(Editor’s note: Red Lawhern recently wrote a column about Dawn Anderson, a 52-year Indiana woman who died this month after a long battle with chronic pain and illness. Dawn was a double amputee and diabetic. We may never know the precise cause of her death, but as Red points out, Dawn died in “needless agony” because her pain was poorly treated.
Last September, Dawn wrote a letter to her longtime primary care provider and shared a copy of it with PNN. Her letter is essentially a plea for help. Dawn asked the primary care doctor to take over her pain management because she was no longer able to get opioid medication from Dr. Paul Madison, a pain specialist who ran afoul of the law and stopped practicing medicine.
Dawn wanted the letter published and her family has agreed because they want her story to be heard.)
A Letter to My PCP From His Chronic Pain Patient
You and I have been together, side by side for many years. You have been my doctor. I have been your patient. You have cared for me during my most vulnerable times. You know my most precious secrets regarding my physical and mental capacities. I have shared openly and honestly from my heart. You have saved my life not once, not twice, but numerous times.
The pain I have endured has been stressful, exhausting, depressing and life changing. You had tried your best to control my pain. Thank you for your referral to pain management. This has been my experience.
I was promised by numerous pain management physicians my pain would resolve and I would be walking upright. I knew it was puffing as no doctor could make such a promise. Each time seeing a new pain management specialist, I went through numerous non-opiate medications. Lyrica, Elavil, Cymbalta, Neurontin -- the list goes on and on. They tried numerous alternative treatments. Physical Therapy, Occupational Therapy, Acupuncture, Acupressure, epidural injections, trigger point injections, caudal injections, radiofrequency nerve ablations. Not only did these cost lots of money, it took lots of my time and energy. Most did not work. Some gave relief that was short lived.
Many of the doctors I had seen tried opiate medications. I was on high dose Methadone when you referred me to the pain specialists. The Methadone made me so drowsy. It allowed me to sleep but it did not relieve the pain. I was forced from pain doctor to pain doctor. When one could not fulfill the promise of relieving the pain and having me walking upright, I was discharged from the service with a letter saying my condition was too complex and they would no longer see me. Or I would get the famous, “I don't know what else to do for you.”
Many of the opiates I was prescribed did not relieve the stabbing intractable pain I was experiencing. One pain center refused to see me because I was discharged from one service and scheduled the appointment 28 days later. I was accused of drug seeking. I was in no way seeking drugs, I was seeking relief from the pain that kept me thinking I would be better off dead.
After the second amputation and surviving septic shock, I had no hope. I was so tired of the pain, the hospitalizations, the medications, the embarrassment of crawling around like a dog, the quality of life that I no longer had. I couldn't even wipe my own butt. But there was something about that granddaughter who was recently born that I needed to hold onto some type of hope things would get better.
Midwest Pain Management was my last hope. I explained everything I had endured as far as pain treatments, the type of pain I was having and all the locations my pain was affecting. I was slowly weaned off Methadone. Again, I had to go through all those previous alternatives, previous medications, previous treatments.
The last trigger point injection I received caused an abscess about the size of a grapefruit. I had to get the abscess drained, get placed on antibiotics and the doctor refused to do any further injections for fear of more infections and septic shock. The only option at this point was again, the opiate based medications.
Now understand when you agree to go on opiate medication, you sign a pain contract. Basically limiting you to one doctor prescribing opiates, one pharmacy to obtain the opiate, monthly urine drug screens, and occasional pill counts which means the office can call you any time and you must go in with your pill bottle.
Although many of the opiates caused drowsiness, they did not control the pain. After almost two and a half years of trying different drugs at different doses, this pain doctor was able to find the right drug at the right dose that relieved my pain and not cause extreme drowsiness. I was able to start doing things I did prior to both legs being amputated. I was able to live on a daily basis without being so drowsy and unable to focus. I began to have hope as I was able to care for my family, take care of the house, start paying the bills again, look forward to going on vacation.
This was 8 years ago. I have remained on the same drug and the same dose for those 8 years.
You have seen me at my most desperate times. You have seen me when all I could do was focus on all the pain I was having. And you can attest for the last 8 years, my pain has been under control and has not been a topic in our office visits until now.
You and I have always spoken with honesty and sincerity. You have always called my pain doctor my drug dealer. Although I have always smirked when you say it, it hurts my heart because I feel if it wasn't for this pain doctor who never gave up trying old treatments, new treatments, questionable treatments, I would have killed myself many years ago.
The quality of life I had on high dose opiate medication relieved that excruciating stabbing pains in my back, stumps and hips. I may not be walking upright but I was walking with minimal pain. Until recently, you and your office did not even know I had a wheelchair. How do you think I was able to do that? I was able to do that because I was taking the pain medication my so-called drug dealer prescribed for me. I never once abused them, misused them, diverted them, overdosed on them.
Since the decrease and removal of the long acting medication, my quality of life has greatly diminished. It is so painful to walk with the prosthetics. It hurts to bend, it hurts to stand. The pain has returned and again, all I can focus on. Being in constant pain is exhausting, depressing, and taking my will to live.
You may see this as being addicted to the medication. I see this as being addicted to the quality of life I had when my pain was under control. The life where I could put on my prosthetics, go shopping, go out in the yard and rake my leaves. The life where I enjoyed being around others without having constant pain to focus on. That life where I loved to plan and go on cruises to the Caribbean. That life that no longer exists.
I feel like there is nowhere to turn, no one to help. I know there is a life where all this pain I am experiencing can be relieved with one medication. I am desperate to get that life back.
(Editor’s note: How did Dawn’s doctor respond? “I brought him the letter and have not received any communication from him. Just sad. He has been my doctor for decades,” Dawn wrote in an email last October. “I'll fight until I can't fight any longer. I have lost over 40 pounds and my muscles keep getting weaker.”
Dawn died on March 11, 2019. She is survived by her husband, two daughters and three granddaughters.)