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Jill Cottel, MD shares a pain story
I didn’t quite know what to make of my new patient Rod. He was a pleasant 55 year old man who stood about a foot taller than me and was over twice my weight. He appeared rough on the outside and seemed like someone who could be intimidating. But when he began to speak, he had a gentle way about him; he was soft spoken and thoughtful as he told me the story about his pain. He seemed very sincere, but then so do most patients who come to doctors looking for pain medication.
“Doctor Fredericks said that he knew you and that you were the best,” Rod said looking hopeful. “I have a lot of specialists, but no one is really in charge. I’m diabetic and taking medication. I’m due to have my labs checked.” Rod had several red flags for someone who was drug-seeking. His referring doctor was someone I knew, not well, but mainly by reputation, being one of the leading vascular surgeons in the region. It was very flattering to think that he had sent him to me, but hard to believe, as he had never referred anyone to me before.
“How long have you been seeing Doctor Fredericks?” I asked. “Oh I’ve been a patient of his for a long time,” he said. “He’s been my surgeon ever since my surgery in 2003 when I had sepsis from perforated intestines." Rod leaned back in his chair. “He’s a really great guy, and we’ve gotten to be good friends now.” I smiled and nodded, but all the while I was thinking that they seemed like an unlikely pair. “What other medications are you taking?” I asked. “Well, lately I’ve been taking oxycodone but it barely helps at all,” he said, and then his countenance fell. I was fairly sure at this point that I was not going to be able to help him since I wouldn't be prescribing oxycodone for him. I felt bad continuing with the appointment, but his story had an authenticity about it. I found myself drawn in, and so I prompted him to continue.
Rod’s medical history was very complicated and I took pages of notes as he talked. He had a genetic condition where part of his heart was enlarged; this had caused endless problems for him. I could tell immediately that talking about it was causing him some anxiety. He had already been through two procedures trying to fix the enlargement and the abnormal rhythm that had come with it. The second procedure was very complex and was done at a prestigious university in another state. Rod ended up having single vessel bypass surgery at the same time, which was unusual for someone his age. His heart seemed to be fixed for the moment, except for the occasional racing of his heart or a feeling like he might faint.
“It was after the bypass surgery that I started having the pain,” Rod said, “and no one could tell me why.”
At first it was just in his chest where his sternum had been sawed in half, which wasn’t surprising to me since I’d seen those fresh scars first hand. “So the doctors figured it was the usual pain and would just go away, but it never did. Then I started getting pain everywhere.”
Rod went on to describe what amounted to severe disabling total body joint pain, bad enough that it was completely interrupting all his usual daily activities. He had morning stiffness in his joints lasting up to two hours. This had been going on for about five months now, and his surgeon had recently drawn labs showing his inflammatory markers to be unusually high.
“Here are the test results,” he said. Sure enough, his cardiac C-reactive protein (CRP) which shouldn’t have been higher than 3 was 31.64. That was definitely a sign of something wrong.
I went on to take the rest of his history. He had fatigue, weakness, and some issues with his mood. He also had an extensive orthopedic history. As he rattled off all the joints that had been operated on, I was writing rapidly in an attempt to keep up, but then I just gave up. “Multiple orthopedic surgeries,” I wrote, “see patient's list.” I set down my notes and examined him.
He had the long scar on his chest that I had expected to find. He had an interesting heart murmur, and I found myself wishing I had a student with me that day to appreciate it with me. His joint exam was rather unremarkable except for very stiff hands.
As we both sat back down in the chairs, I took a deep breath and prepared to give him the news that I was certain he wouldn’t like. “It sounds to me like you have some sort of inflammatory arthritis, possibly autoimmune,” I said. “What you really need is a good rheumatologist and a pain management specialist. I don’t prescribe narcotics for chronic pain.” He sighed. “So that means that I’m going to have to see even more doctors,” he said, looking more depressed than he had before. I felt bad for him. “But I can give you an order for your labs to be done, and I’m happy to manage your diabetes and other medical problems.” He took the lab slip and appeared to be resigned to the situation. We shook hands, and I watched him walk out of the office looking a bit defeated and somewhat worse for wear. I wasn’t sure if I would see him again, and I was left hoping that he would at least have his diabetes testing done.
About three months later he returned to the office. “All my joints are really painful,” he said. “The worst are my elbows and knees.”
He had managed to set up an appointment with a rheumatologist, but with the long waiting time at the local clinic, it was still going to be weeks until he was seen.
He had done his labs just as requested, and his diabetes was under good control. I had added some autoimmune tests to his last lab slip as well, and not surprisingly they came back positive. “I’m almost certain you have autoimmune arthritis,” I said. “While you are waiting to see the rheumatologist there are a few natural things you can try,” I added. I proceeded to write down instructions for him to get an omega-3 supplement and an herbal anti-inflammatory supplement over the counter. We also discussed an anti-inflammatory diet.
