When I was 13 years old I was playing football for an extension out of University of Illinois. They would recruit teens to play for a select team, and then once they started college you would get a full ride scholarship for University of Illinois.
On June 21, 2013 we were playing a football game. I was tackled and landed wrong. The coaches said they heard my hip pop from the other end of the field. The male that tackled me broke two vertebrae in his neck. He now lives in a wheelchair.
My hip ball was fractured, my femur was fractured, the hip joint/pelvis was fractured, and I tore all the ligaments, tendons, and muscles from my left pelvis to my left knee. We were in another state at the time, and did not get home till June 24. By that time I could not sit or walk. I was dragging my leg behind me. My father took me to the ER and after lots of tests I was told everything I listed above. I was told I needed surgery.
However, I choose to not get surgery right away. I hoped to fix it with physical therapy. On Christmas Eve 2013 I went in for emergency surgery, after another fall that completely broke the ball of my hip. The surgery lasted 4.5 hours. I woke up alone in the hospital scared and in pain. I was told in six months I would be back to normal. However this is where things got worse.
Instead of getting better I became worse. The incisions would not heal, the pain way unparalleled. My left leg became cold as if not getting blood flow. I was tested for blood clots, had lots of imaging, and more, but nothing was found wrong. It took three-and-a-half years and seven different doctors, in three different states until I finally found a pain management doctor in Missouri who, after seeing and talking to me for two minutes, diagnosed me with CRPS type 2.
What has daily life been like since your diagnosis?
From 2013-2015 I spent most of my time in a wheelchair. My left leg was too week and using crutches made the pain worse. After my diagnosis, I went through spinal injection, steriod injections, six hip surgeries, nine spinal surgeries, including a spinal cord stimulator that malfunctioned and was replaced with a dorsal ganglion implant. I am on my second drg implant now.
I spent most of my teen years in hospitals undergoing treatments, tests, experimental treatments. Some of those included being in an induced coma and receiving ketemine, spinal injections, immune suppressant drugs, neurological medications, and more. In 2014, I was diagnosed with childhood endometrial cancer and went through chemotherapy. Since my diagnosis, I have been diagnosed with two blood disorders, Fibermyalgia, a liver disorder, EOG (a stomach disease), my eyesight has began to fail, I get sick easily, I have to walk with a crutch, I have complex sleep apnea, PCOS, endometriosis, and POTS. I spent years in physical therapy and aquatic therapy. I lost my dream of being a Marien, however I did work for the Department of Defense for two years. I’m now retired and on disability at 23.
I spend everyday in excruciating pain. I cannot stand to wear clothing for long periods, I’m sensitive to light, simple tasks are hard for me to achieve, and my short term memory is horrible. I’m in doctors offices or treatments at least three times a week. I have over $7000 in medical debt just for this year and I am on 13 medication and six herbal remedies. I can’t do a lot of activity or exercise. Somedays it’s hard to get out of bed. Life is full of pain, mental and physical.
What is one thing you wish those without CRPS/RSD could understand?
CRPS/RSD is considered an invisible disease, so it’s hard for others to understand how much is effected. CRPS is a neurological disorder that is slowly killing off your neurological system and it effects everything from mood, to ability to walk, to think. It is not something that we want. It’s not a dream or nice to have to be retired at 23 because my body is failing me.
What advice would you give to newly diagnosed Warriors?
Don’t give up. This journey is hard and does not end, BUT you need to enjoy the little things. Find something to be passionate about. Don’t neglect your mental health.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
When I was first diagnosed CRPS was not taught in medical schools. Most doctors did not know it exists. Now, it is taught in some medical schools, and it is being researched. There is always hope that help or a cure will be found.
What activities or treatments have helped you find temporary or long term relief?
Marijuana and my DRG implant. They are not perfect but it allows some relief. But most of all, allow your body to rest when it needs it. On good days, do what you can, but never over do it. If you do you are going to feel a lot worse.
Anything else you would like to add?
CRPS is a horrible disease. Most people, even with CRPS, don’t understand CRPS fully. Don’t allow someone else to minimize your journey because theirs is not as bad or the same as yours. Every warrior is a warrior.
Written by Judy Hopkins for the New Jersey Rare Disease Council.
My journey with CRPS, also known as RSD, began 24 years ago, as a result of a surgery in which a nerve was severed and never repaired. CRPS is a chronic neurologic pain disorder that is the most highly misdiagnosed disease in the US. The pain is commonly described as being doused in gasoline and lit on fire.
For many, including myself, diagnosis comes too late and aggressive treatment even later; that the disease process has spread not only throughout the extremities, but into the organs, causing autonomic dysfunction. This makes treatment options limited and remission even less likely. I’m one of the lucky ones who has known remission.
Thirteen years ago I landed in Germany for what would be my second Ketamine coma. After seven days in a coma, I awoke in complete remission and remained that way for the most amazing four months of my life. It was the first time in nine years that I was able to live my life with no pain, allowing me to ride my bike, play basketball and go dancing. Unfortunately, I found a tumor in my knee, requiring immediate surgery, restarting the disease process that has determined my life for 24 years.
Those four months of remission were the greatest of my life and I know that one day I will live without pain and with a fully functioning body once again, but until then, I go for inpatient treatment every three months and take medication to prevent/control flares. This is life with RSD, it’s not always pretty and it’s a disease that makes most people feel isolated from society, friends and even family. I’m fortunate enough to have the most amazing support system, but most do not.
When I was about to enter my junior year of college as a theatre major in the theatre and dance department at Montclair State University, I became too sick to continue. After spending 14 years bedridden and/or homebound, I am now in a place where I have been able to complete my undergraduate degree in psychology and will be applying to graduate school in the fall to attain my PsyD in clinical psychology.
