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Complex regional pain syndrome


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Other Names:
CRPS; Reflex sympathetic dystrophy
Categories:
Nervous System Diseases

Summary Summary


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Complex regional pain syndrome (CRPS) is a chronic pain condition that mainly affects the arms, legs, hands, and feet, but may involve the entire body. CRPS symptoms often begin after surgery or an injury.[1] The main feature of CRPS is continuous, intense pain that is out of proportion to the severity of the injury. The pain gets worse over time and often spreads throughout the entire affected area.[2] Other symptoms may include color and temperature changes of the skin over the affected area; skin sensitivity; sweating; and swelling.[1] The underlying cause of CRPS is often not known. Two classifications of CRPS have been recognized based on causalgia. Type I (also known as reflex sympathetic dystrophy), in which there is no evidence of peripheral nerve injury and Type II, in which peripheral nerve injury is present. Treatment aims to relieve pain and often includes different interventions such as topical or oral medications; physical therapy; and/or a sympathetic nerve block.[2][3]
Last updated: 1/9/2017

Symptoms Symptoms


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Complex regional pain syndrome (CRPS) usually develops after an injury, surgery, stroke or heart attack.[4] The key symptom of CRPS is continuous, intense pain that is out of proportion to the severity of the injury. The pain gets worse over time. CRPS most often affects one of the arms, legs, hands, or feet, and the pain often spreads throughout the entire affected arm or leg.[2] Other signs and symptoms may include:[4]
  • sensitivity to touch or cold
  • swelling of the painful area
  • changes in skin temperature, color, and/or texture
  • joint stiffness and swelling
  • muscle weakness and/or muscle spasms

Symptoms may change over time and vary from person to person. In some people, signs and symptoms of go away on their own. In others, symptoms can persist for months to years.[4]

Last updated: 11/11/2014

This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

Showing of 11 |
Medical Terms Other Names
Learn More:
HPO ID
80%-99% of people have these symptoms
Limb pain 0009763
30%-79% of people have these symptoms
Abnormality of hair growth 0040170
Allodynia 0012533
Dry skin 0000958
Edema of the upper limbs
Fluid accumulation in upper limbs
0010742
Erythema 0010783
Hyperalgesia 0031005
Involuntary movements
Involuntary muscle contractions
0004305
Pedal edema
Fluid accumulation in lower limbs
Lower leg swelling
[ more ]
0010741
Slow-growing nails 0008383
Trophic changes related to pain 0010834
Showing of 11 |
Do you have more information about symptoms of this disease? We want to hear from you.
Last updated: 2/1/2021
Do you have updated information on this disease? We want to hear from you.

Cause Cause


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The underlying cause of complex regional pain syndrome (CRPS) is not well understood. In most cases it occurs after an illness or injury that did not directly damage the nerves in the affected area (Type I). In some cases, it occurs after a specific nerve injury (Type II). The exact trigger of CRPS after an injury is not known, but it may be due to abnormal interactions between the central and peripheral nervous systems, and/or inappropriate inflammatory responses.[3]
Last updated: 3/31/2016

Treatment Treatment


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Treatment of complex regional pain syndrome (CRPS) involves a multidisciplinary approach with the aim of controlling pain symptoms. It has been suggested that when treatment is started within a few months of when symptoms begin, improvement or remission may be possible.[3]

A combination of therapies is usually necessary including medications, physical and occupational therapy, interventional procedures, and psychosocial/behavioral management. 

Medications may include:
  • Oral and topical pain relievers
  • Antidepressants or anticonvulsants (which are sometimes used to treat pain)
  • Corticosteroids
  • Bone-loss medications
  • Sympathetic nerve-blocking medications
  • Intravenous anesthetics (Ketamine)
  • Intravenous immunoglobulin

Interventional procedures may include:

  • Trigger/tender point injections
  • Regional sympathetic nerve block
  • Spinal cord stimulation
  • Epidural clonidine
  • Chemical or mechanical sympathectomy

Other therapies may include applying heat or cold; electrical nerve stimulation; and biofeedback.[2][3]

Psychosocial and behavioral aspects of CRPS should be addressed, and it has been suggested that people with chronic CRPS should have a thorough psychological evaluation. This may be followed by cognitive-behavioral pain management, including relaxation training with biofeedback.[5]  

Unfortunately, published research studies validating the efficacy of these treatment options are limited and no single drug or therapy (or combination) has shown consistent, long-lasting improvement.[2][3]

For more information on treatment options for CRPS, view information from the Reflex Sympathetic Dystrophy Association of America (RSDSA).

