Year: 2019

Written by Shanna Parlock for the RSDSA blog.

How and when did you develop CRPS/RSD?

On April 27, 2007 I went for the first horseback ride of the year, and since my daughter was born. After it, my life would never be the same.

During the ride, my horse was spooked and threw me off. I shattered my L3 vertebrae. My back started to heal correctly, but then for some reason it would not finish healing. In February 2008, I had a 12-hour surgery to replace my L3 vertebrae with titanium mesh and fuse my L2 to L4 with rods and screws. Afterward I kept telling my doctor I felt two types of pain. I felt an aching pain in my back, which would improve with rest and medication, but I also had a burning excruciating pain in my left hip and leg that never went away. Several tests and several years later, my husband encouraged me to see another doctor.  In 2012, I had an appointment with a new doctor. He started to examine me and touched my left leg. In doing so I screamed and jumped away from him. He had been a Navy Seal and seeing this first hand instantly diagnosed me with RSD.

What has daily life been like since your diagnosis?

Daily life is a challenge, the pain is constant and now on my entire left side. This includes my mouth, eye, and chest. Cold and stress are the main factors of my disorder. I was a middle school administrator for five years, but I had to step down from that position due to stress levels causing my pain to become unbearable. I now work as a robotics/drone instructor and individually tutor students in mathematics and science. I am a mother to three children, one of whom I had with CRPS. I work very hard to balance work so I am able afford the treatment I need (insurance pays very little, if any at all), the pain, being a good teacher, a mother, a wife, and not losing myself in all of this.

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

I am not looking for sympathy or pity. I want to be treated as myself, but if I cannot give a definite yes that I am able to do something or attend an event please be understanding with me. My levels of pain vary from day to day, even hour to hour. I am not able to plan ahead for things that I am able to participate in, but I would love to be a part if I can. This is such an isolating disease, and I just want to be understood.

What advice would you give to newly diagnosed Warriors?

Stay informed and educate yourself. Many doctors I have seen have never heard of CRPS. Even my main CRPS doctor has not read all of the medical studies that are out there. We have to be an advocate for ourselves and others.

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

Self-care is so important. I learned the hard way that if I do not take care of myself then I will not be able to care for anyone else. I would also add that we have to be careful not to lose ourselves to the pain, medications, and the disease. We were put on this Earth for a reason, and we have a mission to fulfill unique to each of us. We are warriors. We are stronger than anyone will probably ever know.

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

I follow an autoimmune-protocol diet and try to exercise regularly. If I do not use it, I will lose my mobility. This drives me to push myself to take care of the health I have. I try to surround myself with empathetic people. Therapy has taught me to deal with stress and pain as well as, grounding and breathing techniques for when the pain is unbearable.

Anything else you would like to add?

I was in a bad situation at work for a while. People thought I wanted attention, that I was lazy, and that I was trying to manipulate people. How could I be so positive and be in pain? How could I not be crying and screaming if I was in as much pain as I said I was in? What was this disease? I was making it all up. Through this situation, my support system helped me to realize that life is too short to deal with this lack of understanding and that people needed to be educated. I feel I was given a mission, and I will work until the end of my days to help others not to feel the way I did.

Please consider making a donation to RSDSA today!

Written by Michelle Kellogg for the RSDSA blog.

How and when did you develop CRPS/RSD?

I was officially diagnosed October 20, 2016, but we believe I originally developed it in January 2015 after surgery. It was my second surgery on that limb, a simple surgery just to remove hardware that we believed I was allergic to. During that surgery, my surgeon noticed I had a nerve that was completely covered in scar tissue. He attempted to debride the nerve. Later, after removal of all bandages, I noticed the area where the debrided nerve was had become incredibly sensitive… as in, sick to my stomach if you just look at it kind of sensitive. He attributed it to the debriding and assumed he nicked the nerve. He expected it to heal with a little time. It didn’t.

