Year: 2019

Written by Susan L. Schildt for the RSDSA blog.

I have been asked, as a sibling of an RSD Warrior, to share my thoughts and feelings on this wicked disease.

I am not good at sharing my feelings, but as I thought through this I thought that using the letters of the acronyms of this disease might be the way to go to describe what the disease does to the patient and family.

RSD – Letters that define a disease of Intense burning sensation.

R

Robber of quality of life for patients

Robber of quality family time due to suffering of patient

Robber of anticipated fun events, hopes, and dreams due to the burning sensation that cripples the individual and the family who stands by the individuals side helplessly standing by, at a loss to provide comfort physically or emotionally.

 S

Sadness that is a part of watching all of the “robbery” described above and once more unable to provide real comfort in the face of anguish and despair.

Suffering  that comes from watching the patient suffer and suffering inside because you cannot help. Suffering because you do not have anyone to talk to who understands and suffering from trying to hide your own feelings so as not to burden the patient anymore than they are already burdened by the disease.

Sadness from watching caregivers work so tirelessly to provide comfort in any small way and unable to do so then carrying their sorrow inside with no real outlet.

D

Deception is part of the disease because from the outside one often times appears to look healthy while a raging inferno burns inside thus creating isolation from friends/ family because they feel the patient is making unfounded excuses to not participate in events or activities. Isolation for both the patient and caregivers then ensues due to lack of understanding and helplessness of “outsiders.”

Devastation on the part of the patient and watching the patient miss long awaited, hoped for events/festivities because the pain is so excruciating to venture out.

While I am not right in the midst of all of the above because I live miles away, hearing the anguish in voices, devastation from crushed aspirations and tears of helplessness and frustration are sometimes more than I can bear as I, too, feel helpless to soothe, comfort, fix the situation for those I love.

Please consider making a donation to RSDSA today!

Written by Carrie Cleary for the RSDSA blog.

I had my first spine surgery, a laminectomy in 2008, at the age of 45. That was followed by a multi-level fusion in 2009. This is where we believed the CRPS started.

I had two cervical spine fusions a few years after this. I had nerve blocks for the lumbar nerves every three months for years. After years of pain on and off then just on, I had a Spinal Cord Stimulator implanted in 2016. I was still taking opioids and living in Northern Illinois where the barometric pressure changes and months of bitter cold were killing me. Barometric pressure changes cause the tissues in your body to swell and push on nerves.  My docs told me I had to move south or I was going to be crippled. So after a lot of research, my husband and I moved to Pinehurst, North Carolina.

We moved in 2018 and in 2019 I was again having horrible lower back pain that radiated down my left leg. We went up to Duke University Spine Center where after months of tests they did a full spine myelogram and found that L4 & L3 were popping out in opposite directions. I underwent fusion surgery 6/18/19. I woke up and I was paralyzed in my left leg! I was terrified! They went back in again that night but could not fix it. The L4 nerve was damaged after being pinched and would have to regenerate.

I could not feel my leg. And THEN on the 5^th day, nerve pain started. I explained it to people that it felt like my skin was being peeled back and fire ants with little knives were on top!! NEVER in my life have I felt anything like this! They had to drug me up to the point I could not hold a conversation for 12 hours to get it under control.

Two days later I was taken by ambulance to an Inpatient Rehab Center in a hospital in Pinehurst. The pain in my leg would get worse at night and I would fear 6:00 pm. I could not sleep for days. Nurses would put a desensitizing cream on my leg and I would scream! We tried ice and heat. I could not even handle any sheets or blankets on my leg. Everything was crazy painful. Thankfully it was summer and I just wore shorts. There at PT & OT I learned to get into bed while using my good leg to lift my paralyzed one, get to the toilet safely and sit down using grab bars, take a shower & learn how to step into it (I use a shower chair), get myself dressed & how to get in a car from my wheelchair. The walker was only used for a few steps, while concentrating on clenching butt muscles because my knee was hyper-extending, meaning bending backwards. The nerve that is damaged controls the muscles in my left leg. When the nerve cannot send messages to the muscles, you have to learn to control those muscles a different way.

