Category: Guest Blogger for RSDSA

Written by Mia Lane for the RSDSA blog.

My daughter was just 13 years old when she developed Complex Regional Pain Syndrome.

It began in late February 2014 with what seemed like a simple accident. She slipped on a puddle of water on the kitchen floor and injured her right foot. At the time, we had no idea that this minor incident would mark the beginning of one of the most challenging journeys of our lives.

What made her case truly extraordinary, however, was the speed of her diagnosis. Our general practitioner recognized CRPS almost immediately, diagnosing her within five minutes. In hindsight, and after everything I have since learned about CRPS, I realize how rare this is. Many patients around the world go undiagnosed for months, even years, enduring unimaginable pain without answers.

The suffering caused by CRPS extends far beyond the patient. Watching a loved one endure such intense, relentless pain is deeply distressing. Traumatizing, even. As a caregiver, the helplessness you feel, knowing there is little you can do to ease their suffering, is something that cannot truly be put into words.

We live in a coastal city in South Africa, and I can say with complete gratitude that my daughter received exceptional medical care. Our doctor worked alongside a physiotherapist within the same practice, and treatment began within 24 hours of her diagnosis.

Her medical team consisted of just two individuals: a general practitioner and a physiotherapist. They were not specialists in CRPS, but they were dedicated, compassionate, and willing to go the extra mile. Researching, adapting, and committing themselves fully to her recovery.

From the outset, we made a conscious decision regarding her treatment approach. While medication was prescribed, my daughter, remarkably at just 13 years old, was determined not to rely on it entirely. Together, we chose a balanced approach: using medication in moderation, while focusing primarily on holistic and rehabilitative therapies.

Because of her age, she was able to actively participate in her own care, communicating her pain and progress clearly – something that proved invaluable throughout her recovery.

When treatment began, her pain levels were at a 10 out of 10. Her recovery plan included a combination of therapies, such as (but not limited to):

– Graded Motor Imagery (GMI) (Later during treatment, when pain levels dropped below 10/10)

– Mirror therapy

– The use of a TENS machine (also introduced later, once pain levels had decreased)

– A balanced, nutrient-rich diet – an essential component of healing

As expected, our daily lives were significantly impacted. She relied on crutches and was initially unable to bear any weight on her foot. Even the sensation of a sock touching her skin was unbearable, let alone wearing a shoe.

Explaining her condition to others (especially friends at school) was incredibly difficult. How do you describe something as complex (pun intended!) as CRPS to someone who has never heard of it?

The nights were the hardest. I would hear her quietly crying, knowing she was in excruciating pain. I often couldn’t even sit beside her on the bed, as the slightest movement of the mattress would intensify her discomfort. The sense of helplessness in those moments is something I will never forget.

And yet, despite it all, she recovered.

After approximately five months, my daughter reached remission. I firmly believe this was due to the combination of early diagnosis, a dedicated medical team, and most importantly, her own unwavering determination. She was resolute in her goal to reclaim her life.

Then, in August 2018, almost exactly four years after reaching remission the first time, CRPS returned. She was 17 at the time. But this time, we were prepared.

We understood the condition, recognized the symptoms, and immediately implemented the same treatment approach. By the end of September, going into October 2018, she reached remission once again.

Today, my daughter is a thriving young adult, living a full and pain-free life. She is a qualified personal trainer, holds a certification in nutrition, and has recently completed her studies in sport psychology. Her journey is one of resilience, courage, and hope. And that is the message I want to leave you with:

There is hope. Remission is possible. With the right medical support, early intervention, and determination, recovery can happen.

I share our full story in my e-book, Five Minutes, published under the pen name Mia Lane. It is currently available on Amazon. The cost is under $6 or free to read in Kindle Unlimited.  A paperback version is also coming soon. The book also includes resources for those seeking reliable CRPS support, particularly in the United States.

If you would like to follow my journey, you can find me on Instagram or by reaching out via email at [email protected].

Written by CRPS Warrior Erikka Elsbury. This blog first appeared in the April edition of In Rare Form.

In 2007, my family and I traveled to New York City for the Achilles Hope and Possibility Walk. I saw the motto, “A journey of a thousand miles begins with a single step,” on the shirts RSDSA had for their team. I quickly knew that quote applied to my life and my journey with RSD/ CRPS.

Just five years prior, at the age of 12, I had been diagnosed with a condition so incredibly painful and debilitating that the average person and physician cannot comprehend it.