CRPS is what is referred to as an invisible disease, most sufferers don’t “look sick” and because of that, are doubted by the ones they should be able to rely on most. It is also an orphan disease and therefore, receives no federal funding. This is why my parents and I set out to raise money for a private organization, Reflex Sympathetic Dystrophy Syndrome Association. They provide education to medical professionals, support for the CRPS community and fund research projects to try to find viable treatments for people suffering from this horrendous disease.
My family and I have hosted a walk in Ocean Township annually for the last four years. We have thus far raised more than $80,000. Awareness is so important when it comes to rare diseases, educating those who know nothing about a debilitating disease that has the highest suicide rate of any chronic illness. I have endured two comas, staph infection, sepsis, 27 operations, years of a bedridden life and more hospitalizations than I could count, and I would never have survived it without my family and friends by my side.
I wouldn’t change a single day that I’ve lived, because it has taught me to treasure the amazing days and not to focus on the tough days. Life is never easy, but for some suffering becomes a normal part of our day. I hope that this counsel will reach all those in our state that are suffering in silence and let them know they are not alone and that there are people out there who believe them and want to help them to keep fighting for the life they deserve. Thank you for your consideration.
Hello, my name is Susie. I got diagnosed with CRPS in 2015.
It started in 2012 when I had plantar fascia surgery. It spread to my other foot after a dental procedure. It got so bad that I was in a wheelchair.
I was off work for two years because I was in so much pain. The treatments I did to get into remission are 1000 mg vitamin C daily, laterality training for my brain, sympathetic nerve blocks, Calmare, ketamine infusions, and finally aspinal cord stimulator.
It took me about seven months of reprogramming the spinal cord stimulator and sometimes dealing with increased pain when it was on the wrong settings. Now I charge it up and when the battery dies, I leave it off for a few weeks because the residual effect lasts for me.
I found that I had to get one of the very lowest vibration settings then leave it off for a few weeks until my feet start hurting again then I charge it up.
The pain now is nothing compared to what it was. I think all the treatments that I did contributed a little to me getting better. I use the vitamin C daily to prevent it from spreading.
I’m cautious of procedures and surgery. I’ve researched so much, bought Dr. Katinkas book, listened to numerous YouTube seminars (like the one from Dr. Getson).
I never gave up. I knew remission was possible and once I found out what I had I never stopped. I really want to help people that have CRPS. I work at Kaiser and I educate all the providers on the illness so we can spread the word.
I developed CRPS at 12 years old in my left wrist. After being diagnosed, I spent the
next six years dancing competitively, staying at the Pediatric Cleveland Clinic, creating
art, traveling abroad and applying to colleges. I never once thought about my shoe
choice because I didn’t need to. Though I would always see others in my support
groups posting photos of shoes that worked for them, and to be honest most were not
versatile enough to wear for specific occasions such as professional or dressy settings.
For the first six years my pain was only located in my upper body, but in the following
years the pain spread to the lower regions. For the first time in my life, I was not able to
purchase shoes based on the fact that they were cute. I am a 22 year old business
student, living in New York City. The typical CRPS friendly shoes were not an option for
me.
I spent the next few months observing and researching shoes that could serve all
purposes. I needed shoes that were equipped for walking, standing, exercising, and
were standard for business, social, and/or dressy occasions. All the while serving relief
for CRPS symptoms. I needed shoes that could handle swelling, hyper sensitivity, poor
balance and support painful legs.
I was successful in finding shoes that fit my lifestyle, and I figure that others may have
the same issues I did when looking for shoes. I have put together a list of my findings
for all CRPS sufferers who are in need of some kicks.
The Top 10 Shoe Brands for CRPS Warriors
1. Teva
Teva sells an arrangement of sandals, sneakers and boots, but their most
accommodating shoe for swollen and sensitive feet are their adjustable strap sandals.
The sandals adjust at the ankle and around the ball of the foot to create the perfect fit
everyday no matter the severity of symptoms.
2. Eurosoft
Eurosoft is made up of mostly fashion forward products; shoes that are meant to be
worn for style, while also keeping you comfortable throughout the day. The shoes are
created with padding in the sole and arch supportive. They offer casual open slip ons for
day to day wear, and also offer wedges for a more fancy occasion. Eurosoft is sold by
wholesalers, but the most convenient locations are Amazon, DSW and [sic] JCPenny’s.
3. Sketchers
Sketchers offer boots and sandals, but their sneakers are worn most often for CRPS.
Sketcher’s sneakers offer light weight technology, air-cooled memory foam, and flexible
soles.
4. Christian Dietz
This brand is on the [sic] pricy side, but if you are looking to make an investment these
shoes will last you years. Their products range from sneakers to dress wear to
orthopedics; allowing all different accommodations. These shoes are incredibly fit for
people who wear braces. Christian Dietz is sold through the store Enslow, which has
been serving the medical community since 1909.
5. New Balance
New balance is a commercial sneaker brand, but has recently come out with NBRx
Performance Foot Health products. These sneakers are categorized by running, walking
and insole options. New Balance connects doctor’s recommendations to certified retail
partners and trained fit specialists to fit you with the right sneaker.
6. Dankso
Dankso has a wide range of products, but the most supportive and specialized shoe for
CRPS purposes is their clog model. Though these shoes are not highly recommended
for walking long distances, they are one of the top shoe brands for people who need to
stand for long periods of time.
7. Birkenstock
The most CRPS friendly products from Birkenstock’s are the slip on Arizona sandals,
and the slip on Boston clogs. These shoes are made to be adjustable and roomy for
cozy socks, and/or in our case for swollen, sensitive feet. These products tend to be a
little pricy, but they are real leather, which does last for a very long time.
8. Ecco
Ecco offers a variety of products, but the best ones for sensitive feet are their slip on
booties, flats, and casual sneakers. This brand has created a feature using premium
materials plus dynamic comfort. They use “next generation platform technology” which
is inspired by nature and old world leather. In case a fancy occasion arises they also
offer low heel pumps with the same comfort technology.
