Keith Grzelak, right, was diagnosed two years ago with complex regional pain syndrome, or CRPS — a debilitating chronic pain condition. He has established an online fundraiser to help pay for treatments not covered by insurance. Grzelak is pictured with his 11-year-old-son, for whom he cares at home when not attending to his own illness. (Submitted photo)
When the pain doesn’t go away
- Published: November 29, 2024
Physical pain is an inevitable part of life, and it serves as a way for the body to indicate injury or illness. For most of us, it’s an intermittent state — one to be expected, but to be borne temporarily.
For some, however, pain is a minute-by-minute reality, a hand shaping both experience and perception.
This is true for 42-year-old local resident Keith Grzelak, who was diagnosed two years ago with complex regional pain syndrome, or CRPS. Rare, little researched and little understood, CRPS is routinely described as one of the most painful chronic conditions known to medicine. As yet, its causes are unknown, and no cure has been found.
Grzelak has established a GoFundMe in order to help fund treatment for his condition.
The News spoke with Grzelak last week at the Emporium. Though he appeared as relaxed as anyone else in the local coffee shop, with his right foot — the locus of his CRPS — resting on a chair, he said his pain at the moment was “probably a seven or eight” out of 10.
“Whatever you look or sound like on a regular basis, people start to associate that with your normal — we don’t associate normal with being in pain,” Grzelak said. “But even sitting here, it’s hard.”
CRPS is a kind of “invisible” illness; since its major symptom is ongoing pain, it can be difficult for others, including physicians, to perceive and understand how it affects those who live with it. What is understood is that CRPS is often precipitated by minor injury or a surgical procedure, and that the affected person’s body experiences an ongoing pain response incommensurate with the severity of the injury or surgery.
Grzelak first began experiencing CRPS symptoms after a fairly routine orthopedic surgery on his right foot in late 2020. He said the surgical wound on his foot didn’t initially heal properly, which he attributed in part to his Ehlers Danlos Syndrome — a condition that can prolong wound healing and make suturing difficult. After a second suture was applied, Grzelak was told by doctors that, despite the pain he was feeling, he could go ahead and walk on the foot. Grzelak listened to his doctors — but the foot still didn’t heal.
“I had this big open wound on top, and I was bedridden almost six months,” he said.
It took three skin graft procedures before Grzelak’s foot healed. He said he began making some strides in recovery with physical therapy, but over the months after his initial surgery, his pain did not go away, and had increased in intensity. It wasn’t until about a year and a half after his surgery that a doctor first mentioned the possibility of CRPS.
“I had never heard of CRPS before, but I now know that it’s all about early diagnosis and aggressive treatment — the number-one problem is that people don’t get diagnosed,” he said. “Surgery is the second leading cause of CRPS, but I wasn’t told about that risk, and if I had been, I wouldn’t have had the surgery.”
The sensation of CRPS is different depending on the person. Grzelak likened his own pain to a feeling of extreme swelling and pressure — as though his foot were being continually crushed.
“I’ve described it as trying to walk as if my foot wasn’t there — instead, there’s a block of wood there that doesn’t bend in any direction,” he said. “And that’s what walking on it feels like, except it’s not only cumbersome, clunky, awkward, it’s also excruciating.”
He added: “It’s too bad more people don’t know about it and it’s not researched more, but spreading awareness is probably the first step.”
CRPS is considered a multifactorial condition, in that researchers believe it likely stems from a variety of factors, including neurology, immune response and possibly genetics. A number of treatments are used to address CRPS: nerve therapies and surgical nerve blocks, spinal cord stimulators and ketamine infusions and other pain regulators. Grzelak has undergone all of these treatments; some, like pain medication, have helped dull the pain temporarily. Others have either not helped or have worsened the condition.
Grzelak is in the late stages of CRPS, meaning that his right foot has begun to stiffen and is essentially no longer a working limb. He began using forearm crutches to help him walk this summer, and recently purchased a mobility scooter — mostly, he said, so he could accompany his 11-year-old son on his walks to school at Mills Lawn.
