Living a Life of Gratitude with CRPS

26th November 2017

On November 25, 2011, I was housesitting on my dad’s property in Oologah, Oklahoma, charged with his three beagle babies and other farm animals. I had my own two dogs with me, so there was plenty of toy throwing and potty breaks to keep me hopping. I was also working on my MA, so I was enjoying the quiet out on this isolated property, writing as many assignments as I could while everyone was away in Florida for the Thanksgiving break.

The shower in the house was leaking, so I was using the one off of the pool via the garage since it was so cold outside. As I was returning to the house after completing my bathing ritual that morning, I stepped into a shard of glass that was poking invisibly out of a garbage bag that was right in the midst of my path. Because I was walking at quite a pace, the glass pierced my left calf so deeply that the inside of my muscle was clearly visible, even through the spilling blood. I was absolutely horrified. Somehow, I dragged myself into the house, leaving a trail of blood with every limping step behind me. I finally reached the kitchen, fending off the five curious dogs all the way. I grabbed a tea towel from the drawer, searched for duct tape, and soon had my leg bound up, albeit crudely. My local children were all out shopping since it was Black Friday, and I could reach no one by phone who knew how to find the property. Finally, I rang my dad in Florida, and they sent out their housekeeper to collect me. All of this took well over an hour.

Unfortunately, this employee was instructed to take me to an urgent care facility instead of to the hospital. I was in so much distress that I was happy to be dropped off anywhere that had a doctor. I was not ambulatory by the time we reached the clinic, so I was brought into the building by wheelchair. Unbelievably, it was only a physician’s assistant who tended to me. She was so excited to show off her stitching skills to the trainee nurse in attendance that she neglected to examine me properly. Had she done so, she would have sent me to the hospital for surgery. I received 16 stitches, asked for a tetanus shot, and was sent on my way. No pain medication or antibiotics were offered to me. I was still not ambulatory, and I was in excruciating pain. A girlfriend met me at the facility and drove me home, cleaned up the blood, and dusted off some crutches she found in the garage for me so that I could still get about alone. I was in horrible pain all weekend, and my son had to come out on the Sunday to tend to the chores.

Silly me showed up for work on the following Monday. I could not don a shoe due to the pain and swelling, so I wore a light sock and used the crutches to get about the office. Within 2 days, the wound was so swollen, red, hot, and painful, I went to my doctor to have it assessed. I had a Doppler test to ensure there were no blood clots, was diagnosed with cellulitis, given antibiotics, and ordered home for bedrest.

The cellulitis took two rounds of antibiotic to heal. I attended the ER at the local hospital twice because of the unrelenting pain and swelling. I couldn’t sleep or focus on anything other than this burning, crushing, stabbing pain. I had an MRI on the calf that substantiated that there was considerable edema within it, and the muscle belly had been pierced. As instructed by my GP, I took these findings to an orthopaedic doctor who deemed that I should wear a boot for a few weeks to see if this would help. The infection and delay in treatment thwarted any possibility for surgery.

Well, I couldn’t tolerate the boot being on my leg for more than a few minutes at a time. I threw it into the closet and cried. In fact, it hurt to have anything at all touching my leg. Showers felt like falling razor blades, so I held my leg out of the water as much as I could. Rain, wind, any slight touch was brutal to endure. The skin became colder to the touch, even though I felt that it was in boiling oil. My calf became shiny and the skin looked like paper. My ankle was so swollen and distorted that it looked as though I had three ridges of reddish/purple tissue along my lower calf rather than one, rounded ankle bone. I could not walk without an aid, and my ankle had become fixed. I was so miserable. Even though it was winter, I could only tolerate the covers over my torso. I was basically in bed almost 24 hours a day. Friends brought me food and helped me with shopping and all the paperwork the insurance company and my office required.

I repeatedly attended all of my doctors’ appointments, only to be told they didn’t know what else could be wrong with me. My pain was glove-like and exquisite. Finally, the orthopaedic doctor suggested that I may have Complex Regional Pain Syndrome (CRPS) and referred me to a pain specialist. This was April. The pain specialist met me at the hospital in June of 2012 and first had the nurse place stickers that were temperature gauges on each of my feet. The difference in temperature between them was 4 degrees! He then observed my gait as I walked, took me to theatre, sedated me, and gave me a spinal injection. How wonderful it was to sleep for even a few minutes! About 20 minutes after I awoke, he checked to see if my gait, swelling, colour, and temperature had improved. Indeed, they had. These findings were enough to diagnose me with CRPS. The relief from this injection lasted four blessed days. I had several more of these over time, but only this first one offered me more than a few hours of respite