9. Adidas
Adidas is a commercial brand, but they have come out with their Ultra Boost technology,
which are designed to propel you forward while maintaining your stability. They are
engineered to expand with your foot and avoid irritation, and come with rubber soles
that have extraordinary grip for wet and dry surfaces. These sneakers are the favorable
choice for the gym or physical therapy.
10. Naturalizer
Naturalizer offers incredible options for professional shoes; if you are looking for a shoe
with a small lift, that are sleek, durable for walking and standing, than their a top choice.
Their prices have a wide range, but lower prices can be found through their retailers
such as Nordstrom Rack and DSW.
My CRPS story began, like many CRPS stories, with misdiagnosis and despair over my rapidly worsening condition. Abnormal electromyography (EMG) test results led my doctor to conclude that I had carpal tunnel syndrome (CTS), despite several other symptoms that were clearly inconsistent with CTS. I disagreed with doctors, and kept searching for a more accurate diagnosis, which would offer me a solution for all of my symptoms. Meanwhile, my symptoms were spreading and getting worse: neuropathic pain in hands and arms, uncontrollable muscle contraction (dystonia), Reynaud’s Syndrome, chronic fatigue, brain fog, hypersensitivity to touch and temperature.
Once I had a correct diagnosis, which was CRPS, my doctors told me that I had to learn how to live and cope with it. I found it unacceptable. I refused to settle for anything less than a full recovery and return to a normal lifestyle. By chance, I learned about Dr. John Sarno who pioneered a novel approach to treating chronic pain conditions, and that changed everything. The day I finished reading his book, I knew I had a chance to get my life back.
It is a widely held opinion among CRPS doctors that chances of improvements for CRPS patients decrease with age. Due to my age (58 at the onset of disease) I objectively had poor prospects at beating CRPS, yet my story has a happy ending: full remission without invasive treatments or drugs.
My journey is not a story of a spontaneous miracle: I used mind-body approach but was open to working with any mainstream healthcare provider who would support me in my quest – and was able to fully recover.
After my symptoms completely disappeared 4 years ago, I ran several half-marathons, hiked to the top of Mount Whitney and continue exercising by practicing planks and pushups using the very hands and wrists that once were almost entirely incapacitated. I am a firm believer that CRPS can be defeated!
February 17, 1992 started out like any other day. I got up and got ready for work, got my daughter ready for school and then drove my 30 mile trip to work. When I got there I prepared the machines that I operated for the day’s run. The assembly area where I worked was totally automatic and had robots. The assembly line was in a horseshoe shape and products, which were fuel pumps for cars, were sent through the line by a conveyor belt. My line came off of the main assembly line and produced the caps of the fuel pump. This particular morning I had some small parts that were sticking in the track and I had to go to the back of the machine to fix it. After a few times of this running around to the back of the machine I went underneath the conveyorbelt section that connected two of my sets of machines.
As I was coming up to astanding position I struck my left knee on a metal bracket that was located on a support leg of the conveyor belt. When I struck it I at first saw black for a few seconds. As I gotmyself together from that I took a step and the pain was so great that it felt like I was going to be sick of my stomach. And so began my journey with RSD.
I was fortunate that I didn’t have to go to very many doctors before I was diagnosed by Dr. Robert G. Schwartz in Greenville, S.C. I was diagnosed on Jan. 23, 1993. It wasn’t long after that Dr. Schwartz suggested that I attend the RSD Support Group. I was afraid to go at first. I wondered what I would see when I went there because I was a little afraid of what was happening to my body.
I had always considered myself an active person. I was never into sports, but I enjoyed working out and taking walks as exercise. I also had a good job making good money. The company that I was working for at the time sent me to Japan to train. In Japan women didn’t do the work that I did so that was an experience. On return I worked with Japanese trainers to get the line started up and into production. Then I was to train others for the job. But on that day, February 17th things started changing.
Before I went to work there I had worked for another manufacturing company for 15 years. In that job I had worked my way up the ladder from an operator to a coordinator (assistant supervisor). I grew up in this company and I learned a lot. My skills grew and expanded. I went back to school and took some classes that would help me do my job better especially when I moved into management. In my job as a technician/coordinator I had a lot of responsibilities and dealt with many types of people. It was my job to motivate them to get the job done. I also did a lot of writing in this job. I wrote evaluations of employees, training manuals and operating instructions. This training also was used at the other job where I was working when I got hurt. I wrote gauge instruction manuals there. As I look back now to that time in my life I can see I was in a type of training for my future “job.”
I did decide to go to the support group and it turned out to be one of the best decisions that I have ever made. It was good to be around others who knew where I was coming from.
It seems like from the beginning my RSD was a magnet for others whohad RSD. I started meeting people just about everywhere I went whohad RSD. I remember standing in a restaurant hearing an employee telling her manager that she had RSD. Also there was a time that I won a prize on the radio and when I went to pick up my prize, the receptionist had RSD. I would invite the people that I met to the meetings. During this time, my time working was coming to an end. It was very devastating to me when I was taken out of work. I felt hurt and useless. I had always worked and had an income. Plus I valued my work. It is my belief that how I am as a person shows through my work. So my world as I knew it was changing again.
Dr. Schwartz suggested that I use my skills in the support group. He wanted me to get more involved. He said that the group needed help to move on. I thought at the time that he must be crazy. To me, my world was crashing down. I was wondering how could I organize a group when I wasn’t doing so well with my own life.
Thankfully, Dr. Schwartz could see that getting involved in the group would be what I needed even if at the time I couldn’t see it. So in November 1993 I became the new director of the Greenville RSD Support Group. It was just what I needed to do to work on living with RSD. I did find that my skills were needed. They just needed to be re-adjusted to do what I needed them for now. I needed to use these skills to bring me back out of the black hole that I had fallen into. I was viewing RSD as ruining my life because I couldn’t do the things that I use to before RSD. I would do things because I had the mind set that if I didn’t do things like I always would have done them, then I was giving into the RSD. When I did things on a fairly good day I would over do it and pay for it for weeks on end. It finally dawned on me that this was what my RSD liked. My RSD liked that mind set and seemed to escalate with it. It also liked it when I was down. This discovery was an important part of acceptance for me. It taught me that it’s ok to make changes if it allows me to do what I want to in my life. I started looking at my RSD in a different way.
