Susan Lay, Guest Columnist

I have been on pain medication for over 30 years, starting with Vicodin. My doctor at the time wasn't concerned about the hydrocodone in Vicodin as much as he was the amount of acetaminophen in it, as it could destroy my liver.

He sent me to an anesthesiologist, who has been my pain doctor for over 20 years. After all the nerve blocks, physical therapy, imagery, TENS unit, spinal cord stimulator, pain pump, etc., I was given Roxicodone. Afterwards, OxyContin was created and then time released OxyContin.

I couldn't tolerate them, so he gave me fentanyl patches (which were new on the market) with fentanyl lozenges for breakthrough pain. My insurance eventually denied the lozenges. The patches were wonderful because I had no feelings of being “high” like other drugs. They made it possible for me to continue working and have a life. I have used the patches since that first day and they've been a Godsend.

Subsys spray was prescribed for breakthrough pain about 6 years ago, but at $22,000 a month, my insurance only paid for a year.

I'm so fortunate to still have the same doctor, although he's getting older and will retire soon. My main issue has been with pharmacies. I live in a very rural area of California and about 2 years ago my regular pharmacy refused to fill any opioids due to DEA and other concerns. My doctor has continued to write scripts for me, but I found them extremely difficult to fill. All the pharmacies I tried, including Walmart, Rite Aid, Walgreens and Safeway, denied me. Some felt uneasy, would only fill a script for 2 months, or just plain would not fill them!

I tried mail order prescriptions, but they eventually stopped. I tried a small pharmacy 2 hours away, but had to talk the pharmacist into it, after he requested 6 months of medical records and advised me they would only fill my prescriptions every 30 days, with no early refills for vacations.

All has been good this past year, although I don't know if my insurance will continue to cover my meds. I'm 70 and on Medicare Part D. I've never increased the amount of patches or strength I use. I have Dilaudid for breakthrough pain, which doesn't help much, but some. I do what many other pain patients do to get their medication: drive for hours to my doctor once a month, undergo drug tests, sign pain contracts, and use no alcohol. I must go to office if they call for a drug count.

I discovered withdrawal from the fentanyl patches isn't as horrible for me as it is for addicts who just want to get high. I've had to go without for 5-6 days a few times, when the pharmacy was closed or I couldn't get to the doctor. My doctor explained that those in real pain are wired differently and withdrawal is usually easier. He did give me a script for methadone if I'm ever in that position again.

I feel extremely lucky to have a doctor who actually cares enough to help his patients. His contract says if any patient must go off opioids (for missing an appointment, using alcohol or whatever) he will assist us through withdrawal so we don't suffer.

It's the insurance and pharmacies that are causing us so many problems. Does anyone in other states have these issues? Marijuana is legal in California and we're a progressive state, yet even in my small rural area we're having major issues. Several pharmacies have closed, due to scrutiny by the DEA and other government involvement. It's not worth it to be constantly going through records and double-checking the way they do things.

Insurers and pharmacists have more power than doctors. Even with an honest and necessary prescription, they continue to over-ride doctors’ decisions. Pharmacists refuse to fill for quantities doctors have written, even when insurance agrees with that quantity. When a doctor speaks to the pharmacist, it makes no difference. When did pharmacists become doctors? The same goes for insurance companies that now refuse to pay for prescriptions they've covered for years.

I just don't get it. I'll do anything I can to fight FOR chronic pain patients and AGAINST those who don't give a damn about us and think if you use opioids you're a drug addict!

Susan Lay is a retired nurse and day care operator. She lives with chronic shoulder and knee pain.

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The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.