WHAT’S CRPS?

Complex Regional Pain Syndrome, CRPS, formerly known as RSD, Reflex Sympathetic Dystrophy, is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas.

WHICH PARTS OF THE BODY ARE INVOLVED?

CRPS is a multi-symptom condition typically affecting one, two, or sometimes even all four extremities. It can also be in the face, shoulders, back, eyes, and other areas of the body as well. CRPS is an involvement of nerves, skin, muscles, blood vessels (causing constriction, spasms, and pain) as well as bones. "Sympathetic nerves are responsible for conducting sensation signals to the spinal cord from the body. They also regulate blood vessels and sweat glands. Sympathetic ganglia are collections of these nerves near the spinal cord. They contain approximately 20,000-30,000 nerve cell bodies. CRPS is felt to occur as the result of stimulation of sensory nerve fibers. Those regions of the body rich in nerve endings such as the fingers, hands, wrist, and ankles are most commonly affected. When a nerve is excited, its endings release chemicals. These chemicals cause vasodilation (opening of the blood vessels). This allows fluid to leak from the blood vessel into the surrounding tissue. The result is inflammation or swelling leading to more stimulation of the sensory nerve fibers. This lowers the pain threshold. This entire process is called neurogenic inflammation. This explains the swelling, redness, and warmth of the skin in the involved area initially. It also explains the increased sensitivity to pain. As the symptoms go untreated, the affected area can become cool, have hair loss, and have brittle or cracked nails. Muscle atrophy or shrinkage, loss of bone density (calcium), contracture, swelling, and limited range of motion in joints can also occur in the affected limb. These are in part caused by decreased blood supply to the affected tissues as the condition progresses."

DOES CRPS SPREAD?

It may spread from one part of the body to another regardless of where the original injury occurred; CRPS can spread in up to 70% of the cases. In a small number of cases (8-10%) it can become Systemic or body-wide. (Source: Healing Soft Tissue Injuries: Muscles, Tendons, Fascia and More). CRPS usually spreads up/down the same limb, or to the opposite limb, but in an increasing number of cases it spreads to other areas of the body.

WHO GETS CRPS?

ANYONE can get CRPS. It is estimated there are approximately 200,000 Women, Men, and Children in the United States alone. 75% of victims are women. The majority of victims develop the disease in their 30's and 40's but it can hit anyone at any age. Although in recent years more and more patients in their teens and pre-teens, especially females, seem to be developing the disease.

WHAT DOES IT FEEL LIKE?

"CRPS pain is ranked as the most painful form of chronic pain that exists today and is ranked on the McGill Pain Index at a whopping 42!" If they are asking as a friend and you don't want to scare them away you simply say "It is the most pain I have ever experienced, it hurts constantly." After all, many patients have already lost a great many friends because of the disease and they don't want to lose more. If they are a loved one you try and protect them. You don't want them to know how bad it is. You don't ever want them to truly understand how much you suffer because you know how much they would then suffer as well. Many times your answer is simply, "I am fine. It is nothing I can't handle." Once in a great while you may let them know how truly horrible it is, after all, they see it in your eyes. But most of the time you try and shield them from the depth of your pain. If you have only had it for a year or two you aren't as skilled at hiding your pain, or controlling it, as someone who has had it for ten or more. ' Allodynia is an extreme sensitivity to touch, sound, and/or vibration. Imagine that same hand now has the skin all burned off and is completely raw. Next, rub some salt on top of it and then rub some sandpaper on top of that! THAT is allodynia! Picture getting pretty vivid? Now, because of the allodynia, any normal touch will cause pain; your clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by you in a crowded hallway, etc. In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. This is what allodynia is all about. Imagine going through your daily life where everything that you touch, or that touches you, where most every noise around you from a passing car or plane to children playing, causes you pain, this, in addition to the enormous pain you are already experiencing from the CRPS itself. Imagine living with that pain and allodynia 24 hours a day, every day, for months, years, and longer. There are many other symptoms which you can read about in our CRPS SYMPTOMS section but these are the two main ones that most patients talk about the most.

DIFFERENT TYEPS OF CRPS?

CRPS Type I - formerly known as RSDS, can follow a minor nerve injury, a simple trauma (fall or sprain), break or fracture (especially wrist and ankle), a sharp force injury (such as a knife or bullet wound), heart problems, infections, surgery, spinal injuries/disorders, RSI's (Repetitive Stress Injuries), CTS (Carpal Tunnel Syndrome), Tarsal Tunnel Syndrome, injections, and even some partial paralysis injury cases. There are some cases of CRPS Type I where there the nerve injury cannot be immediately identified. As many as 65% of CRPS/RSDS cases come from soft tissue injuries; such as burns, sprains, strains, tears, and most of the problems that end in “itis” ; bursitis, arthritis, and tendonitis to name a few.

CRPS TYPE II, once known as CAUSALGIA, involves definable major nerve injury. Early recognition of the disease, correct diagnosis, and proper treatment, are all essential in keeping CRPS from becoming a chronic condition. Treatment must begin within months of onset or significant probability of long-term disability occur. It is essential to find a CRPS-educated physician to ensure an early and correct diagnosis.

WHAT DO WE CALL IT TODAY?

Is there a difference between CRPS and RSDS? What are the differences between CRPS and RSDS? One Doctor tells me "You have RSD" while another says, "No, it is CRPS.", and a third tells me "They are the same thing." Now I am totally confused. Which is the right term? Why is a there a CRPS Type I and CRPS Type II, and what is the difference between those two? It actually is quite simple and it should have all changed a number of years ago but there are still some physicians out there who cling to the old terminology and they are making it difficult for everyone to simply move on. CRPS TYPE I (one), until recently, is what has always been known as Reflex Sympathetic Dystrophy Syndrome, RSDS or classic RSD. It involves soft tissue injuries such as burns, sprains, strains, tears, and most of the medical issues that end in “itis” (bursitis, arthritis, and tendonitis to name a few). It can involve minor nerve injury. On this website, and most places on the internet and in the medical community it is now referred to as CRPS. CRPS TYPE II (two) involves damage to a major nerve. It used to be called Causalgia. CRPS Type II also involves a clearly defined nerve injury. This is not always true of Type I where the source of the injury is not always known. So gradually everyone, Doctors, the medical community and patients, switched over to the new terminology, CRPS Types I and II.

MAIN SYMPTOMS OF CRPS?

TREATING CRPS WITH KETAMINE

At Mackay Base Hospital in Australia, 33 patients suffering from complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD), were administered continuous subanesthetic intravenous infusions of ketamine. Twelve of the 33 patients received a second course of therapy; two received a third. Twenty-five (76%) experienced complete pain relief, six (18%) felt partial relief, and two (6%) had no relief. Repeat treatment was correlated with improved response. The 12 patients receiving second treatment courses experienced complete relief of CRPS pain. After their first course of ketamine therapy, 18 patients (54%) were found to be free of pain for three months or longer and another 10 (31%), for six months or longer. Of the 12 patients who were administered a second course of treatment, 7 (58%) experienced relief for a year or longer. Many other studies have confirmed the efficacy and safety of ketamine for pain relief in a variety of conditions.

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