I had a very normal, happy childhood. I was surrounded by family, friends, and my dogs. One evening, a friend and I were goofing off when I fell in the hallway of my home and sprained my left wrist. I was accident prone. I had broken several bones and sprained multiple ankles and wrists throughout the years, so my parents and I did not think much of it. My dad helped me wrap it with an ACE bandage, and I went to bed.

The next morning, we had a snow day. It may have been the end of March, but in Ohio, blizzards are still possible! My wrist had turned purple and blue and was becoming increasingly painful. My mom took me to the ER where I was diagnosed with a sprain and sent home with Tylenol and ibuprofen. That night, CRPS set in. Over the next few weeks, I saw orthopedic doctors and hand specialists. Every one of them told us that nothing was wrong. They concluded I was exaggerating the pain for attention.

Living 45 minutes from Cleveland, we had access to excellent hospitals. My mom took me to an orthopedic doctor at the Cleveland Clinic. That day, I was diagnosed with Reflex Sympathetic Dystrophy. He immediately called one of his colleagues in Pain Management, Dr. Michael Stanton-Hicks, who I believe saved my life.

The next morning at 8 a.m., my mom and I met him. After speaking with him briefly, he asked what I had eaten and drank that morning. Since I had only taken a few sips of a hot chocolate, he had me change into a hospital gown and whisked me into a procedure room for a stellate ganglion block. For the first time in seven weeks, I felt relief. I completed a series of three nerve blocks over several weeks, along with physical therapy and medication.

Gradually, my pain decreased and became manageable.

During my sophomore year of high school, I sprained my right ankle and my RSD/CRPS spread immediately. I was registered to attend camp with my youth group and didn’t want to go on crutches, so I forced myself to walk. It probably saved me. While at camp, my foot doubled in size, my spasms returned, and the pain was unbearable. I knew my RSD was back, but I was four hours from home and couldn’t do much.

When I returned, Dr. Stanton-Hicks gave me two options: resume medications or continue swimming on the high school team and use it as physical therapy. I chose the swim team. I became a lifeguard and learned how to hide my pain when I was on my ankle and leg for too long. I maintained an active social life, and for a while, RSD/CRPS didn’t hold me back—until my junior year.

On a particularly cold and snowy day, I crushed my pointer finger in my car door while trying to warm up. On the drive home, I felt the familiar, fiery, shooting pain down my right arm. By the end of the night, my right hand was atrophied. Dr. Stanton-Hicks attempted multiple nerve blocks and even an epidural with a rehabilitation stay in a pediatric rehab hospital to stop the spread, but unfortunately, my RSD/CRPS was here to stay.

I am now in my 30s and have lived over half my life in severe, excruciating pain. At 18, during my senior year of high school, I had a spinal cord stimulator implanted because medication and physical therapy alone was not enough in terms of pain relief. I am currently on my third battery and will need surgery next year to get my battery switched out.

My spinal cord stimulator gave me my life back. I was able to go to college and became a registered nurse. I worked as a floor nurse up until two years ago when I realized my body couldn’t handle it anymore. My RSD/CRPS slowly worsened, and last year I began monthly low-dose ketamine infusions, which help my body and brain reset. It is an incredible feeling to get even a small break when it feels like your body is being assaulted 24/7. It has always been hard for me to describe what RSD/CRPS feels like. I describe the pain as dousing your arm in gasoline and lighting it on fire while lightning bolts shoot up and down your limb. Most people would be bedridden or in the ER with the amount of pain people with RSD/CRPS manage daily, yet we keep pushing through.

Pain is not only physically exhausting but mentally exhausting as well. For a long time, I was ashamed of my condition. I was told not to talk about my RSD/CRPS, so when it returned in high school, many of my friends were shocked to learn I had been suffering for years. I now work full-time and often feel I have more to prove, even though I know that isn’t true. There are days when I wish I could hand the mental burden to someone else.

RSD/CRPS has taught me many lessons. I learned to advocate for myself and others. Despite my condition, I graduated with my nursing degree and currently work in a doctor’s office. As a floor nurse, I made it a priority to advocate for adequate pain control for my patients.

I’ve learned that not everything is as it seems. On the outside, I look like a healthy 30-year-old. No one sees the medications I take daily, my schedule for charging my spinal cord stimulator, my ketamine infusion routine, the multiple medical appointments, or how carefully I arrange my bed just to get a few hours of sleep. Society often assumes pain comes with age—that young people cannot be chronically ill. I am constantly told, “Just wait until you’re older.” People assume I’m healthy simply because I’m young. It took seven doctors and seven weeks for me to be diagnosed. If not for my mom’s insistence, my pain may have been dismissed as teenage attention-seeking. Sadly, I know warriors who waited months or even years for a diagnosis.

