After trying endless treatments for low back pain, I finally found one that helped.
One of the worst parts of my chronic pain is my low back pain.
While I take infusions for my PsA and pain medications for the accompanying pain, none of it fully addresses what I experience with my back pain. I have done physical therapy, massage, pool therapy, and everything I could think of to treat my back pain to no avail.
My back pain is constant. It’s a pressure that builds to aching to stabbing pain to searing pain. It travels down my right leg with numbness, tingling, and discomfort, then down my left, until I get weakness in both legs and practically collapse.
Fortunately, I’ve never been in a situation where I completely collapsed before being able to sit down to get some relief. Standing for long periods or walking distances causes the worst pain for me.
There are several ways people can tell I’m in pain. When I’m standing, I constantly sway back and forth. If I have to stand still, it’s the only way I can alleviate some of the pain. If I don’t have to stand still but can’t sit, I’ll walk. Whether it’s productive walking or just pacing back and forth, moving helps.
And if I’m in such bad pain I can’t get out of bed, I’m not just lying still. I’m probably sitting straight up and rocking forward and back.
I look a little “crazy” if I’m honest. Picture a crime TV show where they are interviewing someone unwell. That person is rocking forward and back constantly, mumbling to themselves, face scrunched up as if in pain. That’s me.
There’s never been a diagnosed cause for my back pain. That’s the worst part. If they don’t know exactly what’s wrong, they can’t fix it.
The most relief I ever got was when I was living in Alaska and massage was covered under my insurance. I got massages every week, and that really helped.
After I was diagnosed with psoriatic arthritis, it got so much worse, and doctors started to really take me seriously.
I had always had hip pain, too, so they thought that might be the cause of my back pain. I got my right sacroiliac joint fused, not only to fix my SI joint dysfunction but also in hopes it would fix my back pain. It didn’t.
Other than massage, one of the only things that helped was biofeedback and progressive muscle relaxation. Both are essentially focusing on your breathing and allowing your muscles to enter a state of relaxation.
Heat and stim pads helped too. Stim pads or stimulation are essentially pads that you place on your back and hook up to a device that sends small shock waves to the pads, which cause the muscles to relax.
I’ve done everything to treat my back pain, and finally, an orthopedic surgeon I saw recommended I ask my pain clinic about a spinal stimulator.
A spinal stimulator is a medical device implanted to treat severe back and leg pain.
It’s like the stim pads, but it’s internal. It involves surgically implanting electrical leads into the epidural space of the spine, which is between the dura mater (the outer membrane surrounding the spinal cord) and the ligaments inside the spine.
The leads are connected to a battery and send electrical pulses into the spine that translate the pain signals to the brain into different types of signals. Older models would turn those signals into feelings of tingling, but newer models simply cut the signals out so you don’t feel pain or tingling.
I went through the process of getting a spinal stimulator. The preoperation decision-making process included getting a series of (unsuccessful) epidurals to see if the pain could be managed more conservatively and a psychological evaluation to ensure I was emotionally and mentally prepared for such a significant procedure and lifestyle change.
The process also involved a trial stimulator to test if it would reduce my pain before having the permanent stimulator implanted.
Finally, I had the device implanted. Two wide incisions were perpendicular to each other on my back. One was where the leads were implanted into my spine, and the other was where the battery was implanted.
Unfortunately, doctors tend to have difficulty controlling my pain post-op whenever I have surgery, probably because it triggers a flare of my fibromyalgia which just doubles down on whatever post-op pain I’m experiencing. When I came out of anesthesia, I was rolling back and forth and moving my legs constantly. I was in extreme pain. They treated my pain by IV.
By the time I left the hospital, I could sit up and eat a graham cracker. I was tolerating my pain well.
That lasted about a day. I was not given my surgeon’s instructions when I left the hospital, which included my prescription for pain medicine. As a result, I went one day and one night without the extra medication to manage my post-op pain.
The night after the surgery, I was in so much pain I thought I was going to have to go to the ER. Instead, I called my dad.
My dad has been through it all. He’s had many major surgeries. He knows pain. He talked me through the pain, helped me take an NSAID, and got a heating pad on. I didn’t end up going to the hospital that night.
Even once I got my post-op pain meds, I still had a lot of post-op pain for about a week and a half. But by the end of the second week, I felt well enough that I could differentiate my chronic back pain from my post-op pain and felt comfortable adjusting the settings on the spinal stimulator.
At my 1-month post-op appointment, I got my staples out and learned how to charge and adjust my stimulator.
I have to turn it off for surgeries, MRIs, and X-rays. I wear a charger that sits over my battery, and once a day, I need to charge it. In about 10 years, I’ll have to have surgery again to put a new battery in, but so far, I am enjoying having the stimulator.
I wish I had known this earlier. There were times when I’d be rocking back and forth, tears running down my face, just feeling hopeless and overwhelmed. That’s why I wanted to write this article and tell my story.
I am already experiencing pain relief at about 70%, and for me, that is extraordinary. I thought that I might have to cope with this severe pain my entire life, but as it turns out, there is hope.
Medically reviewed on August 29, 2023
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