"Suicide Disease" or Complex Regional Pain Syndrome (CRPS)
What is CRPS?
Complex Regional Pain Syndrome (CRPS), formerly known as RSD, is a progressive incurable chronic pain condition that most often affects one limb (foot, leg, hand, or arm), usually after an injury. The disease can affect other parts of the body also and is known to spread without warning. CRPS is believed to be caused when the peripheral and central nervous system is damaged or malfunctioning. The central nervous system is composed of the brain and spinal cord and the peripheral nervous system involves signaling nerves from the brain and spinal cord to the entire body. CRPS sometimes occurs after an injury, and the pain is disproportionate to the injury. The pain can be so severe, that it is also known as a 'suicide disease'.
CRPS sufferers may also have psychological effects from the disease due to the effect it has on the limbic system, which supports emotion, behavior, motivation, olfaction and memory. This often leads to depression, mood swings, anxiety, social withdrawal, lowered confidence, paranoia, inability to concentrate, memory loss, insomnia, and feeling hopeless. Suicide rates among CRPS sufferers are high because of the excruciating never-ending pain, sleep deprivation, frustration, social isolation, and depression.
CRPS is divided into two types: CRPS-1 and CRPS-2. CRPS-1, which used to be called reflex sympathetic dystrophy syndrome, is when people have no confirmed nerve injury. CRPS-2, which used to be called causalgia, is when someone has confirmed nerve damage.
First and foremost, the key symptom for CRPS is the intense and prolonged pain. It is often described as being "burning" or "stabbing," and it can come and go intermittently. Often, along with the intense pain comes an increased sensitivity to any type of touch in the area of the pain. It makes any skin contact unbearable.
People with this condition often have these common symptoms:
- Skin temperature change
- Skin color change or blotchiness
- Skin texture change
- Muscle atrophy
- Bone density loss
- Strange nail and hair growth
- Muscle coordination problems
- Tremors or jerking movements of the affected limb
- Memory problems
- Emotional and psychological issues like depression and anxiety
There is no singular test for CRPS, but hopefully, your doctor recognizes your symptoms and starts pain medications also starts testing you right away to find out if it is CRPS. These tests include:
- Bone scan- This will show if there are any bone changes
- Sympathetic nervous system tests- This test will check for problems with your sympathetic nervous system.
- X-rays- Also checks for any bone changes
- Magnetic resonance imaging (MRI)- Test to see if there are any tissue changes-
- Quantitative sudomotor axon reflex test QSART)- This basically tests the amount of sweat coming from the affected limb
- Thermograhy- This test will show temperature changes
These tests and your symptoms will or will not point to a diagnosis of CRPS. If the tests point towards a diagnosis of CRPS and you already started to take proper pain medications and continued using the affected limb normally, it is possible to stop CRPS before it even starts.
The pain is not in your head. You are not crazy. Complex Regional Pain Syndrome is a real disease.
What does a diagnosis of CRPS mean to you?
Too many times the disease is misdiagnosed or not diagnosed quick enough and is often misunderstood by medical professionals. It is in your best interest to learn everything you can about the disease and be your own medical advocate. Research and study the disease, the more you know, the better off you will be.
The treatment plan will include but is not limited to physical therapy, Psychotherapy, and nerve blocks.
If you and your doctor are unable to stop the CRPS from progressing, do not get discouraged, stay positive and realize you can still beat it. This is the time to buckle down and keep fighting every single day, hour and minute.
You must be ready for what is going to happen to you both physically and emotionally, for this may the hardest thing you have ever encountered in your life.
Your medications, which might include Gabapentin, Lyrica, Celebrex and whatever else you and your doctor agree will help. The medications should help with the pain a bit, but please understand that you will have never felt anything like it in your life. The Mcgill Pain Index shows that CRPS is more painful than amputating a finger or toe with any anesthesia.
If you haven't already, you will encounter some or all of the symptoms listed above. The pictures to the right show what the Complex Regional Pain Syndrome can do to an affected leg and foot. As you can see there is discoloration, swelling, shininess, and blotching of the skin. There can also be abnormal nail and hair growth. The extremity gets very cold and clammy to the touch. The skin will be very sweaty at times also and skin sensitivity will be unimaginable.
Visiting your doctor and a physical therapist regularly for the body and also periodically visiting a therapist for the mind will be part of your daily life. Pain and side effects will something you will deal with every day also. Simple tasks like taking a shower, making your bed or cooking something to eat may seem next to impossible.
Psychological effects of CRPS are also part of the patient's daily life. Memory loss, depression, anxiety, trouble finishing sentences or finding the right words, lethargy, and concentration are some of the issues they deal with. Social situations become strenuous and engaging with people is unbearable at times. Fits of crying for no apparent reason intensifies can intensify a need for isolationism. Daily chores and basic life functions are huge obstacles that seem overwhelming most of the time.
One of the biggest complaints heard from CRPS sufferers is that no one understands. This feeling can deepen the depression and if not dealt with can cause serious problems or dire circumstances.
This is why it is so important to treat body and mind. It is suggested to have more than just a Physiatrist or a doctor on your team. A Psychiatrist or Psychologist are better equipped to treat the mind and having one that is experienced with CRPS is vital to your treatment.
Keeping a positive attitude is not easy when dealing with CRPS. It is very important to have a great support group. Reach out to family, friends, doctors, online forums or a therapist. Get a strong team in your corner for the battle ahead.