My surgeon said I would heal in six months and I thought he was crazy. I am now at five months and they have changed it to one year.

Since I have CRPS/RSD on top of this horrific injury, I have burning, stinging and aching in my lower leg and knee due to both. I am very concerned that this pain will only diminish a little and I will have to live with most of this. When you touch the surface of the inside of my calf, I can’t really feel it. I had a filament test done and when they touched the inside of the calf and I could not feel it. That is a concern, as you need to feel it in order to not hurt yourself.

I started having Biofeedback with a Pain Psychiatrist at Duke. Some of the things she has taught me could benefit many on this blog.

• Keeping your surface body temperature at 88° is very important to help the tissues in my leg.
• Getting enough sleep is very essential. The body needs 6.5 continuous hours of sleep to relieve the brain of toxins it accumulates during the day. This will help memory.
• Chronic pain increases susceptibility for infection. Get your flu shots & wear a mask in doctor offices.
• Nutrition is very important. Eliminate items that cause inflammation such as sugar, dairy & red sauce/cooked tomatoes from your diet.
• Moderate exercise is also needed. Working out in water does wonders for many.

This is a regular day where I have PT: I set an alarm on my phone for all of my meds. 1 a.m. pain meds, 5 a.m. nerve meds & a muscle relaxer, 7 a.m. pain meds and I get up. I get my coffee and then get in the shower, using the shower chair. I get out and have an additional towel sitting on my rollator walker. I sit on that at a vanity table I had to buy in order to put on my make-up. Then I go back in the bathroom and blow dry and style my hair while sitting on the walker. I am already pretty exhausted. I carefully pick out clothes as my leg is so sensitive so I can only wear a few things. Once it got a little colder here, I bought some Sonoma brand lounge pants at Kohls. I also bought Cuddl Duds (they also make sheets!) & Simply Vera pajamas and a few lounge pants that are super soft. You have to go touch things and cannot order online because only the softest stuff cuts it. At 9 a.m. I take a handful of vitamins and maintenance drugs as my immune system is compromised from the chronic pain. This is not unusual for CRPS patients. I drink a protein shake and head to PT with my wheelchair by 10 a.m.

I’m very lucky that my Physical Therapist, Brent, totally gets my issues. I started seeing him right after we moved here. I can’t stress enough how much PT is important for all of us. Before surgery, he did dry needling, which is trigger point therapy. I have also had Myofascial Physical Therapy which I HIGHLY recommend. Brent now helps me with stretching, mobilizing techniques, stationery recumbent bike, sit & stand core exercises, cupping, Kinesis tape, balance work and walking exercises.  Without him, I would not be mobile at all. I go three times a week, which I know is a lot, but so important right now.

After PT, I go home and have lunch and a nap. I like to use the heating pad on my leg to help the discomfort. I take pain meds again at 1 p.m. If I am having a bad day, I go back to bed for up to four hours. Sometimes I sleep through the pain or I read & watch TV. I have a blanket support at the foot of my bed to keep the blanket weight off of my feet. I also have jersey sheets that feel like a soft t-shirt because my leg is so sensitive. Other days I try to assist my husband with chores. I also spend a lot of time reading in my recliner. I have the kind that can stand you up. It also has heat. I purchased a Drive brand medical kitchen chair from Bed, Bath & Beyond as well. This allows me to sit at the counter or in front of the sink or stove. I used to love to cook but it is very difficult now. I try to make soup in a big pot that I can freeze in portions. By cooking your own food, you know exactly what is in it and more importantly, what isn’t. I try to put Turmeric, to reduce inflammation, in almost everything. It may take me all day to do it, but it is helpful. At 7 p.m. I take pain meds and nerve meds and at 9 p.m. I take an anti-depressant that is also for nerve pain.

I live in a 55+ community. People wondered why I moved here so young but we reduced our house size drastically. It is a one level and all outside work is done by HOA. It is not as nice as our old house, but it is making our lives so much easier. We also have many activities here that I can attend. They usually only last a few hours. It is so important to socialize even if you are not 100%, because truly most of us will never be that again. If I am at 60%, I am happy right now.