My RSD has taught me some important lessons and changed the way I do things. It taught me how to set priorities in my life. I started making a list on what I wanted to do in a day. I put what I wanted to accomplish the most on top. If I could only do one thing that day it was what was at the top of my list. I also started changing around how I did things. I realized that it wasn’t how I accomplished my goal that matter, but it was the importance of accomplishing it that did matter.
RSD also brought out my fighting spirit. It occurred to me very early on that more education was needed about RSD. Everyone I met would say, “I never heard of that.” I wanted that to change and decided to put some of my focus on changing that even if it was educating one person at a time. This is when it was decided that we needed to form the S.C. RSD Association or SCRSDA. Some were hesitate at first but some believed that we could do it. We made our mission to help educate everyone about RSD. Our first conference was held in September 1994 and so far we have continued to have it annually.
I also discovered that there are some very dedicated people who do their job well. I’ve worked with many different physical therapists since having RSD. Each one helped me to move forward in my journey. Along the way I have become a teacher. Each person who has worked with me learned about RSD. They saw it on good days and bad. They helped teach me how to deal with it one day at a time. I appreciate all their dedication and I feel that I am where I am today with my RSD partly because of them and their willingness to work with me. To keep an open mind and learn in the process. I vowed to them that when they got me moving that I would keep it up and I have. I make sure that I keep moving and do my physical therapy routine at home every day. For me, having RSD and taking care of myself is like having a full time job!
My RSD has also been used to teach others in the healthcare profession. The spreading of my RSD was even used as a learning tool. I am grateful for my RSD to be used in this way because if one person is helped by my RSD being a teaching tool than it is worth it to me.
I know that my training in my past jobs has helped me to perform my “job” with the support group. I have always enjoyed working with people. It’s something that comes natural to me. My journey with RSD has allowed me to be able to help people grasp an understanding of their RSD and what it takes to deal with it. Many tell me that I was able to help them and for that I am truly grateful. RSD has taught me that I end up helping myself by helping others. Running the support group and SCRSDA has been therapy for me. It allowed me to regain in my life what I thought that I had lost. Using this as therapy has allowed me to grow and to re-build my self-esteem and confidence that was so shaken at the beginning. I still have work to do on myself and I will continue to work on myself till the day I die.
Many people ask me “Don’t you want your old life back?” To that I have to answer “No I’m to busy living my life now and I kind of like it.” I understand now that some of my old life didn’t fade away, it was just stalled for a while. As I have improved and continue to improve I am getting back a lot of my old life. It’s just different now. I’m back to working out again, just in a different way. I take my walks on the padded indoor track at the gym. I’m doing what I enjoy when I meet and/ or talk with people who have RSD. It makes me happy to be able to help people feel better and to understand what is happening to them. It makes me feel good to see a person who was scared to have a new sound of hope in their voice or see it in their faces. So my skills from before RSD are used now but in a more profound way. My writing skills have come in handy too. I have some chapters written in Dr. Schwartz’s just released book “Resolving Complex Pain.” I’ve been able to travel some to speak at conferences and other group meetings. I’ve been able to work on RSD awareness by going to Washington DC with other RSDers. We have been able, over the years, to get stories on RSD in the newspaper and on TV. I have connected with other leaders to work together in any way possible to bring more awareness to RSD.
By managing my “good ” days I’m able to get more of them. I’m able to do more with my husband Jack, family and friends. I enjoy my 2-year old grandson, Ethan very much. I also enjoy meeting people with RSD at Dr. Schwartz’s office. I have a strong support system of folks that helps keep me going. I will never give up working on myself or my RSD.
So that is why I say, “I have RSD, but it Doesn’t Have Me”.
This article is for those with CRPS who are searching for a different path to manage the syndrome. The path was filled with many unexpected turns, side roads, road blocks, incredible new people in my life, and constant discovery. Today I am again an avid athlete pursuing my passions of running and swimming, with plans of competing again. I enjoy my three active kids and husband very much. And, I recently went back to work as a family nurse practitioner, a career I love.
It wasn’t always this rosy.
In January 2003, I was diagnosed with CRPS following surgical carpal tunnel repair. For six months I could not cut the food on my plate, do an ounce of housework, cooking, gardening, nor hold the little hands of my children due to severe allodynia in my right hand. Though I had formerly been an avid triathlete, pursuing sport again seemed like a far-off fantasy. The CRPS quickly spread to my other hand. I pursued physical therapy initially. Then, as symptoms worsened and my hands began to atrophy, I sought pain control through a hospital-based pain clinic.
I received stellate ganglion blocks several times, and then moved on to Neurontin® therapy for pain control. I experienced memory loss, fatigue, and felt buzzed all the time. I realized I couldn’t be the mother I wanted to be on that drug, so I asked my pain specialist to wean me off of it. I sought relief from a cadre of reputable physicians, all of whom had plenty of hope for me regarding pain control, but there was no improvement. Muscle atrophy worsened and I decided to try alternative approaches to pain control.
I tried traditional chiropractic care and acupuncture. Both gave me modest, brief relief. Then, a well-trained massage therapist referred me to Travell and Simon’s Myofascial Pain and Dysfunction: The Trigger Point Manual. I read chapter after chapter, realizing that my CRPS was likely associated with many trigger points in my muscles, which gave me enormous pain beyond the terrible burning pain of CRPS. I knew I was onto something big when some of the self-treatments for these trigger points actually gave me a little real relief. I had to find an expert in the field of neuromuscular care who was familiar with CRPS. The problem is that muscles are the “orphan organ,” physicians are rarely muscle specialists, and physical therapists weren’t entirely trained in trigger point release. I wrote to the editors of the myofascial pain texts, asking for local specialists in their field. After numerous letters and emails, I located a specialist relatively close to home. I was cautiously optimistic.
