Finding Relief When What Once Worked Changes: One CRPS Patient’s Journey

In the 21 years since Tracey Morales was diagnosed with Complex Regional Pain Syndrome (CRPS), she has explored a variety of pain management tools in the search for relief. Here, she shares her journey with this multifaceted condition.

Finding relief when what once worked changes is a common plight for those living with chronic pain. Identifying the right pain management plan can be difficult and often becomes a life-long process as solutions and situations evolve. Everyone’s pain is unique, so creating an individualized pain management plan is important, but rarely an easy task. Rather, it is ongoing and often challenging. I have tried numerous treatments in my 21-year search for relief. Here is my story.

My journey with Complex Regional Pain Syndrome (CRPS, formerly called Reflex Sympathetic Dystrophy or RSD) began in January 1998. A toy computer fell on my left foot, fracturing two toes and crushing the midtarsal joints. Two weeks later, in increasingly debilitating pain, I knew something was very wrong.

I began searching for answers and in 1998 was very lucky to find not one, but two doctors that were knowledgeable in CRPS. Working with this team, I was diagnosed with CRPS within a month of my injury which is uncommon. Most people go years before receiving a diagnosis because there is a lack of knowledge in the medical community about CRPS.

Source: 123RFTracey Morales finally found hope and relief in managing her complex regional pain syndrome (CRPS) after trial and error with several treatment approaches, including ketamine and nerve blocks.

Treatment Attempt Part I: Sympathetic Nerve Blocks

In the six weeks following my diagnosis, I had six outpatient sympathetic nerve blocks and an in-hospital 6-day epidural. All worked but wore off within 24 hours or less. I soon found that for me, CRPS would come back fighting, with my pain worsening after each treatment. My leg felt as though it was on fire, but ice cold to the touch, and discolored from my groin to my toes. It looked like someone had colored it with a black magic marker – a sign that the tissue was beginning to die.

I decided to have a sympathectomy (that is, the cutting of the affected nerve) two months after the initial injury. The morning of my surgery, my toe was beginning to get gangrene, and we knew that time was not on our side. During my surgery, the doctors focused on a cluster of nerves at the base of my spinal cord and found the sympathetic nerve for my left leg. The nerve was cut from the base, and the doctors removed approximately 10 to 12 inches of that nerve down my leg. (Read more about nerve blocks and other interventional pain treatment approaches.)

A Short-Lived Remission

Following the procedure, I went into remission for four years. I went back to work, got married, and had my second daughter. But I lived cautiously, the doctors’ warning me to be careful and specifically not to drop anything on my foot or re-injure my leg—this was always in the back of my mind. Then, when my second daughter was 2, she had her tonsils removed and I stayed in the hospital with her. I fell asleep in her bed, not realizing or thinking twice about the fact that my foot was pressed up against the footboard. When I awoke the next morning, and stood up, I realized my CRPS had returned. I could not put any weight on my foot without feeling excruciating pain. We had not realized something as simple as resting my foot in certain positions could be a problem, and in four years I had not had this problem before. It was heartbreaking.

I consulted with my vascular surgeon, who conducted tests, and found that my sympathetic nerve had regrown at the base of my spinal cord by about one-quarter of an inch. Even though the nerve was not connected to my leg anymore, it was enough growth for the pain to return. My surgeon recommended against having another major surgery to remove the new growth and confirmed that the CRPS was back. Over the next five years, the pain continued to spread – I was bedridden 95% percent of the time.

The pain claimed a big part of my life and independence. It forced me to quit my job and rely on my husband and 11-year-old for so much, including the care for our youngest. I was so lucky to have their support, and so thankful.  However, I quickly found myself in a deep depression. The unrelenting, debilitating pain and change to our lifestyle was tough, finding relief seemed increasing hopeless, and so many doctors were claiming that it was all in my head. I contemplated suicide – on one particular occasion, my 3-year-old actually found me sitting with a bottle of pills in my hand. Recognizing my pain, she hugged me and said, “I love you, Mommy. It’s going to be okay.” This moment served as my wake-up call. Through my husband and daughters, I found my will and motivation to live. I made a vow to always fight, to not let chronic pain win. We found a support group and my family went to counseling to help work through this illness together.

Treatment Attempt Part II: Ketamine Infusions

During this time, I was desperate for relief, and the doctors explained that because I had already had the sympathetic nerve removed in my left leg, the only real treatment option was medication. I tried more blocks, lidocaine infusions, and many different medications over the years, but nothing worked for my pain, and most had nasty side effects including brain fog, memory loss, weight gain and loopiness, which I hated. I began wearing a fentanyl patch – in the beginning, the patch dispensed 25 mcg but over the years my dosage was increased and peaked at 200 mcg every two days. I was also prescribed 10 mg of oxymorphone as needed for breakthrough pain. While these medications offered some relief, my pain continued, and I looked to friends and family for any advice.

