1.) The mean age at diagnosis is 42 years. However, we are seeing more injuries among young girls, and children as young as 3 years old can get CRPS.(1)
2.) One of the symptoms of RSD/CRPS is Edema (Swelling.) Medical Professionals tend to tell Patients to use Ice. Ice is OFTEN mistaken as the best treatment, but in many cases it can actually cause further nerve damage. Moist heat has been shown as a better alternative with elevation and other means to control the edema.
Everyone is different but use caution any time ICE is suggested.
3.) There is no cure for RSD but the earlier you can get treatment the better, but never give up the hope of remission.
Some promising treatments include sympathetic nerve blocks, medication (such ascalcitonin, IVIG, Ketamine, Calcium channel/Beta/Sodium/NDMA blockers, steroids, tricyclicanti-depressives, anti-convulsives, and NSAIDs), physical therapy (Aqua, Horse, and Typical Dry therapies), psychotherapy, Calmare, ultrasound and electrical stimulation. More invasive treatments include, spinal cord stimulators, dorsal column stimulators, ketamine infusions, morphine pumps, STS (Vecttor). There are more treatments available as the research progresses.
Any treatment you start should be well researched and discussed with your doctor before starting or ending a regimen of treatment.
4.) RSD pain is ranked 45 on the McGill pain index, which means it is rated as the most painful chronic pain disease that exists. It is above cancer(non-terminal), and both medicated and non-medicated pregnancy.
5.) Early and accurate diagnosis and appropriate treatment are key to recovery, yet many health care professionals and consumers are unaware of its signs and symptoms. Typically, people with CRPS report seeing an average of FIVE physicians before being accurately diagnosed.(1)
6.) It is not a rare disorder, and may affect millions of people. It is hard to pinpoint the number of people who have RSD/CRPS, though some estimates put the number of people afflicted with this syndrome at 6 million (2) and other estimates claim between 5% and 10% of the population.
That makes the RSD/CRPS population of the United States greater then that of the Combined Military, 2,221,502. (3)
7.)This is not a mental disorder. The development of psychological problems does occur in some patients. It is important to develop a good support system with your doctors, family and friends to alleviate additional stress. Find and utilize local or online support groups. YOU ARE NOT ALONE, YOUR PAIN IS REAL
8.)There are two types of RSD/CRPS
Type Two (II) involves damage to a major nerve. It used to be called Causalgia. It also involves a clearly defined nerve injury that can be tested by an Electromyography (EMG).(4)
We deserve to wake up each day and smile. We are more than just patients, we are mothers, fathers, daughters, sons, aunts, uncles, nieces, nephews, grandchildren, grandparents, and more greatly we are unique. We are what we allow ourselves to be and if we allow a big bully like RSD/CRPS define who we are, then that is wrong! You are worth it, and that’s a FACT!12.)
Reflex Sympathetic Dystrophy remains grossly under treated in most patients. The reasons for this are: lack of knowledge among both health professionals and consumers about pain management; exaggerated fears of opioid side effects and addiction; and health professionals’ fear of medical board and DEA scrutiny, even when controlled substances are used appropriately for pain relief. (5)13.)
The symptoms of CRPS vary in severity and length. Some experts believe there are three stages associated with CRPS, marked by progressive changes in the skin, muscles, joints, ligaments, and bones of the affected area, although this progression has not yet been validated by clinical research studies.
(The Stages are no longer used for Clinical Use)Stage one is thought to last from 1 to 3 months and is characterized by severe, burning pain, along with muscle spasm, joint stiffness, rapid hair growth, and alterations in the blood vessels that cause the skin to change color and temperature.
Stage two lasts from 3 to 6 months and is characterized by intensifying pain, swelling, decreased hair growth, cracked, brittle, grooved, or spotty nails, softened bones, stiff joints, and weak muscle tone.
In stage three the syndrome progresses to the point where changes in the skin and bone are no longer reversible. Pain becomes unyielding and may involve the entire limb or affected area. There may be marked muscle loss (atrophy), severely limited mobility, and involuntary contractions of the muscles and tendons that flex the joints. Limbs may become contorted. (6)
14.)Allodynia (Ancient Greek άλλος állos “other” and οδύνη odýni “pain”) is a pain due to a stimulus which does not normally provoke pain. Temperature or physical stimuli can provoke allodynia, and it often occurs after injury to a site.
Allodynia is different from hyperalgesia, an extreme reaction to a stimulus which is normally painful.Those who experience allodynia can experience severe pain sensation simply from clothing, air movement (such as a breeze or wind), or a light touch on the arm.
16.)RSD/CRPS is often called the “Suicide Disease,” because it causes so much pain that the patients are in greater risk of taking their own life. That is why it is so important to get support for yourself and fellow RSD Angels. Let not one flame of an RSD Angel burn out! We are here for you! If you ever need to talk email firstname.lastname@example.org or call the National Suicide Hotline 1-800-273-8255.
17.)Consult with a knowledgeable Anesthesia Doctor when considering surgery, as there are studies regarding different methods to decrease the risk for spread or worsening of symptoms.
18.)Immobilization is not recommended in many cases so be sure to discuss the need,
if it arises, with your RSD/CRPS doctor
19.) Pain is a vital sign! Do not allow it to be ignored. Your pain should be assessed before and after intervention, if it is not please advocate for yourself in this area.
20.)Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome, Causalgia, Sudek’s Atrophy,Sudek’s Dystrophy,traumatic arthritis, minor causalgia, post traumatic osteoporosis, post traumatic pain syndrome, post traumatic edema, post traumatic angiospasm, shoulder/hand syndrome, and sympathetically maintained pain syndrome.
All names for the same disease!
No Matter how you say it….it Hurts!