For complex regional pain syndrome patient Keith Orsini, even the simplest things can be painful or complicated:
Showers can be very painful, even with the right temperature. The needles of water are painful in themselves. A soak in a tub of warm water with Epsom salts is far better, but not so easy when you are a big guy. Tubs were designed 75 years ago and never updated for today’s larger people. Aqua therapy is the best form of physical therapy for CRPS patients but it has to be in a heated pool where the temperature is 86-90 degrees. Cold water works the same as ice. It causes pain by constricting the blood vessels, and damages the protective sheath surrounding the nerve.
Exposure to illness:
We take a lot of precautions; always using antiseptic wash whenever we get back into our car from school, the store, church – pretty much any time we are out in public. We are sure to get our flu shot each year. Still we get sick more than most people, but if we worried all the time about catching something we would never go anywhere or interact with anyone. It is simply the cost of living life. I tell the patients we talk to, you can seal yourself in a cocoon and try to protect yourself completely from harm. But that is no life. Don't let CRPS steal your life away. Simply adjust your sails a little.
This is a big deal for us. I try to wear the softest clothes possible whenever I have to wear clothes. I wear shorts as much as I can. In the evening, I try to have my feet out of the end of the bed so the sheets don't touch them. The light touch of clothing, sheets, or even a loved one on an affected area can be excruciatingly painful.
Dental issues are a big problem. We cannot have root canals, and most of us suffer from severe dry mouth from the disease and the medications. Cavities are often a result. If the tooth gets bad enough it is too painful to have it worked on oftentimes and it has to be pulled instead. I have to be put under gas just a simple dental cleaning because of the pain involved in a dental cleaning; pain for me not for an average person. I have quite a few teeth that have been pulled over the years. I hope one day to have dental work done. Unfortunately, Medicare does not cover dental.
Food temperatures and spiciness:
Spicy foods can trigger a pain flare for me. Most people would find nearly all of my food to be bland.