I’ve learned that boundaries are healthy. I love helping others. I love family gatherings and having my nephews over. But I’ve had to accept that my health comes first. I used to push myself until I collapsed from exhaustion. Now, I reserve Saturdays as rest days. I sleep in as long as my body allows. I lounge. I binge-watch TV. I’ve learned that I cannot truly enjoy birthdays, holidays, or time with family if I am barely functioning.

From a young age, I learned the use it or lose it philosophy. Dr. Stanton-Hicks explained how important it was to use my affected limbs daily. Now, doing hand isometric exercises when stiffness sets in is second nature. My dog, Oliver, also motivates me to keep moving. We love exploring the beautiful parks near us.

My biggest advice to both new warriors and those who have lived with this for years: educate yourself and advocate for yourself. Though this disease is incurable, new treatments continue to emerge. If you feel unheard, seek a second opinion. I changed physicians last year after feeling dismissed, and I am finally receiving proper treatment and relief again.

Fortunately—and unfortunately—no one truly understands this life unless they live it. That’s why having someone you can talk to is essential. I met several girls through support groups and in waiting rooms. We quickly became friends. I was terrified before my first ketamine infusion, but they reassured me and checked in afterward. We support each other because we understand what the other is going through.

Just remember: none of us are alone.

Written by Jamie Sparbel for the RSDSA blog

How and when did you develop CRPS?

My CRPS started January 3, 2013, or at least that is when I was injured. I was diagnosed roughly about six months later. I was an EMT and I slipped on ice heading into a patient’s house and originally thought I had broken my wrist so I put a cast on my arm. After more x-rays, they determined it was not broken and they put my arm in a soft splint. I went to PT and massage therapy and nothing was working. Soon after, my ortho sent me to a pain management physician. My pain management physician walked in the room and said, “Yes you have CRPS and we need to stop it from spreading.”

What has daily life been like since your diagnosis?

I was a wreck when I was first diagnosed! I was young, just married and did not have any kids of my own yet. I was worried that this would restrict my life going forward. After about a year with CRPS I have learned to live with it. There are days where the pain is so bad I do not talk to anyone. I cry, I take hot showers, and I just want to cut my arm off. Other days the pain is tolerable and I go about my day where I am fine. I have always told myself, “do not let this define who you are.”

What is one thing you wish those without CRPS could understand?

You will have bad days! This can spread and it will at times be so defeating. But take the good days and remember that yes, this pain is the worst pain you have ever felt, but there is support out there and community that will support each other.

What advice would you give to newly diagnosed Warriors?

Get treatment ASAP. Do not wait! Go get second opinions and fight for your health!

What encouragement would you give to Warriors who have had CRPS for many years?
My CRPS is spreading down my left leg, so I really focus on the good days and what I can do now like spending time with my family, my daughter, and my friends. Sometimes I limp or my arm is in a sling, but I remember that the love I have for everyone is the same love they have for me. I would never wish it on anyone, but I will never let it define who I am, or have anyone remember me like this.

What activities or treatments have helped you find temporary or long term relief?

I am on medication. I find compression really helps in the winter. I also have a spinal stimulator that I love! Honestly, going to the gym really has helped in a weird painful way, lol. 

Anything else you would like to add?

Stay strong! I know it’s easier to say than to do, but that is what will get you through the bad days, weeks, and years. And don’t forget that it is okay to cry!

If you want to connect with Jamie, feel free to send her an email.

Written by Pennie A. for the RSDSA blog.

Hello my name is Pennie and I help my daughter Jess. She has CRPS Type 2 and we live in Sydney, Australia.

Jess was a dancer and was injured by a dance teacher. She had years of surgeries to try and preserve her hip, but unfortunately at 24 she needed a hip replacement. Six months after the replacement she was not recovering as she should have been so then she needed hip revision surgery for the replacement. This is where our nightmare started six years ago. Six days after the revision surgery, Jess was in excruciating pain in the hospital. Her leg from the knee down was purple and paralyzed.

Soon after, the surgeon took her back to the operating theatre. They found adhesions had formed due to years of inflammation that had crushed and adhered her sciatic nerve to two sections of her pelvis. This damage caused CRPS Type 2. Jess had lost the use of her lower leg.

