My journey started with right eye pain in October 2015. Being in the process of planning a wedding and going through my last semester at UW-Madison in a competitive science program I ignored the pain. Once my vision was affected I decided to see a doctor (read: my grandma whom is an optometrist assistant dragged me to the doctor). Structurally my eye was sound, but I still couldn’t see clearly and had pain. Two days before the wedding to my prince in January 2016 I was told I may have early signs of multiple sclerosis (MS) and should see a neuro-ophthalmologist.
Fast forward a few more weeks and an emergency room visit from the intense pain. Pain that was constant behind my eye and increased when I looked any direction to the right. I found myself at two different doctors offices in the same day confirming the previous diagnosis of my right eye structurally alright. This did nothing to explain the pain I was experiencing.
Next up was a neurologist. He came with MRIs, blood tests literally EVERY WEEK, CT scans, and 20mg of Prednisone daily. No flares were seen in my MRI that would indicate MS. Immense relief washed over me and my husband. Then frustration and hopelessness started to settle in. If it wasn’t MS or any of the other chronic, scary neurological diseases what was wrong with me? Why couldn’t I see clearly out of my right eye and why was I having this intense, sharp pain? Gabapentin was prescribed. 600mg helped ease some of the pain from a 10/10, but it affected my thinking. I couldn’t take the medication at work where I needed to be able to think clearly, but where I also needed pain to not be distracting me.
More neurologist visits. It was April and no answers. Gabapentin was shortly increased to 900mg then swapped with Lyrica. By this point the pain that was isolated to behind my right eye had spread to my forehead above my eye and below to my cheekbone. Putting on makeup, washing my face, and touch was excruciating. I was getting worse. Hemicranial continua and trochlear headache were thrown out as a possible diagnosis and indomethacin was prescribed. Just typing indomethacin gives me chills. I have NEVER been that sick to my stomach as I was on indomethacin. Another med. change, cutting that out and both diagnosis thrown out. Back to no answer.
I was referred to a pain specialist for a nerve block to ease the pain while the doctors continued to put together the puzzle. Over the course of a month I received two trigemial nerve blocks required by insurance for an ablation. That relieved the pain, but not vision loss for the day. The ablation occurred on my husband’s birthday. The pain from the “surgery” was beyond anything I’ve experienced, but in the long run it eliminated the pain above my right eye and restored my vision. Some progress was being made. For that I was grateful.
An infection of my surgery site, spinal tap, spread of the nerve pain, re-trial of the nasty indomethacin, referral to rheumatology, possible diagnosis of infraorbital neuralgia and peripheral neuralgia, an emergency room visit, high inflammation IgM markers and I was no closer to getting answers. The wait for rheumatology at UW-Health was TWO MONTHS! I could no longer walk without assistance of a crutch or cane due to the horrible pain that shot from my left foot up the outside of my leg into my lumbar region of my spine when I walked. I could not breathe without a sharp, stabbing pain in my same lumbar region. I no longer had function of my right hand due to the sharp pain in my pinky, thumb, and pinky side of my forearm up to my elbow. All the above affected areas were swollen, overly sensitive to touch and texture, and turned purple with slight temperature change. How can you expect someone to wait two whole months when they pain are living in excruciating pain and not functioning?!?
Frustration doesn’t even begin to describe how I felt.
Thankfully the original optometrist that I had seen back in January had gotten me an appointment with a different rheumatologist. September. More blood work and a diagnosis the doc was 80% sure of. Sjogren’s syndrome.
Treatable. Not curable. I could live with any diagnosis that came with some relief from the pain. A lip biopsy ruled out the 80% positive diagnosis, crushing the hope I was beginning to feel.
Complex Regional Pain Syndrome, previously know as RSD, came up at my next visit with the rheumatologist. A diagnosis of exclusion that didn’t leave me feeling confident, but the more I researched the disease the more I realized my pain fit the symptoms.
- Chronic pain intensifying with touch, sound, vibration, wind, or temperature change: CHECK.
- Inflammation: CHECK.
- Temperature discrepancy in the affected limb: CHECK.
- Change in skin color: CHECK.
- Joint stiffness and swelling: CHECK.
- Muscle weakness and atrophy: CHECK.
- Decreased ability to move affected body part: CHECK
The symptom lists read like I had written them myself.
FINALLY, it was time for my original rheumatology appointment. My diagnosis was confirmed. And confirmed again by the pain clinic doctor, the neurologist, and even my primary care physician. After months of pain and no answers I had an answer of an incurable disease that is trial-and-error to manage.
Chronic regional pain syndrome. CRPS.