk with your caregiver if you have any questions or concerns about your condition, treatment, or care.

How can I help manage my complex regional pain syndrome type 1? Some people will recover completely from CRPS-1 over time. The following may help decrease your symptoms so you can better manage your CRPS-1:

Start treatment as early as possible: This can help reduce symptoms such as pain. It can also help prevent the loss of function in your injured limb.
Follow your treatment plan: Do as your caregivers tell you, and keep all follow-up visits. Although it may take weeks for treatment to start working, continue your treatment plan. If pain is a problem during PT, talk to your caregiver about taking pain medicines before doing PT. Treatment can help relieve your pain and other symptoms.
Get help if you are having trouble coping with your condition: If you are feeling anxious (nervous or worried) or depressed, talk to your caregiver. Treatment is available to help you feel better. Treatment may include talk therapy or medicine.

Where can I find more information and support? CRPS-1 can be a life-changing condition. You may feel angry, sad, or depressed. These feelings are normal. You may feel more in control by learning all you can about CRPS-1. Joining a support group may help. This is a group of people who also have CRPS-1. You may learn new ways to better deal with this very painful condition. You can also contact the following:

American Chronic Pain Association
PO Box 850
Rocklin , CA 95677
Phone: 1- 800 - 533-3231
Web Address: http://www.theacpa.org

The Reflex Sympathetic Dystrophy Syndrome Association
P.O. Box 502
Milford , CT 06460
Phone: 1- 877 - 662-7737
Web Address: www.rsds.org

When should I call my caregiver? Call your caregiver if:

You have limb pain that you think is worse than any recent injury should cause.
You have limb pain that continues after an injury heals.
You have limb pain caused by things that do not normally cause pain, such as a touch to the skin.
You have swelling, sweating, and skin temperature changes in an injured limb.
You have trouble moving an injured limb.

CARE AGREEMENT:

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your caregivers to decide what care you want to receive. You always have the right to refuse treatment.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

References and sources