Having a support system is EVERYTHING. It may be us in this group, your family or friends. I was working as an accountant up until this last surgery. I do not know that I will ever be back full-time again. I have applied for social security disability.

I frequently have people that ask me when I am going to be out of this wheelchair or when am I going to get better. Would you ask a cancer patient that? Heck no! But remember, it is not your job to explain your diagnosis or situation to anyone. We are lifers in this together. But we can share our stories and methods of functioning so we can learn from each other. You never stop learning and should never stop trying alternative methods. It is never going to be just the pills that get us by. Keep an eye out for studies and keep reading these blogs for new ideas and suggestions. Try to keep an optimistic attitude. If you are depressed, which many of us are, see a doctor and get on some medications. Trust me. They help.

Carrie is a 56-year-old woman now living in Pinehurst, NC, after relocating from Northern Illinois. She lives with her husband, Mike, and their cat, Puck. She is an avid Chicago Blackhawks fan and she enjoys socializing with friends, reading, traveling & cooking.

Please consider making a donation to RSDSA today!

Special thanks to Olivia Erdman for the taking the time to create this amazing vlog for her YouTube Channel. Take a moment to watch to learn more about her diagnosis, journey, friendships, and more.

Please consider making a donation to RSDSA today!

Written by Colleen C. Ross for the RSDSA blog.

How and when did you develop CRPS/RSD?

Well, that is actually a really great question! I suffered a back injury around 2008ish, did not really get adequate medical treatment until 2009, and opted for a laminectomy at L5-S1. I pretty much knew right after surgery that things seemed much worse, but all of my concerns were dismissed and I was basically told that I just wanted the pain pills.

After horrible results from a round of epidural cortisone injections, I opted to just realize that this was my new normal. That really did not last long though because by 2011 I was a hot mess, literally. My new PCP chalked it up as thyroid issues, which would eventually result in me having a thyroidectomy due to believing there was a very big chance that I may have thyroid cancer. I honestly felt even worse after that surgery too. Again, accepting my new normal, I pressed on working as a prep/line cook in a restaurant. That was extremely tough!

In 2016, shortly after changing jobs, my appendix ruptured and I had to have an emergency appendectomy. Again, I was not okay after this surgery. I ended up with an abscess, had to have a drain put in my body, which resulted in another hospital stay. I went back to work within a month of all of that, which is the normal amount of recovery time for a regular appendectomy, let alone all of the added complications. Due to the nagging and bullying by a co-worker whom was also a “supervisor” and a long time close friend, I went back to work before I was physically ready, but I could not afford to lose my job. When people told me, that able bodies people will never “get it” until they got it, they really nailed it there!

In March 2018, my body finally gave in. With my entire left leg screaming and pounding in pain accompanied by my back in excruciating pain as well, I went to my closest ER in the middle of the night. A CT confirmed my worst fears: my L-4 and L-5 were now both herniated and my L-3 was bulging. That started what has been a whole other merry go round of doctors and specialist appointments, most resulting in either being turned away or very limited options.

In May 2018 I noticed my left leg was a completely different color and temperature than my right leg. It kind of made me panic because they had tried another “nerve block” a few weeks before that and I feared I was having a reaction to that. That night was the first time I had ever even heard of CRPS/RSD. As I began researching about it, the last 10 years of my life and all the crazy symptoms I had been having were flashing before my eyes in script on a computer screen. The next day I made an emergency appointment with my PCP and between her and her nurse, they agreed that they too believed that I had CRPS/RSD. After months of waiting for an appointment, I was officially diagnosed with CRPS/RSD type 1 by a pain management specialist in 2019. He proclaimed that he felt that I had most likely had CRPS all the way to either before my back surgery, if not indefinitely after my back surgery. He also felt that I needed to have a DRG implanted and my fiancé and I actually left that appointment feeling the best we had after leaving an appointment in a very long time. It was short lived though.

What has daily life been like since your diagnosis?

