Since this whole journey started with the onset of CRPS (which we tenderly refer to as CRaPS), I thought you might like to know a little more about it.
Complex Regional Pain Syndrome (CRPS) is a pretty lame disease...
CRPS is a disorder of the sympathetic nervous system, and it has no cure. It is extremely painful--medically rated as the worst form of chronic pain that exists today, and rated a 42 out of 50 on the McGill Pain Index--worse than unmedicated childbirth and amputation of a digit without anesthesia. Untreated, it can lead to atrophy and loss of use of the affected extremity.
A little photo journey through our CRPS journey...
- Constant pain--burning, stabbing, aching.
- Skin changes and inflammation (mine, for the first nine months, looked like a shiny plastic Barbie leg, and it alternated in color between purple, splotchy orange, and gray).
- Temperature changes (usually ice cold to the touch; mine was so cold that the hospital couldn't locate a pulse on my foot even with doppler; after my first Nerve Block procedure, I regained SEVEN degrees of temperature in my leg, and FIVE more at the next one!).
- Extreme sensitivity to touch, barometric pressure, and vibration (called Allodynia).
- Spasms in the blood vessels and in the muscles of the extremities.
- It involves the nerves, skin, muscles, bones, and blood vessels.
- Short-term memory problems, concentration difficulties, and sleep disturbances.
CRPS can go into remissions. The remissions are completely unpredictable (however, you usually show an incline in improvement leading up to the remission).
My CRPS case developed in my right leg, following twisted ankle.
- I was incredibly blessed because the disease was diagnosed within a week of the injury that instigated it. I spent four days in the hospital and came out with a clear answer, so we were able to start treating it right away.
- I had to stop nursing my baby on the spot (the youngest of my three, who were, at the time, all under the age of 4) right there in the hospital because of the long-term medications I was going to have to be on. He had severe allergies to dairy and soy, and he never even taken a bottle. He boycotted taking a bottle for six days, and wouldn't look me in the eye for two weeks after that because it all was so confusing for him.
- I lost the use of my right leg for many months. My use of my right leg is still unpredictable. I never know for sure whether I'll be walking or needing crutches from day-to-day.
- I've had months and months of physical therapy, first in an underwater treadmill and then in an antigravity treadmill.
- I had six Lumbar Sympathetic Block (Nerve Block) procedures (one of which went terribly wrong and filled my bloodstream with anesthesia, sending me into a life-threatening series of seizures that lasted an entire scary hour), and have been on a variety of medications.
- My doctors have most recently discovered that the temperature has a direct effect on my leg. The warmer it is, the better I can walk and the less pain I feel. So, we keep leg-warmers on it constantly, I have to limit when I can go outside, and we have to be incredibly careful about keeping my leg from getting cold.