Category: RSDS General Info

Written by Isabel and reposted with permission on the RSDSA blog.

My 17-year-old son broke his leg at football practice the summer before his senior year of high school. The X-ray showed a broken fibula in two places and one of the pieces of bone was pinching the peroneal nerve. The orthopedic surgeon was concerned about foot drop because of possible damage caused to the nerve. He warned us that foot drop might still be present even after surgery to repair the fibula. Foot drop would require our son to wear a brace on his ankle for the rest of his life. Little did we know then that “foot drop” would have been way better than the CRPS he ended up with.

Immediately after the surgery, pain spiked even more than he had in the four days waiting for surgery. Our son, Austin, was in excruciating pain. The hospital discharged him with a cryo ice machine to help with the swelling and a prescription for pain killers that is normal for a fibula repair like the one that he had done. Four days after surgery, the surgeon reached out to us to check in on Austin and how he was doing. We told him that he had been in constant pain and could not get off the couch without assistance and that the foot was discolored (pink). The surgeon instructed us to bring him in to his office. He diagnosed the color change from the calf down to his toes and touched his foot lightly and then applied a little pressure on the foot’s affected area. In both instances that the foot was touched the response was the same. The pain was excruciating for our son. The surgeon informed us that Austin most likely had RSD (Reflex Sympathetic Dystrophy – another term for Complex Regional Pain Syndrome aka CRPS). Austin could not put any weight on his leg. He was bedridden, but more like couch ridden. He required help for everything including getting to the restroom and bathing. The surgeon made a referral for Austin to see a pain specialist.

Twenty days after surgery, we visited the pain specialist. We were so excited to learn this doctor studied CRPS at Harvard. We could not believe in our small town we were able to find someone with knowledge about this disorder. The doctor explained how painful CRPS is and compared it to the pain an amputee feels. He planned out six sympathetic lumbar nerve blocks over the next several weeks. Each block provided a few hours of relief and at this point we were grateful for every minute of relief. We had him doing physical therapy three times a week and we scheduled those close to the nerve blocks so he would have less pain and more mobility. The doctor also started Austin on Gabapentin. The dosages were increased to the max of 1800 mg a day. The pills helped with some of the electric shocks he would get however the side effects were less desirable. Austin was “foggy,” and unable to answer questions or remember simple things. He was still unable to put weight on his leg and so he was confined to the couch. He could not even have the ceiling fan on because he could feel the pulse of the fan blades blowing air on his foot. The air waves hitting his foot would cause throbbing pain. We made a box so he could put his foot inside to keep the air waves from causing him any additional discomfort. His leg was purple and swollen. The hair on his leg would hurt him. A sheet touching his skin was too painful. We made a box over his leg so he could have a sheet on his body at night. He could only move around with help or crutches. His skin temperature was hot and he would be sweating even if the temperature was cold. Sometimes it was just his leg, other times it was his whole body.

After the six lumbar blocks were completed, the pain doctor (the “Harvard CRPS specialist”) wanted to take a “wait and see” approach to our son’s care. We tried to follow his advice, but our son was in so much pain. We began to research alternative treatments for CRPS. We asked the doctor about ketamine infusions. He was completely against it. We felt we now had to put our son’s care in our own hands as we could not see him in this pain.

Against the pain doctor’s advice, we scheduled our son for two weeks of ketamine infusions. The infusions were all day outpatient. Our son slept through most of the infusions and we were grateful he could sleep. The dosages were increased and his pain diminished from a 10 to a 7-6 on the first day of treatment. That was the first time in months that he was able to sleep in his bed. As the ketamine infusions continued and the dosage increased, the pain kept dropping. We able to get it down to a 5-4 on the pain scale. The ketamine infusions were not covered by insurance and were very expensive. As parents we did everything we could, using our savings and taking out a hardship withdrawal from our retirement account to pay for all of the treatments that we did to keep our son from being in the pain that he was in. Eventually after many appeals, our medical insurance reimbursed us for part of the ketamine infusions.

Austin continued to do physical therapy and aqua therapy. The aquatic therapy pool was an hour away. We would drive there three times a week. It was the only time we could see our son “walk” again without assistance while in the water. I broke down in tears every time. These therapies were giving him some more movement but he was in a lot of pain. I did a lot of research and tried acupuncture for two months as well. Austin did not feel much of a difference. I continued to search for more treatment options. My husband and I felt we were racing against a clock because the best chance of remission from CRPS is within the first six months to a year. At this point we were almost five months in and he was still unable to walk without crutches. Our search led us to stem cell.
 We found facilities that were in Florida and very expensive. Luckily I came across a physician locally who had just opened up a functional and regenerative practice. I contacted this doctor and he had been a pain doctor and was tired of masking people‘s pain. He was familiar with CRPS, but asked us to wait until he could learn more before treating our son. It just so happens he was set to attend a seminar for physicians treating CRPS with stem cell. I could not believe the luck and so we waited.

I will mention this doctor’s name because I believe he was Godsend to our family. His name is Dr. Jonathan Tait and his practice is in Oro Valley, AZ. He ended up doing two procedures on Austin a few months apart. Both procedures were stem cell transplants (from Austin’s hip) and PRP (Platelet Rich Plasma). Since Austin’s CRPS was a result of a major nerve injury, we felt targeting the site of his nerve injury with stem cells could repair some of the damage. The doctor injected the stem cells into the myelin sheath near the injury site. Prior to these treatments, Austin’s entire foot was where he felt the majority of his pain. He had numbness and shocks in his calf near the injury site. After the procedures, Austin’s pain decreased and the numbness and shocks were less. It was a turning point. The pain doctor was against this procedure as well and probably many people with CRPS would be afraid to have needles injecting into their area of pain, however it was a risk Austin was willing to take due to the pain he was feeling and frustration with his inability to walk and live his life.

Austin reported feeling a difference and his rehab was moving in the right direction. Dr. Tait recommended Hyperbaric Oxygen Treatment (HBOT) to help with the stem cell growth. I had read this had been helpful for people with CRPS. There was a clinic offering HBOT treatment about an hour away. This was also an expensive treatment not covered by insurance. Within three HBOT treatments, Austin’s pink/purple leg began to look normal. After seven treatments, both his legs were the same color and size (not swollen). He completed many treatments (45) at the clinic, however to cut down on costs, we purchased a home HBOT. He uses the home HBOT daily and it finds it very helpful.