Seven months later, I ended up having a full fusion done on that foot as we learned the first surgery (a repair) never took. I went to another doctor for a second opinion who suggested we just remove the offending nerve, since that area was still sensitive. My surgeon concurred and performed the neurectomy. Recovery from that surgery was hell, and after fully being out of the cast, my foot, ankle, and calf were very swollen and often a dark red and purple. It was hypersensitive; I couldn’t even let my bed sheets touch it, but if I applied a firm, even pressure, I could handle that. For instance, I could put a sock on (it was hell) but once it was on, it was okay at least for a while. After one exam where my leg was purple and so sensitive that he couldn’t even touch it, he immediately sent me to his friend who is a pain doctor who specializes in RSD/CRPS. He got me in that same day, listened to my history, took one look at my leg, and said, “I’m sorry to say it, but you do have CRPS.”

What has daily life been like since your diagnosis?

I have good days and I have bad days. I recently had to have surgery on my CRPS-affected limb (affectionately—or not so affectionately—referred to as Frankenankle, or Frank for short) to remove the hardware from the fusion surgery due to my metal allergy. We tried to put it off or skip it, but it got to the point that it was causing systemic inflammation, including cardiac inflammation, so it had to come out. We did everything right: gabapentin for two weeks prior to surgery and 6-8 weeks post-surgery, lumbar sympathetic nerve block within a few days of surgery, ketamine during surgery, no general anesthesia (spinal block)… and what was slated to be an outpatient surgery ended up with a three night hospital stay due to the major CRPS flare it triggered, including full spread to my right foot (now affectionately/not affectionately referred to as Ethel).

After diagnosis in 2016, I had several lumbar sympathetic nerve blocks (LSNB). At the time, I did not feel they did much. I never really experienced relief. But looking back at my journal, I realize they did help, just not in an immediate fashion. About two weeks after my third (and final for 2016) LSNB, the color in my leg returned to mostly normal. I still had sensitivity, but it had calmed a little. Beginning of 2017, I learned about alpha lipoic acid (ALA) being an up and coming supplemental treatment for CRPS, so I started taking it. My pain doc had me increase the dosage, and I started to feel relief. I also resumed my ketogenic diet, and that helped, too.

From about mid-2017 to mid-October of this year (2019), I was good. I was able to wear socks and shoes (well, a surgical shoe on Frank because of the swelling caused by the allergic reaction and exacerbated by the CRPS), walk around, live my life. In 2018, I noticed the CRPS was starting to spread to my other foot, but it was just a mild burning sensation and mild discoloration; I was not too worried about it. My doc wanted to do another LSNB to stop the spread, and I consented. And it did, mostly, stop the spread. Until I injured that foot in March 2019, and it spread more. But it was still mild, so I let it be.

Now, post-surgery, I’m struggling a lot. I’m stubborn, though, and refuse to let CRPS own me or my life. I may not be able to walk much, the CRPS has fully spread to my other foot (Ethel), and if either foot is down (standing or sitting normally) for more than a couple of minutes, they both start screaming… but I refuse to let it stop me from doing the things I love. November is a crazy month for me as I am a volunteer for a non-profit organization whose biggest month (and highest need for active volunteers) is November. The non-profit is called National Novel Writing Month and I am one of the coordinators for the entire Denver region. We get together and write; I host “write-ins” at cafes, restaurants, libraries, etc. several times per week; I organize our annual writing retreat up in Estes Park (as well as attend). It is stressful and time consuming, but I also love it. Additionally, I am a member of a choir that is also a non-profit, and I serve on the Board for that, as well. I may have to sit for choir rehearsals and concerts, and grab an extra chair when at a café for a write-in to elevate my leg, but I am still doing what I love and love doing it.

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

The number one thing I wish those who do not have CRPS/RSD could understand is that it is not like the pain they have experienced. Showing them the McGill Pain Index only helps so much—they just cannot understand or grasp the level of pain that happens. And I am glad for them that they cannot grasp it, because it means they have never experienced it. But that does not mean they should attempt to diminish that which we all know and suffer through every day. Taking medications—including opioids—does not mean we are addicts or incapable of living our lives. It is just a tool in the tool box to help us get out and do what we can.

What advice would you give to newly diagnosed Warriors?

My number one piece of advice is to learn about this condition. Be a sponge and absorb every single thing you can. Read books. Read medical journals. Read the RSDSA website. Read blogs. Read social media posts and groups. Because far too often we have to be our own advocates in health care and we need to know exactly what needs to happen, is happening, or has happened. Often, we have to educate our physicians on newer treatments or alternative treatments. This knowledge does not replace our doctors, but it can help navigate the medical world, which is already confusing and difficult.

