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Life With CRPS- What Is CRPS?

Complex Regional Pain Syndrome or CRPS, formerly known as RSD(Reflex Sympathetic Dystrophy), is a progressive incurable chronic severe pain disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with complex regional pain syndrome. The pain from CRPS is usually out of proportion from the original injury and is characterized by constant and extremely intense burning pain. This disease most often affects one limb (foot, leg, hand, or arm), but can later spread if not diagnosed and treated in the early onset. CRPS is believed to be caused when the peripheral nervous system and central nervous system which is a division of the autonomic nervous system is damaged or malfunctioning. The central nervous system is composed of the brain and spinal cord. The peripheral nervous system involves nerve signaling from the brain and spinal cord to the entire body. CRPS is generally characterized by prolonged or excessive pain and change in skin temperature, color, and/or swelling in the affected area. There are psychological effects from the disease also. Your Limbic system, the part of your brain that controls emotions and plays a role in the formation of new memories. You will have depression, memory loss, PTSD, cognitive problems, anxiety, loss of confidence, difficulty relaxing, undue stress, suicidal thoughts(tell your doctor immediately), an inability to cope with daily life and feeling of loneliness. Problems communicating with loved ones and friends. This is why you cry for no reason. This is why you think no one understands. This is why you forget things. This is why you can’t shut your brain off at night. This is why you have paranoia. This is why your emotions are all over the place. This is why you feel all alone. THESE ARE JUST SYMPTOMS OF CRPS, YOU ARE NOT CRAZY!! CRPS is divided into two types: CRPS type 1 and CRPS type 2. Type 1, which used to be called reflex sympathetic dystrophy syndrome, is when people have no confirmed nerve injury. Type 2, which used to be called causalgia, is when someone has confirmed nerve damage. There are 4 main issues CRPS sufferers have to contend with: Chronic burning pain- This pain is excruciating and never-ending. It feels like a red-hot knife is piercing your skin. Along with this burning pain is allodynia which is the extreme sensitivity to touch, temperature, sound, and vibration. Inflammation- The swelling can become very extreme. The skin will show mottling, bruising, red spots, shiny and appear purple. The skin temperature will go down and sweating of the affected area will increase. Spasms- The affected extremity will convulse and twitch, This will sometimes affect the whole body also. Insomnia and emotional distress The Limbic system is affected, which supports emotion, behavior, motivation, olfaction, and long-term memory. People with this condition often have these common symptoms also: Skin texture change Muscle atrophy Bone density loss Strange nail and hair growth Stiffness Muscle coordination problems Tremors or jerking movements of the affected limb Short term memory problems Emotional and psychological issues The McGill Pain Index- CRPS Courtesy of The Princess in the Tower Over time the symptoms can change or come and go. I know, for me, my symptoms are in a constant state of flux from minute to minute. I describe it as ‘riding the wave’. For example, as I am typing this, I am having muscle spasms, burning feeling, memory issues, trouble finishing sentences, terrible dry mouth and my skin is colored red and feels cold to the touch. The McGill pain index is a scale of rating pain developed at McGill University in 1971 by Melzack and Torgerson. It is a self-report questionnaire that allows individuals to give their doctor a good description of the quality and intensity of pain that they are experiencing. CRPS ranks above childbirth and amputation of a finger/toe. It is considered to be the most painful form of chronic pain that exists today. I talk about CRPS in an article I wrote for Hubpages, click this link to go to their website called Healdove. That’s all the technical and medical straight forward things to know. Here’s the part that no one tells you: This is a shitty horrific disease that a lot of doctors have no clue how to treat it, nevermind the fact that many do not know what it is. You MUST find a doctor who can help you, be very choosy of the doctor you pick. Make sure he/she has a proven track record with CRPS patients. If you encounter a doctor that is not familiar with it, they are not to blame, it’s just that lot do not know about it because there is not a lot of consistent medical studies on it. This is why there are no set guidelines on how to diagnose or treat it. So much of CRPS treatment is done by trial and error. You will have ups and downs and even though there is no cure, you must remain optimistic and never lose hope. Throughout my blog, I will discuss being your own ‘Chief Operating Officer’ or ‘CEO’ of your battle with CRPS. You will learn a lot from your doctor, but so much more will be gained through your own research. There is no ‘easy way’ with this disease. When there is information scattered across tons of websites, it will be your job to take notes or keep a journal, your memory loss will make it imperative to write things down! You will have to stay strong and be persistent and ask questions until you are blue in the face. Take control of your care and be your own best medical advocate, the CEO of your CRPS. This entire website contains my opinions and nothing more. I do not claim to be a doctor or a therapist. I will share what I have learned, and if you have found some helpful information that is worth sharing, please let me know. You are NEVER alone!

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