 

Last updated: 3/25/2016

Prognosis Prognosis


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The long-term outlook (prognosis) for people with complex regional pain syndrome (CRPS) varies from person to person.[4] In some people, signs and symptoms go away on their own; this is called spontaneous remission. In others, symptoms may persist for months or years and there may be irreversible problems.[4][2] Treatment is likely to be most effective when it is started early in the course of the illness, so early diagnosis and treatment may improve the prognosis.[4] The vast majority of children with CRPS have a good prognosis.[6]
Last updated: 11/11/2014

Find a Specialist Find a Specialist


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If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.

You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.

Healthcare Resources

  • To find a medical professional who specializes in genetics, you can ask your doctor for a referral or you can search for one yourself. Online directories are provided by the American College of Medical Genetics and the National Society of Genetic Counselors. If you need additional help, contact a GARD Information Specialist. You can also learn more about genetic consultations from MedlinePlus Genetics.

Research Research


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Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Complex regional pain syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Patient Registry

  • The Autoimmune Registry supports research for Complex regional pain syndrome by collecting information about patients with this and other autoimmune diseases. You can join the registry to share your information with researchers and receive updates about participating in new research studies. Learn more about registries.

Organizations Organizations


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Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

  • American Chronic Pain Association (ACPA)
    P.O. Box 850
    Rocklin, CA 95677-0850
    Toll-free: 800-533-3231
    Telephone: 916-632-0922
    Fax: 916-652-8190
    E-mail: ACPA@theacpa.org
    Website: https://theacpa.org/
  • CRPS Forum
    3940 Laurel Canyon Blvd., #634
    Studio City, CA 91604
    E-mail: contact@crpsforum.org
    Website: https://crpsforum.com/
  • Pain Relief Foundation
    Clinical Sciences Centre
    University Hospital Aintree, Lower Lane
    Liverpool L9 7AL
    United Kingdom
    Telephone: 0151 529 5820
    Fax: 0151 529 5821
    Website: https://painrelieffoundation.org.uk/
  • Reflex Sympathetic Dystrophy Syndrome Association of America (RSDA)
    99 Cherry St
    PO Box 502
    Milford, CT 06460
    Toll-free: 1-877.662.7737 (Helpline)
    Telephone: +1-203-877-3790
    Fax: +1-203.882.8362
    E-mail: info@rsds.org
    Website: https://rsds.org/

Social Networking Websites

  • The Burning Nights CRPS/RSD Forum is an online community forum for people with CRPS/RSD as well as family, friends, loved ones, and caretakers.
  • Visit the following Facebook groups related to Complex regional pain syndrome:
    The Burning Limb Foundation
Do you know of an organization? We want to hear from you.

Living With Living With


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Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.

Financial Resources

  • The Burning Limb Foundation
    15652 Wyoming Drive
    Frisco, TX 75035
    E-mail: philip@burninglimb.com
    Website: http://burninglimb.com/
    The Burning Limb Foundation provides assistance to those suffering from chronic pain diseases such as complex regional pain syndrome.

Learn More Learn More


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These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

  • MayoClinic.com has an information page on Complex regional pain syndrome.
  • MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
  • The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
  • The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.
  • Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA) offers information and support for Complex regional pain syndrome

In-Depth Information

  • Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine. 
  • Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Complex regional pain syndrome. Click on the link to view a sample search on this topic.

News & Events News & Events


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News

  • Rare Disease Day at NIH 2021
    March 1, 2021

GARD Answers GARD Answers


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Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know.

Have a question? Contact a GARD Information Specialist.

References References


  1. Telltale Signs and Symptoms of CRPS/RSD. Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA). 2015; http://rsds.org/telltale-signs-and-symptoms-of-crpsrsd/.
  2. NINDS Complex Regional Pain Syndrome Information Page. NINDS. November 3, 2015; http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/reflex_sympathetic_dystrophy.htm.
  3. Salahadin Abdi. Complex regional pain syndrome in adults: Prevention and management. UpToDate. Jan 06, 2016; http://www.uptodate.com/contents/complex-regional-pain-syndrome-in-adults-prevention-and-management.
  4. Complex regional pain syndrome. Mayo Clinic. http://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/basics/definition/con-20022844. Accessed 11/11/2014.
  5. Bruehl, S and Chung OY. Psychological and Behavioral Aspects of Complex Regional Pain Syndrome Management. Clinical Journal of Pain. June, 2006; 22(5):430-437. http://journals.lww.com/clinicalpain/Abstract/2006/06000/Psychological_and_Behavioral_Aspects_of_Complex.5.aspx.
  6. David D. Sherry. Complex regional pain syndrome in children. UpToDate. Waltham, MA: UpToDate; November, 2014; Accessed 11/11/2014.
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