My specialist is a chiropractor trained extensively in the field of neuromuscular care, with an emphasis in muscle trigger point release. After just one visit, I knew I had found a person who could really help me. He quickly referred me to a clinical psychologist specializing in biofeedback for pain control. Working closely and frequently with both of them, I began to have pain relief.
“Run Through the Pain, Jane” The psychologist encouraged me to look at CRPS as a pain pattern which needs overriding, not masking. If I could train my body to override the pain, I would gain control of this monster that had taken over my life. I was advised to start running again. Initially, I was terrified of the pain I knew I’d encounter and which might flare up areas that had improved with my new care. I was told “Run through the pain, Jane.” Basically, I needed sheer willpower to make this work. I was taught to apply biofeedback to running, learning how to recognize the pain signals, then letting go of them through breathing techniques and focusing on different tactile sensations while I ran. It was very painful at first, but, I persisted and found that my level of pain, its speed of onset, and the time until pain was relieved all improved with each run I took. The pain control lasted longer following my runs as I continued to train. I continued to receive frequent trigger point therapy, which allowed me to have less pain as well. I couldn’t have run without both modalities and a huge dose of determination to make it work.
After four weeks of slow but steady improvement, I began to have pain in one leg. Initially we figured it was a recurrence of some former low back pain and sciatica. Later we realized it was CRPS spreading to my lower extremities. Running became too painful, so I was encouraged to start swimming again. Formerly a competitive masters swimmer, I could swim only 100 meters before the pain was too much to continue. Still, I persisted with the encouragement of both of my doctors, applying biofeedback to pool workouts this time and receiving regular trigger point release from my doctor. I also began a home stretching program to decrease the frequency of trigger points. Steadily I improved. After two years out of the pool, I rejoined my former swimming coach and team, with whom I continue to swim today. My chiropractor and I also worked as a team, exploring numerous therapeutic modalities for the CRPS in my legs before we found a method that worked for me in that area. Again, persistence paid off. I began to run again, and, though my legs have suffered some set backs, I am running regularly again and hope to race soon.
I take no pain medications for my CRPS. Natural endorphins and cortisol release when I maintain aerobic output are the “drugs” which keep me comfortable. The nerve signals which transmit CRPS pain are overridden by nerve signals which tell my muscles to perform. I combine daily exercise with a regimen of biofeedback, 30 minutes of stretching one to two times per day, a diet filled with fruits and vegetables, chicken, fish, nuts, and complex carbohydrates, and I take high doses of Omega-3 fatty acid supplements. I see my chiropractor for trigger point release every one to three weeks. Yes, I still have a small amount of pain every day. Occasionally it flares up on me. Yes, it is manageable. Yes, it still scares me at times, and, yes, I am living a wonderful life again, even venturing back to practice as a nurse practitioner
Lessons learned
1. Without a doubt, fear of pain is a principle driving force of pain. The pain is so severe that we become afraid of it. We allow it to control our lives, anticipating its effect on everything we do. We become inactive, suffer atrophy, and the pain only grows. Once I was able to experience even a tiny bit of relief, I held onto that feeling and continually focused on mentally capturing it again and again, no matter what it required. I became more confident of pain control the more often I experienced it. It no longer controlled me. I use these feelings to fuel my workouts, which are still painful and exhausting at times. When anxiety creeps up on me, I seek support immediately, recognizing that I won’t allow myself to slide down the slippery slope of pain and fear again. My doctor is continually supporting and encouraging me.
2. Find an inspiration. Mine was my family. I knew I couldn’t let myself continue to be the mother in pain to my children, nor the wife in pain to my husband. I also dreaded the thought of being that “pain patient” that I had cared for many times in my own medical practice. These inspirations kept me searching for answers, and continue to drive my determination to practice daily self care, which can be exhausting at times.
3. Don’t isolate yourself. Formerly a very social person who loved to entertain, I found I didn’t want friends to see me hurting or unhappy. I knew I couldn’t hold up through social gatherings very long due to the pain. Rather than isolate myself, I forced myself to frequently have friends over, hosting potluck happy hours often. I’d simply pull open my silverware drawer, let someone open the wine, and allow those whom I loved to heal me with their friendships. I found that distraction is a powerful antidote to pain, often giving me several minutes at a time of pain relief if I could relax enough to get caught up in intriguing conversation. A glass of wine helped this process, as did eating wonderful food.
4. Seek professionals who have experience with trigger point release and biofeedback. Those suffering with CRPS develop trigger points frequently. Active release therapy (ART) and spray and stretch methods are very effective. Biofeedback must be done with a professional familiar with pain control. Search online. Write to textbook editors. Network with anyone you know who has experienced chronic pain. Be persistent!
5. Volunteer. Reach out to others. It’s so easy to feel despair and anger when CRPS is present. Force yourself to do something – anything – for others. Just making the elderly lady down the street a bouquet of flowers from your yard or listening to kids read at school gives our minds a good dose of fulfillment.
6. Stay the course. Just recently, I became too confident of my recovery and slacked off on biofeedback. I suffered a setback with a large CRPS flare, and the accompanying anxiety it provokes. My doctor counseled me to get back on course, reminding me that I must work harder at my daily care regimen when I feel good. Everyday I remind myself that I am doing these things to manage CRPS for today. Tomorrow is another day.
7. Finally, believe in yourself and others will, too. Never, ever give up! Now, when I shop for running or swimming supplies and am asked what event I am training for, I say, “I am training for life.”
Travell and Simon’s Myofascial Pain and Dysfunction: The Trigger Point Manual v. 1 (Hardcover) Travell JG, Simons DG. Myofascial Pain and Dysfunction: The Trigger Point Manual. Vol 1. Baltimore, MD: Williams & Wilkins; 1983.