He left the office looking not too optimistic, and I didn’t blame him. It didn’t seem likely that fish oil and herbs were going to control pain better than his oxycodone.
A year went by and Rod was back in the office again, but looking like he had aged much more than just one year. “A lot has happened since I was here,” he said. “I started getting chest pain and getting the racing heart again.” He sighed. “So I had to have another surgery.” I noted that he was on more prescription medications than last time, presumably started by his heart doctors. “Those symptoms are gone now, but my joint pain is actually worse than it was before the surgery.” He had finally seen a rheumatologist, but he didn’t have a firm diagnosis yet. “She thinks maybe I have osteoarthritis,” he said. I didn’t comment on that.
We chatted a bit more this visit than we had before. It turned out that he was a musician, and he regularly played bass guitar with a group at the local nightclubs. “Here’s a picture of me at one of my gigs,” he said, showing me a picture of himself on his phone. I did a double take. This didn’t look anything like my quiet middle-aged patient. In the picture, he had long hair, glasses, and was dressed like a rock star holding his guitar.
“This is you?” I asked, looking at my patient with interest. “Yep,” he said. “I can’t play as much as I used to. My hands and shoulders hurt so bad. I had to get a special strap made for my shoulders. I take some extra pain meds before I go on.” His gaze dropped off and he looked into the distance.
“Been playing for 50 years now.” I didn’t really know what to say at that point. We chatted some more and then he left the office.
Another six months went by and Rod was back in my office again. “Doctor, there has got to be something out there that can take care of this pain,” he said. “I tried the medication the rheumatologist prescribed and it raised my liver tests, so we had to stop it. I don’t want to try another one of her treatments.”
He was sitting on my exam table and looking down at me intently. Instead of desperation in his eyes, this time I saw resolve. “I also went to the pain management clinic,” he said. “They told me they can’t help me. They said that I have too much pain.” As I sat in my chair looking at him, I could hear my pen tapping against my clipboard as I thought about the situation.
I was having good success at that point with low dose naltrexone (LDN) with many of my patients. But he wasn’t a candidate at all.
He was on long-acting narcotics, at an outrageous dose by that time, and he couldn’t take the LDN at the same time. I didn’t see how LDN could possibly control pain that 100mg a day of oxycodone wasn’t touching.
But as I sat there and looked at him, I kept hearing a voice in my head telling me that he deserved to know what LDN was and how it was being used to treat patients like him. “Rod, there is a treatment I’ve been using with my patients who have autoimmune joint disease,” I began to say.
“Great,” he said, “let’s try it.” I shook my head and put my pen down. “It can’t be taken at the same time as long acting narcotics.” He looked at me and said, “Fine, I’ll stop them.” I picked my pen up and started tapping again. “Rod, you’re on a pretty high dose. I don’t see how this is going to work.” “I can do it,” he said.
I give up. I went over all the possible side effects and risks and ended with a stern warning of what could happen if he took it with his long acting narcotics. He was settled, and our office called in the medication for him later that day. He would start at the 1.5mg dose for one week and then go to 3mg per day. He would see me back in about six weeks.
Rod came back in five weeks. “You won’t believe this,” he said. “I’m pain free. It took about 3 weeks to work, and then I didn’t need any more pain medication during the day at all.” He smiled. “I still need an occasional pain pill during the night, but that’s it.” I looked at him.
“You’re telling me that you went from 100mg of oxycodone per day to almost none in three weeks?” “Yes, that’s exactly what happened,” he replied.
He went on to tell me about all the symptoms he no longer had. The morning stiffness was gone, as well as the fatigue, the back pain, the joint pain, and even the restless legs symptoms he had been having. “You want to know something interesting?” he asked. I nodded wondering what could possibly be more interesting than what he had just described. “It turns out that I have this great sense of relief. I didn’t realize how worried I was about running out of my pain meds,” he said. “I didn’t realize it until I no longer needed them, and then I was able to tell how much it was weighing me down.”
I smiled. “That’s wonderful. I suppose that makes sense,” I said. He looked at me suddenly very serious. “You know doc, if this is the real deal, and if this is the way it’s going to be from now on..." He searched for the right words. “Well, it’ll just be incredible.” I nodded. “I agree,” I said. He got down off of the exam table and headed out the door. I watched, thinking I’d just witnessed a miracle of some sort.
It’s been a long time now since Rod took his last pain pill. He is still pain free on 3mg of low dose naltrexone. I’m so thankful that I didn’t pass up that opportunity to tell him about LDN, and that he was willing to try an alternative treatment. Neither of us knows what Rod’s future holds, especially with his heart condition. But I do know one thing for sure.
Tonight he will be out there dressed like a rock star, enjoying his life and playing his guitar. And that makes my heart happy.