A second piece of advice is: DO NOT IGNORE THIS CONDITION. Prevent spread as much as possible and do whatever you can to prevent flares. Mitigating both flares and spread is critical in the very beginning. If you notice spread, tell your doctor. Don’t be like me and ignore it; it was a sign that things were not quite as quiet as I’d thought.

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

To quote one of my favorite movies, “Never give up; never surrender!” It’s cheesy, I know, and sometimes it is hard… really hard… but we must never give up or surrender ourselves—our very souls—to this condition. I know it’s hardest in the middle of the night, lying in bed, staring at the darkened ceiling, unable to sleep due to pain. The silence of the dark can be oppressive when you can’t silence your body, let alone your mind. It’s okay to cry, it’s okay to scream, it’s okay to let it out… but you have to pick yourself up afterward and keep fighting.

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

The two main non-medicinal treatments that have helped immensely are: Alpha Lipoic Acid and a ketogenic diet. I need to clarify that when I say a ketogenic diet, I mean one that is low carb and high fat with moderate protein. Period. There are many on the internet who try to define in their own way what a keto diet is, but ultimately a ketogenic diet is one that puts your body into a state of nutritional ketosis.  You will find people that will say something/an ingredient “isn’t keto,” but that is because they are following some other definition of a keto diet outside of the actual and true medical definition of a keto diet. But I know for me, the keto diet has made a significant difference. When I “cheated” while on vacation and such, my CRPS pain would flare up like mad. If I missed more than two days of ALA in a row, the CRPS pain would flare up. While neither are cures, and neither are currently helping with this major flare I am in, I know they provide me the best non-medicinal options.

As far as medicinal treatments go, I have found that the LSNBs have helped long-term, even though I did not realize it. They do not provide immediate relief (for me—they do for some). I worry about scar tissue in the spine from them, as I scar very easily, but if I do them infrequently, they still help. I was also given ketamine troches, and those help take the tip of the edge off the intense burning/taser-like pain.

Non-medical activities that help me a lot are knitting (I find it calming and relaxing and helps to fend off anxiety) and writing. Writing—whether about CRPS or not—can be a very cathartic activity, whether it’s journaling, blogging, communication, or more formal like writing a fiction book or even a non-fiction self-help book. I highly recommend it for everyone.

Anything else you would like to add?

As important as it is to have good doctors, it’s just as important—and dare I say MORE important—to have a good support system. Whether it’s family, friends, coworkers, or even random people on the internet, having others you can lean on (especially during a flare) is critical. I am blessed to have an incredibly supportive husband and two crazy supportive teens, plus an entire community online if/when I need them. I know I am one of the lucky ones… but finding some kind of support is vital. If you believe you have no one, you are wrong. You have me. Email me (FightingCRPS at gmail dot com) or find me on social media. I will be there for you.

And finally, keeping a sense of humor is so important. It is true that laughter has healing properties. We will never laugh so much that we cure CRPS, but the endorphins that laughter releases can help, even if just for a moment. That is part of why I named my leg Frankenankle, Frank for short. I did that before CRPS. Because I needed to laugh at it, give it a silly name. With the spread, Frank needed a partner… and thus, Ethel was born. I have gotten to where I just say Frank and Ethel, and use their associated gender pronouns (him/his/he for Frank, her/hers/she for Ethel) regularly. If I grimace from a zap or a zing, I just say, “Frank is angry,” or “Ethel is saying hello” and those around me know what I mean. I even have my doctors referring to them as Frank and Ethel.

Keep a sense of humor. Find things to laugh at, whether it is funny YouTube videos of cats, silly memes on social media, comedic movies/TV shows to watch… whatever it is, just laugh.

Please consider making a donation to RSDSA today!

Written by Rachel W. for the RSDSA blog.

How and when did you develop CRPS/RSD?

Please consider making a donation to RSDSA today!

Written by Barbara Graham for the RSDSA blog.

How and when did you develop CRPS/RSD?

I was diagnosed with RSD in April 2004. The injury occurred in July 2003. I worked in the security department of one of Rockford, Illinois’ leading hospitals. My partner and I received a call to the psychiatric floor. They were trying to admit a 17-year-old, who did not want to be there and was on drugs.

