I complain about my complex regional pain syndrome fairly often, because unfortunately, parts of my life have been decimated by it. I forget to mention I’m one of the lucky ones. No, alternative treatments haven’t worked for me. But opiates do. And I live in a country where at the moment it is still legal to prescribe them. Furthermore, I’ve been able to continue my career.
I had some doubts about this one. My first doctor told me to give up on it. I was done as a writer. That coupled with his nurse practitioner’s attitude, is why I went looking for a new doctor. I write books, I don’t lift heavy objects or have to stand all day. Nor am I required to do complicated math all day where a mistake can mean life or death. Why should I have to quit writing?
Now, admittedly, the 18 months I spent on Gabapentin and Lyrica did more damage to my self esteem and career than their supposed benefits, but that’s over now and with opiates, I can work. That makes me lucky.
Also, I don’t have hot nerve pain, but cold. I’ve read about people with CRPS buying and installing commercial fridges in their house, that they turn into their bedroom, because their hot nerve pain is makes them so hot, it’s the only way they can sleep. I don’t require a wheelchair despite it being in my hips. I only occasionally have to use a cane, another plus considering they freak Lola out. I’m not using a walker.
My skin is mottled red and white, but it isn’t purple and it doesn’t change colors based on randomness (CRPS can cause skin to be blue, purple, red or mottled like mine in my hip is). My thigh is swollen (both of them actually), but I don’t have problems with lesions there. Another lovely side effect that can happen with CRPS. Because the nerves are hyperactive, they can cause necrosis of the tissue, resulting in nasty black skin patches and lesions that don’t heal well.
And the opiates have helped my GI tract. CRPS attacked my GI tract about 13 years ago now. I had trouble with blood in my stool and frequent, urgent bowel movements like Crohn’s or IBS (and I was checked for both). While a scope didn’t find any lesions in my intestines, my doctor thinks they probably did exist, coming and going based on the nerve hyperactivity that makes up the digestive system. And all that hyperactivity, tanked my immune system. The unseen and unfelt side effect of the opiates is that the nerves that make up my digestive system, have calmed. Only rarely do I have those symptoms anymore and I attributed it to Lyrica, but my doctor told me that it was the opiates not the Lyrica that eased them.
I can and do have brutal pain flares from time to time, but everyone with CRPS has those. I was also lucky with something else, that was unexpectedly a bonus. I have always had low blood pressure. I get a headache when it jumps above 100/85, because that is high for me. Because I had such abnormally low blood pressure, the daily pain levels have increased it, but while it’s high for me, it usually stays within the normal range for the average person.
Now, some things have changed. I have frequently talked about how opiates can and do improve quality of life for chronic pain patients. And I get incredibly annoyed that illegal and illicit opiate use makes our lives harder. I’m also terrified that eventually, they will ban opiate prescriptions in the US and I will lose all quality of life. Which is why I frequently write posts reminding the general public that if someone wants to use drugs to get high, they will regardless of whether they have a prescription for the drug or not.
I also have to remind myself that living with it for 23 years before being diagnosed prepared me for some aspects of it. Like it has a high suicide rate (95-98% of patients commit suicide within 10 years, because the pain is so unmanageable and brutal). I’ve already beat those odds and I beat them while not being treated. I can hold out for at least another 23 while being treated. Even if it is worse in my hips than it ever was in my hands and forearms. Also, Lyrica and Gabapentin made me face my own mortality, mostly in the form of suicide, but eventually my disease will kill me. As such, I have the last Aislinn Cain novel written. I keep my will updated, because I and my descendents have a 75 year exclusive copyright, meaning even after I die, if my books make money, it will go to my family. I am emotionally more prepared for my own death than I am for that of our dogs.
I’ve also learned what services my health insurance will assist with. For example, United before we switched in November would help me pay for a housekeeper. Our plan with Blue Cross won’t, but I’ve been looking into the service anyway. I find it hard to vacuum, sweep, load the bottom rack of the dishwasher, and get down to clean floors and toilets. My mom currently does the majority of our housekeeping, but I feel bad about this, so I will be squeezing housekeeping services into our household budget this summer, even if it’s just for twice a week.
And while I’ve lost the ability to drive a car, my mom is still healthy and capable, so she helps me when I need to run errands.
And in these ways I am very lucky. It could be so much worse. And I could have no one to help me with everyday life. And I could have been forced to quit work.