Hey everyone!
I realized that I don’t even have the definition of CRPS on here! That’s not right! Below, I have attached A LOT of information about CRPS. What it is, who gets it, how you get it, where you get it, “why” you get it (which is really unclear because they still don’t know why), etc.
**We NEED more awareness regarding CRPS! Please help spread awareness by going to http://www.RSDhope.org and check out their stuff! Especially the car magnets!**
I also have custom made awareness bracelets, let me know by leaving a comment below! $10 for 2 bracelets (that includes shipping in the US)
Here is some important info about CRPS **ALL taken from http://www.RSDhope.org!*
*Complex Regional Pain Syndrome, or CRPS, formerly known as RSD or 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.
CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index.
CRPS MAIN SYMPTOMS
There are FOUR Main Symptoms/Criteria of CRPS:
**Constant chronic burning pain**- The pain, which is usually significantly greater than the original event/injury; though the affected area may feel cold to the touch to the patient it feels as though it is literally on fire; and is ranked as the most painful form of chronic pain today by the McGILL Pain Index. This symptom also includes allodynia which is an extreme sensitivity to touch, sound, temperature, and vibration.
**Inflammation**- this can affect the appearance of the skin, bruising, mottling, tiny red spots, shiny, purplish look; as well as affect the skin temperature of the affected area, cause excessive sweating, etc.
**Spasms** – in blood vessels (vasoconstriction) and muscles (sometimes referred to as rolling spasms) of the extremities.
**Insomnia/Emotional Disturbance**- includes the major changes to the limbic system such as short-term memory problems, concentration difficulties, sleep disturbances, confusion, etc.
There are a great many additional symptoms that can also occur over the course of the disease. Not every patient will have all of the symptoms and the symptoms may change over time due to the stage the patient is in, the medications the patient is on, the treatments the patient is receiving, and even such things as time of day/month/season, and whether or not she/he is currently under excess stress!
*(see ADDITIONAL CRPS SYMPTOMS on http://www.RSDhope.org )*
A. Know the common sensory signs and sensory signs and symptoms associated with CRPS;
1.Continuous burning pain in the distal part of the affected extremity.
2. Pain is disproportionate in intensity to the inciting (original) event and usually increases when the extremity is in a dependent position.
3. Stimulus-evoked pains include mechanical and thermal allodynia and/or hyperalgesia, and deep somatic allodynia (pain due to touching the joints and movement of joints).
B. Know the common autonomic abnormalities associated with CRPS;
1) Swelling of the distal extremity especially in the acute phase
2) Hyper- or hypohidrosis (excessive sweating)
3) Vasodilatation or vasoconstriction
4) Changes in skin temperature
C. Know the common trophic changes associated with CRPS:
1) Abnormal nail growth
2) Increased or decreased hair growth
3) Fibrosis
4) Thin, glossy skin
5) Osteoporosis
D) Know the common motor abnormalities associated with CRPS:
1) Weakness
2) Coordination deficits
3) Tremor
4) Dystonia
5) Neglect-like symptoms or symptoms of disturbed body perception of the affected extremity
E) Know that Sympathetically Maintained Pain (SMP) may occur in CRPS (Barron et al 1999; Ali et all
2000; Baron et al 2002).
1) Be aware that thus pain component may be relieved through specific sympatholytic procedures (e.g.,sympathetic blocks).
2) Know that SMP is defined to be a symptom or underlying mechanism in a subset of patients with CRPS and not a clinical entity. The positive effect of a sympathetic blockade is not essential for the diagnosis of CRPS. (nor does a negative result mean no CRPS is present – comment from RSDHope)
F) Understand that CRPS evolves through different stages, although the duration of each stage may be variable.
courtesy of International Association for the Study of Pain
(for the definition of many of these terms visit our Medical Terms page)
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There are TWO TYPES 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.
