When you hear hoof beats, you look for horses, not zebras.
So, it was time to give pain management a real try. I wasn't sure what to expect honestly. I had already gone to a pain management dr before, but just for medication discussions, not diagnostic. See, before, when I had gone they looked at my scars and my chart and knew what the issue was right away. Now, I was going in as a big question mark. It was no longer just my elbow and hand that were hurting. It was my whole right hand, arm, elbow, shoulder, neck, and now mid-scap/back. I had never experienced pain like this before. It felt like burning, stabbing, nerve pain shooting up and down my right side. My arm was even more disabled than before. Not to mention the terrible throbbing that followed muscle tightness..the inevitable inflammation. But see, that's the thing. My surgeon no longer knew what was causing my muscles to grow tight, weak, and inflamed. So, I had lots of questions for Dr. Cesar.
Dr. Cesar had a thick Eastern European accent. It made it hard to completely understand him when I had spoken to him on the phone about medications in the past. This made me nervous... I wanted to feel confident and heard. Just like every doctor's appointment, it started with me filling out pages and pages of new patient intake forms. Something that I was growing to hate more and more. But, this set of forms had something new. It's something that I like to call an ouch report.
Finally, a place for me to try to explain the specific pain sensations. I was amazed at the level of detail I could put into this one little chart. And to think I was going to also get physically examined.
So as you can imagine, my chart was filled with all kinds of ticks, dots, xs, and circles. To my surprise, the doctor wanted to hear even MORE detail about each of those markings. I went on to explain how sensitive to temperature changes I was, how weak/shaky was getting despite constant therapy, and last but not least, the burning/stabbing nerve pain that radiated down my neck and arm. He asked a series of questions that I had never considered before:
1. "Have you noticed color change on the areas of pain?" "Like purple coloring or transparency of veins?"
yes, on my right hand & forearm.
2. "Have you noticed any hair growth change?"
ummmm, my hair falls out very easily, more hair on hand/ arm due to casting.
3. "Are you sweating more than usual?"
no, in fact, I always feel cold.
4. "How about certain textures or touch? How do these affect your pain?"
slight touch on my arm send a sharp pain... so kinda that? I also can't wear any sweaters or shirts that are scratchy, it makes my nerve pain worse.
The next thing he said was "hmmm, have you heard of CRPS, aka complex regional pain syndrome?" I shook my head no. He went on to explain, " Complex regional pain syndrome (CRPS) usually affects the limbs, after injury or surgery. The main symptoms are severe pain, swelling, loss of range of motion, temperature changes, and changes in the skin." I looked at Cal (yes he came with me hehe ) in shock. Dr. Cesar continued, "You seem to hit a lot of those symptoms.. I would like to put you on some different kinds of medication and physical therapy. I would also like you to get a cervical MRI to check for something called TOS, or thoracic outlet syndrome." My jaw was still on the floor as he continued to talk. "Basically, it's when you have an extra cervical rib or a funky first rib putting pressure on nerves or blood flow down to your arm. It can also cause "crowding" discomfort and pain in your neck. It is rare though and CRPS is more likely."
As we drove back to campus I sat there still shocked. The only thing I could think to do was cry. Not out of sadness, but more so frustration. I wanted an answer now. I wanted the fix to my pain.... I needed it.
So recap: plan for diagnosis!
Step One: get cervical spine MRI imaging done
Step Two: physical therapy, myofascial release/ massages, "strengthening" (yoga ball and a 2lb weight to keep my back and other shoulder strong since I relied on it)
Step Three: More Meds (gabapentin 1200 mg & baclofen 80 mg per day & tramadol 50mg as needed)
Step Four: Find patience
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