Chronically Ill and In Pain: My Story

I'm a chronically ill person. I have fibromyalgia and myalgic encephalomelitis/chronic fatigue syndrome (ME/CFS). I'm in pain all the time. Yes, all the time. My body also metabolizes medication differently from most people. Gabapentin, a drug to help with nerve pain, made me suicidal. It was one of the most terrifying times in my life. Thus, any type of drug in that category runs the risk of making me feel the same. I've reluctantly tried them, and they did nothing for me.

Living in pain every day of your life creates a stress all on its own. I have several tools in my toolbox to deal with it. Watching movies. Working on puzzles. Reading a book. Taking a walk (when I can). Using a heating pad. Losing myself in my writing.

But those things can only get me so far. I need pain relief - specifically, opioids.

Unfortunately, due to the opioid crisis in this country, getting opioids is an exercise in frustration. Doctors are terrified they will be targeted by the government for prescribing too many, and will often cut off patients without proper tapering. When faced with this sudden withdrawal (which is incredibly dangerous to one's health), chronic pain patients who were taking these drugs responsibly and safely have sometimes committed suicide because they could no longer handle living in pain. 

This is not only unacceptable and unethical, it is evil. I do not use that term lightly.

Therefore, I'm sharing my recent experience with you to illustrate how this war against chronically ill patients has personally affected me.

My Story

A little over a month ago, I participated in a one-day symposium as I was presenting a paper. The day was very long and hard, and I knew I was going to crash. Post-Exertional Malaise (PEM) is one of the hallmark symptoms of ME/CFS. Here's a brief explanation: 

Oh boy. Crash I did. But as the week progressed, I realized something else was going on. I tested positive for Covid for the first time since the pandemic started, and it just exacerbated all my symptoms. I felt horrible.

Unfortunately, the pain hasn't really abated since then. My primary care doctor refused to prescribe me any pain meds, and recommended I go to a pain specialist. I made an appointment, and tried to get through the next few days as best as I could.

My appointment went well, and my pain specialist decided to put me on an opioid called Nucynta. Because it is fairly new - only been on the market a few years - there is no generic form. I'd been on this drug before when I was in severe pelvic pain a few years earlier and it helped with the rest of my pain. The relief I felt at being listened to, at being heard, was immense. I was going to get help.

Then came the text from my pharmacy. My insurance had denied coverage of Nucynta. This happened last time, and I thought it would be resolved by the next day. So I waited. But nothing happened. Then I called my pain doctor who said they'd sent in an appeal to my insurance. I called my insurance and was on the phone with them for an hour. No resolution.

For three days, I endured mounting pain and frustration as I was stonewalled at every turn. Another phone call with the insurance. No resolution. On Friday morning, terrified I'd have to go through the weekend with no relief, I called my pain specialist. 

"Can you please give me something just for the weekend?"

Their response floored me.

"No. You just need to keep taking the Tramadol." (Tramadol is an opioid that does *not work* for me and actually makes me nauseous).

"But it doesn't work for me. Isn't there anything else you can do?"

"No, sorry."

I felt abandoned. I cried my eyes out. And because I was only going on four hours of sleep, I took a nap, sleeping all afternoon in an attempt to escape the pain and stress.

I woke up and called my insurance company to ask them to expedite the appeals process. I was on hold with them for an hour. I never did get to talk to the senior representative team. They were supposed to call me back and they never did. Twice they've said someone will contact me within 24 hours. Twice that promise has been broken.

At this point, I decided I'd just go ahead and have the prescription filled without my insurance even though it was going to cost me $600. When you are in pain, and no one wants to help you, you consider spending $600 that you can't afford so you can have some relief.

I managed to find a coupon for Nucynta that knocked off $100 and told the pharmacist to fill it. I finally began to relax, knowing I'd have some pain relief soon.

Then the text from the pharmacy came. "We have sent a message to your doctor for clarification on your prescription."

I stared at the text in disbelief. What now?

My boyfriend drove me down to the pharmacy. I was shaking as I went to the pharmacist to confront them and ask them what in the hell was going on now. He told me that the way the prescription was written, he wasn't sure how many pills were prescribed a day. It looked perfectly clear to me. But he'd sent a message to my pain specialist and was waiting for a response.

My pain doctor never got back to him last night.

Or today.

I still do not have my pain meds. 

FIVE DAYS. I have been dealing with this situation for FIVE DAYS.

And I have to ask, do doctors still believe in the Hippocratic Oath to "do no harm"? Because I have been done immense harm not only by my doctor, but also my insurance company. I am in pain 24/7 and need help. I am trying to do this safely and responsibly. I'm not taking untested herbs like kratom that others have tried for their pain because I'm terrified of the side effects. I'm not going out on the streets to buy fentanyl or some other drug that may literally kill me.

I'm trying to do the right thing. And I am being stonewalled at every turn.

I am not alone. There are millions like me who are suffering, and who are desperately in need of help and they are being ignored, treated as "drug seekers" or "addicts" when all we want is to have quality of life. 

I want to be a productive, contributing member of society. I work full time (though I do so from home as my illnesses prevent me from going to the office). I pay taxes. I vote. I want to participate in life. Why am I being discriminated against? 

It's not right. And this must change.

I'm sharing my story in hopes that it will open eyes and minds and hearts. I want to become an advocate for those of us suffering from chronic pain and illness, as much as my health will allow it. The National Pain Advocacy Center is one such place to find help. I am joining them in their fight. 

The American healthcare system is broken. I should not have to fight insurance companies to cover a prescription that my doctor has deemed necessary for me. They should not be making medical decisions for my health to "keep costs down." Insurance companies make money hand over fist. This is, of course, another blog post for another day. But it is part and parcel of why I am currently struggling. Because my health insurance will not cover my prescription, I may have to pay $600 for this drug.

I'm angry. I'm frustrated. I'm indignant. And in my life, whenever I've felt those things, I've jumped into action. I circulated petitions in high school for what were fairly innocuous things (putting shower curtains in the girls' locker room and bringing back the homecoming bonfire) and won. I've fought for my kids in school, writing and calling teachers and principals when necessary. I've written letters to my govt. representatives. I stand up for myself.

And that's what I'm doing now. I'm advocating for myself and for others who cannot. 

I'm a chronically ill person and this is my story.