“I realized it had been three-and-a-half years since I’d walked my son to school,” he said. “I don’t want to miss the rest of that time I have with him.”
For many folks with late-stage CRPS, the next treatment option on the table after all others have failed is the most dramatic — amputation. Grzelak said he’s reached the point in his CRPS journey where he’s considering amputation, though not without a certain amount of trepidation. Amputation, he said, is only effective in curbing the pain of CRPS in a lasting way in about 40% of patients.
His doctors require trying one final procedure before moving ahead with amputation; the procedure, scheduled for December, will sever the tibial nerve in his right foot.
“I won’t have feeling in the bottom of my foot ever again, but I’ll still have use of the foot,” Grzelak said of the procedure.
Because his CRPS has begun to spread higher up his right leg and into his left leg, Grzelak said he worries that amputation won’t fully address the condition. He was recently alerted by a friend to exosome therapy, an emerging treatment which has helped some people with CRPS.
Much less invasive than surgical procedures, exosome therapy requires intermittent injection of stem-cell-derived exosomes — microscopic, extracellular particles produced by the body that play a role in communicating between cells, including in healing processes surrounding nerve function.
Because it hasn’t yet been widely studied, however, exosome therapy is not covered by medical insurance. Grzelak said he established the GoFundMe online fundraiser to get help with paying for the treatments, which cost around $3,000 per injection.
“People have really been showing up to help — I’ve been amazed,” he said. “I was gifted $5,000 by one of my good friends in town, out of nowhere.”
Grzelak had his first exosome therapy injection this month, administered by Dr. Jay Joshi of National Pain Centers. How many more treatments he’s able to undergo, he said, will depend on how much money he’s able to raise; at press time, the GoFundMe had raised just under $7,500.
“I have to do as many [injections] as I can to give this the best chance possible,” Grzelak said. “For some people, it fixes things, and if nothing else, I think it’s going to at least help keep things from spreading even more — because when you amputate with CRPS, you want to go above the line of any of the symptoms.”
In the meantime, Grzelak said his day-to-day life is devoted to caring for his son — his wife, Thea, works outside the home — and to living through the pain. He noted that, aside from the physical limitations CRPS presents, it also brings cognitive and mental health challenges with it.
“Pain is your body’s way of telling your brain there’s danger — it’s the beginning of your fight or flight,” he said. “With CRPS, it’s always on a loop — it does not go away. It messes with your cognitive abilities. The worst thing about this disease is that it won’t kill you.”
Grzelak said that, as a person who tends to cope with mental health through physical activity, being limited in what he can physically do because of CRPS has made it difficult to find outlets to regain a “sense of equilibrium.” A skilled bowyer — that is, a crafter of bows for archery — he shoots arrows in his garage whenever he can.
“I’m going to try to keep swimming, workout a little bit in the basement — but people don’t know how tiring pain is,” he said. “Imagine working on your feet for an eight-hour day on a concrete floor, and you come home and you sit down and your legs are aching — and you realize that you forgot to grab the TV remote. You really don’t want to get up and get it, right? Every time I think about doing anything, I’m faced with that level of, ‘Oh, this is gonna hurt.’”
Beyond adjusting physically to a life of chronic pain, Grzelak said it’s been a challenge moving through a world where that pain is often unrecognized by others. People respond in different ways — some with advice, others with silver-lining hope that he often doesn’t share. Some, he said, just listen — an approach he said he appreciates the most.
“With CRPS, it feels like everyone around you is walking by, living their life — but you’re not really living,” he said. “The best moments are when people ask me how I’m doing and try to empathize. I’m stuck in pain, and when people acknowledge that, it means a lot.”
The GoFundMe page in support of Grzelak’s treatment can be found at http://www.gofundme.com/f/support-keiths-journey-to-overcome-crps-pain.
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