I wrote an article about my personal experience with CRPS that appeared in ADVANCE for Physical Therapists and for Occupational Therapists in 1993. In response to that article, I received phone calls from CRPS sufferers who wanted to talk, who felt isolated and confused about this disease.
I have spent hours on the phone listening, supporting, and giving guidance on ways to deal with CRPS. As a result, I have been sharing my ideas on how to cope with chronic and acute physical and emotional pain.
If those who responded to my last article are representative of CRPS sufferers in general, then we can assume that you had symptoms of CRPS well before you were diagnosed. You probably saw an orthopedic surgeon, a family doctor, a rheumatologist, or a neurologist, and not necessarily in that order. And at first when you eventually learned of the diagnosis, you were probably relieved because finally there was a name for your suffering. Then you assumed that the crazy feeling you had begun to experience, as well as the doubting looks you had been getting from loved ones, could finally be put aside.
You felt dependent on people who didn’t seem to know all that much. You craved information, and hung onto your doctor’s, physical or occupational therapist’s, every word. Yet you didn’t want to hear what you feared was the truth. Maybe you finally found an CRPS specialist who told you to learn to live with it. Somehow, you had not developed the skills you needed to “live with it.” You were overwhelmed. You felt immobilized because this problem erupted without warning: You are innocently living your life and then, Boom! Out of control.
This is the first phase of the predictable life stages that occur with any crisis or change, according to Roger Gould, MD, who wrote Transformations [New York: Simon & Schuster, 1979]. He calls this phase immobilization: Internally, you were stamping your feet, saying, “I don’t want to have to handle this. It’s not fair.”
The next stage is minimization: “Now I have a name for it, so I’ll be okay.” We need this stage so that we can build a “cocoon” around us to help us build up our resources for the long road ahead.
As you moved out of the denial phase, you may have experienced depression, which is based on the reality that you have no way out of this, and coping with it is just asking too much. You feel “down” and unable to move on.
Then you shifted into the frustration phase, acknowledging that you have CRPS and don’t have the ability to change it. There’s an old Chinese proverb: “When you have a disease, do not try to cure it. Find your center and allow for healing.” Or, as Bill Moyers says, “Healing is possible even when cure is not.” When you face the emotional pain of being told you have CRPS and the physical pain of this disease that makes you feel so out of control, try to allow for healing without trying too hard to control that which is uncontrollable.
When you get into the center of pain, when you relax and allow the sensations to take you over, it doesn’t hurt so much. Pain is actually resistance. Bracing yourself merely magnifies the pain. Therefore, try to investigate the pain rather than attempting to eliminate it. Is the pain sharp or dull? Cold or hot? Suppose you could draw the pain? What colors would you use?
Flow with your feelings. Here are some guidelines:
Position yourself to embrace the disease. Even though it may not be true, assume that you will have CRPS for the rest of your life. This resignation may work to prevent you from having to fight so hard against the realities of physical and emotional pain. When you let go and stop fighting, often pain subsides, and CRPS feeds on pain. Isn’t it ironic? It is by assuming that you won’t get better, that you have the best chance to get better. Work through all the aspects of CRPS so that you redefine yourself. “I am a person who lives with certain kinds of sensations, whereas other people don’t have them. I’ll have good days and bad days, but I’ll handle it. I will try to make myself as comfortable as possible and seek out ingenious ways to survive. I will be proud of these creative solutions to a heretofore uncontrollable situation as I define and take charge of the areas where I do have control.”
Some of the solutions might be ways to use pillows to prop your affected limbs, ways to use the TENS unit so it’s not too conspicuous, wearing gloves or using heating pads- whatever works.
Give up what you can’t control. The diagnosis is here, the swelling is visible and not matter how hard you stare at it, and it won’t go away, so perhaps you ought to stop focusing on it. In fact, your morbid fascination with how your affected area looks might cause more trouble.
As much as possible, forget you have this disease in the sense that you need to make your response to CRPS a way of life. Try not to think of yourself as an invalid. Share with people who love you so that you can be nurtured, but try not to milk it too much.
When I say try not to focus on the pain and forget you have this disease, I recognize the contradiction. This means accepting the reality of your disease, then working on letting go of all the resistance, protest and hysteria that impedes your ability to submit to, yet take charge of this crisis in your life. You can’t let go of the feelings until you allow yourself to feel them. Much of what I have said fits into the final stages of Dr. Gould’s sequences of change. Eventually, you get to acceptance of reality. You can now say, “I have CRPS.” Then you ask, “Now, how am I going to live with this disease?”
This is the testing phase. “I wonder what it will be like now that I have to use a cane to walk?”
The next phase is searching for meaning. “Now that I have accepted that I have CRPS and I’m learning ways to deal with it I want to see how to make sense out of why this happened to me and how it will affect my view of myself. Maybe I’ll write a book about it to help other people. Maybe I’ll start a support group. Other people have handled this; I guess I can, too. I will have a unique way of handling it.”
The last phase is internalization, when you incorporate the change into your behavior and your perception of the world, the point where you have worked through the conflict. You no longer have to concentrate, test, question or marvel over your condition. Instead of feeling defective because of CRPS, you can now say, “I need special aids to make myself comfortable. I am unique in that way.”
Please consider psychotherapy–it can help in terms of adjusting to the stress of this disease, learning why you might have resistance to coping with pain, and other problems that may erupt in your life as a result of the isolation and rejection by others.
You may have had some problems before the CRPS that are now coming to the fore. Your personality may be the type that inhibits healing. Perhaps you haven’t been tested like this before. Your coping mechanisms aren’t working the way they used to. Look for other areas in your life where you have difficulty giving up control.
It’s okay to be angry, but then you need to move on and take joy in the way you’ve adjusted to the situation. If you remain stuck in the angry, frustrated, self-pity place, then you should consider psychotherapy.
