Beth Stillitano is a CRPS patient and advocate in the Charlotte area who has been dealing with CRPS complications for the past 25 years. Sept. 26th is the anniversary of her injury leading to diagnosis. She is also the executive director of Fight the Flame 501(c)(3) which is coming up on Sunday September 26th at McAlpine Creek Park.
Runners and walkers of all ages took part in the 4th Annual “Fight the Flame 5K” Sunday morning at McAlpine Creek Park, raising money for a degenerative neurological disease called Complex Regional Pain Syndrome (CRPS)…
Imagine a medical condition where a hug, an autumn breeze or even contact with one’s clothes could cause crippling, searing, red-hot pain. This is what people with Complex Regional Pain Syndrome deal with every day.
First documented in 1864, Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy, is a severely disabling
Imagine a medical condition where a hug, an autumn breeze or even contact with one’s clothes could cause crippling, searing, red-hot pain. This is what people with Complex Regional Pain Syndrome deal with every day.
First documented in 1864, Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy, is a severely disabling, degenerative, chronic neuroinflammatory disorder. It often develops following an injury where the pain far exceeds the nature of the damage and does not subside after healing. Complex Regional Pain Syndrome can also develop without a clear injury.
Given the perplexing characteristics of this disease and the many years since its documentation, you’d think it would be well-known, however most people, including clinicians, have never heard of it.
That is why over 200 people gathered Sept. 29 at McAlpine Creek Park for Fight The Flame’s seventh annual 5K and 1K Family Roll and Stroll. Most of those present participated in the run or walk while others cheered from the sidelines or visited one of the many educational or sponsorship booths.
One such booth challenged those without Complex Regional Pain Syndrome to hold their hand under ice-water for two minutes, which loosely simulated the pain a person with Complex Regional Pain Syndrome feels 24 hours a day.
Students from Queens University, UNC Charlotte and Providence High School arrived early to help set up and check in runners.
Fight The Flame was started by a 12-year-old who wanted to help others understand the condition his mom has managed since 1996. The seventh annual 5K raised over $26,500, bringing the total donations from Fight The Flame to $164,000.
These funds have allowed Fight The Flame to contribute toward further research and awareness of Complex Regional Pain Syndrome, create high school scholarships and sponsor a thermography lab.
Fight The Flame remains active year-round in providing support for individuals and their families. Monthly group meetings are held to discuss topics such as traveling with pain, getting through the holidays and helping family and friends understand the lives of those with Complex Regional Pain Syndrome.
Jonathan Pilcher is a health communication major graduating in December 2019 from UNC Charlotte. He is interning with Fight The Flame, which has helped him not only achieve real-world experience but also learn ways to better manage his own chronic pain condition, Occipital Neuralgia. After graduation, he plans on continuing his work with health organizations.
The 3rd Annual Fight the Flame 5k is an official time-chipped race and walk to raise awareness and money for Reflex Sympathetic Dystrophy (RSD)/Complex Regional Pain Syndrome (CRPS). It scheduled for November 1 at 8:00 a.m. at McAlpine Creek Park in Charlotte, North Carolina.
What is RSD/CRPS?
Reflex Sympathetic Dystrophy (RSD)/Complex Re
The 3rd Annual Fight the Flame 5k is an official time-chipped race and walk to raise awareness and money for Reflex Sympathetic Dystrophy (RSD)/Complex Regional Pain Syndrome (CRPS). It scheduled for November 1 at 8:00 a.m. at McAlpine Creek Park in Charlotte, North Carolina.
What is RSD/CRPS?
Reflex Sympathetic Dystrophy (RSD)/Complex Regional Pain Syndrome (CRPS) is a chronic neurological syndrome characterized by: Severe burning pain Pathological changes in bone and skin Excessive sweating Tissue swelling Extreme sensitivity to touch
One RSD/CRPS Sufferer’s Story Approximately 6,000,000 people in the U.S. suffer from RSD/CRPS. One of those people, Morgan Barfield of Charlotte, developed RSD/CRPS at the age of 16 following knee surgery. She describes her symptoms this way: “Constant burning pain like someone is throwing cinder blocks at you.”