Dr. Tait also wanted Austin to not be reliant on pain pills or Gabapentin. It was this physician who helped us come up with a plan to wean him off of these drugs. Dr. Tait also wanted Austin to change the way he ate. We had read before how certain foods (sugar, pork, etc.) can cause more nerve pain and so we figured let’s do this plan! The doctor had him tested for food allergies and sensitivities and put him on a strict plan. Again, pain was reduced and other symptoms he had been having were also reduced. Austin had a lot of digestive issues after starting the Gabapentin. The diet helped with this as well.

After all of this, our son was still mostly homebound and only able to go to school for a few hours a day. This was his senior year. He had been a popular kid with lots of friends. He was on the football team and his hopes for an athletic scholarship were out the door. He was unsure if he would even be able to complete the 12th grade and graduate. Socially, it was very difficult. Many friends came by when he had initially broken his leg. When he was diagnosed with CRPS, friends seemed to dwindle down. People just do not understand the disorder and level of pain. Eventually only a few friends checked in and visited. It broke our hearts to see how a happy 18-year-old boy with his whole life ahead of him was now depressed, in pain, and alone with the exception of his family. There were many nights he cried and shouted, “why?!” As parents, we felt the same “why?!” We feared for him. We were afraid he was going to commit suicide. We put him in counseling even though he did not want to go.

So now he is seven months into CRPS and we kept searching for a cure. Now, I know there is no cure but I prayed every day for one, I still do.

I saw on the internet some had success with Calmare. We showed the testimonials on Dr. Michael Cooney’s website to my son. It gave him hope. He was still weaning off the Gabapentin, but this gave him motivation to wean off since you cannot be on nerve medications for Calmare treatment. We set up flights and hotels for a few months away to go to New Jersey for Dr. Cooney’s Calmare. We prayed this would be the cure or at least the path to remission. Our son graduated high school. We had dreamed of him walking across the stage to get his diploma, walking without a thought of pain, but that was not the case. He walked with a cane and he had pain but we were so proud of everything he had overcome.

June could not come sooner. The flight was so difficult as the air pressure causes someone with CRPS a lot of pain. He was still using the walker or crutches to get around. He was unable to wear shoes! The only shoes he could wear on his CRPS foot was a diabetic slipper. It has Velcro straps allowing it to have more room, but he still had to apply a ketamine cream or a lidocaine patch to numb the top of his foot. Socks were hard as well but he could tolerate a fuzzy sock. We arrived and met Dr. Cooney the next day. This man was another angel in our son’s life.
Dr. Cooney explained the scrambler therapy to us. I would have never thought something like this could help anyone but when you are desperate you are willing to try it all. As a family, we were desperate and we deeply wanted our son to live without this pain and be able to walk! The treatment was painless. Other than the doctor touching his foot, which any touch was uncomfortable, the electrodes do not hurt. They emit a painless signal. The first few days, there was not much decrease in pain, however Austin slept a lot which was unusual. The doctor was determined to help Austin and would change up the placement of the electrodes each day. Finally a few days later, Austin reported feeling less pain and being able to touch his foot. We located a HBOT clinic in the New Jersey area and he continued with this as well.

After a week with continued improvement, we asked the doctor if we could double up on treatments. He agreed as Austin was showing improvement. When Austin completed the Calmare treatment, he could wear shoes and did not need a walker or the ketamine cream or lidocaine patches on his foot. He could even touch his foot. It was for us, a miracle! For the next month, per Dr. Cooney’s instructions, he had no physical therapy and had to simply REST. This was scary advice to follow as we were afraid he would regress, however we had Austin follow the advice. He was in almost no pain. He was at a level 2 to 4. He could walk unassisted! He was slow but he was walking. After a month of rest he started walking on a treadmill on a daily basis and increased his level of activity. He also started going to collage two days a week so that also helped to get him walking and back to a normal routine.

After a few months some pain started to come back. As per Dr. Cooney sometimes a calmare booster is needed to settle the effected nerves back to their normal state. Luckily for us we found Dr. Wade in Glendale Arizona only 2 hour away. We took him in for a Calmare booster, three treatments. Austin’s pain was now down to a 1 to 3. The last Calmare booster was over a year ago. I am happy to report that Austin is in remission, not cured but not in pain. He worked up to wearing various shoes and he was able to do this by using a tub of rice and immersing his feet in the tub for 10 to 30 minutes a day for desensitization. He continued on the treadmill and was in such great shape he went snowboarding various times last winter. Snowboarding was his goal and it was tough to get there. The boots are painful and he knew he had to get used to shoes and improve his stamina and balance. He worked hard every day using snowboarding as a goal and his hard work paid off. Austin’s rehab was almost four hours a day. It included two hours HBOT (home chamber) and two hours of treadmill, exercise bike and weights. He also did the rice desensitization daily until he felt he did not need it.

CRPS remission is not like a cancer remission. There are still occasional shocks and a lot of stiffness, especially in the morning. Austin gets up an hour earlier and sometimes uses a cane until he does not feel stiff. He can finally sleep in his bed with sheets but he wears a fuzzy sock on his CRPS foot because though he does not feel pain, the sensation of sheets feels awkward. Weather also impacts him. Cold can cause more joint stiffness.

Every CRPS case is different and what works for one person may not work for another. This story is what helped my son.

There are things I wish we would have known from the beginning and so I hope my son’s story helps someone out there. Here are some tips I wish I would have known:

ICE and cryo are detrimental to nerves and bad for CRPS

MOVE – It hurts, but keep moving as being immobile makes you more immobile

Go to physical therapy (PT) as early as you can. Every little bit will help you get further. Water PT is even better!

Try to not rely of walkers or wheel chairs. Do your best PT to stay mobile.

Counseling – If you are in chronic pain and depressed get help, talk to someone

Pain pills and Gabapentin – In our case, we wish we could not have used these at all or as long as he did. If you can, try treatments like Calmare and HBOT that are painless before medications. This is a personal choice but it is one of the biggest regrets I have.

