When I first received my diagnosis of complex regional pain syndrome I had never heard of this disease.
When I first started researching this disease the more frustrated I became. For CRPS being the most painful condition known to the medical community (see pain index below) there is very little research done. No definite known cause, no diagnostic test, no proven treatment course to follow, no cure.
That does not mean those diagnosed with CRPS are without hope or crippled for the rest of their lives. The more I researched the disease the more I was able to understand what was going on at the visible level as well as at the molecular level.
From what I understand, CRPS is speculated to be caused by minor (type 1) or major (type 2) nerve damage. CRPS does not affect everyone. For those that it does it usually starts in a limb that has been injured, has pain disproportional to the injury, and slow to heal. (This describes every injury I’ve every obtained). CRPS spreads to different parts of the body in 70% of cases. Systematic CRPS where the entire body is affected is possible, but rare.
The symptoms associated with CRPS are due to the constant “on” state of the body’s alarm system. Nerves send messages (I like to picture them as balls) all the time and the brain interprets which to respond to. In the case of CRPS the nerves in affected areas send too many pain messages to the brain. The NMDA receptors (I like to picture these as baseball gloves catching the ball messages) in the brain are over-sensitive and respond to ALL of these signals. The brain’s pain response is to protect the body against a threat to the body and respond with pain if there is one. In the case of CRPS there is no threat, but the brain is responding with pain.
The body’s response to the perceived threat are the visible and invisible symptoms of CRPS:
- Constant burning pain in affected area/extremity
- Disproportionate pain in the affected area
- Increased pain due to stimuli such as temperature change, sound, vibration, touch, movement of joints
- Increased or decreased nail and/or hair growth in the affected area
- Thin, glossy skin
- Coordination loss and/or incorrect perception of the affected area in space
The autoimmune responses in this condition include:
- Swelling of the area
- Excessive sweating in affected area
- Changes in skin temperature and/or skin color (can change white, red, or blue) of affected area
- Joint stiffness, swelling, damage
Symptoms can differ per person and can also change over time. This makes this disease difficult for physicians to pinpoint. The most common symptoms are pain, swelling, color change (usually redness), change in skin temperature, and hypersensitivity to cold and touch.Complex Regional Pain Syndrome can not be treated, but the pain can be managed with lifestyle, diet, medication, and physical therapy.
Not all CRPS symptoms are visible to others. That’s one of the problems with “invisible diseases”. Many people think if they can’t see the pain you are in or each and every one of your symptoms then you must not be that sick.