CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index. This is the pain scale that is utilized in doctors offices and hospitals; when they ask if your pain is 0-10.
There are FOUR Main Symptoms/Criteria of CRPS:
- Constant chronic burning pain (includes allodynia - extreme sensitivity to touch, sound, and vibration)
- Inflammation (this can affect the appearance of the skin, bruising, mottling, etc.)
- Spasms-in blood vessels and muscles of the extremities
- Insomnia/Emotional Disturbance (includes the major changes to the limbic system such as short-term memory problems, concentration difficulties, etc.)
Sometimes patients in the US will see 10 - 50+ doctors before they are properly diagnosed with CRPS. This is a very difficult disease to diagnosis especially if you are not referred to the propper doctors that are experienced in this disease.
WHAT 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)
CRPS - WHAT DOES IT FEEL LIKE?I was asked recently at my Doctors office by a visiting intern, "What does CRPS feel like?" This is a question I get asked quite often by other individuals as well. They want to know what the typical CRPS patient feels when they experience this pain. Every patient is asked this question now and again and you have to think of your answer by the way the person asked. How interested are they in your answer and how detailed an answer are they looking for? If they are asking what is CRPS pain is 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!". 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 Drs, 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 foot and ankle, imagine your foot and ankle was doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week - for the most part... it is a sharp, burning pain. There are times it turns into a cold CRPS foot where it will turn purple; yes purple; it is ice cold to the touch and then for some unkown reason my foot and ankle goes back to the sharp burning pain. As for my back that is a different story. It hurts so bad that I am unable to sleep on my back, I have to sleep on my side. The area on my back is a sharp, burning pain. Sometimes it starts out with a prickling feeling and then it will move onto the hot burning feeling. Sometomes I sit there and am amazed that no one else can see all thises changes with 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 foot, ankle and back 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. 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. Of course there are also the temperature changes, feeling of knives going through your foot, ankle or back - and many other awful painful changes that your body goes through.
Today I wanted to give you an idea of what CRPS really was, what a typical patient goes through and hopefully answer some questions for you on this awful disease / syndrome. I hope that I was able to do that.
Please share this blog with your friends and keep sending it along. This will be the only way that the word will get out about CRPS and the tremendous need that there is for research and proper treatments!
If you want to contact me or send something or a dontation to help meet your $1 Million goal feel free to contact me at: T. Patterson
14242 Raintree Rd.
Tustin, CA 92780
I commit to anyone that wants to send funds to assist with Research and assisting patients with treatment - I promise that all funds will be sent to the appropriate funds and assist with getting the FDA to approve the treatments that are already working in other countries such as Germany.
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