Contributed by: Kathryn
Reviewed by: Evelyn Corsini, MSW, July 2010
Kathryn is a 48-year-old woman from Minnesota. She describes her approach to two chronic pain conditions, reflex sympathetic dystrophy/ complex regional pain syndrome, [RSD/CRPS], a neuropathic pain condition, and post-chemotherapy neuropathy, by knowing that her pain does not mean that her body is continuing to be injured.
I’ve always been quite active, a non-smoker, never overweight, and mostly vegetarian – focusing on whole foods and organic gardening, canning and freezing. I never expected to have the health issues I’ve had in recent years.
In August 2007 I had an injury which also got infected. It triggered RSD/CRPS in my right foot. I was diagnosed quickly compared to most, in October. But then I was left to wait for an opening at the Pain Clinic. During that time I did a lot of research and realized I needed to be an advocate for myself.
In December I made an appointment with a different doctor who got me started on PT and lined up spinal nerve blocks. I also did modified mirror box therapy. For the first several months I’d been focusing on my bad foot – on how awful it looked and felt – swollen huge, purple, freezing cold, yet dripping sweat. Instead I started keeping that foot covered and focusing on the good one, to convince my brain they were both fine. I did heavy PT and lots of walking after each spinal nerve block. I knew that there was nothing wrong with my foot and I couldn’t hurt it by using it. I just needed to convince my brain and nervous system there was nothing wrong.
I did try several different nerve drugs, but I hated the way they affected me, so I refused them. I was offered pain medication which I don’t like, so I refused. Slowly I got better. The pain levels began to recede and my activity level rose. It was important to push myself as much as I could, without pushing so far as to send my pain too high to render me immobile. By the next winter I was mostly in remission with only a few flares from triggers like cold and heavy vibrations. By summer 2009 I considered myself fully in remission.
September 2009 I was diagnosed with colon cancer. I had a colon resection to remove a large tumor. I normally handle pain well, and had no trouble with surgery at all. Recovery went well. Then I had 10 months of everything going wrong during chemo treatments. I had a PowerPort inserted which became infected within one day. I was hospitalized and they removed it. I had to wait to heal to get another inserted.
I didn’t do well on chemo, with blood counts dropping very low and requiring shots. I got a pulmonary embolism and was hospitalized again. During chemo I had allergic reactions and a rare syndrome caused by one of my chemotherapy drugs. I had to be hospitalized for a desensitization protocol. This drug was very hard on me. I am usually pretty tough, but chemo really got me. It does normally cause peripheral neuropathy to some degree, and I got it pretty severe. During treatments I had extreme sensitivity to cold – even a light breeze on my neck or chest was a problem. And it made the neuropathy in my hands and feet worse too.
After finishing the drug, the neuropathy continued to progress for over 2 months before stabilizing. Scans showed me to be cancer free! Dealing with neuropathy isn’t so bad when you know you are alive and have won the battle! I had my Power Port removed, and once again I got an infection – back to the hospital. I did find it hard to deal with the neuropathic pain while dealing with the fatigue, nausea and other problems caused by chemo. It was overwhelming. But now that I am done with chemo, and getting stronger, I’m working at getting it to go away. I treat it somewhat the same as the RSD/CRPS, knowing there is really nothing wrong with my hands or my feet. I can’t really hurt them by using them.