Consider diet changes and research supplements. Austin takes fish oil, R-lipoic acid and B-Complex (for nerve health), tumeric (anti-inflammatory), vitamin C (for no CRPS spread or recurrence) and Neuro-Mag (magnesium- calcium channel blocker).

If a new surgery is needed for an unrelated condition, take vitamin C before and after surgery (50 days total – we use 1000 mg time released). Also read up on anesthetic protocols to help prevent CRPS spread. A ketamine infusion during surgery and an epidural could help as well. Consult with your doctor and the anesthesiologist prior to any procedure.

If you are a caregiver or loved one, be understanding of the pain your loved one is feeling. Be supportive and be present. Our son was a teen and when we should try to let him be more independent we were babying him. We learned to stop asking all the time about his pain. Asking about pain reminds people they are in pain. As he got better, we tried to give him chores he could do and allow him to be more independent even though we wanted to coddle him.

Other therapies that Austin thought were helpful were mirror therapy, Epsom salt foot baths, rice tub for desensitization, and red light therapy.

Occasionally Austin feels shocks in other parts of his body, but it has not spread. He gets up and moves around and it goes away. Do not stress about it, just move!

As difficult as this CRPS situation was for our son and our family, we were fortunate to find some great doctors. We thank:

His surgeon Dr. Ty Endean. We are grateful for his quick diagnosis as a delay in a proper diagnosis can be even more detrimental to treatment or possible remission.

Dr. Jonathon Tait for his dedication to treating our son and his compassion and genuine care for Austin’s best health. This doctor is one of a kind and a blessing to anyone in his care. He believes in looking at alternative treatments for rare conditions and overall health.

Dr. Michael Cooney for his knowledge of CRPS and expertise in Calmare and helping patients worldwide.

Dr. Ryan Wade for his knowledge of CRPS and Calmare treatments.

Dr. Carol Henricks for her Hyperbaric Oxygen Therapy Treatments and understanding of CRPS.

Please consider making a donation to RSDSA today!

RSDSA has received many requests for dentists, workers comp attorneys, and disability attorneys who know and understand CRPS.

If you have a reputable dentist or attorney who works with CRPS Warriors, please share this information to help others.

Please consider making a donation to RSDSA today!

Written for the RSDSA blog by Elyssa Weiss.

My story is nothing short of a miracle, I do say that very humbly, please know. I have Grace I hardly deserve.

On Christmas Eve 2015 I fell asleep and somehow crushed my brachial plexus and then went into a coma. I was not under the influence of any alcohol or substances and I say this because it is hard to believe. I was also not heavy at this time. Evidently the crushing of my brachial plexus caused Rhabdomyolysis. I had liver, kidney, and heart failure. My brain swelled and I had double lung pneumonia. I also had three pressure blisters on my leg and feet that were 4 x 4 inches. 16 hours after I woke up from the coma, I had a heart attack. I was 42 years old.

This sounds awful, but I see it as the best thing that ever happened to me. I could not lift my left arm, nor turn over my hand for almost two years.  The neurologist after the EMG told me I would never lift it again, but I can now! I am not sure if the original brachial plexus injury caused CRPS II or if it was the EMG. In addition, a wound doctor told me that I would need my feet amputated. After seven months of wound care, I still have my feet and just scars on my leg and both feet.

After my first occupational therapist gave up on me, I found a doctor who specializes in brachial plexus injuries. He said it was unethical not to continue occupational therapy. That therapist stretched my arm, did mirror exercises and everything in between with desensitization therapy and strength building. I owe her my use of my arm and prevention of getting a nerve graph or nerve replacement surgery.

I think almost a year, but not quite after the coma, I got the diagnosis of CRPS. I sought out many modalities of treatment. I tried Gabapentin, Lyrica, Cymbalta and some Doxepin and Nortriptyline over the years, but none of them worked. I also tried the spinal cord stimulator trial, but it did not seem to help me a lot. The doctor I went to at the time said if they put it in they would have to break some bones in my back to put it in permanently and he would not recommend it because this one was not MRI compatible. I now know there are many others out there that are.

I tried ketamine at the end of 2016. While I live in Georgia, there seemed to be a long waiting list, so I traveled back to where I was raised and saw Dr. Macler. Him, his wife and his staff saved my life! As side note, I inherited clinical, very bad depression from my mother who had electric shock treatments 11 years before I was born. I had been suicidal since age three. I had no idea that ketamine worked on this as well, as I was getting treated for pain. It did transform my perspective and therefore my life.

But ketamine alone was of course not the whole picture, as no one thing ever is. I have seen a pain management therapist in Georgia since 2016 and he taught me how to live! I learned many alternative ways to deal with pain and reduce stress, as of course this affects our Sympathetic nervous system. Deep breathing (how simple!) helps tremendously. I used to hold my breath all the time, but not anymore. I practiced meditation with the deep breathing and also did some Biofeedback, which made me very aware of when my stress increases. I feel more fortunate than others, as I twist every negative into a positive.  I know within 10 seconds when a situation or something is stressing me; my arm turns up on the dial tone as I describe it. Most people get stressed and do not realize for hours or longer where they experience pain in their body, but I know immediately; how lucky am I.

Please do not get me wrong. I do have severe pain daily, along with a plethora of other conditions, especially throughout my entire GI tract, which stops me in my tracks. I am also fortunate to see a physician in Georgia who has worked with CRPS patients for over 37 years including his time in medical school. I did have an intrathecal pain pump implanted in 2017, but I just have Bupivacaine and Clonidine in there as I did not want a narcotic. I am not sure how much this helps really. They wanted to add Prialt, but I did not want to risk the side effects. I also have had Stellate ganglion nerve blocks, but I do not think they helped very much either.

I will not go into all of the details of where pain is in my body because it is not necessary. I learned, for me, pain never killed anyone, disease does. That is what I tell myself. I also believe mental pain can be much worse. I choose to not describe my pain as excruciating, although it may be, because if I change the words to describe my pain, my brain or my thoughts do not focus on it as much. The allodynia is awful, as sound and loud vibrations are not my friend. I do have mottling all over my arm and when I went to the Mayo Clinic in Jacksonville, Florida for GI and then pain, the five doctors stated if they saw me in an airport across from them they would know I had CRPS.