After we struggled with the patient in the hallway and returned him to his room, the nurses came in to give him a shot to clam him down. But after seeing the needle, he started throwing punches again. He knocked my partner back and to the floor. I grabbed him and he turned around and threw me into the wall. I hit my head against the wall and my right leg bent and my heel touched my butt.

Once we were able to get the patient under control again and he was given his shot. Once the patient was clam we left. I noticed some pain in my right leg with a small limp. My leg continually worsened. Swelling, redness, pain, stabbing, burning. It felt like someone was taking a knife and sticking it in my leg all over. A few days later I went to my doctor and for the next six months I went through all kinds of test, scans, poking and measuring that just came up with the same answer: I don’t know.

My family doctor knew this was not like me and sent me to a specialist at University of Wisconsin-Madison. After one look at all my test, x-rays and my leg, he knew I had RSD. I was just so happy that we finally knew what I had and it was not just “in my head.”

Now the long road of treatments including injections in my spine four times a week started. It came to a point that the pain doctor was making the injections so strong to numb the lower half of my body to give me some relief for a few hours. This went on for awhile until my back developed scar tissue were I was getting the injections and now needles were breaking trying to get past the scar tissue. We tried a pain pump, but that lasted only a month. I was also on fentanyl all this time. It was a very hard and long road to get were I am at today with a stimulator implanted.

What has daily life been like since your diagnosis?

I first felt sorry for myself. I was mad, moody, and angry I used to be independent and strong and I was no longer that way. I now became dependent on many people who were friends, family and strangers. I needed help with everything from getting dressed, cutting my meat, washing, and even sometimes wiping my butt. I had to either use crutches or a wheelchair. The RSD soon started traveling to my arms. Once I received an implant, I started feeling better and doing more for myself. I still needed some help, but not like before. I am also off the crutches, out of my wheelchair and can use a cane!

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

That my moods have nothing to do with them. Just because you do not see it does not mean that it is not there.

What advice would you give to newly diagnosed Warriors?

We are here to help you get through all of this.

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

You are strong. You made it this far. Never give up.

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

Some medications, the stimulator. No activates help me, but I keep moving because I need to.

What else would you like to add?

RSD has been one of the hardest things I had to learn to live with and adjust my whole life to. I never saw coming. I feel it is rougher than my cancer.

Please consider making a donation to RSDSA today!

Written by Melissa Uchic for the RSDSA blog.

How and when did you develop CRPS/RSD?

My initial injury is more of an educated guess between myself and my doctors. I can trace symptoms back to an epidural during childbirth in 2005.

What has daily life been like since your diagnosis?

My life has been ever-changing since 2005. It started with just back pain, but as an athlete, I was used to back pain and tried to charge through it. But over the years, and more significantly so in the past two years, my quality of life has been declining. My CRPS has spread to my whole body. I have not been able to use my thumbs for over a year, I limp with both legs, my spine hurts and is so tender that just putting a shirt on sets off a flare. My gallbladder and digestive system are involved, so eating is not always possible. I cannot walk, sit, or stand for long periods of time so I feel like I miss a lot with my children. There are so many symptoms that all “talk” to each other that on any given day, I may not be physically able to get out of bed. Life is terrible when you feel like walking death.

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

I need people to understand that even when I am at work, or smiling, or making a joke, I am in pain and sometimes need certain accommodations.

What advice would you give to newly diagnosed Warriors?

RESEARCH. Constantly research the diagnosis, the doctors in your area, the treatments available for your stage – research and make print outs. I cannot tell you how many times having information to give to ER doctors or new doctors has made them stop treating me like a hypochondriac.

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

Honestly, the same advice. There is only so much WE can do: watch your diet, do physical therapy, take your meds. The only other thing we can do is research. There is always new information that many doctors are not even aware of. Be your own advocate.

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

I find Lyrica helps some of the burning and medical marijuana has been life-changing because it allows me to eat and sleep.

Anything else you would like to add?

Doctors need to be better informed, and one way to accomplish that is to make people aware of CRPS. The more people who know about it, the better. Spread awareness. Use social media, tag medical professionals, do whatever it takes to find a cure!

Please consider making a donation to RSDSA today!

Written by Juanita Franke for the RSDSA blog.

How and when did you develop CRPS/RSD?

