Community Views: How Chronic Pain Affects Patient Leaders

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Generally, pain that lasts longer than 3 to 6 months is considered chronic pain. It is pain that stretches beyond the expected timeline for typical healing. Chronic pain is common – more than 1 out of 10 people experience it. And it often accompanies chronic illness, adding another layer to the challenges that illness presents.¹

We know that many patient leaders in the Social Health Network (SHN) live with chronic pain, and we believe that when patient leaders share stories and experiences of their chronic pain, it can help others feel less alone. Sometimes it can even help people learn to advocate for themselves and access the care that they need and deserve. So, we recently asked the community on Facebook: “September is Chronic Pain Month. How has chronic pain impacted your life?”

Here is some of what we learned.

Chronic pain leads to empathy

Living with chronic pain gives you greater empathy for others. It allows you to step into their shoes and forge deeper connections. You understand the exhaustion and weariness that comes from daily pain.

“I have developed migraines, which originally were constant for well over a year. Managing that pain gave me insights into what others deal with and left me more aware of just how distracting pain tends to be.”

Pain relief can come in many forms

Over the years, you likely will try different treatments to relieve your pain. You may use various pain relievers. You may work with pain specialists to help manage your symptoms. These treatments may reduce but do not eliminate your pain.

“Well, it’s a daily battle; some days, I’m in more pain than others. I personally use cannabis, and that’s the only thing I have found that ramps the pain down a little.”

“Chronic pain is all-consuming! With my avascular necrosis, I lived on pain meds for years. With psoriatic arthritis, it can come and go. It has made me have to be more organized and self-aware. Always checking in with myself to see how I’m doing and how far I can push myself is key.”

“Chronic pain is a big part of my life. I have EDS, migraines, and degenerative disc disease. I started seeing orthopedics, physical therapists, occupational therapists, and pain management while in the military. I have relied on various pain medications, injections, blocks, ablations, etc., to maintain some sense of movement and life. Pain has prevented many events and limited different movements. I manage it the best I can and try not to let it or anything run my life. Heat is my best friend.”

Physical therapy has mixed results

Physical therapy, chiropractic care, and acupuncture are a few complementary treatments for chronic pain. Research shows that these methods can be effective for some people.1

Several respondents shared their experiences with physical therapy. Some people have found it helpful, but others have not experienced the hoped-for difference.

“I’ve had 2 open abdominal surgeries for a rare vascular disorder called MALS. The 2nd surgery in January was successful, but I’ve developed chronic muscular pain in my back and intercostals (ribs). PT and chiropractor have only helped a little. I hope this will get better with time, but bending/lifting still makes me ache. Sometimes I get really discouraged about it.”

“I have osteoarthritis and osteoporosis. Chronic pain has been part of my life for many years. I recently had physical therapy to strengthen and improve my balance. A wonderful side effect is a reduction in pain.”

Thank you

We appreciate everyone who shared their chronic pain experiences with us. Thank you for being open so we can all learn from each other.

References: Chronic Pain: In Depth. National Institutes of Health. Available at https://www.nccih.nih.gov/health/chronic-pain-in-depth. Accessed 10/12/2022.

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