Each individual affected by Ankylosing Spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration for anybody in a similar situation. We’d love your story as well! Send it to us at firstname.lastname@example.org
By Batya Bilmes Lemler
Editor’s Note: With this piece we are continuing our exploration of chronic pain and use of pain medications. There are numerous perspectives and experiences in regard to managing pain, and we want to ensure your voice is heard in this dialogue. If you would like to share your experience or perspective, please send it to us. We welcome and seek your thoughts.
“How can I stop using opioids while I still have chronic pain? Sure, the withdrawal is horrible and we always hear about the joy of making it to the other side, but this is different. I’m not addicted to a high. I use these for pain. But now I need them every day just to function. Great. If I make it to the other side, I’ll still be in pain. Now, what the hell am I supposed to do?”…
my journal - 9/14/2013
I have ankylosing spondylitis. Like so many others, I noticed symptoms at age 19, but wasn’t diagnosed until age 38 (I’m now 56). I live with chronic pain; inflammation, iritis, IBS, cardiac issues, fibromyalgia and long term complications from four of the five TNF inhibitors. Fusion has limited my range of motion, and fatigue, when it hits, often commands me to stay put. But a few years ago, it became apparent that my biggest challenge had become the narcotics I was using to treat the pain.
It was the 1990s and pain had just been recognized as the fifth vital sign. Physicians began to ask us to rate our pain from 1-10 and pain was aggressively treated. The number of opioid prescriptions rose and those in chronic pain were finally being heard and successfully treated.
Opioids broke the pain cycle. They made unbearable pain, bearable. In fact, they worked so well that I was able to stretch and strengthen, maintaining some spinal range of motion. I felt good on opioids, until I didn’t.
Or was it a success? In my case the answer is yes and no. Opioids broke the pain cycle. They made unbearable pain, bearable. In fact, they worked so well that I was able to stretch and strengthen, maintaining some spinal range of motion. I felt good on opioids, until I didn’t.
While in my 20s, a diagnosis of endometriosis was blamed for my lower back pain. In 1994, at age 34, I had a hysterectomy. I had no children and my problem wasn’t endometriosis. The pain continued; this time it was blamed on scar tissue and following several additional surgeries, I found myself using opioids. It was after one of the surgeries that I developed my first bout of iritis. That led to a diagnosis of ankylosing spondylitis in 1998.
Up until that time, I was a successful businesswoman. The pain and stiffness were bad but I was still able to meet my commitments. Meetings, travel, presentations, negotiations; I kept going, by using painkillers.
The fentanyl numbed my pain, but it also seemed to numb my spirit. In 2003 I tried to discontinue it and ended up in the ER, severely dehydrated, malnourished and in withdrawal.
By 2000, I had been on so many narcotics, I realized it was time to go to a pain management clinic to investigate available alternatives. The pain management doc warned me about pain cycles. “We need to avoid pain,” he’d say. I was prescribed daily doses of fentanyl patches and suckers. For a while, it worked. The fentanyl numbed my pain, but it also seemed to numb my spirit. In 2003 I tried to discontinue it and ended up in the ER, severely dehydrated, malnourished and in withdrawal. I was given fluids, fentanyl and discharged. Three more times that Spring I went to the ER, with the same results. By this time, I had weaned myself down to a lower, albeit large, dose of 100 mcg/day of fentanyl.
The fifth time I tried to stop, I went to another ER. This time I was admitted and soon the pain management group was in my room, offering their help. I was placed on methadone and within months, I was off both the fentanyl and methadone. I was then placed on daily morphine tablets to manage my pain.
A decade later, I realized that my new problem had become the morphine. Constipation, forgetfulness, insomnia, drowsiness, needing pills with me all the time, that look I’d see on a doctor’s face when he’d learn of my opioid use, the weaning up and down, the GI symptoms; I was just tired of it. I needed an alternative.
What if I stopped the opioids? Will some breathing technique really help? I didn’t know, but I was sure that the path I was on was no longer working for me.