I developed CRPS in October of 2018. While working as a faculty member at Pacific Northwest Ballet and teaching Pilates, I sustained a minor injury to my left knee. I knelt down, heard a ”pop, ” and spent the afternoon icing my knee. By the next day, I could only walk with crutches. Within two days, I started experiencing the swelling, discoloration, and skin temperature differences that I now know to be symptoms of CRPS.

Unfortunately, it took three and a half months for a diagnosis. While I know my diagnosis was relatively quick compared to the averages, it was nonetheless frustrating to endure six weeks of physical therapy, numerous trips to the emergency room, surgery, another six weeks of PT, and still not have a diagnosis. At one point, I thought I was really going crazy!

What has daily life been like since your diagnosis?

Since diagnosis, life has been a roller coaster. I spent a couple of months doing graded motor imagery, mirror therapy, and desensitization work alongside traditional physical therapy, but I still could not walk unassisted, and my pain levels were unchanged. During this time, I added in Emotional Awareness and Expression Therapy (EAET) with a highly skilled psychologist. With his help, I was able to transition off of most medications.

Of course, there also had to be a reckoning with my way of life. I had to quit my jobs, both of which I really loved. I had to give up hiking, camping, and kayaking with my family. Seven months after the onset of my CRPS, my husband and I made the difficult decision to leave our community in Seattle in order to move closer to my parents and sisters.

Life is slowly returning to some kind of equilibrium. I have days where I am able to do all of my activities, run my new crochet business, and walk without my cane. There are days, though, when I can barely get out of bed due to the pain. I am learning to pay attention to my cold foot, the pins and needles in my hip, and the ache in my knee. When I accept the messages my body is sending and pace myself, life goes much more smoothly.

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

I wish people could understand that CRPS is always there, whether I am actively in a flare or not. I wish they could understand that I may need to cancel at the last minute, and I am at least as frustrated as they are. I cannot always do today what I could do yesterday, and if I ignore my body, I will be the worse for it.

What advice would you give to newly diagnosed Warriors?

Hang in there! Find a good physical therapist and a good psychologist. Prioritize your sleep, nutrition, and pacing. Be vulnerable and ask for help. The sun will rise again, though it may not feel like it right now.

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

I have no advice to give. I am still learning to live with CRPS, and I am amazed at all the wonderful things I see fellow Warriors achieving. This disease may come with added challenges and disappointments, but it does not mean an end to happiness and fulfillment.

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

I have found the most relief through buying a new, motorized bed frame. I can raise my legs with ease and take the pressure off. Simply resting with my feet up has been a real game changer.

I have also found relief in changing up my diet. After a Whole30 reset, I found that sugar, dairy, and gluten really contribute to my pain levels. Without these triggers, my pain level is around a 1 or 2 – present but not unbearable. After eating any of them, I found myself relegated to bed with pain levels preventing sleep or rest.

Of course, all of this is just icing on the cake. I could not have reached this place without the help of my physical therapist, psychologist, or pain specialist. Getting good medical care was the real game-changer. They taught me that I still had agency, despite being at the mercy of this disease.

What else would you like to add?

I am so thankful for the Warrior community. Reading articles, blogs, and Instagram captions keep me from feeling so alone on those nights when the burning will not stop long enough for me to get decent sleep.

Please consider making a donation to RSDSA today!

Written by Devery Mills for the RSDSA blog.

How and when did you develop CRPS/RSD? What has life been like since your diagnosis?

I have been a nurse for many years and worked in the ER and Cardiac.

In 2007, I was seen in the ER with a nasty stomach bug.  Traditional medications were not working so I was given a different nausea drug two times. It was not given correctly according to pharmaceutical instructions and it caused significant damage to my right arm. I suffered thrombophlebitis and infection. I was in the hospital for a week on IV antibiotics and consequently the beginning of my journey with RSD.

My husband and I lived on a 43 ft boat for 12 years and I worked all over the state of Florida as a travel nurse. Little did I know my life was going to change overnight.

The first three months after the injury I was in a deep depression. I could not work, I was in extreme pain and my lifestyle was about to change also. I cried every day. I mourned the loss of my career and lifestyle. I truly did not care if I lived or died. I did not eat, take a shower, cook, or do anything that I enjoyed. On top of this, trying to get treatment was next to impossible because I lived in a very small place where anything outside of a cold or stitches needed to go to a “bigger hospital system.”