At first, it was a relief because I finally had a diagnosis and knew that everything I had been experiencing all those years was not “just in my head” like everyone was telling me, or that I was “just really crazy” as my “friends” told me. I also figured, “okay, I have this diagnosis, there is tons of information about how debilitating it is, as well as the fact that it has no boundaries.” So I figured that “great, at least now I will get adequate medical treatment” and hopefully even start to get some quality of my life back! Yeah, that did not happen either. I just keep on going though.

Even before the back pain, life was always a struggle for me in one aspect or another. So now, it is almost like I have realized maybe my life was so tough because it was preparing me for life with CRPS. I probably will never know the answer to that question, but what I do know is that life with CRPS is not for the weak. At 36 years old, my quality of life is not great at all. My mobility is limited, my mental health is not good, I do have major concerns for my general health and the route I had to take for pain management, but as I always have, I just keep going, waiting for my turn, to hopefully get the best relief I can from the symptoms that plague me the worst.

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

Remember, we did not ask for this to happen to us. We do not want to be in this situation AT ALL. Instead of accusing people with CRPS of being crazy and attention seekers, just try to understand them and MOST DEFINITELY if you are friends with someone who has this, or gets diagnosed with this, do not abandon them. Be there however you can for them and even if you know they might say no, include them. Try not to complain to them about things YOU KNOW for a fact they would do anything to be able to do. Offer to help with tasks that are really easy for you to do, but you know are horribly difficult with someone who has CRPS/RSD. Most of all, learn as much as you can about this disease so you can try to understand the best way possible what we are going through. And if you make a commitment to someone with CRPS/RSD, do the absolute best that you can, to follow through with it. Obviously things happen, as everyone has their own lives and own responsibilities, but I am referring to the people who are always offering to help and then are always either backing out for a ridiculous reason at the last minute or ignoring them all together.

For me, being ignored and not included is probably the hardest. Before March 2018, I was a really good friend to certain people for many years by babysitting their kids for free and bringing them food when they were sick. Most of my friends I worked with, so on many occasions I went in for them if they needed me to. I would cook dinners for them, watch their pets, let their pets in and out if they went on a weekend getaway, and generally be there for them when they had an emergency, no matter how big or how small. For a majority of those years, I was a very able body person who did not drive, so a lot of those tasks were a little more difficult than it would have been if I had drove myself. I did it though, and I enjoyed doing it, or I wouldn’t have done it. I never expected that those people would not be there for me during the time I needed them the most, but that is the way it is now. I cannot change any of it, so I know who I can count on and who I cannot. I have realized that some people just cannot see past their own existence and their own wants. I am at peace with that, but I will never stop challenging people to be better than they were the day before.

What advice would you give to newly diagnosed Warriors?

Reach out to other Warriors as most of us have a pain management tool box that usually does not include immediate help from a medical professional. Learn as much as you can about this disease as most seasoned Warriors have links saved with a plethora of FACTUAL information! I have found great comfort from the CRPS/RSD support groups on Facebook and I suggest you join a couple and see if it is a good fit as there are tons of them. If one is not a good fit, try a different one.

BE YOUR OWN ADVOCATE! No one is going to fight for you more than you will fight for yourself! Do not get upset if you lose friends, even if you never imagined your life without them. This is not a life for weak people, and it is best to weed them out now rather than let them continuously let you down, or give you bad advice. I have found that controlling my emotions the best way I can by not getting mad or upset keeps the worst of the worst symptoms away. Do not put up with toxic people (weed them out too!) as they will only make things worse in the long run. I had a friend who was like a sister to me and she knew how to push my buttons. I was dumb enough to let her and my life has been more peaceful since I quit talking to her. The amount of time you have been friends with someone does not really matter as it is how they treat you that matters. I would rather have four quarters than 100 pennies, and thankfully my quarters now are worth more than .25 a piece. My tribe is amazing and I know I can trust them all 125%.

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

This might not necessarily be advice, but to the ones who have knowingly been Warriors for many years, THANK YOU! Thank you for paving the way for newly diagnosed Warriors like myself. Especially thank you to the ones who have started the support groups, spread awareness, and are networking years of valuable information to help others! I honestly would have been lost without you all! I have yet to find a more amazing community, than the CRPS/RSD community! Everyone just wants to help you, or even just be a friend and talk about what helped them.