In general, those who can accept the fact that all is not lost if things don’t go their way are most likely to reach the internalization stage. By understanding the process you go through when faced with any crisis, you can say, “I’m depressed right now. This is where I need to be at the moment so I can work through all the feelings I am to experience and eventually I can go back to living a normal life.” The more you allow yourself to flow with the inevitable emotions involved in change, the more your self-assurance emerges and the greater your ability to confront unavoidable stresses of life, including CRPS.
Phyliss Shanken is a licensed psychologist in Pennsylvania and Director of Psychological Services of INTROSPECT in Montgomery County in Colmar, Pennsylvania, a psychological/psychiatric practice facility. She also maintains a private psychotherapy practice. For more information about Phyliss Shanken, click here.
Jennifer has been living with CRPS for 24 years. In her 24 years with Complex Regional Pain Syndrome, she has learned a lot about herself and about the nature of CRPS. How can her experience help you? She created 24 tips to help you!
As I just entered my 24th year with Complex Regional Pain Syndrome, I’ve realized I lived with this disease for well over half of my life.
I’ve had the “benefit” of being a child with CRPS and just wanting to move on in life. I’ve suffered the “disadvantages” too and had to end my career in my mid-thirties.
My CRPS gave me 8 glorious years of remission. It’s also taught me it doesn’t always stand alone, and I’ve had to learn a lot about Autonomic Dysfunction (or Dysautonomia) rather quickly.
I figured in honor of my 24th year, I’d put together 24 tips, tricks or lessons that could help someone else.
They are as follows:
As early as you can, desensitize yourself. It hurts in a way I can’t describe but once you make it through, you get some freedom back for the rest of your life.
If you spread or think your spreading, treat it like a brand-new injury.
Don’t be scared of spreading. It’s going to happen or it’s not. Your nervous energy is only going to make it happen or have it happen quicker or more advanced.
I feel our job during a spread is to Accept it, make your necessary Adjustments/Accommodations and Advance forward.
Start a Gratitude Journal. Write down five things you are grateful for each night.
A good doctor is there to work with you. If you’re unhappy or don’t agree with your treatment plan, find another. It is one of your most critical relationships so make sure it’s solid and respectful from both sides.
Be smart. Personally, I know I’m not with a doctor that has my best interests at hand if they’re wanting to implement multiple spinal cord stimulators. I’m also not with a doctor that’s good for me if they want me over medicated.
Have someone to talk to. I think it’s helpful to have a professional that knows about chronic pain but you know what works best for you.
Don’t be afraid of anything that can assist you. Get a handicap placard if it means you’ll go out more and participate in civilization now that you don’t have to walk so far.
Call the RSDSA and ask for the “I have CRPS” wallet cards. Work on spreading awareness. I had some in my wallet and in my car for years. They’ve been extremely helpful.
Always keep the “Emergency Guidelines for the CRPS Patient” and the “Hospital Guidelines for the CRPS Patient” printed out and stored safely home. They can be found on the RSDSA’s website under publications.
Be upfront. You don’t need to fear the Emergency Room. I always go with the documents above, my medical records, pictures of my CRPS and let the attending doctor look online at my prescriptions through my pharmacy. I also don’t go there for pain management. That’s why I see my pain doctor monthly.
Read “Systemic Complications of Complex Regional Pain Syndrome” by Robert J. Schwartzman, M.D. published in 2012. Become familiar with other issues that could come along with CRPS.
If you’re on Facebook, the RSDSA is listed under “Support A Nonprofit.” Add them to your post and help them in raising money and awareness.
I know I’m an odd patient, but I try to live as normal as I can. I get an IV twice a week and my blood pressure taken at least 4 times a week. To me, these are things that need to be done to keep me alive. Mindset is huge with me and my CRPS.
With that said, I believe that I’m going to be in pain anyway, I might as well do something.
On the flip side, I’d rather have pain from doing something than from doing nothing at all. In a strange sense, I feel like I earned it so it’s easier to fight.
For me, distraction is key. It can bring my pain down. My animals can do the same.
Being online in high Pain moments isn’t healthy for me. It’s putting too much into my pain when I’m in support groups and it’s also putting too much into other people’s pain. You should evaluate your pain levels if you’re spending a lot of times in groups.
I know when I get grumpy it’s either time for medication, rest or something to get my pain level back on the scales. It’s not my personality and I know when I see that version of me, I’ve gone too far.
Our loved ones have a grieving process to go through as well.
You should look for and read “The Spoon Theory”.
You’re never alone. You should know that 1 (800) 273-8255 is the number for the National Suicide Prevention Hotline.
I’m always around if you would like to add me to Facebook.
None of asked to be thrown into this crazy world. We all learn little “helpers” along the way. I hope some of mine resonated with you. I know I’m going to be in pain regardless, I at least try my best not to be miserable. It’s a conscience decision that I make day after day. Twenty-Four years later, I’m still at it.
Jamynne discusses a potential co-morbid condition of CRPS- Dysautonomia. How does this impact her life? How did the treatment of CRPS impact this condition? What does she do to make the most of each good moment? Find out what happens when treatment provides hope for a better day, but makes some of your days more complicated.
Yesterday, I was feeling brave. I was feeling invincible. I was feeling like I “could.” And so, I did. I grabbed the car key, put it in the ignition, put it in “drive,” and went. I just went. I think I drove a good 20 miles. Admittedly, it was tough at times to see the road through my tears, but I did it. I wasn’t alone. I had My Person sitting beside me acting as my co-pilot. But I did it all the same. On my own. Not a big deal, right? Wrong. Here’s why.