One year down the track a nerve study showed that the sural and tibial nerves had been killed from the crush injury to the sciatic nerve. Her lower leg would never recover. Jess wanted an amputation with the hope to walk once again. We went to see a world renowned surgeon who performed osseointegration here in Australia as Jess could not have anything touching her leg due to hypersensitivity, so a normal prosthetic over her stump was not an option. The surgeon made it quite clear that the amputation would not take away her CRPS pain, but it would give her the ability to walk again as her leg was necrotic (dying). Jess had a below knee amputation at 25 years old with osseointegration. She can walk only short distances, but that beats being confined to a wheelchair.

Jess has a spinal cord stimulator, a bladder stimulator and can’t control her body temperature. She is in constant pain 24/7. Every day is challenging for her, but she tries so hard to remain positive. CRPS has changed her life forever, but she fights this ugly disease every single day. We both hold on to hope that someday, somehow there will be more that can be done to help her pain.

One of the biggest issues Jess and I find is that people look at her and say how great she looks, but my girl wears an excellent mask. The mask comes off around me and I see the hell she lives every day.

The other thing is extended family. They do not understand how hard each day really is for her and they do not make any effort to find out either which is so hard on us both.

My advice to other newly diagnosed Warriors is to learn all you can about CRPS and ask a lot of questions. Try to stay positive and don’t give up. Hold onto hope and find a pain specialist that will listen to you and understands this terrible, life-altering disease.

Bless you all xx

Pennie – A Carer and Mum

My son developed CRPS as an 11 year old when another child knocked him down at school. The unbearable pain was nearly instant. He thought that he’d somehow broken a bone in his foot. By the time dinner rolled around, he had removed his sock and shoe. As he began homework after dinner, he casually sat with his legs crossed, bumping his foot and the pain increased tenfold.

My son, Gage Klenotic, suffered with CRPS for 3 1/2 years. It was nearly a solid year before a physician diagnosed him. Daily life had us searching for an answer. Our podiatrist knew what Gage had and I knew what Gage had, because sadly I had a friend online, whose little girl suffered with CRPS, but no one else would diagnose him with CRPS.

I began researching all about CRPS. Life during that first year was hellish. I wanted to help my son, so we went to a dozen neurologists, pain physicians and doctors. Luckily, one prescribed physical therapy, so he began it in the hopes of something changing his pain. He completed physical therapy with zero pain medication for six months. Navigating an invisible illness with physicians calling your son a liar was unbelievably difficult during the first months of CRPS and it hurt our whole family. Those 3 1/2 years were traumatic and PTSD-causing.

I advocate and attempt to educate anyone who does not understand illness that can’t always be seen. Invisible Illness is not any less painful than an illness that can be seen with the naked eye. 

To anyone who is the caregiver for someone with CRPS, it is hugely important to listen, support, and help the CRPS patient feel safe and comfortable as they share their painful journey with you. And to anyone newly diagnosed, this community believes you. There is hope. There is hope for you to get better. There is hope to live with it and find a new path.

To anyone living with CRPS, you are an inspiration! I applaud you and anything you insightfully share is appreciated. 

My son found assistance through fludiotherapy. It is a warm sensation created with ground up corn husks being blown around the CRPS appendage. It didn’t cure it, but it was a pleasant sensation. Gage also had capsaicin cream used on his foot while he was under anesthesia. This cream is made from the hottest peppers and it burnt off his nerve endings and helped to reboot his nerves. It took months of recovery, but later he began to experience less pain when he coupled this with mental distractions via his psychiatrist. 

Thank you for this opportunity to advocate. I wrote about my son’s CRPS journey in a children’s book and an adult companion book. The children’s book is being given to newly diagnosed children by my son’s former pain physicians at the children’s hospital. I have also been interviewed on a podcast, because I want CRPS to be better understood. The CRPS community needs more information shared about them. A cure needs to be found. 

You can contact Natalie via Nataliemosleyklenoticbooks.com and [email protected].

Abbott is an annual sponsor of RSDSA.

Living with complex regional pain syndrome (CRPS) can bring daily challenges as individuals navigate life under the weight of persistent, severe pain. For Tony, his journey with severe pain started when he was diagnosed with rheumatoid arthritis at 19. Despite the physical toll, he built a remarkable career as a top chef at restaurants across the country.

“My attitude was always: Keep moving through [the pain],” said Tony. Yet he had numerous surgeries and fusing procedures to try and control his pain. And nothing really worked.

“After I [had fusion surgery on] my ankle in 1991, I was never really that mobile. I dragged my leg around,” Tony explained.