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

That is a tough question, because I am still navigating my way through the healthcare system and trying to find a treatment that is actually available to me. I did have a spinal cord stimulator implanted, but I have had some complications and major setbacks with it and honestly do not know what is going to be the end result of that. However, I hope it is something positive.

My daily life consists of a list of medications, with a very little side of actual pain medication that is not really at the best therapeutic level for me. It gives me relief, but it’s basically just enough so that I am not in so much pain that I am screaming, all the time. PURE full spectrum CBD has helped, along with an array of creams, salves, and lotions that either myself or my fiancé massages on the problematic area. I had a jacuzzi tub installed and that has given me tremendous relief! Water has been one of the few things that has consistently given me relief throughout all of this, even prior to my diagnosis. I have had luck with meditating music on YouTube, whether it is just to have calming music in the background or to fall asleep. The combination of that and a good massage after a relaxing bath is basically how I am able to get some sleep. Sleep helps me to be better mentally equipped for whatever crazy symptoms this disease decides to throw at me! The body tremors and spasms are pretty difficult to control, but magnesium supplements help. I have not found anything that I have been able to use to really get back to living my life.

Anything else you would like to add?

It is easy to get frustrated and want to just give up. However, I keep telling myself that I have made it this far and have been through so much so I must be here for a reason. Therefore, I refuse to give up. I may say I want to, in a moment of desperation, but that is also the thing that I remind myself: it is just a moment and eventually that moment will be gone.

I am truly very blessed to have the amazing life that I do, and that really helps me to keep pressing on. I have a 16-year-old daughter who is just purely nothing short of amazing and is really more responsible and resourceful than most adults I have met. She helps so much around the house and actually cooked ALL of Christmas Eve dinner by herself last year because I was in such rough shape. I wish I could keep her home forever, but I will not let this disease take her life too. She has so many amazing plans for her life and I will support her every way that I can.

My fiancé is really a force to be reckoned with and we both feel that we really have something special together! We have known each other since we were 13 and were friends for many years, prior to dating. He really is cut from a different cloth than the rest! I really am blessed to have him and to call him mine. He’s been through all of this with me, and has never left my side. He is now my main caretaker and manages our household, finances, grocery shopping, chores, helps me keep on track with my meds, will massage me whenever I ask, stays up at night with me when I am struggling, and anything else I need as well as working as a full time mechanic in a very busy garage. I have my mom, aunt and fiancés parents too as well as other family and a small group of friends. There is so much that keeps me going, and even in the worst of it, I have so much to be thankful for.

Please consider making a donation to RSDSA today!

Written by Lisa Marie Weiner for the RSDSA blog.

Please consider making a donation to RSDSA today!

Written by Madison McKune for the RSDSA blog.

I know your favorite stories start with the classic phrase of “once upon a time”, or have these amazing, colorful, vivid, superheroes that somehow in the brink of the scariest moments turn bad into good. I know that this diagnosis you just received seems like one of those scariest moments. That all these new faces and doctors, needle pricks, and hospital stays seem like you are living your least favorite fairytale, or that you are now a pawn. Let me assure you sweet child; you are exactly where you are supposed to be. You are not lost; I and all the other warriors in this community are holding your hand.

I, Madison McKune, am holding your hand, and we are going to get through this together just like the board game “The Game of Life.” I am nineteen years old, and currently enrolled in college in Georgia. I aspire to be a nurse anesthetist with a concentration in pain management. I have been fighting this ‘monster’ since I was ten.

I went from trick-or-treating, coloring, playing board games, dressing up in silly costumes and playing with my friends to seemingly overnight living the villain’s role in a life that no longer aligned with my own. I underwent a meniscus repair surgery; then afterwards developed pain which I did not know how to explain to my parents. I was afraid to tell others, especially doctors, how bad my pain was. I wanted to fit in with all my other friends. My friends that were living “normal” lives. But my new warrior, SPEAK UP! Do not be afraid.

