Chronic Pain; Part 2 of Post-Sepsis Pain Series

This is the second of a 2-part series on chronic post-sepsis pain. To read part 1, click here.

Chronic pain doesn’t affect a person just physically. Chronic, constant pain can have a strong impact on a person’s life and their ability to live as they wish. Learning how to manage chronic pain can be difficult because everyone reacts to pain in different ways.

Toya Russell is a sepsis survivor who lives with constant pain, but hers is not the result of amputations or anything obvious. She doesn’t know why she has it, but it does make life challenging. For example, the pain in Russell’s inner thigh and knees make even getting dressed difficult. “I cannot lift my left leg over my right to put on my shoes,” she said. “It is a struggle just to tie my shoes or put my socks on. I feel so embarrassed that I have to sit in a chair. Sometimes I have to twist my leg a certain way just so I can get my socks on. And it’s horrible. I never had this issue before.”

And back pain adds an extra layer of frustration. “Sometimes when I go to get up, I’ll just cramp so hard and bad for no reason,” she said. Russell has had magnetic resonance imaging (MRI) scans and computed tomography (CT) scans. Her doctors haven’t been able to find anything specific that might be causing the pain.

Few Healthcare Professionals Seem to Understand Her Chronic Pain

One of Russell’s frustrations lies with the healthcare professionals she encounters who don’t seem to know much about life after sepsis or resulting chronic pain. “Sometimes I feel like they are thinking that I’m just a complainer,” Russell said. “A lot of staff that I’ve talked to, it’s like they don’t know the severity of sepsis. I had severe sepsis. I don’t think that they understand.” Russell remembers this happening even while she was still in the ICU, recalling one nurse saying something about how the pain couldn’t be so bad.

To help manage her pain, Russell relies on ibuprofen and Aleve®. “Moreover, I try other holistic methods like natural herbs, hot showers, and deep tissue massages. I also do physical therapy when I can afford it.”

Pain All Over, Including the Skin

For sepsis survivor Sandra Kleier, post-sepsis pain was everywhere, including her skin. “After being in septic shock, I started having all-over body pain. Just rubbing my skin hurt,” she said. “It was just burning pain – and then all my muscles hurt, and I had nerve pain. It was just all over my neck, my shoulders, my back, my arms, my abdomen, my legs, my hips. I eventually ended up with peripheral neuropathy in my lower legs.” Peripheral neuropathy can cause stinging, intense pain, as well as weakness, most commonly in the hands and feet. Kleier tried various medications, including narcotics, but nothing was effective.

Kleier finally got some pain relief with an intrathecal pain pump in 2019. This pump uses a small catheter inserted near the spinal cord, with the end of the tube attached to a pump that sends pain medication through the catheter into the cerebral spinal fluid (CSF). An anesthesiologist agreed to insert a pain pump, and Kleier said, “That was my saving grace. My pain went from a constant, eight or more, to a three to four. And I really felt like I got my life back.” Kleier also got a spinal cord stimulator for more relief from the peripheral neuropathy pain.

The relief didn’t last though, as Kleier developed horrific back pain last fall traced to an infection, osteomyelitis, and discitis in her spine. “And I had two fractured vertebrae, which compressed my spinal cord,” she explained. Because of the infection and the surgery, Kleier had to have the pain pump removed, but it was finally replaced this past May.

Pain, Pain Perception, and Living

Two people can stub their toe in the same way – one may feel a bit of pain and forget about it, while the other may experience sharp pain that takes a while to go away. This is because no two people experience pain the same way. This is an important takeaway for caregivers and even healthcare professionals who may unknowingly project their feelings about pain on the people they care for.

If you have pain and are having problems expressing it or you feel you aren’t listened to, here are some tips that may help you:

Use a pain intensity scale: Not everyone likes to use a pain intensity scale, but it is a good starting point. The most common one uses 0 to 10 to rate your pain. Zero is no pain and 10 is the most intense ever. Of course, one person’s 3 on the scale may be another’s 6, but the point is consistency, not comparison. If you consistently rate your pain, your caregiver can see if your pain levels are going up or down or staying steady.

Discuss how the pain affects your life: When talking about your pain, give examples of how it affects your life. For example, is the back pain keeping you from lifting your young child? Is your leg pain keeping you from standing at work? Is your arm pain making it impossible for you to get dressed in the morning or do your daily hygiene tasks? Be specific with your examples.

Tell your doctor what you hope to get out of treatment: In some cases, total pain relief won’t happen. But if you live with a consistent 6/10 pain level, maybe your goal is to get to a 2 or 3.

Ask about complementary healthcare providers:  Your doctor’s office or clinic may recommend some trusted acupuncturists, massage therapists, psychologists, and other professionals.

Chronic pain is only one issue that sepsis survivors may experience. You can learn more about post-sepsis syndrome here. You can also join Sepsis Alliance Connect, a virtual support community designed for the millions of people affected by sepsis. Click here to learn more or to sign up.