I have learned to laugh a lot and use distraction to deal with the pain.  Mainly I know my purpose here is to get out of my own way, pay it forward, be loving and I do not judge anyone because I do not know what shoes they walked in. Helping others is the best cure to any of my ailments if I can balance that with self-care, which I struggle with. Sleep does not come easy and rarely occurs since the coma. This vicious cycle does increase pain, but if I do some of the alternative methods I mentioned above, I can rest.

This is just part of my story. I am grateful every day. I enjoy the in between moments. My tweaked perspective is nothing short of a miracle and therefore this was the best thing that ever happened to me. That is how I choose to look at it!

Please consider making a donation to RSDSA today!

Written for the RSDSA blog by Maya S.

Hi! My name is Maya S. and I am sixteen years old. Shortly before my tenth birthday, I began feeling severe pain in my right foot, but I had not had any type of injury. In just a few weeks, I became unable to walk, wear clothes on my foot, or attend school. The pain that I felt prevented me from sleeping by keeping me up all night. I saw many doctors and underwent a battery of tests, all of which indicated that nothing was physically wrong with me.

I was lucky to receive a diagnosis very quickly. Just three weeks after I began feeling pain, I was diagnosed with CRPS. I was relieved to finally have an explanation, but also terrified to be diagnosed with a rare neurological disorder with no cure. My parents were beside themselves with worry and I lived in a state of fear.

My condition continued to deteriorate rapidly, to the point where my best treatment option was to leave the comforts of home in New York to attend the Pediatric Pain Rehabilitation Program (PPRC) at Boston Children’s Hospital. The first few days at the PPRC were incredibly difficult and exhausting. I had been told that I would need to push through the pain to regain my functioning and retrain my nerves, but I did not anticipate how hard that would actually be. Each day at the PPRC consisted of eight hours of physical, occupational, and psychological therapies. The staff were very supportive and encouraged me to keep pushing myself and focus on my daily accomplishments. During my time at the PPRC, I learned many coping skills to manage my pain. The most effective ones for me were to distract myself by talking to people, playing with therapeutic putty, or spending time with family, friends, and my puppy. Four other kids attended the program at the same time as me, and we had many group therapy sessions together. Being with other kids who had CRPS and understood what I was going through made it easier. We became close and supported each other in the recovery process.

Although I was exhausted after each day of the program, my day was far from over. I was assigned two hours of home exercises each night that involved various physical therapy and occupational therapy activities. However, my hard work paid off! After four weeks at the PPRC, I had regained a substantial amount of my ability to function in daily life. I was now able to walk, wear clothes on my foot, sleep through the night, and even dance again. I graduated from the program and was thrown back into the real world.

My return to normal was anything but. I had missed three months of fifth grade and now needed to take breaks several times during the school day to manage my pain. Administrators at my school graciously gave me access to an empty conference room that my family and I referred to as the “coping room”, in which I would spend half of my day because I could not handle the classroom environment for long periods of time. My CRPS had impaired my ability to concentrate significantly, and even completing the simplest assignment was difficult. It was devastating to not be the student that I once was.

As difficult as this transition was for me, I was able to complete fifth grade and had my first pain reduction that summer after living with level 10 pain for almost a year. Over the next few years, I continued to return to my prior quality of life and my pain slowly subsided. I started spending more time with friends, returned to many dance classes, and my academic abilities improved. I would not become pain free until three years after I was diagnosed, but I had fully gained my life back.

An aspect of CRPS/RSD that I wish others could understand is the emotional impact that it has on a person. As a fifth grader, none of my peers could truly grasp what had happened to me just as I had difficulty accepting it. Returning from the PPRC, I did not want anyone to know where I had been or what I was going through. I did not think that anyone would understand my situation and was worried about what they would think of me. It was frustrating because I looked fine and functioned normally, but inside I was still in extreme pain. My classmates, family, and friends would tell me that I was doing great, but I felt far from it.

The best advice I could give to others who are fighting this incredibly difficult condition is to remain hopeful and keep fighting! There is power in having a support system and meeting others who understand what you are going through. Keeping in touch with other kids that I met through treatment was very meaningful for me. Also, I saw a psychologist who specializes in chronic pain, and talking to her always made me feel better emotionally. She helped me to develop more coping and self care skills that I still utilize today.

My experience with CRPS affected me in so many ways and completely shaped the person that I am today. For one, my CRPS changed my entire perspective on life. Every day that I am not in pain is a good day. I have become so much more grateful for the little things, like being around my family and friends. Additionally, daily challenges became much more manageable and even enjoyable. The persistence that I learned through my treatment is something that I apply to any adversity that I now face. Lastly, I developed an interest in neurology and became inspired to help others dealing with CRPS/RSD.

Two years ago, I enrolled in a science research program at my high school with hopes of making a difference for those affected by chronic pain. For my project, I created a survey for parents/guardians of children and adolescents with CRPS. This survey aims to determine relationships between preexisting medical conditions/illnesses and pediatric CRPS in order to gain insight into factors that may contribute to the development of this syndrome in this age group. This information may help doctors to identify cases of CRPS sooner, resulting in earlier treatment and decreased suffering.

If you are a parent/guardian of a child with CRPS, please consider participating in my survey to help make a difference and increase knowledge surrounding pediatric CRPS. Participants will answer questions regarding their child’s experience with CRPS as well as if their child was diagnosed with several specific conditions and illnesses prior to their diagnosis of CRPS. The survey is completely anonymous and should take less than ten minutes to complete. It has been approved by my school’s Institutional Review Board committee.

Here is the link to my survey:

https://forms.office.com/Pages/ResponsePage.aspx?id=sh9fOF1VEUerES58NTHSbmtq9zP8QvhAuo7j1MWbRNtUNVpZU1laUTI1RjNVTFBRVFdXWkdIWDJLUS4u

If you have any questions, please feel free to reach out to me at [email protected]

Please consider making a donation to RSDSA today!

