Join Josh's Fight Against CRPS

Josh is my wonderful husband who has been suffering for over a year from Complex Regional Pain Syndrome (CRPS) – one of the most painful, debilitating conditions known to medical science. I'm reaching out for support as he faces a journey to reclaim a pain-free life.

His story is heart-breaking as we’ve watched him endure relentless pain, suffering, and seeming hopelessness of this cruel neurological condition. It’s not easy to ask for financial help, but we hope that once you read Josh’s story, you’ll understand why we’re reaching out for any donation you might be able to share to help fund his expensive treatment at the Spero Clinic in Fayetteville, Arkansas.

Josh is known for his “BIG” smile and infectious laugh that lights up every room. Through all of this, he continues to remain optimistic, upbeat, enthusiastic, and resilient. I married this amazing man for all these wonderful qualities. His ability to maintain his happy, cheerful, and positive personality inspires me every day.

This past year has been very difficult for us, it’s painful to watch the person I love with all my heart suffer every day and feel helpless. He really misses golfing, traveling, dinners out, happy hours, cannonballs in the pool, and the freedom to move about. Most importantly taking care of me and his family. He has never had to rely so heavily on others, so this has been very difficult for him and humbling. He continues to work and give it his all even in pain to make sure we are taken care of.

After all Josh has been through (relentless pain, multiple drugs, pain blocks, surgery, rehabilitation center/programs and trauma, and the emotional roller-coaster of repeatedly holding out hope only to be disappointed again and again that nothing actually works), it now seems almost too good to dream that this clinic could help Josh, walk again.

What is CRPS?

Complex Regional Pain Syndrome (CRPS) is a rare, chronic neurological disorder affecting the central and peripheral nervous systems – resulting in constant, severe pain. It most often afflicts one or more limbs, typically after an injury, surgery, stroke, or heart attack. The pain is described as burning, “pins and needles” or squeezing sensation. CRPS is the highest form of pain known to humans as per the McGIll Pain Scale . Aside from the severe pain, other symptoms include changes in skin color, temperature, severe uncontrollable tremors, swelling of the affected limb, hair loss, muscle atrophy and more.

Living with CRPS has been a daily battle for Josh. The pain never truly goes away. It’s with him all the time, affecting his ability to do simple, everyday tasks and has drastically changed his quality of life. He’s undergone over a year of physical therapy, occupational therapy and even tried aqua therapy to improve mobility, restore function, reduce pain, and prevent further injury by using a variety of methods and techniques but the results have been limited, leaving him struggling with mobility and strength in both legs.

CRPS is known anecdotally as the “Suicide Disease” because the pain is so intensely incapacitating that too many lose hope. CRPS sufferers describe the pain as being “constantly on fire” or “something is literally stabbing or cutting me” due to damaged nerve pathways misfiring own signals to the brain. Sadly, even the wind or a slight touch can trigger excruciating pain for Josh. Due to this prolonged suffering, doctors consider limb amputation so we pray the clinic can help. Most worrisome to us now is that the CRPS appears to be moving to his right leg and the AVN in his right hip is getting worse which will make him wheelchair-bound all the time.

The Journey

Josh’s journey started in November 2023, when he started experiencing severe pain in the left hip. He was unable to walk on his own and started using a cane. We drove him to the ER where they ran several tests but were not able to diagnose the issue so sent him home with pain medications and referred him back to his PCP who then referred him to Pain Management, Neurology and Spine specialists and endured numerous injections (spinal lumbar puncture, nerve block and pain blocks) and interventions, none of which worked to relieve his pain or restore his mobility.

The next 3-4 months he was misdiagnosed repeatedly. He was told he needed spine surgery. We did extensive research to find the best spine surgeon to get a second opinion. This surgeon did not agree with his diagnosis so referred him to a renowned Neurosurgeon who ran a simple x-ray of the hip and found that he had Avascular Necrosis (AVN) also known as osteonecrosis in both hips. AVN is a condition that causes bone tissue death in the hip or other joints due to a lack of blood supply. AVN can lead to pain, reduced mobility, and eventually collapse of the bone and joint. He was immediately referred to an Orthopedic Surgeon who informed that his left hip collapsed and needed a hip replacement right away and after he recovered, he would need to have another hip replacement surgery on his right side.