Barfield’s RSD/CRPS symptoms began in her left foot and leg and eventually spread to both legs. She was on crutches and in a wheelchair for over two years, and was told she would never walk again because the muscles in her legs had atrophied. She underwent a surgery to implant a spinal cord stimulator and was able to relearn how to walk, with the help of therapy and self-motivation. She endured a setback that required her to take a year off from college because of pain in her hands, but by early 2015, her pain levels had dropped.
Barfield discovered the Fight the Flame 5k one day while sitting in her doctor’s office thumbing through a PainPathways magazine. She was excited to hear that the event was being held in Charlotte, and participated in the 2nd Annual Fight the Flame 5k last year.
A college internship requirement prompted Barfied to ask the Fight the Flame 5k organizers if she could intern with them and she volunteered an average of 30-40 hours per week from January through April 2015. One of her projects was to help organize this year’s event, and she also took on a special project to make the race more accommodating to those afflicted with RSD/CRPS, and thanks to her efforts, there will be more benches along the trail for people to take breaks during the race, and heaters to warm up, “which is huge for people with RSD because most of them can’t tolerate the cold,” according to Barfield.
I cannot stay quiet any longer. I have been a chronic pain patient for over two decades: CRPS - Complex Regional Pain Syndrome, dystonia, Dysautonomia, Barre Lieou Syndrome, vasovagal syncope, fibromyalgia, chronic migraines, etc.… I used to get upset that no one in my situation was ever represented on television.
I recently started t
I cannot stay quiet any longer. I have been a chronic pain patient for over two decades: CRPS - Complex Regional Pain Syndrome, dystonia, Dysautonomia, Barre Lieou Syndrome, vasovagal syncope, fibromyalgia, chronic migraines, etc.… I used to get upset that no one in my situation was ever represented on television.
I recently started to become hopeful when I saw advertisements for some of my favorite television shows announcing that their future plotlines were to include chronic pain patients. One popular prime time show even has one of its main characters diagnosed with CRPS.
When I first heard about these shows, I thought, “Finally, we will have some much needed public awareness about chronic pain and what we go through on a daily basis.” Now, I am furious. Not one of these prime-time shows has shown a chronic pain patient in a positive light. It has been quite the opposite.
As I have been following some of these story lines, I have become increasingly distressed. Each show has deliberately depicted someone with chronic pain as a drug seeker, an opioid addict or as someone who has died due to an overdose. This is sickening to me. I have not taken any pain medications for over 10 years, but many of my fellow pain warriors rely on them for pain management.
When I was appropriately prescribed Oxycontin/Vicodin/etc. I took it as directed. Most chronic pain patients follow the rules. Our opioid crisis in this county is hurting the people who need the medication the most. Last week, I watched a show where the medical director of a hospital directed that no opioids were to be prescribed throughout the entire hospital. I wanted to scream at the doctor on television. There is a correct time and place for this medication. I used to wonder why after a wisdom tooth was extracted was a patient given a 30-day prescription for hydrocodone when all that was called for was maybe a day or two. I know this practice has changed; this is a step in the right direction. When my daughter recently had an emergency appendectomy, they gave her three days worth of hydrocodone, after two days, she switched to acetaminophen. Again appropriate; since they too used to prescribe a month’s worth of medication for this procedure.
In my non-medical degree opinion it was these former type scripts that were some of the root causes of unnecessary addictions.
Chronic pain patients are people who need help. Most of us do NOT want to live or depend on medication. We try physical, occupation, water, talk, massage therapy; acupuncture; alternative medication; meditation; yoga; everything short of standing on our heads all day.
These televisions shows make chronic pain patients look like common drug seekers. I have already written to several of these TV shows asking for some positive changes. I encourage you to do the same.