A friend suggested that I try ketamine infusions, which were experimental at the time but seemed to be growing for use in managing certain types of chronic pain. I waited on a list for a year-and-a-half for my first appointment and started the infusions in January 2007. I started with 10 days of infusions, followed by 3 days of booster infusions every 2 to 3 months for the next 10 years. Luckily, the infusion clinic was about 20 minutes from my house. Unfortunately, consistent insurance coverage was a struggle—we often had to pay out of pocket for treatment—and those treatments had side effects as well, though milder and more tolerable than what I’d experienced in the past. I was given other medications to manage the side effects, which included nausea, migraine attacks, and fatigue.  

The infusions worked for eight years, but then became ineffective during the last two years and my pain went through the roof once again. This time, the CRPS spread into my right leg. Given the cost and pain, I decided to end the infusions in December 2016.

 

Treatment Part III: PEMF Therapy

Shortly after ending my ketamine infusions, I stumbled across pulsed electromagnetic field (PEMF) therapy while working on some CRPS/RSD awareness items that I had started to design and sell online as a personal effort to contribute increased awareness and support for invisible illnesses. PEMF technology works at the cellular level to reduce inflammation and accelerate the body’s ability to repair injured cells. I had never heard of this technology and immediately wanted to know more, so I emailed a company that produces one of these devices, Oska Wellness. Oska Wellness’s device, Oska Pulse, costs $399 but is Flexible Spending Account (FSA) and Health Savings Accounts (HSA) reimbursable. Quite frankly, I was willing to pay for a chance at any real, long-term pain relief.

The author's feet before and after PEMF therapy.

 

 

Within a few days, an Oska Pulse arrived at my doorstep. In talking with the company’s customer service team, I learned that the device is unique because its PEMF technology consistently rotates through four frequencies targeted at key cell types designed to accelerate the resolution of the tissue’s inflammatory response, improve micro-circulation, degrade pain signals, and stimulate tissue regeneration. It was recommended that I use the device as often as possible each day to begin with, and then I could reduce sessions overtime, as needed, but was reminded that consistency in use of the device is key.

The author's leg before and after PEMF therapy.

After reading the pamphlet and also speaking with my doctors, I came up with a plan. I learned that the field of energy around Oska Pulse has a radius about the size of a beach ball, which allows for more freedom when using the device – for example, I can strap the device on one leg, but it will also help reduce inflammation in the other leg during the same session. At the beginning, I used the device six to eight times a day (30 minutes each, although there is a newer version that provides 90-minute sessions) and under my pillow each night to help with inflammation in my upper body. After about two months, I started forgetting to use it because, to my surprise, I stopped experiencing pain. A few days would go by and I would start to have pain in my leg again, so I would restart the sessions (about two a day and one at night) and find my pain dissipate once again. My pain level had gone from a 9 out of 10 to under a 2 in a matter of three or four months; my neurologists and I couldn’t believe how much PEMF was helping.

Two years after beginning PEMF therapy, my pain is still usually, at most, a 2 out of 10. I have continued to see a doctor regularly, and a neurologist helps track my pain, but I haven’t had a flare in over a year, even with a few falls. The swelling and discoloration in my right leg are also gone. And notably, I am in the process of decreasing my pain fentanyl patch with the support of my doctor. With my doctor’s support, I been very slowly weaning off the patch since November 2017 and as of May 2019, I’m down to 25 mcg every two days. After one or two more decreases, I will be off ALL medications.

 

My New Normal with CRPS

After exploring a variety of treatments over the past two decades in the search for pain relief caused by CRPS, my current daily management plan includes a fentanyl patch of 25 mcg every two days and one session of PEMF therapy each night while I sleep.

I occasionally use the PEMF device preventatively when I know a strenuous day is coming. And since the device is portable, I can take it with me on trips or even around town in case I have a bit of pain. I love that it is medication-free, non-invasive, has no reported side effects and that I can control when I use it and for how long. While what has worked for me has changed over time, I am hopeful that my current pain management approach will last.  I hope my journey will inspire more doctors and individuals with chronic pain to consider PEMF in their search for relief.

When others with CRPS or chronic pain ask me for advice, I tell them finding a doctor that is knowledgeable about CRPS, or any chronic pain condition they may have, is key. But it’s also important to understand that because many chronic pain conditions are rare, not all physicians are experts, and we are all still learning together.

Updated on: 05/30/19
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CRPS/RSD Overview
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