For the last three years or so I have been taking a pain medicine that is specifically geared toward nerve pain. It is a distinction that has been important for me because I have a rare nerve disease called small fiber neuropathy (SFN) as a result of my Sjogren’s.
This disease can occur in about 20 percent of people living with Sjogren’s, lupus, and rheumatoid arthritis (RA). I also have RA, which was my first autoimmune disease. Sjogren’s was my most recent diagnosis. My Sjogren’s went undiagnosed for years because my rheumatologists and health care providers did not see the point in worrying about another potential autoimmune disease. They either thought it was just more symptoms of my RA or believed it would be treated the same way regardless.
The pain medicine I was taking helped me to have some semblance of a life. It helped me to function and live, even during severe nerve flares. Sometimes during a flare the pain was so intense that I could not tolerate clothes on my body; the fabric touching my skin made me cry. The burning was so intense that all I could do was rip my clothes off and get into a lukewarm bath, hoping that my arthritic knees would support me when it came time to stand up and get out of the bath.
Sometimes, changes in our bodies are so gradual that we don’t realize how they creep up on us. When my insurance suddenly denied my pain medicine, my body was forced to detox after multiple attempts to pass the prior authorization requirements. My body came to a grinding halt. Each day became harder and harder to function. Nerve pain that was previously controlled began to emerge — burning, stabbing, aching, and muscle pain worsened daily.
The fatigue from my body just trying to keep up with the pain alone began to take over my brain. I had to start taking naps every day, but I couldn’t finish them. The pain wouldn’t let me. The pain meds I had on hand were no match for the growing tide of pain that was taking over my consciousness.
This pain became its own entity, a living, breathing being that began to suffocate the life out of me. Walking to and from the bathroom elicited pain so bad I bent over and cried, holding my problem leg — the left one, plagued with sciatic issues. The problem isn’t just that my nerves are demyelinating due to this nerve disease. Demyelinating is such a cold, empty, and detached way of saying that the protective outer layer of my nerves is being worn, or rather, eaten away by the inflammation in my body, leaving my nerves raw and exposed. My other problem is that my spine is degenerating. For more than 12 years, it has been crumbling faster than anyone can explain. The space between my vertebrae is narrowing, compressing my nerves.
They Just Said No
This wretched beast — pain — would make my muscles spasm from my hip all the way down to the tips of my toes, pulling them taut like a rope. As this ravenous monster worsened, my doctor’s office and I were battling my insurance to get my prescription back, but they finally said no. To appeal, I would have to try and fail three medications on a list they provided us. There are no other options.
At home, I could barely eek out one small load of laundry, do a few dishes at the kitchen sink, or put trash out at my front door to be picked up. I couldn’t walk my dog with the thirsty pain beast leaching the soul out of me. I had to pay my dog walker almost nonstop.
The pain was so unbearable that I could barely walk. Somewhere along the lines, I stopped sleeping through the night. I don’t remember when or where that was. It started with waking up more than usual and progressed to only sleeping a few hours, then waking up and not being able to go back to sleep. My only saving grace was my intravenous immunoglobulin (IVIG) treatments.
I fought with my insurance to try to get my medicine back for well over a month, but my body began its descent into the depths of pain and sleeplessness right away. It would have been much worse if I had not had IVIG to force me to sleep every other weekend for my treatments. The biggest side effect of IVIG for me is that it makes me very sleepy. But eventually, that was not enough.
My doctor had been trying to appeal my original nerve pain medication, but we had to pick something else for me to try. To be honest, I didn’t realize how bad my pain really was until I went through this experience. I just considered it my nerve medicine. But when insurance offered alternatives like a fentanyl patch, liquid morphine, oxycodone and oxycontin in various forms, my head snapped back in surprise. I was in shock and didn’t know what to choose.
My pain management doctor and I reviewed the options and decided on what would work best for me while we appealed. My brain began spinning. Then my insurance made me wait even longer for the prior authorization for the medication we had just chosen from their list. My quality of life went further downhill. My pain and fatigue worsened. My brain fog became so severe I couldn’t tell you where it ended and I began. After my next IVIG treatment, I only slept about three hours that night, and I knew I was in trouble. The following week, I slept a couple hours during the day or every couple of days, waking up again from sheer pain.
Back on Track
Finally, I got my new pain medicine, and a whole new world began. It took days of sleeping so much that I was afraid at first that I was not reacting well to the medicine. But I gave it time because I knew I had not slept in about a week, and my body was tiiiiiiiirrrrreeeeddd.
It was tired from fighting so hard just to barely function. Just to breathe. To think straight. To fight insurance. To make the right decisions. To cook for myself and to figure out how to put one foot in front of the other.
I’ve discovered some important things about myself through this process. The pain was creeping up slowly, but I had felt it worsening. Growing up in the Midwest, the attitude was to just suck it up. We don’t complain; we just deal with pain, struggle, or whatever comes our way. Plus, with addiction in my family, I was really afraid to truly treat the pain in my body the way I should have been treating it. So, I left myself in this difficult place where some of my pain was managed but not enough to really function or manage my life well.
My life is by no means perfect or amazing, but compared to what it was, my quality of life is definitely better. I can now do so much more than just stare at the TV in pain and exhaustion. Of course, I have to do everything in moderation and be careful because this new pain medicine does not handle my nerve pain in the same way my other medicine did. But my brain is focusing better at work. I am getting tasks done a little at a time now, instead of barely floating with my mouth above water, hoping I don’t drown.
I am finally coming up for air with energy and strength, and I have the ability to move forward with my life in a way I did not have before. I am starting to breathe again.
Be a More Proactive Patient with ArthritisPower
Join CreakyJoints’ patient-centered research registry to track your symptoms, disease activity, and medications — and share with your doctor. Sign up.
