Four things I learned in my pain management program
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Pain was not my first Parkinson’s symptom, in hindsight, but it is what spurred me to seek medical attention. I’ve since read that 10% of “Parkies” first present with pain.
At 37, I strained a hip flexor on a summer hike. Within six months, I also had sacroiliac joint pain, where the spine meets the pelvis. Then my shoulder started to hurt, too. My health care providers chased the pain.
No one recognized the muscle rigidity I was developing in my shoulder as characteristic of Parkinson’s. No one seriously considered that the right side of my lower body hurt because it was compensating for what I now know was the Parkinson’s-related subtle but present abnormal movement that was developing on my left side.
Instead, roughly every six months I was referred to a new specialist and a new physical therapist.
Before I was finally sent to neurologist, almost six years after that summer hike, I:
- Saw numerous orthopedic specialists.
- Worked with 10 physical therapists.
- Had x-rays, a steroid injection and five rounds of prolotherapy (injections designed to stimulate the body’s healing response).
- Had 10 MRIs—both hips, lower spine, shoulder, brain. Several body parts were scanned twice.
- Had two EMGs.
- Received regular B-12 shots.
- Was tested multiple times for rheumatoid arthritis.
- Was advised to eat a gluten-free diet.
- Was hospitalized for a skin infection.
- Tried a chiropractor, acupuncture, rolfing, massage, and a naturopath.
- Went from walking five miles a day to literally unable to walk around the block.
About six months before my young-onset Parkinson’s diagnosis, I took medical leave from my full-time job to complete a three-week outpatient pain management program. I had been told pain management was a last resort and wouldn’t help; it took me a year to get the referral.
The pain management program was one of the most helpful things I did. My program focused on non-surgical, non-narcotic approaches. From 7 a.m. to 4 p.m. Monday through Friday I worked with a team that included a physician, nurse, psychologist, occupational therapist, physical therapist, occupational counselor, and biofeedback specialist.
We used the book Managing Pain Before It Manages You by Margaret A. Caudill.
The top four things I learned:
1. Track your symptoms.
I was advised to record symptoms three times a day, including:
- What were you doing when you took your reading?
- What are your symptoms?
- Severity of symptoms on a scale of 1-10?
- Quality of symptoms? For example, is the pain burning, stabbing, throbbing, aching, etc.?
- What helps or hinders? Tip: Experiment here. I was advised to ice but I learned heat helps me more.
- What are you eating? Any correlations to your symptoms?
- How much are you sleeping? What is the quality of your sleep?
- How much are you moving? What kind of exercise or movement are you doing?
- What medication are you taking? How much and how often?
- What is your emotional reaction to your symptoms? This was new for me, and at the time I wasn’t at all honest with myself or others about how much my symptoms were affecting my life. (This is a work in progress. LOL.)
2. Move.
With help from physical and occupational therapists, I learned to move within my limitations.
For example, at the time I couldn’t do a set of squats—the repetitive up and down motion was too painful, but I could do a wall squat: lean against a wall, squat, and hold.
Similarly, pain prevented me from doing a sit-up but I learned to work my core while keeping my back flat—and I think that year I had the flattest abs I’ve ever had.
I left the pain management program with a goal of walking a mile. Since then I’ve done multiple 30-mile Pacific Crest Trail section hikes with a Parkinson’s group.
3. Meditate.
The mind-body connection is amazing. Tips: I recommend the book Full Catastrophe Living, and the Insight Timer app. I’d also say start with 1 minute and be very patient with yourself.
4. Be consistent.
I was advised to be consistent for 8 weeks. I noticed a difference at 10 weeks.
Overall, I learned I do have control over my pain. I was ending every work day with a pain level of 7 or 8 and spending my evenings not being able to do anything other than lie on the couch.
Am I pain free? No. But today, with my accurate Parkinson’ diagnosis and treatment plan, combined with the pain management strategies I learned, most days my pain level is 2 or less. It’s rarely above a 4, and when it elevates I know how to reduce it.