New research done in 2006 by Dr Anne Louise Oaklander’s team at Massachusetts General Hospital revealed the presence of small-fiber nerve damage in nearly all the CRPS Type I cases they studied. For more on this see question number 14 here
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 physican to ensure an early and correct diagnosis.**
SOFT TISSUE INJURIES – CRPS/RSDS TYPE I
What exactly are soft tissue injuries? “Soft tissue” is an expression commonly used to refer to the “softer” aspects of the outer body, not including bones and joints. Muscles, tendons, and fascia are examples. Soft tissue injuries are commonplace and range from minor to very serious, depending on the nature of the injury. (Source: Healing Soft Tissue Injuries: Muscles, Tendons, Fascia and More). We have gradually made the change-over on the website from the old, accepted, formerly used term of RSD to the now more medically correct CRPS. For a more complete understanding of the two, please see the section CRPS OR RSDS?
**From here on out we will be using the newer term CRPS. **
CRPS OR RSDS? WHICH IS IT? –
There may still be some confusion out there regarding the name of the disease. Do we call it CRPS or RSDS? Maybe your Doctor diagnosed you with RSD but everywhere you search for information it is called CRPS? (Go to http://www.RSDhope.org under “What is CRPS?”)
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.
*The Orthopod website describes this aspect very well:
“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.” (Source: A Patient’s Guide to Pain Management: Complex Regional Pain Syndrome)*
**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.
*( Mine started in my Right foot- it’s now in all four limbs)*
WHO GETS CRPS?
ANYONE can get CRPS. It is estimated there are between 1.5 and 3 million 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.
According to the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institutes of Health (NIH) “it has been estimated that CRPS may present itself in 2-5% of individuals with peripheral nerve injury” ( See National Institutes of Health – NIH CRPS INCIDENCE or the NINDS website as well). It is important to note that it states “peripheral nerve injuries”. Oftentimes when estimating the number of CRPS patients in the United States people have misunderstood that quote and/or changed it to read everything from 2-5% of all nerve injuries to 5% of all injuries. This results in greatly exaggerated estimates of the number of CRPS patients. Instead of the correct estimate of between 1.5 and 3 million CRPS patients these incorrect estimates can range as high as 5 or 6 million!
**CRPS – WHAT DOES IT FEEL LIKE?**
I was asked recently at my Doctor’s office by a visiting intern, “What does CRPS feel like?” This is a question I get asked quite often by the media as well. They want to know what the typical CRPS patient feels when they experience this pain. Every patient is asked this question, the detail of your answer depends on who is asking and the extent of interest they have in the answer. If they are asking what is CRPS pain like in comparison to other diseases you give the McGILL Pain Index answer, “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!” (look for “causalgia” on the chart). 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.
I think long-term chronic pain patients get so good at masking their pain, our pain, that when we have to reveal it, when we come upon circumstances where medical professionals need to see the actual level of pain we are in, it is difficult for us to convey the depth of the pain, to truly let down our guard, those walls we have built up, for fear of not being able to put them back up again. It can actually be difficult to completely let down those protective barriers to reveal exactly how much pain we are in and many times our Doctors, especially new ones, don’t realize just how bad our pain actually is.
So, having said that, what does CRPS pain actually feel like? Let me share with you what I shared with my Doctor recently and maybe it will help you understand our pain a little better. CRPS pain can be anywhere in the body where there are nerves. Most commonly in the four extremities but some people have it in other areas such as eyes, ears, back, face, etc. What does it feel like? Well, if you had it in your hand, imagine your hand was doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out. Now imagine it both hands, arms, legs, feet, eyes, ears; well, you get the picture. I sometimes sit there and am amazed that no one else can see the flames shooting off of my body.
The second component to CRPS is what is called Allodynia. 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.
– **I hope this helps you understand what we deal with every day.
Peace, Keith Orsini**
INCIDENCE OF CRPS
According to the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institutes of Health (NIH) “it has been estimated that CRPS may present itself in 2-5% of individuals with peripheral nerve injury” ( See National Institutes of Health – NIH CRPS INCIDENCE or the NINDS website as well). It is important to note that it states “peripheral nerve injuries”. Oftentimes when estimating the number of CRPS patients in the United States people have misunderstood that quote and/or changed it to read everything from 2-5% of all nerve injuries to 5% of all injuries. This results in greatly exaggerated estimates of the number of CRPS patients. Instead of the correct estimate of between 1.5 and 3 million CRPS patients these incorrect estimates can range as high as 5 or 6 million!**
There is much more to it! Please check out their website! http://www.RSDhope.org!
Thank you so much!
Heather Lynn
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Life as a CRPS fighter 