Amid the thoughtless new CDC guidelines designed to punish chronic pain patients on the basis that they are addicts I realized there needs to be more stories out there about what it is actually like to have an opioid prescription for chronic pain.
You can read my story here for some background context of my illness, but basically I went a long time searching for a diagnosis all while my health was getting worse and worse. Ironically I can base my difficulty in getting diagnosis and eventual decent into long term chronic pain on the CDC Lyme Disease guidelines. Doctors ignored me or brushed me off and told me I was depressed and as a result by the time I was diagnosed I was almost bedridden and my life had come to a complete standstill. I spent the next year after my diagnosis undergoing treatment for Lyme Disease with no pain medication of any kind. I was in agony and could barely function, but I was determined that I would not take pain medication. I had two young kids and I thought pain medication would make it too difficult to take care of them.
Things eventually came to a head because I was not sleeping and not functioning in any mental or physical capacity. I went to my doctor who at this point I had been seeing more than a year. I confessed that I couldn’t do it anymore and I just needed to be able to sleep. I had already tried sleeping pills and they didn’t work because my pain levels were too high. I had tried yoga, meditation, massage, vitamins, alternative medicine, you name it I tried it. My doctor looked at my chart and told me that I had been her patient for some time and I hadn’t asked for anything before so she felt completely comfortable prescribing me one Hydrocodone per day. At that time Hydrocodone was considered a schedule III drug, meaning I wasn’t treated like a criminal for taking it and I only had to go see my doctor every three months. As soon as I started taking it I saw a huge reduction in my pain level and was able to start getting more sleep. I gradually improved as I stayed on the medicine. I was able to play more with my children, I started going out more with friends, I spent quality time with my spouse, started exercising, I cleaned my house more, and I started writing on my blog frequently. Hydrocodone didn’t take the pain away, but it lessened it enough for me to live somewhat of a life.
I started taking Hydrocodone in 2014. A few months later the DEA published its new rules placing a more restrictive classification on Hydrocodone products. They moved it to a schedule II drug along side other pain medications like OxyContin, Morphine, and Percocet. This was when I started being treated like a criminal. I was taking the same medicine in the same dosage that I had been from the beginning, but all of a sudden I had to go to the doctor every single month (my doctor is an hour away and when you have chronic pain it’s not painful at all to make that drive), I had to have a written prescription (nothing called into the pharmacy), I got harassed by the pharmacist every time I filled the prescription, and I started getting drug tested. The drug test costs 1800 dollars, only half of which my insurance covers because it is considered out of network. So now I have to pay for a drug test that was forced upon me because I might be an “addict” for taking one Hydrocodone a day.
Every day it gets harder and harder to be a chronic pain patient. The harassment from policy makers like the CDC is getting worse and worse and the support for people in pain has only gone down, not up. I now have a few choices. I could stop taking pain medication, of which by the way I am taking in the same dosage that I started with two years ago (so maybe I’m not an addict?) However, this would most likely mean I would go back to being bedridden. I am currently working part time, I’m active in my children’s lives, I volunteer in my community, I can go out with my friends, I exercise, and I blog on a regular basis. If I stopped taking pain medication all of this would most likely be gone. So my other choice is to submit to harassment and pay ridiculous amount of money just so I can be allowed to function. I have to live in fear knowing that the CDC or the DEA or my doctor could take away my ability to function at any time they feel like it and there’s nothing I could do about it.
These “guidelines” affect people in pain more than they affect addicts. They affect sick people who don’t have any idea how to sell their drugs on the black market. They affect sick people who are in pain in the first place because of multiple doctors’ negligence and are now being punished for that negligence by being told that it’s all their fault. They affect sick people are now being told they just need to take Ibuprofen and do physical therapy and get over it. News flash CDC, do you really think we haven’t tried Ibuprofen? Also, I would love to do physical therapy but my insurance coverage is limited so unless you’re willing to pay for it, don’t suggest it. So go ahead CDC, pat yourself on the back and tell yourself you’re doing something good here even though all you’re doing is punishing people in pain and ignoring the unrelated problem with the disease of addiction.