I was finally diagnosed with CRPS Type 2 (permanent nerve damage of the lumbosacral plexus) by my neurologist at 6:30 pm in his office after a six-hour appointment, multiple tests, MRIs, and consultation. He's a Christian and thoughtful, kind man who refused to give up. He was the eighth provider I had seen in a year and a half. I had been told that the excruciating pain, abnormal gait, numbness, burning, well, this list goes on, was "in my head," "would subside with rest and time," "was part of the knee replacement rehabilitation," and of course, "me over-reacting or just being a wimp." I love the last one, don't you?
Within three months of his diagnosis, I was diagnosed with progressive Complex Regional Pain Syndrome, Type 2, high-risk recurrent C difficile infection colitis.
Since May 2017, I have gone from a productive 22-year career pharmacist who provided for her disabled husband to a woman who can't drive, care for her home, or leave her home. I can't walk, stand, sit, or lie down for any length of time. I rarely sleep. Today, I was told by another "pain management specialist" that the answer is to wean off of all "opiates" and I would miraculously be free of pain. All I needed was to change out my Spinal Cord Stimulator leads and I would be able to go back to work! Woohoo! Everything would be hunky-dory. (Sorry, that's sarcasm. I didn't have the temperament at the time to correct him that I take opioids, not opiates.) He actually sounded like the poster child for the DEA agents I spoke to about ten years ago when they thought they had the answer to the Nation's Opioid Addiction Problem. I simply popped their bubble and told them that they were missing the Gabapentin that everyone was using as an additive and stimulant with their opioids at the time and nobody bothered to notice. They dismissed me. Too bad I was right.
The issue is that NOT taking opioids won't make my pain go away. Changing my leads won't make my pain go away. And working as a pharmacist OR anything else will NOT make my pain go away. The issue is that I have CRPS Type 2 and my pain will never go away. When asked, he didn't know the difference between Type 1 and Type 2. He didn't know what the cutting edge treatments were for CRPS. What LDN was... He said he gave Ketamine IV in his OFFICE!

BE CAREFUL WHO YOU TRUST WITH YOUR BODY, BRAIN, AND EMOTIONS. YOU ONLY HAVE THIS ONE LIFE ON EARTH. God gave us a brain to use it. Do so. Get prepared. Listen, learn, and be armed with knowledge and faith before YOU decide what to do with your body. God will be with you the entire way. He will not leave or forsake you. He will walk through fire if need be.

PLEASE, PLEASE, KNOW YOUR BODY. KNOW YOUR DISEASE. KNOW YOUR TREATMENTS. KNOW WHAT IS ACCEPTABLE, WHAT IS NOT. Don't be fooled by fancy words or a white coat.

AGAIN, your life may depend on it. So far I have kept multiple errors from occurring in my own case merely by doing this.

YES, the best approach is the TEAM approach. Unfortunately, many physicians and specialists are too prideful or busy to consult with other doctors about their patients, relying on medical records, incomplete at that, to give them the "required" information that they base their pre-visit, and sometimes, conclusions about the visit on. They are too busy or too booked up to spend adequate time with their patients to confirm, clarify, or simply take a complete history and examination either. Therefore, they go with their "gut," a conference or statistical approach, or simply what a previous specialist's opinion. Why spend the time on a complicated case when they don't have the time for the easy ones?

That is the truth about the majority of our healthcare system today, especially in rural America like Wyoming.

YOU MUST BE THE CAPTAIN OF YOUR HEALTHCARE TEAM. YOU must make sure that all your providers are on the same page when it comes to your care. YOU must make sure that everyone has the most up to date information, test results, imaging, and medication lists. YOU must carry the information everywhere so no one needs to guess how to treat you if they need to. YES, it's sad. YES, it's bad. But your LIFE DEPENDS ON IT.

If you have a chronic health disease and are treated by more than one specialist or doctor, YOU are the one responsible for your healthcare. NOBODY will do it for you. Please don't let yourself down. I care too much about you to NOT tell you the truth.