It was during a consultation with Integrative Medicine at Mayo Clinic, Phoenix, AZ that I was introduced to relaxation techniques, herbal remedies, breathing techniques, yoga, mindfulness, acupuncture and anti-inflammatory diets. Some topics were new to me, others a refresher. But, there were alternatives out there. I wondered if they’d work for me. What if I stopped the opioids? Will some breathing technique really help? I didn’t know, but I was sure that the path I was on was no longer working for me. I weaned myself down to a low dose of morphine, then prepared to stop.
Although the doctors congratulated me on “virtually ceasing use of narcotics,” I knew it was not over. That last step is so difficult.
In March of 2016, I stopped using opioids.
I had some withdrawal experience under my belt, so I knew what to expect. I also kept my Primary Care Physician informed and in the loop. Still, it didn’t make the process any easier. Below I’ve listed some symptoms I experienced followed by what helped me:
These symptoms lasted from three weeks to four months.
As soon as the nausea subsided, I began taking the suggested alternative supplements in an effort to regain my health, calm my gut, and help manage inflammation. I also implemented many relaxation techniques. Those listed below work for me:
Such as Turmeric, Curcumin, Vitamin D3, Zyflamend, and Boswellia among others.
When someone is upset, they’re often encouraged to take a deep breath. This is based on science, so I tried it. Much to my own amazement, paced deep breathing reduced my blood pressure, pulse, and even reduced pain. This was the one technique I used while in withdrawal and it helped, especially when my pulse began to race and the pain became unbearable. The idea is to breathe in slowly, hold, then slowly release your breath. Suggested timing translates to 5-6 breaths a minute. I use the free app by Paced Breathing Trex LLC. You can plug in your own times or use their default. It’s a good guide and I’ve come to rely on it every day, much like I did my pain meds.
Excellent method to strengthen body, enhance balance and clear the mind.
Initially this technique of focusing on the present sounded a little “woo woo” to me but it works. When I’m laughing with a friend, at that moment, I rarely feel pain. Mindfulness uses the same principle. Focus on the activity. I enjoy gardening and sometimes just trimming a plant puts me in a place far away from the chronic pain. Bread baking works. Or even a walk. If I focus on the outside world, it can sometimes take me away from my inner world of pain.
Based on the principle of the whole body and enabling the energy life force to flow, this technique has been used for centuries. Years ago I used acupuncture with some success and I’ve once again begun treatments. No, there is no pain when acupuncture is done properly.
Although I’d read about anti-inflammatory diets, I had always assumed that my pain was so severe that a simple diet change wouldn’t make a difference. But it did. A gluten test revealed no sensitivity so I keep whole grains in my diet but I’ve eliminated virtually all white processed foods. My diet now mainly consists of whole grains, nuts, veggies, fruits, beans, seafood, tofu and water. When I stay true to this diet, I feel better. Pizza or a bagel is fine once in a while, but a few days of white foods bring on a flare. No, this diet hasn’t made me inflammation free, but I do feel so much better when I follow it.
Pain flares are my biggest challenge. No pills to help. Pain management now requires more time and rest and that’s what I do. Not once, since being off opioids, have I reached for one of the few pills I keep in the house just in case.
It hurts. It burns. There’s sharp pain and often fatigue, but I work through it. Every day that I am able to get out of bed, I stretch and every other day I stretch and strengthen. No impact, I use weights and it’s sometimes grueling, but I carry on. Through all the pain, throughout all the years, I’ve kept this up and my reward is my current range of motion.
The changes I’ve made in 2016, from elimination of opioids to new methods of inflammation management, have made a big difference in my life. It’s almost as if I’ve woken up from a bad dream. I have chronic pain, but after a few months, the chronic pain off the opioids was about the same as when I was on them. Pain flares are my biggest challenge. No pills to help. Pain management now requires more time and rest and that’s what I do. Not once, since being off opioids, have I reached for one of the few pills I keep in the house just in case. It’s as if I’m finally free and I have no desire to be in opioid bondage again. I’ve stopped dancing backwards.
Other posts by Batya Bilmes Lemler
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