The current CDC guidelines for prescribing opioids clearly state, “Opioids are not first-line or routine therapy for chronic pain.” Most physical therapists and other non-prescribing health care professions breathe a tremendous sigh of relief as they examine these guidelines, hopeful that lives will be saved, and patients suffering from chronic pain will no longer be placed on the dangerous road to addiction. What we may not realize is the impact this standard of care may have on patients of all types currently using opioids for pain treatment and the clinicians working with them. Experts such as Anna Lembke, psychiatrist at Stanford University, have seen their entire practice transform into one of assisting patients through the tapering process. Dr. Lembke provides insight on the complexity of the opioid epidemic and advice (here and here) to practitioners on how to best navigate this process. But several patients and physicians, unaware of resources like this, set out on their own to do the best they can. Some succeed. Some struggle.
I want to share a success story with you and encourage all of us to get involved in the tapering discussion to equip our patients to break free from opioid use and the inherent risks therein.
While this story may lack the drama of my last post, I suspect it is representative of a common scenario in which we could all play an important role. It’s also near and dear to my heart, as this individual is someone who I think the world of and am very proud of!
Callie (whose name is changed for this post) is 38 years old, happily married, and has 2 daughters, ages 8 and 4. She works as a full-time counselor in palliative care and oncology. She began to experience musculoskeletal back pain starting at age 13, at which time she sought chiropractic care. She assumed her pain was related to 8 years of gymnastics. At age 20, after college graduation, she had bad flare in back and started PT. She was under the impression that she needed to lose weight, as she was carrying an extra 20 pounds or so. She soon developed foot drop on the left LE. She had an MRI, followed by injections for 3-4 months and was placed on a small dose of morphine. She remembers being very scared to take it and felt a warm, tingly numbness throughout her body with taking it at first, but the medication allowed her to go to work, which was very important to her. Between PT and the morphine, she had some pain relief, but nothing relieved her foot drop. She proceeded to have an L5-S1 discectomy. There was also a bulge at L4-5, but the surgeon did not operate on that level.
Surgery resolved Callie’s foot drop and back pain, but the nerve pain in her leg did not resolve. Post-surgery, she was taken off morphine, but then developed a staph infection at the surgical site. She went to see another physician. She was a smoker at the time, and the new physician told her that smoking made back pain worse, so she stopped immediately. She was put back on morphine, and tramadol was added, which seemed to help the leg pain some. She also tried gabapentin, which didn’t help. She received medical care at a large, well-known clinic, as well as physical therapy and chiropractic care. She was diagnosed with fibromyalgia during this time. Her leg pain persisted, so she was sent to a pain clinic where injections were performed as well as a trial of a spinal cord stimulator. The trial was successful, so in April 2003, a permanent stimulator was implanted. It worked, but it broke in June 2003, causing her to be “zapped” from time to time. The stimulator was replaced via another surgery, but it broke for the second time in September. After this, she elected not to have it fixed and relied on medications for pain management. Both stimulators worked for leg pain while they functioned.
Throughout the course of this time, Callie was told she had degenerative disc disease and that she would be in a wheelchair by her 30s. She was also told, “your MRI looks like that of a 40-year-old male manual laborer.” She had just gone back to school for a master’s degree in social work (started 2003, graduated 2005), but was told by vocational rehab that she shouldn’t do that because she would never be able to work full-time. She was also told she could and should try to get on disability due to her back pain.
In 2004, at the age of 24, Callie had a significant flare up of low back pain. She consulted with a surgeon, who said she could have a fusion, but “It would be a nightmare. If you can manage with PT and meds, you will be better off.” It was at this point that I met Callie. PT was initiated, consisting of manual therapy, Pilates-based therapeutic exercise, and a strong dose of reassurance and confidence building. Callie recalls, “Someone listened and cared. I trusted my PT, and I was so excited when I could finally activate my core. I was so deconditioned, and my goal was just to get stronger. A few people believed in me: my PT, my OBGYN, and even the spine surgeon.”
From 2004-2006 Callie was seen on and off in PT, progressing her strengthening program and addressing intermittent bouts of mechanical LBP. She decided to have her dormant spinal cord stimulator removed in 2006, as she wasn’t using it, and it was inconvenient when traveling. She also worried that it would go off, zapping her once again. Happily married by this time, she started considering having children. She became pregnant in July 2008. When she found out, her OBGYN didn’t know what to tell her in terms of the morphine and tramadol, so encouraged her to start weaning off tramadol, figuring it would be better to be on one medication vs. two. She was able to cut her dose of tramadol by 50 percent but couldn’t go beyond that, especially as she started to get bigger. She was able to cut her morphine from TID to BID without much effect. She states she was VERY worried about the effect of the meds on her baby and still feels some guilt about it, as with breast feeding. Insurance wouldn’t approve testing of breast milk to see how much of the drugs her daughter was getting. Four years later, she gave birth to another daughter. Both babies needed an oral tincture of morphine to taper after being born. Withdrawal effects for her babies included high pitched crying and tons of sneezing, but overall, they had no long-term effects that she is aware of.
Callie notes that she never felt that “high” on pain medication. The only time she ever felt a buzz was on Vicodin, so she stopped taking it. When asked if she ever felt judged or stigmatized because of the meds she said when pregnant, yes. Her family and friends all knew and understood. Every once-in-a-while, when going to urgent care for example, she would sense critical attitudes, but for most part providers were okay with it because there was enough reason given the surgical history.
