Post-Sepsis Pain Affects Many Survivors; Part 1

Post-sepsis pain affects many sepsis survivors for weeks, months, and even years after they first became sick with sepsis. Chronic pain in general has always been hard to treat and post-sepsis pain is no different.

Up to 50% of sepsis survivors experience long-term physical and/or psychological effects called post-sepsis syndrome (PSS). One of those issues is chronic post-sepsis pain. A small German study found that among people who had been hospitalized with severe sepsis or septic shock, 56% said they were living with chronic pain rated anywhere from 4 to 10 on a 0/10 pain scale. Zero indicated that there was no pain, and 10 represented the worst possible pain.

In some cases, the cause of the pain, such as an amputation, is clear. But in many people, the pain has no obvious reason. Some pain issues could be related to a similar syndrome called post-intensive care syndrome. A large majority of patients treated in an intensive care unit (ICU) – up to 73% – complained of pain after leaving the hospital.

Finding Pain Relief

When someone has severe chronic pain that affects their quality of life, the search for pain relief can be frustrating. The first step is usually to try to get help from healthcare professionals who practice Western medicine, the type of medical care most of us are used to. But finding pain relief from post-sepsis pain may require thinking outside the box. Luckily, complementary healthcare, like massage therapy and acupuncture, is becoming more available and accepted in the United States. “We are moving away from Chinese medicine as being viewed as an alternative approach,” said Melissa Nolan, a licensed acupuncturist in California. Nolan also uses cupping, herbal medicine, and lifestyle coaching to help her clients. “Unfortunately, it’s usually the last resort for many people, especially depending on where you live. On the west coast, acupuncture is more commonplace, for example.”

Total pain relief may not be realistic for some people, though, and learning how to live with the pain can improve things and have a significant impact on your life, said George Beilin, EdD, a licensed clinical psychologist specializing in chronic pain management and author of two books on chronic pain. By the time patients make an appointment to see a psychologist, they usually have been living with pain for a long time and often have been told by other healthcare professionals that their pain can’t be eased, he added.

Pain Patterns

Acute pain – sudden pain – is a warning sign that something is wrong. It is a protective mechanism. Acute pain can also result from a medical procedure, like surgery, but will go away. But chronic pain doesn’t usually have a readily identifiable cause, like a burn, a pulled muscle, an infected tooth, or other acute pains.

Nolan pointed out that treating chronic pain involves more than treating the actual physical pain. “When people struggle with pain for a while, their body starts to remember these painful patterns,” she explained. “It’s important to address the body on a holistic level, treating the mind, the emotion, the spirit, and the physical altogether.” This holistic approach encourages the healing process.

“Stress is one of the most complicated factors in treating any kind of pathology,” Nolan said. “The more stressed we feel, the more anxiety we feel, the more prolonged our healing process will be. So I encourage people to develop mindful techniques that will also aid in their healing process.”

Limb Loss and Post-Sepsis Pain

Mike St. Onge is a sepsis survivor who lives with the loss of all four limbs after developing sepsis in 2000. Aside from physical issues St. Onge faces, he also lives with frequent post-sepsis pain from the amputations themselves, called phantom pain.

People with limb loss can experience two types of sensations: phantom sensations and phantom pain. Phantom sensations occur when your brain continues to feel sensations from the missing limbs. St. Onge feels this when it feels like one leg is “telescoping back into his upper leg,” he explained. But phantom pain is actual pain that comes from where the limb should be. Phantom pain is challenging to treat, and therapies range from medications and implanted devices to complementary therapies.

Nolan treats some patients who experienced limb loss and there is a variety of approaches she can take aside from acupuncture itself. “You can treat the missing limb by treating the remaining limb on the other side of the body, holding up a mirror to reflect it on the opposite side,” she explained. Mirror therapy tricks the brain into thinking the limb is still there and somehow allows the brain to compensate, lowering the unpleasant sensations or pain levels. Mirror therapy can also be done as part of other treatment plans. But while complementary therapies can be helpful to some people, in St. Onge’s case, they weren’t.

His pain isn’t constant, but it can be very intense when he has it. “It can be very bad in the evening,” St. Onge said. “I tried pain pills, as well as anti-seizure medications, opioids, benzos, and more. Nothing really helped, and the high doses caused unpleasant side effects.” He still takes some medications and said that a low-dose antidepressant helps somewhat.

The Role of Talk Therapy in Post-Sepsis Pain

Many people with chronic pain struggle when someone suggests they speak to a therapist or psychologist about managing the pain. They may believe that by seeking mental healthcare, they are admitting that their pain is “all in their head.” But this is far from the case, said Beilin, the psychologist. Therapy aims to help people learn how to live with the pain if they can’t resolve it. Living with the pain means learning if any triggers may make it worse, coping techniques for when it’s particularly bad, learning that everyone’s perception of pain is different, and accepting that the pain will be part of their life.

One issue that comes out a lot is “catastrophizing” the pain, experiencing the pain and imagining the worst will occur. “The need to reprogram one’s perspective on the cognitive therapeutic perspective [of the pain] is critical,” Beilin explained. But each person needs their own personalized strategy.

“One size doesn’t fit all,” Beilin said. “I can’t necessarily suggest one specific strategy because pain management treatment, especially from a physical perspective, is like a smorgasbord. It’s individual choices, what works the best for them.” Pain management can’t be a one-size-fits all approach, and this includes working with a psychologist. While it can be frustrating, if you don’t feel a connection with a psychologist and their approach, it’s ok to look for other ones until you find one who you trust.

Finding Others Who Understand

Group therapy is another option for people living with post-sepsis pain. Discussing your problems with others who know what it’s like can be helpful and supportive. Other group members may have ideas that you could try. They also may have suggestions for healthcare professionals who work with people who live with chronic pain. If you are interested in finding a chronic pain support group, start by asking your doctor’s office or clinic if they know of any local ones or virtual ones. You could 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.

Click here to read about two other sepsis survivors who live with post-sepsis pain, part 2 of the 2-part pain series.