“If you want to be mobile, cut it off”

Tony heard this unwelcome advice from a doctor, so at age 40 he made the difficult decision to have his left leg amputated below the knee in the hopes of increasing his mobility.

For a while the amputation helped alleviate Tony’s pain. And with physical therapy, he learned how to get around on one leg, even mastering skiing. But 5 years later, he developed severe nerve pain, diagnosed as complex regional pain syndrome (CRPS). That’s when his pain specialist told him about DRG therapy.

Finding a life-changing therapy

Tony initially did a trial period with DRG therapy to see if it could provide some relief. The first day of his trial period, he felt so good that he walked 5 miles around New York City.

“It felt great,” he said. “Up to that point, I had not walked that far in about 5 or 6 years.” Tony then had a permanent DRG system implanted. And he said he’s never felt better. The majority of his nerve pain is relieved, so he’s able to hike again—and even able to go back to skiing. He’s now a ski instructor for disabled people.

“For me, it’s been a life-changing device,” Tony said of DRG therapy. I don’t give up.”

Tony hopes his story can help other people also suffering from CRPS I or Causalgia (CRPS II). “What people need to know is that if you have nerve pain, [DRG therapy] has a huge potential to change the quality of your life,” he said. “For me, it has completely changed the quality of my life.”

What is Proclaim™ DRG Therapy?

Proclaim DRG Therapy is a novel neurostimulation technology that relieves pain at the source by interrupting pain signals at the dorsal root ganglion (DRG) before they reach the spinal cord. The DRG is a cluster of sensory nerve cells that sit along the levels of the spine that researchers have shown to help modulate pain signals from areas of the body where people experience pain. ¹ Differing from traditional tonic spinal cord stimulation that has been used for decades, DRG stimulation may be a better choice for those with CRPS I or causalgia of the lower extremities. ²

By focusing electrical stimulation specifically on the DRG pain signals can be interrupted so you don’t feel pain in the same way. Proclaim DRG therapy has been clinically proven to provide significant pain relief, improve physical function, and enhance quality of life. 2*

Eligible patients can trial the therapy to see if it provides meaningful pain relief before committing to a permanently implanted system. 3 To learn more about DRG therapy watch Dr. Kiran Patel’s webinar that covers the nature of pain, common pain conditions, and therapeutic options for pain relief.

ISI

This testimonial relays an account of an individual’s response to the treatment. This patient’s account is genuine, typical, and documented. However, it does not provide any indication, guide, warranty or guarantee as to the response other persons may have to the treatment. Responses to the treatment discussed can and do vary and are specific to the individual patient.

These materials are not intended to replace your doctor’s advice or information. For any questions or concerns you may have regarding the medical procedures, devices and/or your personal health, please discuss these with your physician.

*Quality of life observed in other endpoints in the ACCURATE study

1. Esposito, M., Malayil, R., Hanes, M., & Deer , T. (2019, June). Unique Characteristics of the Dorsal Root Ganglion as a Target for Neuromodulation. U.S. National Library of Medicine. https://pmc.ncbi.nlm.nih.gov/

2. Deer TR, Levy RM, Kramer J, et al. Dorsal root ganglion stimulation yielded higher treatment success rate for complex regional pain syndrome and causalgia at 3 and 12 months: a randomized comparative trial. Pain. 2017;158(4):669-681. doi:10.1097/j.pain.0000000000000814

3. Proclaim™ DRG Neurostimulation System Clinician’s Manual. Plano, TX. 2025.

Risk Information: The placement of a neurostimulation system requires surgery, which exposes patients to certain risks. Complications such as infection, swelling, bruising, and possibly the loss of strength or use in an affected limb or muscle group (e.g., paralysis) are possible. Additional risks such as undesirable changes in stimulation may occur over time. Be sure to talk to your doctor about the possible risks associated with neurostimulation.

Rx Only

Brief Summary: Prior to using Abbott devices, please review the User’s Manual for a complete listing of indications, contraindications, warnings, precautions, potential adverse events, and directions for use. The system is intended to be used with leads and associated extensions that are compatible with the system.

Indications for Use: Spinal column stimulation via epidural and intra-spinal lead access to the dorsal root ganglion as an aid in the management of moderate to severe chronic intractable* pain of the lower limbs in adult patients with Complex Regional Pain Syndrome (CRPS) types I and II.**

*Study subjects from the ACCURATE clinical study had failed to achieve adequate pain relief from at least two prior pharmacologic treatments from at least two different drug classes and continued their pharma- cologic therapy during the clinical study.