For the better part of 2 years, I haven’t been able to drive at all. And for a year before that, it was limited to sunny days and clear weather. CRPS and Autonomic Dysfunction had robbed me of my ability to see well enough to drive. It’s also taken my ability to read fine print, menus in a restaurant, and even the medium-sized font on this laptop. Over the last few years I’ve consistently had to make the font bigger and bigger, just so I can see it. In restaurants, it’s not unusual to have to ask for help figuring out what I want. Not because I can’t make a decision, but because I can’t read what’s on the menu. I’ve been relegated to the house unless My Person is home for the majority of the past two years. Most days that meant sitting on the couch and listening to the TV. It’s a large screen so I can see most of it, but looking through my eyes and trying to see what I see is often like putting 20 window screens together and trying to look through them clearly. It’s shady, the colors are dull, and there’s absolutely no clarity in the details. When I’m having particularly rough days, I can lose my sight all together. Everything goes black. That can last anywhere from 10-15 minutes to several hours. Imagine being home alone when that happens (that’s an estimate because I can’t see my watch, nor can I time it). Then, without rhyme or reason, it’ll improve, though never to the point where I’ve been able to feel comfortable getting behind the wheel of a vehicle. It’s terrifying. That is, until yesterday.
Autonomic dysfunction or dysautonomia is a condition in which the autonomic nervous system does not work properly. It can affect the stomach, bowels, bladder, pupils, sweat glands, cardiac function, and blood vessels. It can cause you to pass out without warning. It affects your ability to regulate your body temperature. It makes you intolerant to weather change. Gastroparesis leads to severe bloating after meals, as well as the ability to keep what you’ve eaten… down or in. It affects the bladder in terms of having the constant urge to “go” even if there’s nothing in there to pass. Your resting heart rate can be fast. My heart rate has been known to get up into the 130’s without exertion, which can be very uncomfortable at times. Lastly, it can negatively affect your vision- sometimes robbing you of it completely. I live with this every day. It’s a tough disease and it’s very difficult to manage. And like CRPS, there is no cure. The prognosis is difficult to predict as it depends on several different factors within the central nervous system; where it’s progressing, how it’s progressing, what organ systems it’s affecting, etc. Because of so many “unknowns,” autonomic dysfunction can be fatal due to either acute respiratory failure, pneumonia, or sudden cardiac arrest. When I tell people that I feel like each moment is a gift, it is no exaggeration. Treatment is difficult and like CRPS, it’s often like trying to find a needle in a haystack. Because it’s made up of so many different symptoms, the goal is to find various drug therapies to manage them. What I’ve been battling is considered “severe” by my doctors and I’ve recently begun my second round of IVIG plasma infusions in the hope that it can make a difference in my symptoms. This came about, we believe, from the inconsistency of care that I received for my CRPS. Because I am a worker’s compensation case there was no care rendered, at all, at the beginning of my diagnosis. The CRPS ultimately proved to be systemic and along came the autonomic dysfunction. I received my first IVIG treatment back in 2016 for 5 consecutive days a month. For 9 months. My neurologist hoped that the first thing it would help was my vision. Sadly, that wasn’t the case. While it helped with some of my symptoms, it didn’t ever touch the vision. Two years later, I’ve had one round of 5 consecutive days and while it took tons out of me, the side effects are horrible.I really struggled with even wanting to continue. 3 weeks after the first round this time, I’m driving. I’ve got two more months of 5 day treatments before going back for my reevaluation in July and I know each month is going to be rougher than the last. But I have hope and while it’s not a guarantee of anything, I’ll take it. For now.
Chronic illness, CRPS, autonomic dysfunction, and everything these diseases entail is extraordinarily isolating on its own. If pain levels are high, you don’t go out. If you’ve used up all your spoons for the day (love that Spoon Theory), you know you’re on the couch possibly for the next 2-3 days. You can’t go out with friends. You can’t meet them for Happy Hour. And in my case, even if I was feeling up to it, I couldn’t go because I couldn’t see well enough to drive. Uber had become my best friend at times, but it’s not the same. And honestly, if your friends aren’t coming to see you, if they just don’t understand your disease and they don’t see the need to come sit on your couch with you, you’re completely on your own. I’ve always been social. I’ve always had people to hang out with. Always. Until I got sick. We forget that even when our lives stop, theirs doesn’t. They go on without you and most times, I don’t think they know how hurtful that can be to someone who has been relegated to looking at life through their own rearview mirror. It’s tough stuff. But yesterday, I drove. And I’ve got to say, they were the best 20 miles of my life.
I don’t know how long this period of “clarity” will last. I could wake up tomorrow and be right back where I was last week. But you know what? That’s okay. For this moment in time, I have the choice whether or not to drive my own vehicle. And that’s HUGE. Before I got sick, I was a 12-handicap golfer. I rode a beautiful Harley. I was a proud paramedic who loved every part of her job. I played softball. I was active in my life and in the lives of others. I traveled. A lot. I lived for experiences. I loved the journey regardless of destination. My life was full. It was almost complete. That was then. CRPS and autonomic dysfunction has taken a lot from me, but yesterday, with the love, support, and encouragement from My Person, I took a small piece of that back. As we pulled into our driveway she looked at me, smiled, and asked: “So, how did it feel?” I thought about it for a moment, and then I thought some more. I’ll tell you what I told her. Driving is like riding a bike. You never forget how to do it. On the other hand, I feel like a teenager who has just gotten her license. It is a feeling of independence and excitement that I hadn’t felt in a very long time. I don’t know how long this will last. It could all change tomorrow. But if it does, I know I’ve got an amazing co-pilot who will take over if needed. And until then, I’m going to celebrate the hell out of this. One mile at a time. The only rearview mirror I’ll be looking in, is the one attached to my windshield.
I start my second round of IVIG in a few days. I know it will most likely bring me to my knees. But I’m going to keep doing this for as long as I can. The payoff? The set of keys hanging by the front door. They’re a ticket to an independence and a freedom that never meant more to me than right now this very minute.
They say it’s always darkest before the light. No truer words have ever been spoken.
By Guest Blogger Jennifer Ginsburg
By Guest Blogger Jamynne Bowles