Complex Regional Pain Syndrome is a neurological chronic pain disease of the central nervous system. There have been many names for this disease and similar symptoms, but the most current and agreed upon terms are CRPS and Reflex Sympathetic Dystrophy (RDS).
There are two types.
- Type 1, which occurs in the entire body. (90% of patients¹)
- Type 2, which occurs in one part of the body, most commonly in one limb. (10% of patients¹)
It is considered a rare disease and has no cure. It is commonly associated with the McGill Pain Scale, which categorizes CRPS related pain as higher than amputation, childbirth, and chronic back pain among others.
Early diagnosis is key. (Let me say that again – early diagnosis is key!) The first signs and symptoms include pain continuing at a higher level beyond the otherwise “normal” healing time, sensory changes/loss and temperature changes. There is usually a history of trauma or surgery involved before CRPS develops. It is believed that if it is diagnosed within the first 6 months ¹, it is much easier to treat effectively to the point of remission. Within 12 weeks of onset, remission chances are even better. Unfortunately, the majority of people with CRPS get a later diagnosis where remission is highly unlikely. Luckily, there are many treatment options to manage the condition in the long term.
The Budapest Criteria is most commonly used to diagnose CRPS. There is not one specific test for it, but rather a combination of many symptoms to watch out for. The first sign is usually disproportionate and persistent pain relating to the original injury. The four components of the Budapest Criteria are
- Pain that is disproportionate to the original injury or event.
- Patient reports experiencing at least three of the four categories of symptoms (Sensory sensitivity, Vasomoter changes in either skin colour or temperature, Sudomotor (sweating) or Edema (swelling), and Motor impairment or changes in the surrounding skin, nail or hair.
- Doctors observing at least two of the four categories.
- There is no better diagnosis to explain these symptoms and changes.
Diagnostic tools to determine these symptoms include a thermography test to monitor temperature changes or skin sensitivity tests, but mainly it is the observation of patient and doctor. Primary care providers can diagnose but often send patients to pain management specialists, neurologists, or anaesthesiologists as their specialists.
Treatment is personalized depending on the patient. It can be treated in many different forms, with best results while using medical, therapeutic and psychological options in conjunction with one another. There are many treatments, including
- Physical Therapy
- Occupational Therapy
- Psychological Therapy
1 – Common medications are Anticonvulsants, Opiates, Antipdepressants, Corticosteroids, NSAIDS, Low Dose Naltrexone, Transdermal Medications.
2 – Common procedures include Intravenous Lidocaine or Ketamine, Nerve Blocks, Spinal Cord Stimulators, Dorsal Root Ganglion Stimulalion, Intrathical Drug Pumps, and Pulsed Radio Frequency Treatment.
3 – Physical Therapy is a large component of managing CRPS. This includes Graded Motor Imagery (Left/Right discrimination, Visualization and Mirror Therapy), desensitization, neurostimulation, TENS units, Calmare Therapy, infra red heat therapy (or any heat therapy), biofeedback, gentle movement, deep breathing, and exercise.
5 – Psychological Therapy is an important aspect to preemptively consider as most patients are at risk of developing pain related depression or anxiety. Cognitive Behavioural Therapy is commonly suggested, but the main thing is that the patient is getting some form of therapy, talk therapy, or support group participation; whatever style they prefer.
What can cause pain/flares?
“Flares” or “Flare ups” are the terms used to describe when your regular, base level of chronic pain becomes worse for a specific amount of time. A flare can last a few minutes to a few months, and anywhere in between. With CRPS, there is not always a reason for a flare, which certainly demands patience of the person experiencing it. You can’t stop all flares, but there are things you can avoid in attempts to minimize the severity and length of them.
Using ice should be avoided at all costs, as well as any immobilization of the affected limb. High humidity causes pain to rise. Loud vibrations or over stimulating noise can be too much for the nervous system that is already overstimulated. Any such similar extremes should be avoided, including hot and cold temperatures or emotional and physical stress. The nervous system and CRPS are with us in every moment so it is best to avoid any situations that trigger your pain if possible.
What to avoid
- Loud vibrations/over stimulating noise
- Extreme temperatures
- Extreme emotional/physical stress
Please see the sidebar on this page for more scientifically proven information on CRPS, organizations around the world who are working hard on awareness, and some fully online support groups. There are endless things to learn about this condition and how to manage it or support those who do, so please consider this page as an introduction. Keep learning!