Written for the RSDSA blog by Melissa Adams

How and when did you develop CRPS/RSD?

I had an Achilles surgery in May 2016. Shortly after the surgery I had a HUGE fall. The pain was so severe and different from the surgery pain. I kept complaining about it, but was told it was all in the healing. However, I knew something was wrong. So finally, after a year of speaking my truth, I received new X-rays and had an MRI that showed my “new” Achilles was torn and my heel had four hairline fractures. The doctor wanted to wait to see if the pain would relieve itself. It did not, so I had another surgery in September 2017. I was still having pain that I have never experienced in my life. I fought with doctors for another year. Luckily, I began working with a new physical therapist who listened and saw signs of CRPS.

She contacted my doctor about sending me to a specialist for CRPS, and wouldn’t you know… finally a doctor listened, and I was officially diagnosed with Complex Regional Pain Syndrome (CRPS) in April 2018.

What has daily life been like since your diagnosis?

Life has definitely been different and sometimes even really hard. Trying to figure out the “new” me is a challenge every single day. I was such an active person as I was out in the community, a caregiver, and a starting a “party” anywhere kind of person. There are so many things that I miss like skating with my derby girls, having a day on the boat that is full of laughter, fun with friends + family on the lake, WALKING on the beach + enjoying the sun, and volunteering! I could just keep going, but it is the “simple” things of everyday life that really get me down.

I want to be the caregiver and it is so hard for me to be that person. Tasks like cleaning the house, sweeping, cleaning the tub, dusting, cooking, baking, etc. are now difficult. I am also unable to work which I do miss as I really loved my job. I also miss just taking simple walks. I want to be able to go grab a gallon of milk for my family or even drive to get the milk. Because I am not able to do so many things it really makes me go into a deep depression.

I try to keep a smile on my face, but some days are harder than others. I think of the good that I have such as an amazing husband that stands by my side, two loving kids, family, and friends that love and care for me.  

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

That even when I am smiling, I am in pain. Plus, when I cancel and I am not able to get out or visit you, please do not take it personally. I want to be there, but CRPS just won that day. ☹  

What advice would you give to newly diagnosed Warriors?

Have patience and reach out to other Warriors for support so that you do not feel alone. Having those Warriors by your side and the understanding of what you are going through is such a great help.  

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

Find that special something that makes you feel more “normal.” I am still finding new things to help me feel this way. Some of the things I do is take care of my plants and my sweet puppies. I also try to make breakfast every Sunday and spend quality time with my family instead of having to always be in a rush and let life speed by.

One thing that I really enjoy doing is my podcast, “CR(a)PS A Day In A Life With A Woman With CRPS.” Informing others on what it is like to have CRPS and to hear from fellow Warriors has really filled a void. Every week my brother and I put out a new episode. We complete research to find information to give us new knowledge and to share. One GREAT site is rsds.org. Their site has helped me in so many ways. I have even been to a couple of their events which are so informative!

What activities or treatments have helped you find temporary or long-term relief? Working with my doctors and adjusting my medication when needed has helped me a lot. I also really enjoy water exercise. Being in the water (not a shower, that is a story of its own) helps take that weight off of me and I can complete my physical therapy easier. There are some days, unfortunately, that even the water is not agreeing with me. The sensitivity is so severe.

Another thing that really helps me is writing in my journal. Sometimes I need to really let some feelings out and I do not want to talk to my love ones about it (at least not right at that moment). Taking those words and writing them down releases so much weight.

I think the best thing you can do is listen to your body. Stop when you need to stop and rest when you need to rest.

Of course the love and support I receive from my family, friends, and caregivers is truly something you cannot replace. They make my days easier to deal with and remind me that I am loved, needed,  beautiful, and a CRPS Warrior!

Anything else you would like to add?

It is okay to cry, scream, and get mad, but try to remember that you are not alone! Try your hardest to pull yourself out of it and reach out to those around you who understand and love you.

Please consider making a donation to RSDSA today!

Written by Gina Clark for the RSDSA blog.

How and when did you develop CRPS/RSD?

I was officially diagnosed with CRPS in September 2019. I have had close to 10 years of injuries and surgeries that have led to a significant amount of trauma to my lower right leg, foot, and sural nerve.

I was originally having pain on the ball of my foot in 2011 and it was then discovered I had a bipartite sesamoid. The orthopedic doctor performed a sesamoid removal at that time. I waited a little while to recover and sort of felt “back to normal,” but I was still in pain even after some time. I went back to the orthopedic doctor (a new doctor that took over for my doctor who moved out of state) and mentioned I was still in pain, having issues with balance, and bearing weight. It was painful and uncomfortable to walk. My doctor had me do a variety of things that were not invasive like use a walking boot and physical therapy. Still, my pain was no better.

The doctor then said that a gastroc recession (calf lengthening surgery) may help me with weight bearing, which in return would help my pain. I went ahead and had that surgery done in 2013. I recovered from surgery but noticed I was having loss of sensation on the right side of my foot and a portion of the right side of my lower leg and ankle. We gave my leg quite a while to try and regain the feeling but to no avail. Physical therapy was unsuccessful to try and get the nerve awake. My daily life started to become affected as I would step on objects or a hot surface and get injured since I did not even know the danger was there because I could not feel it.

I was then sent for an EMG. After that test, it was discovered that I had 55% nerve loss of my sural nerve. I was referred to another doctor in orthopedics who specializes in nerve repairs. I underwent a neurolysis and nerve wrap in 2016. I waited again as long as the doctors told me to wait and then some, but the wrap did not work. I followed up with my doctor again and they mentioned performing a nerve transfer. That procedure took place in 2017. Again as my incisions healed, my pain, numbness and tingling did not. I still tried to hold onto hope that maybe things would get better. Again, I waited for as long as the doctors wanted me to and even longer.

The doctor that performed my two nerve surgeries moved out of state and my case was taken over by the doctor who took over for him. I met with the new doctor and mentioned I was having swelling and increased pain near my most recent incision site. The incision healed nicely, however it was suspected I had a neuroma. The doctor performed an ultrasound guided lidocaine injection to see if it would help with the suspected neuroma pain. Since I had relief while I was in the office, we decided to go ahead and do an exploratory surgery for the suspected neuroma. I had this procedure done at the end of 2018.