I trialled so many drugs to try and achieve some relief: anti-seizure tablets, Fentanyl patches, several other opiates, anti-inflammatories. I even had a pain pump for a fortnight. One of the drugs in the initially prescribed cocktail made me so sick, I had to go back in to modify the mix. I did enjoy some relief, but the drugs made me sweat terribly and I could literally smell the chemicals in my sweat. Within 15 minutes of the removal of the pain pump, I was back in tears. This is when the doctor suggested a spinal cord stimulator. I received my trial stimulator in October of 2012. It was quite a success! I actually wore a closed-toe shoe and went out to dinner one night during this 12 day period. After passing the required psychological evaluation, it was decided that I was an excellent candidate. I had the implant surgery in November of 2012.
Sadly, because of the scar tissue from so many spinal injections and the insertion of the trial stimulator, the lead would not go into the optimal area of my spine. Still, I could wear a small sandal to get about in, and my pain dropped from a 9/10 to a 6.

My right leg began to become painful within a couple of months after the stimulator was implanted. Sadly, they had only inserted one lead, so my pain escalated. I moved to Australia in November of 2013, and soon found an excellent pain specialist in Newcastle, NSW. He removed the Medtronic stimulator, and I trialled the Burst type with reasonable results. This stimulator was implanted in July of 2014 by a neurosurgeon because of my scar tissue issues. It took two operations to finally get the paddle lead into place, which was quite distressing. This particular stimulator does not tingle or buzz unless I chose to run it on that mode, so it is much more pleasant to live with. I have regular reprogramming sessions to ensure that I get optimal coverage.

Unfortunately, the formication and allodynia I suffer in my legs has spread to my torso and my back. The burning pain is now in my left breast. My left arm is even more painful than my left leg now, all because I lifted a pan from the stove that was too heavy. I have had several nerve blocks and a Zoledronic acid infusion to try and arrest this spread, to no avail. I had an incredibly painful allergic reaction to the Zoldronic acid, and the blocks only offered a couple of days of relief.

I have had two Ketamine infusions since 2015. One was necessary because I stubbed my toe and within half an hour my leg manifested CRPS symptoms that rivalled even my initial injury. The infusion was most helpful, and brought my pain down to a 2 over the 10 day period. My second infusion was required because of unbearable pain in my groin and my coccyx. I had nerve two blocks while on the Ketamine to ensure that there would be no spread due to the needle sticks. My pain in these areas has definitely diminished. Enjoying long, pain-free showers in the hospital is a marvellous bonus while having a Ketamine infusion!

I am probably due for another infusion, as last week I dropped a chair on my foot and have been in terrible pain all over my body since. I have recently moved to Caloundra, and my new pain specialist infuses Ketamine subcutaneously instead of by IV, so I am curious to see how this affects me. Until I can bear it no more, I am taking an opiate to try and break through this flare. My pain is currently a hot, crushing 8.

On good days, my pain is no higher than a 6. It’s never lower than a 5. I try to walk—even a little—every day. I have a companion dog, so taking him to the beach motivates me to leave my home, my safe-haven. I have PTSD, and it’s certainly been exacerbated by both my initial injury, and everything else that I have had to endure since then. The fear of the future, worrying about finances, medical costs and insurance, help with every-day tasks, even fending off aggressive folks in parking lots who don’t think I deserve a disabled park, just because they can see no cast or bandage. Every outing must be meticulously planned. I have to consider if I will be able to stay cool enough in summer and warm enough in winter, as the pain increases with weather and barometer changes, and I cannot easily regulate my body temperature. If I get too warm, I will begin vomiting. I must have a gallon of drinking water available if I’m out for the day, and help to get my mobility scooter onto its rack if I am going to need it. I must now wear leak-proof undergarments or pads due to my affected bladder. I can only wear natural fibres, and I cannot bear the pressure of long pants or sleeves.

Although this tale may read woefully, I choose to live a life of gratitude. I have wonderful friends who understand me and support me, fabulous family members, and a solid medical team. I retain my sense of humour, albeit it a somewhat darker one. I miss my work, writing daily, my outgoing, Tiggeresque, energetic self, but I also welcome this measured, more empathetic, responsive woman. I long to offer hope to others who struggle with this disease, depression, anxiety, PTSD, and other chronic illnesses. I also desire to raise awareness, address, and educate folks who are unaware of the repercussions of living with an invisible, chronic illness. I hope this little piece will serve to accomplish at least some of these goals.

Did you enjoy reading this story?  Do you have CRPS or care for someone else who does? Email your story and a photo with your name, age and where you live to:

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