I try to participate in daily meditation and relaxation to help soothe the rocky parts of my life. I am extremely fortunately to now have a very strong support system (my family and friends). To have so many people looking out for me and on my side makes the world of difference.
Being “stuck in a rut” of self-pity, is a horrible and s
I try to participate in daily meditation and relaxation to help soothe the rocky parts of my life. I am extremely fortunately to now have a very strong support system (my family and friends). To have so many people looking out for me and on my side makes the world of difference.
Being “stuck in a rut” of self-pity, is a horrible and sometimes cynical feeling. I used to ask "why" all the time, and cried my past allotment of "it is not fair." I was a "good" girl my whole upbringing. Didn't drink, or do drugs, didn't party and was a good student. I always had a job from when I was 11 on, and was active in choir, the theatre, and my youth group. I went to college and continued on to earn my Master's degree right away. I loved being a teacher.
Life is extremely situational - one moment, I was so happy; I had everything - a new house, an incredible job, a loving family. One accident completely changed my life.
Losing the ability to be a teacher was probably the hardest blow for me, besides the physical pain. For a long time, I couldn't or just didn't know how to "reinvent" myself. Finding positive things in my life were hard to see. I was disabled and felt worthless. I have recently discovered that my disability has become almost an asset - so to speak.
I have become an advocate for the disease I now have, Reflex Sympathetic Dystrophy (RSD). I have been educating and counseling people who have just learned of their diagnosis. Deciding to help and use the pain and knowledge that I have already been/ or going through was a “game-changer.” My life, my "game" although maybe not the one I chose to play, does not have to be all negative.
My son loves the Beatles. Not too long I discovered the perfect song for me -- "Blackbird." I think it is now become almost my mantra -- no matter what happens, I will fly.
I am always trying to explain to people how CRPS feels. It is a very hard concept for people to grasp.
People who live with CRPS describe their pain as sharp, burning, stinging, stabbing, aching, and throbbing. I generally respond that I feel my body is on fire; as if someone has replaced my blood with ignited gasoline. I guess that
I am always trying to explain to people how CRPS feels. It is a very hard concept for people to grasp.
People who live with CRPS describe their pain as sharp, burning, stinging, stabbing, aching, and throbbing. I generally respond that I feel my body is on fire; as if someone has replaced my blood with ignited gasoline. I guess that is hard for non-CRPS suffers to imagine.
A few nights ago, I gave myself a pretty bad burn when I touched the oven rack pulling out dinner a 425-degree oven. My skin blistered immediately producing a lovely second-degree burn. As the top of my skin heated up and continued to do so for a couple of hours, I realized – I can finally explain CRPS.
The horrible painful feeling you have for the short while on your skin after really burning yourself is what I feel every moment of every day inside my knee. My knee is always on fire. When I am in a pain flare-up, it is the equivalent of maybe breaking a bone at the same time; it is just added pain to what is already constant.
One of the biggest complaints, besides the pain, you will hear people with CRPS report is that is so hurtful and upsetting when others say “You look great. You are wearing makeup, jewelry, you must not be in pain today;” or “You are smiling, laughing and out with friends, your must be having a low or no pain day.” Or even worse, people may think that you have been lying about your pain levels.
What “healthy” people do not realize is that I have made a choice. No matter what I do, I am going to be in pain. I can crawl into bed and cry all day or go out and put on a smile and face the day as best as I can. Either way, I am still going to be in the same amount of pain.
Even on my highest pain flare days, I am sure to do two things: I get out of my pajamas, and put on something comfortable (lounge pants, sweats, etc.) and I will leave the bed and go to the couch. I force myself to do these things because it changes my frame of mind. I refuse to be a victim of this disease.
CRPS is the “suicide disease.” People are not meant to suffer in such extreme amounts of pain all day. Having support of family, friends, the medical community, and the general public is so crucial to our fight against this cruel disease.
I am sure it is hard to understand completely what we go through on a daily basis. Trust me, it is hell.
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