'Pain is my constant companion': One Angeleno's pain diary
This story was produced as a project for USC Annenberg's Center for Health Journalism California Fellowship.
Other stories in the series include:
By Michelle Faust and Kate Romero
More than 25 million Americans experience pain every day, according to the National Institutes of Health. That experience is often hidden.
Over the course of a week in March, Los Angeles stand-up comic and life coach Kate Romero opened up to KPCC about the pain she feels from degenerative disc disease and fibromyalgia. Behind the jokes and the stories, her video and written diaries reveal the struggles and the triumphs of dealing with chronic pain.
Follow along, as we share new entries every day this week.
DAY 1: AVOIDING OPIOIDS
Highest reported pain level: 9 out of 10
Treatment: TENS, two Tylenol, stretching
When I woke up today, the pain was traveling up my spine to my head. I sat in meditation to assess the level of pain. It was a growing solid 8.
The pain is my constant companion. Some days it is able to take a course correction, and some days it isn’t. Today, it didn’t.
At lunch, I was at KPCC. I was extremely uncomfortable in my chair. I excused myself to the lady’s room to stretch and see if that would help. I took two Tylenol.
At bedtime, the pain was at a 9 after using my TENS (transcutaneous electrical nerve stimulation) unit all day. I kept the TENS unit pads on my back under my clothes and went to see a movie with my husband.
Romero's pain management doctor prescribed her opioids, until she quit taking them last June.
Now she uses a number of different alternatives to avoid using opioid pain killers.
Opioids are addictive. Generally, the Centers for Disease Control and Prevention recommend that people only take opioids for three days after an injury or surgery that causes acute pain. The CDC offers guidelines for prescribers when they do resort to opioids for chronic pain management.
“What the studies have consistently shown us is that taking opioids for chronic pain is not good and in the long run will create more problems than it solves," said Dr. Gary Tsai, medical director and science officer of the Substance Abuse Prevention and Control.
Aside from the risk of becoming addicted to opioid pain killers, long-term use of the drugs can cause damage to internal organs. Doctors warn of the change of overdose, but opioids can harm the cardiovascular, respiratory, gastrointestinal, among other systems.
DAY 2: EXERCISE HELPS
Highest reported pain level: 10 out of 10
Treatment: three Tylenol, exercise, heat, ice
"I woke up with less pain at about a 7 level. After being up for an hour, it raised to a level 9 after an hour or so of gravity. I powered through everything today with a very high pain level.
Once it reaches a 9 or 10, it is very hard to get control of it. I took one Tylenol rather than 2 because I have a concern about what regular use may do to my liver.
I was on my feet longer than usual today and I really feel it now at bedtime. My pain is at a 10 to about a 12. I used the Jacuzzi at our gym today after a light workout and got some sun. I felt somewhat better...about an 8. That’s when I started cooking a meal and prepping veggies and fruit for the week. That completely wiped me out.
In my PJ's and in bed by 8 p.m. with ice packs for my upper and lower back. I took another Tylenol. I hope to get some meaningful and uninterrupted rest tonight. Fibromyalgia tends to hijack my REM sleep.
Speak with you tomorrow. Sweet dreams. (Pain level a solid 10 as I sign off.)"
One method Romero uses to treat her chronic pain is exercise. While you might not feel like working out when you’re in pain, a number of studies support exercise’s therapeutic value. The Centers for Disease Control and Prevention and the National Institutes of Health both endorse exercise as a way to deal with pain. And the National Institute on Aging points out that inactivity can exacerbate both acute and chronic pain.
But don’t overdo it; moderation is the key, because an exercise injury could leave you in more pain than when you started.
For Romero, her workouts are intended to strengthen one source of her pain: her back. Research also points to the weight loss that might come with exercise as helping with some people’s pain. In Romero’s case, exercise could also help her fibromyalgia.
DAY 3: THERAPY
Highest reported pain level: 6 out of 10
Treatment: one Tylenol, TENS, ice
"I woke up feeling very sore from the light workout at the gym yesterday which is a pain I don’t mind because it says I worked my muscles. The fibromyalgia attack I was under seems to be subsiding a bit. Pain level 6 this morning.
I have a Doctor’s appointment at 2 p.m. and will be discussing pain levels.
I am also actively seeking a Therapist for talk therapy to see if I can unpack more of my feelings and therefore alleviate some of the pain that is somatic. I am also pursuing a new Pain Management Doctor and have 2 referrals from the KPCC luncheon Dr. Andrew Germanovich from Jill Replogle-Health Reporter and Dr. Christopher Charbonnet referred by luncheon participant Hank Etess.
I was a bit desensitized about the pain I feel before the KPCC Luncheon. It is different for me to pay so much attention to it because I had become accustomed to doing my best to ignore it. I am becoming fully sensitized to it maybe for the very first time. Was very tired by 8 p.m. again. So, I made the video diary and went to bed to lay on ice packs and took a Tylenol...and used the TENS (transcutaneous electrical nerve stimulation) unit while watching TV."
Chronic pain often requires multiple treatment approaches. Romero uses exercise, heat, ice, acetaminophen, meditation and stretching to hold her chronic pain from degenerative disc disease and fibromyalgia at bay. In today’s diary, she says she’s also seeking out talk therapy.
