Dealing with CRPS unnerving for Shawano woman

A simple bicycle ride in 2020 triggered the start of a lifetime of pain for Shawano resident Sarah Steinbach, who has since learned that she has complex regional pain syndrome (CRPS).

However, instead of letting the pain overtake her, Steinbach is turning that pain into awareness about an issue that few people are aware of. To that end, she held her first CRPS awareness walk June 26 at Heritage Park, spreading the word at the Shawano Farmers Market and other downtown areas about a rare condition that affects fewer than 200,000 people in the United States per year.

CRPS is when someone has chronic arm or leg pain developing after an injury, surgery, stroke or heart attack. What makes the pain CRPS is when it feels greater than someone would expect from the injury that caused it. It can last for years, and for many, it can last a lifetime.

For Steinbach, the CRPS started on that ride July 7, 2020, with her son, Isaac, and her golden retriever, Bennet. The trio stopped for a drink of cold water when a blue butterfly fluttered in front of them, and Bennet wanted to chase the butterfly, jerking the leash enough to cause Steinbach to fall off her bike. She immediately felt an intense burning pain in her elbow, and she knew she needed to get medical care for it, a challenge at the time due to the coronavirus pandemic causing restrictions at health care facilities.

“It took about four months. I’d seen three different specialists and all they found at first was a bone bruise, marrow deep,” Steinbach said. “I had no idea that was even a thing, but I kept saying that it hurts too much for it to be just a bone bruise.”

The doctors recommended giving it six more weeks, but in the meantime, Steinbach went to another pain specialist, who immediately saw that she had CRPS and prescribed her oral nerve medication. The specialist had her come into his office in December 2020 for a trial spinal cord stimulator, which was expected to relieve the debilitating pain she had experienced for months, although there’s nothing that can cure it.

“I got a lot of relief,” Steinbach said, noting that she had her permanent spinal cord stimulator implanted in January of this year. “The purpose of the spinal cord stimulator is to change the brain waves that my body is sending the pain signals. It’s actually a symphanic nervous system disease and autoimmune, so my body is attacking itself, and it causes the pain.”

CRPS is sometimes referred to as the “suicide disease,” according to Steinbach, because one out of two people with the condition opts to take their own life because the pain is so great.

“CRPS is the most painful condition known to humans, and it actually spreads through your nervous system,” Steinbach said, noting that medical experts show CRPS creates higher pain than childbirth or amputation. “It started in my elbow and went to my wrist, my hand, went up to my shoulder and mid-shoulder. In mid-March, I had a test confirming it has spread to my leg.”

With the CRPS, Steinbach has lost a lot of the function in her arm and is uncertain how she will be able to work again, noting she did office work before her injury with a lot of typing, and doing the repetitive motion now would just increase her pain.

When asked what has allowed her to endure, Steinbach said having a support system made all the difference. Her family has been supportive, and Steinbach also found a CRPS support group that covers much of northeast Wisconsin. Not even the emotional support can cripple the physical pain, though, she said.

“There are nights when you wish to the stars that the pain would subside a little,” Steinbach said. “Then the break of dawn comes. We warriors get excited about morning because we’ve made it through another day.”

The walk continued in spite of the rainy weather. For some people suffering with CRPS, a simple touch can cause pain, even from a drop of moisture.

Steinbach and her support group are trying to communicate with doctors and nurses about CRPS. It is so uncommon that many medical professionals are not aware of its existence and, therefore, unable to diagnose it when a patient comes in with symptoms.

“You just can’t believe that medical professionals would just dismiss your symptoms and how we feel and how it affects us,” Steinbach said. “Every day is different. You don’t know if you’re going to be able to get out of bed, if you’re going to be stiff, if you’re going to work, how much pain you have.”

The money raised from the weekend’s awareness walk will go into a fund to help others dealing with CRPS. Steinbach said she knows one person with CRPS who is living off of Social Security and cannot afford a cane.

“I am so thankful to be in a community that loves me,” Steinbach said. “I have been here, and my family has been here, for a long time, so I know that I will get through this disease OK.”

lpulaski@newmedia-wi.com