First and foremost Complex Regional Pain Syndrome or CRPS, formerly known as RSD(Reflex Sympathetic Dystrophy) is a living hell! There is no sugar-coating this disease. This is not meant as a scare tactic or to freak you out, I intend to be straight forward and honest throughout this blog. If you have this disease you are in for the fight of your life. If you are here as someone who knows a person with the disease, you are also in for a fight of your life. This disease affects everyone involved. The more you know, the more power you will have over this disease. Hopefully, this blog will help you learn a little more and point you in the right direction.
I am not a doctor, but I do have this disease, and it is my goal to help as best as I can and share what I have learned.
Complex Regional Pain Syndrome:
CRPS 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 the 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. Pain from CRPS is out of proportion from the original injury and is constant and extremely burning. 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 because it affects 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. This is why you cry for no reason, cannot sleep, your mind races, you’re forgetful, you feel alone, paranoid and feel like no one understands. THESE ARE 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 color and texture change
- Skin is clammy and cold
- Skin blotchiness
- Extreme skin sensitivity
- Skin itchiness
- Muscle atrophy
- Bone density loss
- Abnormal nail and hair growth
- Muscle coordination problems
- Tremors or jerking movements of the affected limb
- Short and long term memory problems
- Emotional and psychological issues(this is a very substantial part of the disease) including depression, insomnia, anxiety, paranoia, suicidal thoughts, social withdrawal, and stress
- There will be other issues you will encounter, some from the CRPS and some from the medications, they differ from person to person
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:
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.
The CRPS Lowdown:
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 and horrific disease that many people are unaware of, with many doctors that do not know anything about it and may, in fact, overestimate their knowledge of the disease. 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. DO NOT BE AFRAID TO ASK QUESTIONS! There is not a lot known about the disease and this is why there are no set guidelines on how to diagnose or treat it. So much of CRPS treatment is 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 from your doctor, but your own research will go a lot further. There is no ‘easy way’ with this disease. Information is scattered across the internet, it will be your job to take notes or keep a journal, write everything down. Your memory loss will make it very difficult to keep track of your treatment. 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 and I am also learning as I go. I will share what I have learned, and if you have found some helpful information that is worth sharing, please leave comments.
You are NEVER alone!