What is CRPS/RSD?
Complex Regional Pain Syndrome (CRPS) or reflex sympathetic dystrophy (RSD) is a rare, chronic and progressive pain disease that affects the skin, muscles, joints, and bones. It can often render the sufferer disabled in affected areas and as a systematic disease it has a high potential to spread to other areas of the body. In fact 70% of sufferers have spreading of some sort, either within the effected limb or into other limbs. 35% of patients experience symptoms in all areas of their body, organs included. CRPS often begins as a result of an injury triggering the nervous system to become erratic and over sensitive. It can begin as a result of something as minor as a sprained ankle, a broken bone, or surgery. I’m my case it is the result of a burn injury to my Left hand, arm and shoulder. My face and neck were also burnt, but luckily it left no scars or symptoms.
Complex Regional Pain Syndrome characterized by the following symptoms:
Pain: burning sensations, stabbing pain, grinding pain, severe tingles and electrical sensations. Moving or touching the limb is often intolerable.
Skin and inflammation: Skin sensitivity (allodynia), local swelling and abnormally increased sweating. Changes in skin temperature, usually hot but sometimes cold and a dramatic change in skin colour ranging from bright red to a reddish violet.
Muscular: Muscle spasms, tremors, weakness and atrophy.
Skeletal: softening and thinning of bones, joint tenderness and stiffness. Restricted and painful movement
Limbic (brain): Insomnia, short-term memory problems, concentration difficulties, moodiness and anxiety.
How Bad Is The Pain?
CRPS has the unfortunate honour of being described as one of; if not the most painful long term conditions in Humans (cases have been found in animals). It scores a horrific 42 out of a possible 50 on the McGill pain scale, above such events as amputation and childbirth.
The pain tends to work in levels. Firstly there is the everyday, constant pain and then there are the pain flares. Flares can come from, cold weather, too much activity, or simply because it wants to. Pain flares come with increased pain and symptoms. They can last hours or weeks and can differ in their severity. I am often left unable to walk, hold things, talk clearly and sometimes I can not tolerate movement in any part of my body. The pain is just too much.
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 probability of long-term disability will occur. Being a rare and often unknown disease it is common for a person to go months or years before a diagnosis is made. In the USA the average diagnosis is made after three years. By that time the disease is too far gone and damage to the affected limb is not reversible. Sadly there is little chance of remission after the first year of the condition.
Common treatments are physical and occupational therapy, medication, mirror box therapy, graded motor imagery, tactile discrimination training, nerve blocks, spinal cord stimulators and Ketamine infusions. Many people also benefit from Hydrotherapy, Epsom Salt Baths, Aromatherapy, Massage, Good Nutrition, Vitamin C, Magnesium and many other alternative therapies. It is important to keep the body warm as cold temperatures can bring on Pain flares. As can extreme heat.
If CRPS is caught early then remission is possible for some people. Often if a diagnosis is given within the first 3 months and medication and physical therapy is successful, then CRPS can have a positive outcome. Unfortunately for me, despite my early prognosis and correct treatment, my CRPS spread quite aggressively in the beginning. However, every outcome is different. For some their symptoms settle after a few years, while others will continue to suffer for the rest of their lives. CRPS can quickly spread to the entire limb and changes in bone, nerve and muscle may become irreversible. The limb, or limbs, can experience muscle atrophy, loss of use and function. For 5% of sufferers, medication will have little affect of their pain and symptoms. Leaving them to cope using alternative methods like meditation and other techniques. Many people may eventually need the assistance of walking aids or wheelchairs. A large percentage of sufferers will be unable to continue working during pain flares, or not be able to work at all. CRPS can easily consume a person’s life and support from family and a knowledgeable medical and therapeutic team is essential.
CRPS is not a fatal disease, however, its high suicide rate has earnt it the nickname “the suicide disease” as many sufferers resort to taking or attempting to take their lives as a desperate attempt to end their suffering. With the invention of the internet, connecting with other sufferers has become more possible and CRPS support groups have become a positive coping tool.
For me having CRPS is feeling like I was kicked when I was already down. It’s not fair that anyone be affected by this monster. But, I find it important to just get on with it and have a positive attitude. I try to look at it as my life being pointed in a different direction. But yes, sometimes it is just shit!