I was born with my kneecaps in the wrong place, shifted out to the outsides of my knees and rotated off center. As a kid I could run, jump, and ride a bike like most other kids and was not diagnosed with any related problems. As a teenager I began to have pain and swelling after any activity. I could no longer jump more than about 2 inches off the ground and forget playing catcher or front row volleyball. In college I finally went to see a doctor about it who told me the reason my knees look different than most people’s. He gave me some exercises and ibuprofin. I was 19 and moved on with my life, accepting that pain was going to be a part of it.
All of a sudden 40 hit and I began to have major difficulty walking. Forget running, squatting down to pick up a child, or hiking. I asked my primary care physician for a referral to an orthopedist and got in to see a great one who sent me to physical therapy and gave me Norco (a short-acting hydrocodone and acetaminophen medicine for pain). I took the meds, did the exercises, and eventually had surgery on both knees to rotate and slide the patellas into their correct place. All was good for 3 years when the kneecaps started to move back to the outsides. I can still walk and pick things up from the ground, so no surgery yet this time. Instead, I went back on the Norco, continued the exercises, and went on with my life, again knowing that pain would always have a place in it.
15 months ago we moved to South Florida, the hydrocodone pill mill of the country. This makes doctors in Florida incredibly averse to prescribing any short acting opioids. I went to a pain management specialist who refused to listen to how well it had worked for me for 7 years , so after some experimentation (including extended release morphine and fentanyl, which is most frequently found in hospice), we settled on Hysingla, an extended release “pure” hydrocodone medicine that was developed in response to the over-prescription of pain meds that led to their abuse and to rising heroin abuse. It’s supposedly abuse-proof in that they say it’s harder to crush and snort because of additives in it. But one look at reddit brings up people talking about scoring it and doing just that. But, I got that this was the direction pain management was going and agreed to try it. Besides, it’s easier to set an alarm and take a pill once a day than to take one 2 or 3 times, right?
Nope. First I had to figure out when in the day I should take it. One pill is supposed to last 24 hours. I started with the morning since I figured I wanted the most relief while I was awake. It put me to sleep, made it difficult to retrieve words and concentrate, and made my heart race. I am extremely lucky I work from home so I could work around these side effects. I switched to taking it right before bed, which had the effect of my feeling like I couldn’t breathe when I laid down. So, I started taking it around 5:45 PM, which meant the tiredness was kicking in around bedtime, and the heart palpitations were over before I’d lay down so I could get to sleep. It seemed like a success. However, the “24 hour” relief took about 3 hours to kick in and then lasted about 4 hours. This meant I had to take Tramadol (a synthetic opioid) once or twice a day for breakthrough pain. I had been taking 20 — 30 mg of Norco a day, and was now up to 30 mg of Hysingla and 20 mg of Tramadol a day, all in the name of not prescribing me a short-acting version of the same basic medicine so I wouldn’t abuse it.
Monday I found a new pain management specialist, who put me back on the Norco. I got the prescription filled Tuesday and am now back on 20 — 30 mg of hydrocodone a day. The scary part is that even though I am still taking an opioid, I am experiencing major withdrawal symptoms from getting off the supposedly harder-to-abuse Hysingla. I am not trying to make light of the opioid abuse that’s been occurring throughout our country as it is a serious issue, but want people to know that there are millions like me who have never abused their prescriptions, taken them only as needed and prescribed, and tried to do the right thing. Please think about this if your state wants to pass legislation regarding opioids. There are better ways of dealing with it than making people who are in chronic pain play with their health by scaring doctors away from prescribing what works for those people. This process would have cost me my job if I had to go into an office every day. It shouldn’t be this hard to try to live a less painful life.