I lived in and out of Children’s Healthcare of Atlanta for six months, during which time I was unable to walk. The doctors whom tried to help me were unable to properly diagnose what was going on in my body. It was not because I was a “villain”; rather, it was because of how special I am that I needed a special team of doctors from Boston Mayo Clinic for kids to work together and properly diagnose me with this long word, which seemed like the entire alphabet stringed together in a bowl of soup, called Complex Regional Pain Syndrome. After being diagnosed, I was able to come home (finally!), with my parents and through lots of physical therapy and Lumbar Sympathetic Nerve Blocks my body was able to heal. For five and a half years I was in remission.

In the fall of 2016, I had Bronchitis which snowballed into Pneumonia and Pleurisy. After being released from the hospital my unwanted friend, CRPS, returned. Since then, I have been receiving special treatments called Ketamine Infusions and Stellate Ganglion Nerve Blocks every time I experience pain. I know these are big words, but really its just extra special medicine my pain management doctor gives me to make me feel better.

When I was first diagnosed, I was limited to the activities I could do, most of which included being in bed. I played lots of board games, my favorite being “The Game of Life”, and watched countless Scooby Doo movies. Even “The Game of Life” which seemed to have every milestone on it; and Scooby Doo where the mystery team always caught the bad guy could not have prepared me for the battle that I was about to face. Young warrior, all the different colored pills you see, they are special superhero medicines that are going to help make you stronger and feel better. All the doctors and new faces you are about to see, they may seem like a blur of colors, but they are going to help turn from a scared warrior to a superhero with an invisible cape. And next time you go to play a board game, pick up your favorite game piece and know that it is YOU, you with an invisible cape already capable of capturing the villain, just like the mystery team. Because I am holding your hand along with all the other CRPS warriors.

Just like any board game, to get from start to finish is never short or easy. This journey that you have just been given the OPPORTUNITY to fight is not going to be short. But you, YOU my new friend, you CAN and WILL fight this monster, and just like the mystery team you will conquer this as long as you remain true to who you are, keep living each day to its fullest and wear your invisible cape.

Buckle up my little warrior! We are going on an adventure together, and together we will solve this mystery and find a cure for this “villain”.

Please consider making a donation to RSDSA today!

Written by Alissa Brown for the RSDSA blog.

How and when did you develop CRPS/RSD?

I turned around too quickly on a tile floor which resulted in a sprained knee and CRPS. This happened in January of 2010.

What has daily life been like since your diagnosis?

Somehow, every day is the same, but also extremely different. I am always in pain and struggle to force myself to get out of bed, but once I am out of bed, it is all up in the air. First, I will let my dogs out and figure out what kind of weather is going on outside, then I pop my pills and start to get ready. I have to decide what to wear based on weather and the kind of pain day it is. If I am burning hot and my leg feels like it is on fire, I will put on light pants regardless of weather. If I am cold and have more of a bone-deep pain, I put on something warmer, heavier, and softer.

My job, where I teach anywhere from 9-140 kids at a time, requires me to be on my feet all the time, but that is extremely hard to do on most days. I often teach while sitting on a chair if it happens to be a day where standing is rough. On days when sitting is harder, it is not so difficult to do, as long as it is not a game day or competition day, where I may have to sit on a bus for hours.

When I am finally home after a long 12 to 20 hour day, I am so beat that I just want to go to bed, but I NEED to have a shower before I go to bed. I will get home, greet my dogs, and head to the shower. Most days, I do not shave because I cannot handle it. When the day time takes so much out of you, you cannot handle being pushed over the edge by something like shaving. I already feel like I have a sunburn that is being scrubbed with sandpaper while my bones are being drilled constantly. Whether I shave or not, once I am out of the shower I am done for the day. I lay down with my dogs and either throw a toy for them or just cuddle until it is time for bed.

If I am lucky, I will fall asleep right away, but that is extremely rare. Usually I will lay there for a few hours, switching positions constantly, until I finally drift off into a restless sleep.

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

Not every day is the same! I may feel well enough to do something (like go to an amusement park or something with my family) one day, but not the next. In fact, if I push myself one day, you can pretty much guarantee that I will be paying for that for the next week or so.