During this surgery I had four different procedures done. I had revision of painful scar, right lower extremity, 15 cm, neurolysis of superficial peroneal nerve and excision of neuroma and transfer into extensor digitorum longus muscle, neurolysis of the lateral sural nerve and lastly, a fasciectomy, right lower extremity anterior and lateral compartmentment. My pain just continued and I could not find any relief no matter what I did. I was still numb and started to become discouraged.

My orthopedic doctor said they had done everything they could from an orthopedic standpoint and referred me to a pain specialist. I met with the pain clinic in April 2019. My pain clinic doctor had me try more physical therapy, Voltaren Gel, different doses of gabapentin, but I still was not feeling better. After a few months of trying more conservative measures, I went for a follow up. At this point, I was no longer able to work and a new reality was setting in.

My quality of life was not good, due to the pain. I started to feel like a shell of my former self. I knew that I needed to remain hopeful for brighter days ahead. I have a 10-year-old daughter and I knew she was my reason for pushing on and doing all I can do. During that visit, I mentioned to my doctor that I was feeling really cold in my foot and leg. They hooked me up to a skin thermometer and I was six degrees colder in my injured limb. I could tell the concern of my doctor and she immediately had one of her colleagues consult with me since this doctor had a little more knowledge in this. The plan was to go ahead with a lumbar sympathetic block. The doctors said it may not work but let’s say we tried everything we could. I went home that day so worried and upset. I have dealt with many surgeries and injuries over the years, but my leg and foot going cold really rocked me.

CRPS became more real as it was mentioned by my doctor and I was formally diagnosed. I went in for the block and it only lasted a day. Again, I felt defeated. The next step was a spinal cord stimulator. My doctor reviewed all the information about a spinal cord stimulator (scs) implant and his expectations for me. I consulted with the pain clinic psychiatric doctor, as is protocol, in order to approve or deny the procedure. The psych doctor reviewed so much with me and gave me even more knowledge on the device, etc. I was then approved, and set up for an scs trial procedure. In February 2020, I did complete a trial with 50% improvement. I was scheduled for March 25th and beyond ready to have it done. However, due to COVID-19, my surgery has been postponed. I am just waiting for the call to say, “Let’s go!” and I will be ready!

What has daily life been like since your diagnosis?

Daily life has been very hard but I am learning my body, what to do, and not to do. I know certain things can trigger the pain more. I hope one day to play with my daughter and not be in pain. I now walk with a cane and have handicap parking. I also use a walker for longer distances. Still, I try and remain in a positive headspace despite my difficulties. If I do not remain positive, then it will only make my prognosis and outcome worse. I have bad days and not so bad days (even though the pain is constant), but I try to find a silver lining or a glimmer of hope no matter what.

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

Many people do suffer in silence since so much is unknown about CRPS/RSD. Even though many people can smile and seem ok, sometimes they are not.

What advice would you give to newly diagnosed Warriors?

I would say that your mindset has a lot to do with how you fight this. If you can remain even a little bit positive on your worst days (trust me I know it is hard and some days are just so awful) then I feel you can face your battle in a better way. If you are in fact having difficulty with this, there are resources out there to help you cope.

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

You are not alone, we are in this together! If we can lean on family, friends, or anyone you trust for support, it will help. We are Warriors for a reason. We battle CRPS/RSD and that is no small feat!

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

As of now, just the trial stimulator has been helpful with some relief. That is why I am looking forward to the implant.

Anything else you would like to add?

For me, reading other Warriors stories has been super helpful. To know that there are other people facing the same obstacles creates a support system that is sort of different from a spouse, friend, or family members.

Written by Christine Sibley for the RSDSA blog.

My name is Christine Sibley. I am a 43-year-old mom, athlete, body builder, and runner who also loves Jiu Jitsu! I am a certified nursing assistant at a senior living facility in North Branford. I describe myself in a present way, because although CRPS literally ripped these abilities away from me, I have very high hopes that I am returning back to all the things I love and the things I did that made me, ME!

I tore my meniscus on November 5 , 2019. It was a typically busy day for me. I got up at 3 am to go to the gym as it opens 4 am. I did my usual mile run and weight session, showered and headed off to work. I did my usual very busy shift which includes non-stop walking. After work, I headed 21 miles to my Jiu Jitsu class. I remember limping out of my class with my left knee literally on fire! My leg was immediately stiff and would not bend. My knee felt like hot elastic every time I tried to bend my leg.

I got home and thought it was not a big deal. I am an athlete and get injured from time to time, and besides, I could not wait to show my son my GI [uniform] I had just received from my coach. I was in and finally becoming a white belt! I went to bed since I had to work another morning shift and expected that after ice and elevation my leg would be okay. I was also in serious denial because my leg was far from okay. I could not sleep that night and my leg was doing very oddball things. I had never had a knee injury, so I was not sure what to expect and I was an overall healthy person. Not even 24 hours later, I felt my overall heath swiftly declining.

I woke up with a very swollen knee and thigh and at this point my entire leg was burning, I could not bear weight on my leg at all without a great deal of pain. I called out of work and drove myself to the ER. The usual protocol was used: x-ray, ice, immobilizer. I sat and chatted with the doctor there who knew a great deal about sports medicine. At this point we knew my knee was not broken. I was given time off work and referred out to get an MRI. The last thing I said to the doctor was, “but why do I feel a bubbling sensation under my knee? Why does it burn so bad? Why is my whole leg moving by itself?” He said it was all normal.

I was in a hurry to get my MRI and get back to my life. I had a demanding job and no time to waste looking for the perfect doctor. My insurance is limited as well. I just wanted this to be over.

I found an orthopedic advanced practice registered nurse (APRN) and she referred me for an MRI. I had a very small 1 mm tear in my meniscus along with a bone on bone arthritic knee. She assumed the right knee was the same arthritic mess. She said there was no option for surgery for pain relief due to the arthritis. I told her that I am a runner, and that I never had any knee pain and would never of known they were bone on bone if she did not inform me.

