Opioid Induced Hyperalgesia

My Informal Disclaimer: Let me begin by saying I am not a doctor, nor am I trained in any medical profession. I do not pretend to be an expert; I am simply a person who is trying to make sense of her own experience. I am sharing what I learn and experience here because I know how lonely the road from diagnosis to recovery can be, and if I can help even one person, the time I spend writing these words will be worth it. 

One theme that comes up time after time on the SCTA (Spinal Cord Tumor Association) Facebook page is pain management. Since opioid pain medications play a role in pain management, there is a lot of discussion about the proper use and distribution of these medications. While some of the members of the SCTA seem to be able to cope with the pain without opioids, there are others who report taking these medications for months or years without improvements in their pain levels. So, when I heard a report on NPR (National Public Radio) about opioid induced hyperalgesia, my curiosity was aroused.

The author of the report, Clayton Dalton, is a resident physician at Massachusetts General Hospital. In his report, he presents research that suggests long term use of opioids leads to hypersensitivity to pain. Going back to 1870, Dalton cites evidence of the pain magnification that accompanies opioid dependence. What does this mean for spinal cord tumor survivors and others with chronic pain? Well, it seems to be a clear message that the opioid based drugs that appear to be an elixir in the early days following surgery can quickly become a major part of the problem.

“This could be a major factor in the opioid crisis,” Arout says. “People have worsening pain, and so their dose is often increased because they are thought to be tolerant.” But the result is that some patients may find themselves taking dangerously high doses while their pain continues to intensify. – From Clayton Dalton’s NPR report on opioid use.

There is no doubt that spinal cord tumors (and the spinal cord injuries that often result from the surgery to remove them) cause pain. And now, this report suggests that opioids intensify that pain if taken for an extended period of time. Suddenly bells and whistles are going off in my head. This explains so many of the posts that I have read on the SCTA Facebook page. Many of the members of this page experienced pain for years before getting their diagnosis. They might have bounced from one doctor to another searching for answers, and in the interim, the puzzled doctors may have prescribed opioid medications to numb the pain. This would have been okay in the short run, but as the patients migrated from one specialist to another, days turned into weeks, weeks turned into months, and months turned into years – while well meaning doctors prescribed increasing doses of these medications thinking the patient was just developing a tolerance to the pain medication. The patient was, unfortunately, being made more sensitive to the pain they were trying to control.

Now we have large numbers of people whose years of opioid use have, according to the information in this report, lead to hypersensitivity to pain. The pain is not imagined, and they are not weak. They need alternatives to opioids that will cut through the pain and allow them to get on with their lives. What are those alternatives? Some people report that physical therapy can help. Others rely on non-opioid pain medications, massage, meditation, acupuncture, or other non-traditional treatments. For those who live in states that allow the distribution of medical marijuana, that seems to be a promising option. However, once a person has developed hypersensitivity to pain due to prolonged use of opioids, how long does it take to retrain the nerves? Are these alternatives able to stand up against heightened pain? Or are they more helpful for patients who have not experienced long term opioid use? There are so many implications and so many questions that need to be answered because SCT survivors desperately need tools to help them cope with their pain.

Hopefully, researchers are aggressively working to find answers to these questions, so people living with chronic pain can find some relief and get back to the business of enjoying a life lived without pain.

If this topic interests you, here are some articles you might enjoy:

When Opioids Make Pain Worse – National Public Radio

Treating Pain with Fewer Opioids – National Public Radio

Would be interested to hear what you have to say on this topic. I know it is something many SCT survivors have strong opinions about.


Do What You Can’t

I know… it is an advertisement, but I saw it during my first week back at work after my spinal cord tumor surgery, and I have to tell you that it really resonated with me! I was feeling so broken, so fragile, so incapable of facing the challenges that were bombarding me. Then I saw this ad and my eyes filled with tears. Do what you can’t… that is my calling for the next year as I tackle this recovery. DO WHAT YOU CAN’T.

The Jabberwocky – vs – The Dissertation

For the past two years, Saturday mornings have been reserved for my dissertation. I pack up my books and head to the local library to immerse myself in research. But today something different happened. When I logged into the internet, instead of searching for more articles related to my dissertation topic, I found myself googling “schwannoma” – “neurofibroma” – “spinal cord tumor”.

Soon I found myself lost in a labyrinth of information about this thing that is taking over my life. I’ve read stories of people who have had the surgery and come out on the other side satisfied with the results, but I have also read stories that scare me. Stories of people who now realize the rest of their lives will be dictated by pain. Stories of limitations and loss. Stories of good doctors and bad doctors. So much to process. So many decisions to make. I read and read, but the big questions remain. How long will it take for me to recover? How much will this impact my job? My dissertation? My marriage? And I’ll be honest, it is hard to be optimistic and hopeful.






The Return of the Jabberwocky – Part II

I didn’t recognize the Jabberwocky immediately when he returned. There were big changes happening at work, and in addition to accepting a new position with much more responsibility, I was enrolled in a doctoral program as a full-time student. To say that I was busy is an understatement. I knew that I was tired all the time. I also knew that I was having back pain on and off – but the pain was minor compared to what I experienced with my migraines.

I easily ignored it at first. But with time, I started getting up from my desk more often to stretch. When I bought a new car with seat warmers, I found myself using them all the time. And I was complaining incessantly about uncomfortable chairs. There were even days when I sat on the floor during class because the seats were causing me too much discomfort. But still, the level of pain was not even close to what I’d experienced with the migraines, so it barely registered in my mind.

With the new year, I made a commitment to exercise more. I got a membership at a local gym, and I started working out a couple of nights each week. The gym had a pool, so after about a month of walking the track, I decided to give swimming a try. Two weeks passed, and I started to notice a tightness in my back. I mentioned it to my massage therapist, and she told me that it might be from muscle fatigue. She tried to release the tension, but the attention she was giving to my lower back produced more pain. When I left that session, I thought she might have somehow forced something out of alignment. Unfortunately,  I waited for the pain to subside – but it didn’t.

The next week, after swimming two laps, the pain was more than I could handle. I was halfway across the pool, and I wasn’t sure I would be able to make it to the wall. I did make it, and I tried to stretch. I thought it was a muscle cramp. Stretching didn’t help. I attempted another lap, but I had the same result.

Convinced that I had injured myself, I went to the doctor. He, in turn, sent me to physical therapy. After working with me for a few weeks, the PT told me that we really needed images. He thought some of my symptoms pointed towards a schwannoma, but those were rare and to be honest, I wasn’t suffering from some of the tale tell symptoms.

The MRI was ordered, and I really thought we would find out that I had a pinched nerve – probably from something that had slipped out of alignment. But it wasn’t going to be that simple. It was going to be something called a schwannoma… there was that word again.

I went home and tried to google it. I wanted every bit of information I could find. So I suppose this blog is going to become a way for me to sort and process the information that I find in a way that can help me make the very important decisions that I am going to have to make in the coming weeks regarding treatment.

If you are interested, here is a picture of the culprit.