Prologue: What is RSD/CRPS?

The following document is one I compiled with the most up-to-date info I could find because of my own need for a concise, 1 page document explaining this complex disorder. It’s great for emergency room visits, new doctors or other health pros who may not be familiar with the condition, and for educating family and friends. Ideally, I’d prefer it to be fully cited, and it’s part of my plans to upgrade this to a cited version for those who’d prefer that sort of resource. But much of the time, just to have a one pager that makes the explanation for us fills the primary need. Please feel free to download the printable version and use it in those ways yourself. Life with RSD/CRPS is challenging enough, we don’t need to have to struggle with the same explanations over and over again! Use this to educate family, friends, or the medical pros in your life, with my compliments. If you’d like to reprint it in any larger or more professional way, please contact me before doing so; though I’ll likely be happy to consent. I hope this is of help to you!

WHAT IS RSD/CRPS?

Previously Reflex Sympathetic Dystrophy or Causalgia, now renamed Complex Regional Pain Syndrome, RSD/CRPS is a rare chronic pain disorder involving the central nervous system. The mechanisms of RSD/CRPS are being studied worldwide and it is now classified as a neuro-inflammatory disease, along with MS, which has many similar symptoms. In RSD/CRPS, an injury sets off the body's pain recognition processes, but then the autonomic and sympathetic nervous systems malfunction and an abnormal cycle of pain and inflammation begins. Pain is often near constant and can be triggered or aggravated not only by attempts to resume normal functioning but by stimuli such as temperature or pressure changes, vibration, noise, touch or motion.

The first indication of RSD/CRPS is prolonged, intractable pain often more severe than expected for the injury. RSD/CRPS is degenerative, so early and effective treatment is crucial. RSD/CRPS spreads in up to 70% of patients, with neurological pain and dysfunction in more areas of the body as the disease progresses. Visceral pain is now known to be common in advanced cases. Even with early treatment, RSD/CRPS is currently considered incurable, although in children and more rarely in adults, it may go into remission. RSD/CRPS is a complex disorder; patients often may have a range of symptom presentations; clinical features may change over time. As RSD/CRPS progresses, the abnormal pain and dysfunction of the central nervous system impacts other areas of the body and can result in total disability as muscles, bones, skin, internal organs, and the immune system become involved. Dysautonomias (disregulation of the autonomic nervous system) often occur, causing irregularities in blood pressure, temperature, digestion, cardiac, respiratory and other bodily functions.

RSD/CRPS is not a psychological condition. Studies have proven that persons who get RSD/CRPS are no different than the rest of the population psychologically. People experiencing constant pain, loss of abilities and independence, along with the isolation of catastrophic but often invisible disability, may become depressed or suffer other psychological changes. When the symptoms of RSD/CRPS are relieved, these changes will disappear. Patients are not imagining or exaggerating the pain. RSD/CRPS pain is ranked 42 on the McGill pain index, which means that researchers rate it as the most painful chronic pain disease that exists, with pain as severe than that of end stage cancer. Adequate treatment of the pain of RSD/CRPS is crucial, as the pain itself can initiate or worsen many of the degenerative changes associated with the disorder.

CLINICAL SYMPTOMS OF RSD/CRPS

• Pain is the first and primary complaint described as extremely severe, often unremitting burning, electric shock type pain with deep aching of muscles and nerve pathways.
• Spasms, usually of muscles, but sometimes of sphincters, veins, or ducts, maybe severe enough to be immobilizing, and may cause subluxations/ dislocations of affected joints or damage to internal organs.
• Swelling. Oedema may be localized to the area of injury or pain or may be diffuse, hard or pitting.
• Joints stiffness or dysfunction; it may be hard or impossible to initiate movement.
• Dysfunctional, diminished, or loss of motor function. Tremors, involuntary movement, muscle wasting.
• Changes in hair or nail growth, and/or in skin temperature, colour (often but not always in areas of swelling), texture, and sensitivity. Light touch, clothing, or gentle breeze can initiate severe pain.
• Bone softening – osteoporosis, osteopenia or osteonecrosis.

In later stages RSD/CRPS can result in:

• Spread of symptoms to other limbs or internal organs sometimes leading to total disability.
• Dysfunction of immune system; increased susceptibility to infection, allergic reactions.
• Dental problems including gum and tooth infection, bone necrosis of the jaw, loss of teeth, facial pain.
• Blurred or degenerating vision, difficulty reading, retinal detachment, and other disorders of the eye.
• Circulatory disorders: migraines, abnormal blood pressure fluctuations, vertigo, numbness, gangrene.
• Respiratory, gastrointestinal, urinary, cardiac, and/or endocrine (adrenal/hormonal) dysfunction.
• Cognitive functioning changes, short term memory, concentration difficulties, sleep abnormalities
• Complications from medications or surgical treatments
• Situational depression. Statistically RSD/CRPS carries a high risk of suicide

A printable version is also available.