By Robert Hale, Guest Columnist
I am 50 years old and suffer from late-stage Ankylosing Spondylitis. My entire spine has fused, along with my entire neck. I cannot look left or right, nor up and down. My shoulders are in the process of fusing.
I have a broken clavicle – broken in two places – that refuses to heal. I also suffer from peripheral neuropathy in my legs, which makes walking feel like treading on broken glass.
My disease is degenerative, progressive and incurable. The only relief I can get is with opioids. Taking long acting morphine and hydromorphone as a breakthrough medication, has literally saved my life. I do not get any joy or “high” from these medications -- only relief from pain -- which is as close to a miracle as could be hoped for, for someone in my situation.
For the last 10 years, I have been seeing doctors, both in the field of palliative care and pain management. Early on, we managed to find a dose of opoid medication that was appropriate for me, and I began my life anew.
No longer bed-bound and useless, but able to function again, and become a productive member of my family and society. I opened up a guitar shop and began working again – albeit at a gentle pace – and I really felt that my life was worth living again.
I wasn’t happy to be taking pills every day to achieve this feeling of well-being, but it beat the alternative. I asked my doctor, a wonderful, empathetic and kind doctor, how long I would have to be on these medications. He told me, “Probably for the rest of your life”.
Sadly, my awesome doctor left the palliative care clinic I was attending, and I was forced to move to a pain clinic in Overland Park, Kansas. It is run by a highly respected pain management doctor, who took one look at me, asked me to walk down the hall and back, and knew immediately that I was a good candidate for the medications I had been taking.
For several years more, everything was fine – the doctors and nurses were great. Of course I had to sign a patient contract, agreeing to take my medications as prescribed (which I always do), not to take anything else, including illegal drugs, and not to share my medications with anyone. I also was subjected to frequent urinalysis to prove that I was complying with my treatment plan.
I never strayed from that plan, nor did I ever have a drug test showing anything but what it should. I was, in the words of one of my nurse practitioners, the “perfect patient.” I took the meds I was prescribed, exactly as they were meant to be used.
I am not an addictive personality, so I never was tempted to use my medications to try to get high, nor do I think I am addicted to my pain medications. I do have a tolerance to them, which is unavoidable in my situation. I have been on large doses of morphine and hydromorphone for over 10 years. I’ve learned to respect these powerful drugs, and to treat them with great care.
The "New Cruelty"
Unfortunately, ever since the CDC opioid prescribing guidelines were released, stating that the maximum dose for any one person should be no more than 90 mg of morphine equivalent opioids per day, my pain care has changed for the worst.
The guidelines clearly state that they are meant for general practitioners, not doctors who specialize in pain management. However every pain doctor I have contacted see the guidelines as rules, and they have begun a relentless campaign of reduced opioid prescribing. All of the pain clinics in my area have followed suit. My pain doctor even went so far as to sell his practice to one of his partners. I suspect this is so he couldn’t be blamed for the “new cruelty,” as I like to put it.
It is very disturbing to talk to him these days – it’s like he is a completely different person. Gone is the compassion, the empathetic “do no harm” doctor that I had gotten to know over the last several years. He now claims that the reason he no longer prescribes the meds we need is because of the danger of overdose.
If a doctor like him can be swayed by this propaganda, there are at least a thousand more around the country acting the same way.
Some chronic pain patients have it worse than me, although it is difficult for me to imagine that, as my increase in pain levels has literally left me all but crippled. I have told the pain clinic this, but they just look at me and say, “Oh, I’m sorry. You’ll get through this somehow.” But they know better.
I have already had my medications reduced drastically, to about a tenth of the dose I have been safely taking for years, and I am absolutely miserable. My days are once again filled with unrelenting pain, and on top of that, I am suffering from opioid withdrawal. I constantly feel like I have the flu, and can only sleep 2 to 4 hours every night. I am back to being bed-bound most of the time, and it is physical torture to do the simplest things like dressing and showering.
I cannot help around the house, to help my father who is 77-years old. He just lost his wife, and my mother, to Alzheimer’s disease, and he needs me. And I need him. I can no longer play with my dog, Aya. This breaks my heart – she deserves so much better.
The worst part is, I’ll be back in the pain clinic next month, to have my dosage cut down again, because I have not agreed to have an intrathecal morphine pump installed in my body – an option that is not available to me, due to the fusion of my spine. Other doctors have warned me not to have this procedure done, so it’s back to the clinic to get my meds cut down again. Pretty soon, I’m going to be at a level of pain that the tiny amount of morphine they will allow won’t even touch. What am I to do?
Here is a link to an excellent article on PNN, headlined “Pain Care Shouldn’t Be Political Theater” by Dr. Richard Oberg, a man whose disease is in the same family as mine.
“The current hysteria over opioid pain medication is, without a doubt, the most unbelievable and difficult situation for patients I've ever seen in my 30 years of practice,” Oberg wrote.
Something is going to have to change, and fast, or a large percentage of the chronic pain patients in this country are going to die by their own hands, or be forced to find their medicines through illegal means, or switch to drugs like heroin and become statistics themselves. I am just one voice, but I speak for thousands. There are so many of us who are unable to even summon the energy needed to type a column such as this.
I just read an article stating that since the CDC guidelines were put in place, the rate of suicides among pain patients may be rising. I’m not surprised at all. I think about it all the time now. The only thing keeping me here is the fact that I have people who depend on me, and the fact that I think suicide is a sin. I don’t want to wind up having to learn all these life lessons again.
Please, for the love of God, listen to my words: Most of us are too weak and too sick to even make a plea, so I’m doing this on behalf of all those who are too weak to even type a letter to their congressmen or the people who can make a difference. Stop treating chronic pain patients like drug addicts!
We don’t even like the damned pills, but without them, we are in a living hell – an evil downhill spiral that can only end in madness, addiction to illegal drugs, or death.
Robert Hale lives in Kansas City, MO. He was diagnosed with Ankylosing Spondylitis at the age of 27.
Pain News Network invites other readers to share their stories with us. Send them to: editor@PainNewsNetwork.org.
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.