I was diagnosed using an EMG, but what treatment I did get included the typical Amitryptiline and neuro/psych medications. I found out that I am hypersensitive to all of these medications as they had severe side effects. I lost who I was. I stumbled around most of the time not even being able to tell you my name. I even did my share of sleep-walking and living on a boat. I do not have to tell you how dangerous this was. I nearly suffered a divorce as my husband had no idea how to help me and my behavior became more bizarre by the day.

Finally, after three months I had a moment of clarity when I realized I did not have to live this way. I went off the medications and my head began to clear enough for me to make some decisions.

In 2009 my husband moved us to our home state where we bought a house and began a new life. I found a primary care physician who listened to me, researched how to care for me and began the process of finding adequate treatment. This doctor saved my life.

I have since learned that no matter how bad I felt or how much pain I was in, I had a choice. I could choose to lay in my bed or I could get out of my bed and face the day. I opened a homeless organization and spent 10 years helping the less fortunate.

Today, my husband and I have moved back to Florida where we live in a little park and I have found an EXCELLENT pain management group and primary doctor. I live with the mindset that there is always someone worse than me and that nothing I do is going to make my condition worse. I use diversional activities to keep my mind busy. I also meditate and have taken my diet captive. I also incorporate many natural products that help me every day.

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

CRPS/RSD is one of the most painful and challenging diseases known to the medical profession.  The constant burning/cold feeling with the deep bone aching pain is like none other.

Over the course of time, sufferers become experts in putting on “the game face.”

The world sees the game face and assumes that there is nothing wrong or that we are even “faking it.”  The world who does not live in CRPS pain is absolutely incapable of comprehending its torment. I wish these people would stop passing judgment. The stigma attached to chronic pain sufferers is beyond belief.

What advice would you give to newly diagnosed Warriors?

I HEAR YOU and I KNOW your pain.  Slow down and take charge of your healthcare. Do not be bullied or settle for less than…

RESEARCH EVERYTHING because knowledge is power. Find a GOOD pain management group and be honest with them about your condition and your needs.

Do not be afraid to try new things. There are amazing natural products and therapies. Nothing works for everyone, but you just might find things that work for you.

Do not be afraid to stop taking a medicine that does not agree with you. Listen to your body and do what is best for YOU.

Hold your head up and do not be ashamed of your condition. You are one of the strongest people you know. Keep fighting. Never give up and perhaps you will be one whose condition goes into remission.

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

As a person who is a 12 year veteran, I would encourage you to never give up. You are valuable to many and you are loved. Medicine is changing every day and perhaps there is a cure on the horizon. Change your routines and do new things. Do not get too comfortable in the box. Rest when you must and listen to your body.I send you blessings for healing and comfort.

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

My medications include:

Lasix, Gabipentin, A compound cream, Robaxin and low dose Oxycodone.

CBD and Ashwaganda are a couple natural products that I find effective.

I have not benefited from traditional therapies and stimulators were not an option in my early days.

I am currently investigating Ketamine and Scrambler therapies as a possibility.

My pain ranges from 4-10 depending on whether I am in a flare.My flares have become less over time and my pain has become mostly stable at 4-5 average. My pain is mostly cold and I am fortunate not to have the “fire” aspect of the disease, but the cold gets pretty rough.

Anything else you would like to add?

I would like to encourage all of you who are struggling daily with the knowledge that we are all in this together.  Through our support of each other through groups and individual friendships we nurture and heal each other.  We share our stories and we vent our frustrations and nobody will understand like we do.  We are Warriors!!  Many blessings.

Please consider making a donation to RSDSA today!

Written by Jeannette Pello for the RSDSA blog.

How and when did you develop CRPS/RSD?

 

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Written by Barbara Schaffer for the RSDSA blog.

My name is Barbara Schaffer. I am 70 years old and have had RSD for 32 years. It started with a stretched brachial plexus and spread through my entire body.

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Written by Patti Sauer for the RSDSA blog.

I broke my tibia sometime around January 2018. After walking on it for four months, enduring several misdiagnoses, and fighting for an MRI, it was confirmed in April that I had a stage 4b break with edema in the bone marrow. This is the worst kind of break and worst stage of a break.