I asked Callie what made her start to think about going off meds. She said that 2 years ago she began to contemplate it, thinking, “I’ve been on this morphine for a long time. I know it’s a low dose. What if I don’t need it?” She had talked to her family MD about weaning 2-3 times over 1-2 years, and he said she could try. She wondered if it was causing her fatigue, and her doctor said she could always just take something for breakthrough pain. “Muscle relaxers actually really help me.” She realized there are other options, “Plus, it was a pain in the ass to get the prescriptions. As my girls are getting older, I don’t want that stuff in the house. I worried about accidentally taking something when other things would come up, and I figured I could always go back on it if I needed it.” She finally decided to pull the trigger and start weaning when she called to get her usual prescription filled and the RN said she saw a note that she was thinking of tapering. The nurse asked if she wanted the full prescription. She thought, “let’s give it a try.”
In preparation to wean, she waited until bow hunting was over, knowing her husband would be more available on the weekends to care for their girls. She had some days off coming up to play with the dosing and would have some days off between Thanksgiving and Christmas. Her husband and family doctor were her primary sources of support, and she was confident that if it was not going well, she could call the office and they would give her oxycodone for breakthrough pain. Her mom also came one of the weekends to help.
Callie had been on 15 mg of morphine, BID, extended release, the lowest dose possible. She systematically weaned herself off, cutting the night dose first, increasing her tramadol a bit, and relying on a bit of Tylenol. Once she was on one dose per day, she worked on pushing these doses further and further apart. This took several weeks. The first night without her morphine she panicked, and several times after that remembers just hugging her husband and saying “I know if I would just take it I would feel better.” After several nights, she made it an hour longer before needing to take it, which was a victory. For the first week she was quite miserable: shaky, anxious, crampy, overly emotional. Her heart rate was elevated, and she had diarrhea. Her blood pressure increased considerably (180/120), and she just felt all-around “yucky.” The blood pressure changes lasted 2-3 weeks, and most of the withdrawal symptoms eventually passed, with her emotions finally regulating several weeks later. Six months after weaning, she is still dealing with GI upset. She worked as much as possible during her weaning time, as it provided a good distraction from her symptoms. She notes, “Never in the 15 years I was on morphine did I take it inappropriately. If I was on a higher dose, even for a shorter duration, I’m sure it would have taken me at least 6 months to wean off.” She is extremely thankful to her husband, a police officer, who never tried to “fix her” throughout her weaning process, but rather, would rub her back a little and explain to the girls that Mommy wasn’t feeling very well and needed a bit of space.
I asked Callie what she wishes she had known going into her tapering process, to which she replied, “More than what the internet says about how long withdrawal side effects will be. Almost everything I could find was for people who are abusing drugs. The information for me just wasn’t there! It took me longer than expected, and I figured it was due to being on it for 15 years. Also, if someone had been checking in on me during that time, that would have been helpful. Even a ‘just in case’ slot with a provider. This would be especially helpful for someone with limited support from the people around them. Reassurance, like, ‘this is expected, normal, it will get better…’ Even a little manual therapy would have been nice. I didn’t even think of contacting you during that time, and now I realize I should have!” Callie stopped by my office after being off the morphine for a couple of months, super excited to share the news with me. We both had the same realization as we chatted: “If only we had known! PT could have really helped in this process!”
I also asked Callie what advice she would give someone thinking of going off long-term opioids. “Talk to your MD to see if they would be willing to help with substitute meds; find one key person that you can talk to about this, turn to, be your cheerleader (for her it was her husband and her mom). Choose a strategic time in your life, such as when you have some work flexibility, so you can take off if you need to for self-care. List your HC team and who you can turn to. Get them on the same page.” Callie noted, “PTs could have a valuable role. PTs can tell patients that we know this pain stuff and are willing to help you. There is a role for counseling for sure… to talk through the guilt and feelings you have as you are coming off that stuff. I kept thinking, my whole adult life has been on this med. I wanted to know what it felt like, good or bad, to be off of it.”
Callie notes the whole process for her, while difficult, went quite smoothly. She believes it would probably very different for people who feel high on the medication and who are on stronger doses. She notes that she certainly has more pain now than when she was on it, but, “I have better coping skills than I did at 22 years-old. My fear is so much better. My flare ups are fewer and farther between. When they happen, I know they are temporary. At some point I would like to try getting off the tramadol too. I want to get all my stomach stuff taken care of first. I’m thinking it will be a good 6 months before heading down that road again, but it’s my next step, and I’m going to take it.”
So that’s Callie’s story. As I noted earlier, I am extremely proud of Callie, and consider it a privilege to have been there, on and off through the years when she has needed a visit or two of PT to get over a flare. We both wish it had occurred to us to have me involved in the weaning process, but true to her form, Callie accomplished her goal thanks to her own tenacity and commitment. It leaves me feeling challenged to reach out to my medical colleagues and educate them on the supportive role PT can play as a patient takes on the opioid-weaning endeavor.
What do you think? What role do PTs play in helping patients who are actively seeking to decrease or discontinue their use of opioids? What will you do the next time someone similar to Callie comes your way? Here’s hoping for more happy endings like Callie’s!