The War on Opioids Is Taking Me From My Family

The opioid epidemic is a big headline grabber in the news. And yes, it is a huge problem, with many devastating cases of overdoses. What the news fails to mention is the legitimate pain patients. The people who are on stable doses of medication and follow the rules. They are greatly suffering, and their families are mourning the person they once knew as their mother, father, sister, aunt…

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

My pain started when I was in my early 20s. I had a recurrent herniated disk in my spine, and eventually had a spinal fusion. After years of what was called “failed back surgery” I was eventually diagnosed with Adhesive Arachnoiditis. I also have Ehler’s-Danlos syndrome. My knees, hips, collarbone, ribs, spine, fingers—you get the idea—come out of place with almost every movement I make.

For years, my pain was well managed. The caveat? It was managed with very high doses of opioid pain medications combined with muscle relaxers, anti-inflammatories, and anti-seizure medications that help with nerve pain. I also went to physical therapy, used tens units, took hot baths, kept heating pads and ice on hand, and had an arsenal of other at-home remedies. But, I could function and lead a somewhat normal life. Every morning, I could take my dog for a walk in the park. I could do a quick trip to the grocery store. I was able to attend physical therapy appointments two times per week, continuously. I was even able to give birth to a baby boy, with help from my healthcare team managing my medications. When he was born, my pain was controlled enough that I could take him to mommy and me classes, go for walks and take him to the park. I would make him healthy meals and snacks and we would get down on the floor and play together.

And then the war on opioids started. Pain management physicians started to get scared. They were seeing their colleagues face criminal charges for “over” prescribing. Even if it was to patients who had meticulously documented medical histories and had maintained stable levels of medications over several years—in my case I was at 7-10 years of no increases in my pain medication and my pain was still well-managed.

My pain medication, over a period of time, was cut to less than half of what I was taking to manage my pain. This was in 2015. My son was 2. Slowly I lost my ability to do the things mentioned above. We had to make the tough decision to put our son in full-time daycare because I just couldn’t care for him on my own. It was devastating that I couldn’t do the one job I was put on this earth to do. But, I managed. I was still making it to physical therapy, took my son to soccer, and used my little bit of energy to try and be a good mom and wife.

Then, the medication cuts came again. Doctors were feeling pressure from the CDC, and were forced to taper medications yet again—and again with no concern for a patient’s history. It didn’t matter that I had a disease sometimes compared to cancer pain, but without the release of death. It didn’t matter that I dislocated joints in my body with almost every step that I took. No one cared that my blood pressure was unmanaged because of the severe pain I was feeling.

My doctor’s hands were tied. But I was quickly becoming a shell of the person I was when my pain was managed. I now use a rollator walker and am getting an electric wheelchair. My son frequently misses activities because I am in too much pain. My family doesn’t get home-cooked meals. I don’t have the energy for things like physical therapy, because every second that my pain is somewhat under control is used to care for my family. The rest of the time I am confined to the recliner. I can’t even count the number of family events and holidays I have had to miss.

My medication is continuing to be tapered. And as a family, we are preparing. We will need to hire help to get my son to and from school, and if he wants to join any sports or extracurricular activities. My family is losing me. And it’s sad. Because there is a solution. If my pain was managed, my life would be much different. Would I still have limitations, be in pain, and have a restricted life? Yes. But I would be able to function enough to care for myself and my family…and maybe even fit in some time to enjoy myself.

So, the next time you hear that someone is taking prescription pain medication don’t judge them. Listen to their story. We need to fight so that legitimate patients with severe intractable pain can have a life with less pain.