A New Pain, Doc That Is!

I started this year off setting new goals and changing things I was unhappy with, etc. My first accomplishment and goal met for the year was weaning off all of my narcotic pain killers. It was not an easy task, the nausea was terrible, but I am definitely glad to no longer have them in my system. I feel more alert, aware, clear and have more energy. I did not realize how much they were effecting my energy, my body, and even my spirit. My dad tells me that "I have the twinkle back in my eyes." Overall, I feel better and am looking into other avenues to handle pain.

Being off the pain meds have not changed my level of pain which means it is my nerves as the source of pain. I saw a new pain doc (Dr. David Ratzman)that specializes in pain medicine, management and anesthesiology. He is also my besties pain doc and is familiar with EDS and highly knowledgeable with CRPS. I had so much paperwork to fill out prior, but the appointment was thorough and everyone was so nice. You could tell he cares about the patients and puts effort into finding what is best for them. We talked about my medical history and he want to look further into CRPS, because the presentation is not as typical. I told him that my surgeon (Millis) says "nothing about me is usual." It is true. Nothing is simple, easy or normal :) I have a lot of the symptoms and presentation of CRPS, but do not get as severe of the color changes, it is still falls within clinical diagnostic standards of symptoms being out of proportion to others. Some people may have severe pain with little to no vasomotor response and in others, there may be little pain with intense vasomotor response.

Symptoms of CRPS include:
-severe, constant burning pain
-edema
-increased/decreased hair or nail growth
-vasomotor instability-vasomotor changes range from cool-pallid, mottled changes from vasoconstriction to warm erythematous changes of vasodilation
-diminished motor function
-muscles spasms
-bone changes



I experience a majority of these symptoms and they started with electrical pain and numbness in my right foot and have developed over the last couple years to include a severe burning pain in my thigh, etc. I have tried everything from high doses of Neurontin, desensitization therapy, sympathetic nerve blocks and regional nerve blocks. I am currently taking Lyrica 200mg BID and Cymbalta 120mg daily to help with the nerve pain and flares. I maxed out Neurontin and it was causing too much stomach sensitivity so switching to Lyrica has been very beneficial. Ratzman believed that I have failed numerous conventional therapies, so we talked about what our game plan would be. We talked about doing a prophylactic sympathetic block prior to surgery in March to help with the nerve issues. He also brought up having a ketamine infusion done throughout the surgery and hospital stay because of the methods I have failed and it can offer longer relief than the sympathetic blocks and even "reboot" the nerves in a sense. He was going to request records from Children's as well as speak with Millis and their anesthesiology department to be able to arrange the treatment. It would be the best option right now. He also wanted me to think about a spinal cord stimulator which is surgically implanted and sends pulses or vibrations to the nerves to block the pain signals from the spinal cord. It would have to wait till after my surgeries are over because it effects imaging. But, because I have failed so many of the treatments and the symptoms keep getting worse it is something I am suppose to think about. Having something in my SPINE freaks me out at the moment, but he just wanted me to know that I still have options left.



I also have started intense physical therapy called Sports Performance by Methodist Sports Medicine. It is personal training with a physical therapist and I have been so sore since, but in a good way. Noah is going to kick my butt every week and help with exercises that I need to do to get stronger. AND, I am doing it with my bestie, Jessica Anderson!

My next goals for the year to accomplish are finding a new job since the lay-off, finish my 2 Incompletes from the Fall semester, continue to get fit and stronger and organize/schedule my March hip surgeries. Although the year has not started off as well as I would have liked, I am improving physically and continuing to push towards my goals and dreams with more drive and energy then I have had in years!!!