**Please note that in 1994, a consensus group of pain medicine experts gathered by the International Association for the Study of Pain (IASP) reviewed diagnostic criteria and agreed to rename reflex sympathetic dystrophy (RSD) and causalgia, as complex regional pain syndrome (CRPS) types I and II, respectively. CRPS II (causalgia) is defined as a painful condition arising from damage to a nerve. Nerve damage may result from traumatic or surgical nerve injury. Changes secondary to neuropathic pain seen in CRPS I (RSD) may be present, but are not a diagnostic requirement for CRPS II (causalgia).

Contraindications: Patients who are unable to operate the system, who are poor surgical risks. Patients who have failed to receive effective pain relief during trial stimulation.

Warnings/Precautions: Diathermy therapy, implanted cardiac systems or other active implantable devices, magnetic resonance imaging (MRI), computed tomography(CT), electrosurgery devices, ultrasonic scanning equipment, therapeutic radiation, explosive and flammable gases, theft detectors and metal screening devices, lead movement, operation of machinery, equipment and vehicles, pediatric use, pregnancy, and case damage.

Adverse Effects: Unpleasant sensations, changes in stimulation, stimulation in unwanted places, lead or implant migration, epidural hemorrhage, hematoma, infection, spinal cord compression, or paralysis from placement of a lead in the epidural space, cerebrospinal fluid leakage, tissue damage or nerve damage, paralysis, weakness, clumsiness, numbness, sensory loss, or pain below the level of the implant, pain where needle was inserted or at the electrode site or at IPG site, seroma at implant site, headache, allergic or rejection response, battery failure and/or leakage. User’s Guide must be reviewed for detailed disclosure.

Written by Krystal Jones for the RSDSA blog.

My name is Krystal Jones and this is my story about how my journey started.

Around the age of 15, my left knee started hurting seemingly out of nowhere. It started out with a little pain and then it got progressively worse over the years.

I was diagnosed with CRPS/RSD back in 2014 by pain management doctors, but the cause of my pain was unknown at the time. Therefore, some doctors told me that I didn’t have CRPS because I was “too young” to be going through that much pain. They thought I was crazy and that I was imagining this pain. They said there was nothing else they could do for me. However, I never gave up.

I consulted with various specialists, including pain management doctors, orthopedic surgeons, sports medicine experts, my primary care physician, physical therapists, rheumatologists, neurologists, and a few behavioral therapists to see if I had CRPS. I tried so many treatments including medications and supplements (with a lot of allergic reactions), different types of topicals, ointments, several injections, multiple surgeries and procedures.

After all of the consultations, I suspected that my first knee surgery, an arthroscopic knee procedure on November 2, 2006 to repair a cartilage tear in my left knee, might have triggered my symptoms of CRPS/RSD as the pain in my knee began to get worse after that. I do not know how the tear came about because I do not remember falling and I did not play sports.

Throughout the years, I have faced numerous challenges, yet I have always overcome obstacles. In May 2020, a former primary care doctor diagnosed me with CRPS Type 1 after I experienced severe, disproportionate pain and underwent various tests, including X-rays, CT scans, nerve test (EEG and EMG), physical therapy, extensive family medical history evaluations and blood work.

Daily life is hard because my symptoms vary and affect both of my knees and feet. CRPS has changed my life. Sometimes I feel ok, but then I have tremors in my right arm and leg that come and go. I start stuttering and I have panic attacks. I sometimes feel confused and it’s hard to hold a conversation. I have brain fog and sometimes it’s hard to decide which leg I want to move first. I have throbbing, sharp, and shooting pain in my knees in addition to muscle spasms in my back that come and go. I have burning pains at the top of my feet and in between a few of my toes. I am on disability. I worked for 14 years as a cashier at a supermarket while dealing with chronic pain.

I wish people who don’t have CRPS/RSD could understand that we are asking for support, comfort and compassion as this is what we go through every day. It is not easy and we try our best to push through. This burning, fire, intense pain along with other symptoms is a constant battle. This pain is REAL!

Things that help me get through my journey include praying daily, meditating, reading books, writing in my journal, relaxing, listening to music, adult coloring books and spending time with my family. I also have a permanent Dorsal Root Ganglion (DRG) stimulator implant in my back.

I have been married to my amazing husband for five years now. I do not have any kids of my own, but I do have one bonus son. I have one sister and one brother and through them I have two beautiful nieces and two handsome nephews.

Krystal recently self-published her first book titled Overcoming Obstacles- This Is My Testimony. Feel free to connect with her on Facebook, Instagram, and via email.