She suggested cortisone injections. With these, I would be back to work within three days, and it would alleviate the burning, stabbing, and leg on fire pain. This would end up being the worst decision of my life. From that moment forward, my CRPS (that no one knew I had) was kicked into overdrive. What happened to me during those last four months gave me PTSD so severely that I was too terrified to get out of bed. Very long story short: It was something said at physical therapy that got me diagnosed with CRPS. I asked how my knee was doing, and I responded, “You mean my leg? You should see it at night!”

Nighttime is when the “dance party” happens. My leg has a life of its own now. It burns and I cannot have anything on it. It shakes and actually feels like my patella is being tapped on from underneath! My mind is doing odd things too. I just do not feel well at all, and it is getting worse by the day.

After physical therapy, I received a call from the orthopedic APRN. She said, “Have you ever heard of CRPS?” I had not, so I asked for more details. She matter of factly said, “It’s a pain syndrome.” It honestly did not seem like a big deal to me. She then referred me to a physiatrist and the month I had to wait leading up to that appointment was horrible.

I was getting sicker and sicker. I had four ER visits and was begging for amputation which got me nothing but a Valium and referral to a psychiatric doctor. I swore I had an infection, but nope. All of my labs were normal. I had no blood clots. I also had no answers. This was all because not one doctor (and I saw many) in the three months I was very ill knew what Complex Regional Pain Syndrome even was. I did not know either even though I was suspected to have it and was far too sick to do any research. Now I am well enough to help spread awareness!

Daily life over the last six months started out as a complete nightmare. My pain was so bad and all I did was cry. It turns out, the needle injections put my CRPS into a monster flare up. I lost many of my abilities during this time, including my mind. I thought I would stay like that for the rest of my life. Once I met my current doctor, I was able to finally got on the right combination of meds that work for me and things are so much better. However, each day with CRPS is completely different from the last. Some days my legs just do not work well and it is very hard to walk and some days I can walk just fine with little to no pain. Being out of work and waiting for long term disability to be approved has been very challenging. I’m unable to regulate the things that happened to my body like skin discoloration, regulating my heart rate and blood pressure, and extreme allodynia of sounds. They are all unwelcome, but dealt with the best I can.

One thing I wish those of you without CRPS would understand is although most of us look fine, we are not, so please be kind, always. I find that people can be very judgmental. I hear a lot of, “You were in a wheelchair yesterday but today you are walking?” and “Why are you using the scooter when I saw you pushing a cart last week?” I wish able people would be more understanding of the chronically ill community in general. None of us wanted our lives altered. Now here we are, doing our best with what we have.

The advice I would give to newly diagnosed warriors is to reach out to others such as family and friends and CRPS Warriors on Instagram. There are so many online groups filled with Warriors who are very helpful with the millions of questions we all have. There is a wealth of info on YouTube with Ted Talks on CRPS and chronic illness in general. Whatever you do, do not isolate yourself! It is easy to slip into the muck with the psychological impact of CRPS. I did and it sunk me even further. Although it can be scary, research anyway, advocate for yourself, and please find a doctor who specializes in CRPS.

Other advice includes:

• Obtaining a medical alert bracelet
• Keep a journal. I keep one for meds and pain, one for personal thoughts, and a regular planner for appointments. This will help with brain fog and keeping your mind healthier. As you get to know your CRPS, you can also direct your treatment.
• Use EMLA cream before you get needle sticks to help prevent a spread
• Watch for tight blood pressure cuffs. Those can also cause a spread.
• Please make sure that before any procedure you always refer to your doctors

The encouragement I would give to the CRPS warriors fighting for years is to please continue to share your journey, keep spreading awareness, and keep pushing. Sharing your journey has gotten me through my darkest hours. You are well honored and greatly appreciated by me and all the new Warriors. Keep fighting. Your strength and endurance carries us and we love you for it!

The treatment that has helped me for long term relief first and foremost is my medicine regimen. Before we found the one that worked, my nervous system was all over the place and so was my mind. CRPS is complicated as it has a psychological component to it as well. Although topicals help with allodynia, the biggest help was to start desensitizing my affected area right away. I started with a Q-tip and now I use a wash cloth over my affected leg and it has made a tremendous difference with pain and fabric on that area.

Temporary relief, varies from day to day. Getting myself out of bed each morning and taking a shower helps with depression. Distractions are also a must. Whatever makes you feel good that you can do in bed during flares, go for it!

I also suffer from severe allodynia. I have not found any treatment for that except pills, rest, and minimal to no noise. Soothing nature sounds help on a low volume. Be aware of loud noises like motorcycles and fireworks. It is a trigger you do not need!

The last thing I would like to add is NEVER GIVE UP! To any Warrior out there, please contact me if you need help. You are not alone!

Please consider making a donation to RSDSA today!

Written by Ross McCreery for the RSDSA blog.

How and when did you develop CRPS/RSD?

In 2005 I had a surgery to remove a cyst from my left wrist. Immediately after the surgery my entire arm started to swell right to my shoulder, and I started suffering from intense burning pain. My entire arm changed color and eventually I lost function of my hand. The search was on to find a diagnosis yet nobody was able to. In 2006 after exhausting all the resources available in the city that I live in, I ended up flying to another city (Vancouver) where a specialist in chronic pain made the official diagnosis. Shortly after diagnosis CRPS spread to my left leg after tearing tendons in that the ankle.

What has daily life been like since your diagnosis?

Daily life has been difficult at times because from one day to the next I never know what my pain is going to be like. No longer able to work, over the first few years I had to figure out ways to adapt basic life skills. It has become a full time job to manage my pain or deal with how this all affects my mental health. To do this, I have a toolbox of different ways in which to manage all of these things. The other big adjustment has been in how our family functions. Everything always has to be planned around me! Meaning that things like daily routines, family gatherings, and vacations all hinge on how I am doing. Now I do o’t want to be all doom and gloom. As time’s gone by, some aspects have become easier to navigate in living with CRPS/RSD. I do not have to rely on others as much as I used to, and I have gained a large portion of my independence back.