Not the greatest news but were relieved that he would not need spine surgery and had high hopes that he would be back to himself in no time. We were told he would start walking after surgery and recovery would take a few weeks. Not long after surgery Josh started getting leg tremors and muscle spasms in his left leg and experienced "Phantom hip pain,” the sensation of pain (throbbing, aching, burning, and sharp sensation) in the area where the hip joint used to be, even though the surgery successfully replaced the joint, the painful hip was still present and felt like it was in an unnatural position despite it being replaced. We asked the orthopedic surgeon why Josh is not walking, and he responded to us with “Well, you tell me, why isn’t he walking? The surgery was a success.” We were floored.

We were finally accepted by Mayo Clinic and were so excited thinking “this is it, our saving grace.” He met with multiple specialists, had another series of tests and injections with no diagnosis or relief of pain. After weeks, Neurology came back with the diagnosis of CRPS that was triggered from having the nerve damage and trauma from his hip surgery. Mayo referred him to their Pain Management and Rehabilitation Program selling us on cognitive behavioral, psychological, and physical therapies stating that they had a high success rate and specialized in CRPS - this was not the case. There was very little PT, no other patients with CRPS, and Josh spent hours sitting in a classroom setting being told how to live with it. It was a one-fits all approach that did absolutely nothing for Josh. Sadly, each night, Josh’s pain skyrocketed, and he was in horrific flare ups and getting sick all the time from the extreme pain.

His right hip is now worsening and will need another hip replacement at some point, but the surgeon won’t do the surgery until his CRPS is under control. Josh has not been able to walk and is in an electric wheelchair 99% of the time and uses various types of walkers that give him the ability to function around the home where his wheelchair is too large to fit. His balance and weakness are continuing to get worse, and his fall risk has dramatically increased.

A Hopeful Path Forward – Treatment in Arkansas

After extensive research, we discovered a specialized treatment for CRPS at a facility in Arkansas that could give Josh a chance at reclaiming a pain-free life. The facility offers a holistic approach to treat CRPS using advanced therapies and unique approaches to help send painful symptoms into remission. Spero Clinic draws patients from across the globe seeking relief from years of unresolved pain. Many have experienced remarkable progress through the clinic's 14-week program, which prioritizes personalized care tailored to each patient's unique needs.

After reviewing his medical history, they have approved and accepted Josh as a good candidate and have him scheduled to start their program on February 17, 2025. They believe this treatment could significantly reduce his pain and, hopefully, help him return to a more normal life without large doses of daily medication. This feels like our last “Hail Mary” so we ask that you pray with us and for us that this program works.

Why I’m Asking for Your Help

The Spero Clinic is not covered by insurance companies because the clinic is not considered mainstream medicine and does not operate within commercial insurance plans. Instead, the Spero Clinic operates on a "fee-for-service" basis, which requires us to pay in full for services at the time of treatment.

We wish to assure everyone that all money raised will go directly toward funding the intensely grueling rehab program which costs $70,000, including supplementary medical support, and other specialized testing and therapies), as well as travel, accommodations, food, and incidental expenses for him during his time there.

This treatment could truly be life-changing, but it comes with significant financial cost. Your contribution will not only help cover these costs but will also give Josh a chance of regaining his independence and a quality of life that feels out of reach to him right now.

Here are stories of patients who the clinic has supported and patient before and after photos.

Thank You for Your Support

Thank you from the bottom of my heart for taking the time to read his story and considering supporting him in this journey. Every donation, no matter the amount, brings him one step closer to healing and hope. We are incredibly grateful for your kindness, and even sharing this page can make a difference.

Outside of the support, Josh really hopes that this page helps raise awareness about this awful illness and hopefully some day the health care system will find a better way to support people with CRPS.

We will post regular updates once Josh’s treatment program starts in February. Thank you from the bottom of our hearts for your caring and kindness – and God bless you.

The Barth Family

Goodyear, AZ