Many times during my diagnostic period I felt like a human pin cushion, having blood vial after blood vial drawn. I felt like the process was never going to end. I want to encourage anyone going through this to not give up hope. There is a light at the end of the tunnel and the beast that is your pain will be tamed.
With orphan diseases, conditions that affects fewer than 200,000 people nationwide, it takes a committed team of doctors, a patient that will advocate for themselves, and a whole lot of patience to ride the process through.
Tests that were used to eliminate other diseases and ultimately diagnose my disease of crps.
- Cyclic citrulline peptide
- Rheumatoid factor
- Ana titer and pattern
- Angiotensin converting enzyme
- 25 hydroxyvitamin D2 and D3
- Comprehensive metabolic panel [at EVERY visit]
- CK/CPK assay
- Lyme ab
- Vitamin B12
- TSR reflex free t4
- Auto hemogram/plate/diff
- Lupus anticoagulant work-up
- Clot time, silica
- C reactive protein
- White cell count
- Absolute neutrophil count
- prothrombin time/INR
- Mono test
- CBC with differential
- DNA Ab, double stranded
- Cardiolipin Ab
- MRI and MRA with and without contrast
- Spinal Tap
- Glucose from cerebral spinal fluid (CSF)
- Oligoclonal bands from CSF and blood
- Cell Count from CSF
- VDRL from CS
While these are the many tests that ultimately led to my diagnosis of complex regional pain syndrome, crps, these exact tests won’t necessarily diagnose another crps warrior.
My diagnosis has given me access to proper treatment (with much advocacy). This has given me a new chronic life where I’m able to function.
I’m no longer house or bed bound in unbearable pain. I have less frequent pain flare-ups where nonfunctional. Most days I’m able to walk without my cane. I’m back to working full time at a job I’m passionate about. I attend events and museums in my wheelchair to prevent flares. I dance at weddings, go out with friends, plant in my garden, and go to gentle yoga. My disease is not cured unfortunately. I’m NOT pain free. Every moment of every day I’m experiencing crushing, burning pain in my CRPS areas.
I’m still learning my limits, but I’ve learned to live with my disease and enjoy what I CAN do.
*I am not a medical doctor, this is not a diagnostic tool. Please consult your doctor or hospital.