What is the controversy with CRPS?

Why is CRPS Controversial?

• Very few people understand daily chronic pain, not to mention CRPS/RSD. 
• Few doctors truly understand CRPS/RSD. Before patients are first diagnosed, they must navigate an endless maze of specialists, often painful tests, and misdiagnoses. If you are lucky enough to have been diagnosed relatively quickly, your options are few and limited. A lot of medical professionals have never heard of RSD/CRPS. Even if they have heard about it, they still misunderstand it (e.g., thinking that RSD/CRPS can’t spread).
• Most doctors and other medical professionals are very skeptical of daily chronic pain. This is not really their fault, as so many people abuse the system to get high. It is hard when you are in real pain, however, and stigmatized on top of it. Think of it as earning your black belt in CRPS/RSD. You most probably will be suspected of being a lying, drug-seeking junkie at least once.
• Most doctors “treat” CRPS/RSD by throwing drugs at it. These drugs or medications (at best) will (somewhat) cover up your symptoms. In the case of CRPS/RSD, it’s usually far from the perfect solution, although it may provide some relief. I have yet to meet any patient who told me that he or she, or someone he or she knew, was “cured” by any drug. Furthermore, every drug has side effects. That being said, I understand that drugs may feel like your only saving grace right now and that for some of you they are lifesavers. They may make the difference between you getting out of bed in the morning and (kind of) living a halfway normal life, or not.
• Most recognized CRPS/RSD treatments available on the market today involve the numbing, scrambling, or interruption of pain signals.
• Doctors as well as CRPS/RSD patients themselves often do not fully understand all the symptoms that may be associated with their condition. Digestive issues anyone? Are you a walking weather detector? Do you cringe when a baby cries at the grocery store? Internal thermometer all screwy? Trouble swallowing? Digestive issues? Does the pain from something as simple as taking a shower (instead of being warm and relaxing) put you over the edge each time? Do you dread just washing your hair? Yes. Chances are this laundry list of symptoms from hell is most often all connected.

The typical CRPS patient has been to many, many different doctors. They have navigated a maze of hospitals, clinics, and specialists that most people cannot even begin to imagine the sheer volume of. They have been prodded, poked, stabbed (ill-advised for CRPS patients), and misdiagnosed many times. Chances are, they have been at least suspected (if not outright accused) of being pill-seeking junkies or malingering (a fancy medical word that basically means you are lying your butt off about your pain and symptoms.) 

The average CRPS patient will go misdiagnosed or undiagnosed for years before they are lucky enough to find out what is wrong with them. Many figure it out on their own with the help of the Internet, and have to then set out to prove it to their doctors. 

Many doctors have never heard of CRPS and don’t understand it. Even if patients are lucky enough to obtain an early diagnosis, finding successful treatment is as difficult as hunting a mythical unicorn down. Patients may spend thousands simply in copays and traveling cost only to be financially destroyed by the time they do find a promising treatment, usually not covered by insurance. It is frustrating, it is hard, it is a rotten luck of the draw. However, one can sit down, or one can get back up. These are your choices. Keep fighting, be your own best advocate.