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

I really wish people without CRPS/RSD could understand the complexity of CRPS/RSD. There are days where I feel somewhat normal, and others where I am rocking in the fetal position because the pain and burning get so bad. So please do not judge me and say that I am faking it or that it is all in my head, just because from one day to the next I might appear very different. You need to understand that there’s a lot going on inside my body that you just do not see.

What advice would you give to newly diagnosed Warriors?

The most important piece of advice I could give a newly diagnosed warrior is this. Never lose hope! So many newly diagnosed warriors give up, or think that once they have been diagnosed that there is “no life after diagnosis” but nothing could be further from the truth. I try to tell those who are newly diagnosed to keep riding out the storm. Eventually the seas will calm allowing you to gain control. You “WILL” survive this storm! Find a support group or others living will CRPS whether it be online or in person. You are going to need them to encourage you on those hard days. No matter how difficult your journey is going to be, you can still live a crazy ridiculously good life!

What advice would you give to Warriors who have had CRPS/RSD for many years?

My advice for someone living with CRPS/RSD would also be to never lose hope and be positive! Take a look at your situation and ask yourself are you stuck? When we live with CRPS/RSD for many years we can get lost in quite literally a world of pain. This can cause you to get “stuck in a rut” because you are tired of having tried everything imaginable. The natural response is to give up and want to wave the white flag in surrender. My response to that is to say to you “keep trying” and never give in to this disease! Strive to overcome and if you are in a good place with your CRPS/RSD then speak into another person’s life and help support them.

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

The difficulty with CRPS is that what works for one person may not necessarily work for the other. So it becomes this matter of finding the right mix of activities or treatments that works for each of us! This has meant that I have had to build a personalized treatment plan for myself through my care team. A combination of drug therapy (Ketamine Infusions & daily meds) along with two neuro-stimulators that were implanted has given me the most effective pain relief. I have also incorporated the use of biofeedback on a daily basis into my daily routine. I have radically changed my diet and gone to almost entirely a plant base diet with lots of foods high in anti-inflammatory properties. This helps to control some of my swelling in both my affected arm and leg. These are only a few of the many strategies that I use.

Anything else you would like to add?

I really believe that it takes a well rounded approach in order to achieve long term relief.

In my own journey this means looking at and then either incorporating or making changes to six different areas. Those are within the areas of lifestyle, psychological, physical therapy, interventional therapies, spirituality, and medications. For myself I have made changes in the following areas:

1. Lifestyle – Changes to my diet, stress management, and getting into a hobby
2. Psychological – Biofeedback, Mindfulness, support groups, and counseling
3. Physical Therapy – Physical Therapy
4. Interventional Therapies – Injections, and having the neuro-stimulator implanted
5. Spirituality – Prayer
6. Medications – daily medications and Ketamine Infusions

Written by Julianne Williams for the RSDSA blog.

How and when did you develop CRPS/RSD?

I developed RSD when I was 38. I fell down some outdoor stairs and flew into a parking lot. I crushed about eight bones in my foot and ankle.

What has daily life been like since your diagnosis?

My life has been destroyed by this disease. I was an avid runner and an RN both of which I have never been able to do again. My day to day life is totally controlled by pain. I have no ability to make plans because I never know how bad my days will be.

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

What advice would you give to newly diagnosed Warriors?

Get tested early. It is the only thing that can change the course of this disease. Also avoid any surgery that is absolutely not necessary. It can cause CRPS to spread.

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

Written by Jessica L. for the RSDSA blog.

How and when did you develop CRPS/RSD?

I first developed CRPS in June of 2014 at the age of 16. On June 12th I was playing Giant Jenga with friends when someone lost their balance and came down hard on my left foot. I had broken that foot four times in the past and barely thought anything of it. A few days later my foot began to change colors, swell, and become cold. Soon the pain was too bad for me to walk, but when I went to the doctor nothing was broken. After weeks of increasing pain I was referred to a pain specialist and was seen a few weeks later. It turned out that doctor had suffered from CRPS himself and I was diagnosed shortly after.

On November 1st, 2019 my CRPS spread. I woke up at 4am crying in pain. My back was on fire. As the day went on the pain spread through my chest and arms and I could hardly move. I went to the ER that evening and the next day I was admitted to the hospital. After a long admission full of ketamine infusions, steroids, and nerve blocks the pain had receded to just my upper back and I was sent home to adjust to my new normal.

What has daily life been like since your diagnosis?

When I was first diagnosed I lost my ability to walk. I spent a year on crutches and had to completely relearn how to walk. I tried my best to participate in activities with people my age but most of my efforts failed.

When my CRPS spread I had to quit my job, I could not lie down at all, and needed assistance to even stand up. I could only wear the softest baggiest clothes for months and I did not drive or go anywhere.

My life and my pain levels are constantly changing. I have had times where I am nearly pain free and times where my pain consumes my life. Currently my life is more “normal.” I have learned to cope with my pain and my pain is much more controlled. I work hard in PT to be better able to function. I rely on nerve blocks and medications to manage my pain and I made accommodations to go back to work.

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

That even if I am having a good day it does not mean that I am not in pain and that if I say no to doing something it is not because I do not want to spend time with you, but that I just physically can’t. Treatments mean that my pain is better controlled and that I am able to function most of the time but they do not mean that I am cured.

What advice would you give to newly diagnosed Warriors?

Find a support network and advocate for yourself.

Reach out to family, friends, or an online community, find a hobby that you can do. All of these are things you can fall back on when you are struggling for help or even just a distraction.

Do not be afraid to tell a doctor that something is not working for you. Be open about your symptoms and the help you need and keep pushing your doctors, physios, therapists, etc. to find something that helps you.

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

I look up to all of you so much! This disease is tough but you are tougher and you inspire and guide so many people who are newly diagnosed with this disease or struggling with any other form of chronic pain/illness. Keep fighting.

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

The most helpful thing for me have been nerve blocks. I have had temporary nerve blocks, pain pumps, and RFL procedures which have provided relief for various amounts of time. Physical therapy including desensitization and strength training have been so helpful provided I do not overdo it. Staying physically active as much as possible has also been very beneficial for me.

Please consider making a donation to RSDSA today!