“To live a life of meaning—and a productive life as you define it—with chronic pain requires more than just a medication. It requires, oftentimes, a psychosocial and a physical intervention,” said Adam Hirsh, associate professor of psychology at Indiana University-Purdue University Indianapolis.
[There was no diary entry for Day 4.]
DAY 5: POV ON PAIN
Highest reported pain level: ignored pain
Treatment: Ice packs, Tylenol 3
"I woke up excited about the day and didn’t give the pain as much attention. When I am doing what I love I tend to be able to power through a bit more easily.
I took Tylenol throughout the day to help with a bad headache I had due to neck pain. All in all, I love days like this when I get to contribute to story around town.
I notice that I do my best to act “as if” I am not in pain, and sometimes I am convincing, and other times not so much. I will say this...when I was taking opioids, I felt just as much pain because they had stopped working for me and I refused to take a higher dose which is why I gave them up permanently on June 1, 2017. For St. Patty’s Day, I had a glass of wine with my husband after we were both in for the evening. I used some ice packs and slept well after a Tylenol 3."
Every person experiences pain differently. Today, Romero made the choice to ignore her pain, but that doesn’t mean she didn’t feel it. Although she doesn’t say so, this could be a learned coping mechanism.
“Pain exists in a social context and it exists in a cultural context,” said Adam Hirsh, pain researcher and associate professor of psychology at Indiana University-Purdue University Indianapolis.
Culture and family upbringing can influence the way you interpret what pain means and the best ways to cope with it.
“Americans probably don’t have more pain than the rest of the world, but Americans probably respond to pain differently,” said Dr. Gary Tsai, medical director of substance abuse prevention and control at the L.A. County Department of Public Health.
As evidence for this, Tsai points to the fact that the U.S. consumes more opioid painkillers than other countries. Furthermore, some experts say Latinos and Asian-Americans are more likely to turn to alternatives to Western medicine over taking pills.
DAY 6: PAIN AND EMOTIONS
Highest reported pain level: ignored pain
Treatment: Tylenol PM, TENS
"I woke up early and decided to snuggle with my husband and our two furry boys (pets) for a while on this lazy Sunday morning. It was wonderful to have that time together. We got up and had breakfast of tangerines, bananas with peanut butter on whole grain muffins with black coffee...it’s our usual.
Afterward, we did a couple of my self-tapes before my husband went to work. It was so much fun. I worked some pretty long hours on my computer which tends to make me feel as though I am turning to stone and stretching helps a lot when I can remember to do it.
I wanted to go for a walk and was conserving my energy to clean the house instead. It’s hard to manage both. If I do, I tend to get sidelined for a few days and need the TENS unit. After cleaning, I made dinner and am now pooped. Going to bed. See you tomorrow."
In Romero’s video diary, she mentions a link between her emotions and pain. Her observation is astute, and one that researchers are trying to understand better. People experience pain both physically and emotionally, in similar parts of the brain.
Addressing emotional distress related to physical pain can reduce both the pain and the psychological turmoil. There’s also evidence that mind-body practices like meditation and yoga are effective in pain treatment.
DAY 7: PAIN AND EMOTIONS
Highest reported pain level: Severe
Treatment: therapy, heat and ice
"I awoke in pain with a searing burning at bra level between my shoulders. This has always been a place of contention and flare ups that effects both of my arms and hands. My arms feel heavy and my hands feel swollen and tingly even though they are normal when you look at them.
I was excited and came right to my computer to prep for a call with the renowned Clinical Psychologist Dr. Ramani Durvasula. We chatted for the better part of an hour on the topic of being raised by a narcissist parent. During this call, I felt no pain. After the call, I noticed the pain slowly return over the following 2 hours.
Being this is our final day for the pain journal, I will let you know that I was in at least this much pain while taking opioids for years with the addition of foggy sleepiness. My quality of life is so much better without the opioids in my system. With the meds, it was hard to ever feel joy due to the stigma and side effects of taking them. Today, even though I suffer a great deal every day from degenerative disc disease, my quality of life is superior to that of my opioid days.
I have an audition this afternoon with a favorite casting person, and a well-known director where I get to play a mean boss (where I get to channel some of this back pain) for a music video by one of our favorite music groups called Marshmello.
I plan to get in the shower next and let the hot water fall on my trigger points for a bit in the hope that that will reset my pain threshold back to tolerable.
Wrapping up the pain diary today. I slept on ice packs and stretched. Felt better this morning. Took a lovely walk for the first time in a few days that felt great."
On the last day of her pain diary, Romero went to an audition where she had to dance in high heels while in excruciating pain. No one knew how she was feeling but her.
One of the reasons pain is so tricky to treat is because it’s invisible to everyone but the person who’s experiencing it.
In the mid-1990s, the idea of treating pain as a “fifth vital sign” began to take hold in the medical community. Opioid painkillers, which were being aggressively marketed at the time, seemed like an easy and effective solution to the pressure on doctors to treat pain.
Now, researchers are trying to find an objective way to measure pain, which might help doctors avoid overprescribing painkillers. One area experts are exploring is the use of brain imaging to diagnose chronic pain.
The research is still in its early stages, but already there are ethical questions. Could brain imaging be used as a pain lie detector? A task force of the International Association for the Study of Pain is looking into such issues in anticipation of a future in which pain is no longer solely subjective.
[This story was originally published by KPCC.]