Also, please understand that sometimes when I snap at you, it is not about you. If you accidentally bump into me and I am having a high pain day, I may react rudely or just ignore you all together. Understand that once you walk away, I am beating myself up for snapping at your or reacting in a way I shouldn’t. Sometimes it takes everything I have to refrain from screaming and yelling from the pain as I go about my everyday life, so every once in a while I may be caught off guard and those walls will fall, resulting in everything I am feeling flooding out and coming off as rude. It is not because of you, it is because of Sparky (my leg lol).

What advice would you give to newly diagnosed Warriors?

Not everyone is the same, so try not to get frustrated when you hear about something that works for someone else, but is a complete fail when you give it a try. You will find something that works for you, but it may take many tries and fails to get there.

Keep trying and turn to those who have your back. They will never understand the pain, but if they are truly in your corner, they will try to be there for you anyway.

Be prepared for any and every kind of day, so pack whatever you need to pack. If you need to always have extra meds, blankets, jackets, etc on you, do it.

Do not push yourself to do too much. And if you need a cane, walker, crutches, or a wheelchair, use it!

Join every CRPS related group that you can so that you can get ideas from others.

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

I had a Spinal Cord Stimulator implanted back in 2011. It has really helped me to get some relief. The best part is that when the pain changes, spreads, etc., I can contact the company it belongs to and they will reprogram it for me.

Sometimes, the softer the material, the better. I find that silk helps me sleep if I wrap it around my leg since it is a softer material than my quilt. I also carry it around like a safety blanket in case it is unexpectedly windy outside or I have to sit somewhere where my leg may touch something or someone.

My heating blanket has been a life-saver for those days when I am freezing bone-deep.

Please consider making a donation to RSDSA today!

Written by Kelly Considine for the RSDSA blog.

How and when did you develop CRPS?

Imagine being turned away from doctors when they learn of your CRPS diagnosis.

Imagine being told you would be better off having cancer.

Imagine not one, but several doctors recommending an amputation when they do not fully understand the underlying issue.

These are just a few of the things I have faced after being diagnosed with Complex Regional Pain Syndrome (CRPS).

On September 5, 2005, the first week of my senior year in high school, my life changed forever after spraining my ankle playing volleyball. I had sprained my ankle and suffered various sports injuries growing up, so I was very upset when I quickly learned this was not a typical sprain, and instead of the pain improving, it was actually worsening in intensity and spreading to a larger area. After various x-rays, bone scans, and nerve conduction tests, I was diagnosed with CPRS, a condition I had never heard of. My doctors believe that I pinched a nerve which setoff the CRPS cascade.

What has daily life been like since your diagnosis?

My CRPS diagnosis came at a crucial time in my life. I should have been excited about senior year, graduation, and picking a college, but instead, I was consumed with countless doctors and physical therapy appointments.

Instead of attending my dream school, I had to pick a college that would meet my accessibility needs. During school break when everyone was looking forward to resting, I was busy with procedures and surgeries so I would not miss class. Every semester I shed tears trying to decide if I should return to school or take time off to heal. I am proud to say I returned to college every semester and within five years I earned two Bachelor’s Degrees in Biology and Chemistry, three Minors, and a Master’s Degree in Chemistry.

After my injury, gone were the days of playing sports, something that I had grown up doing. It was difficult to adjust to life on the sidelines where I was keeping stats and cheering on my teammates instead of being on the court. I did not know it at the time, but this was just the tip of the iceberg when it came to the adjustments that would need to be made to adapt to life with CRPS.

I quickly learned that living with CRPS involved more than just pain. Everything in my life is strategically planned to minimize my pain. For instance, showers are never enjoyable because even the softest cloth feels like I am using sand paper, and the running water causes excruciating pain so I must submerge my injured leg in a bucket of water so I do not feel the flowing water. Even wearing pants is painful when the fabric rubs against my leg. Going out in the wind feels like I am being kicked in the shin so I wear an AFO for protection.  

Living with CRPS often leaves me feeling like a guinea pig because there is no cure so the best that can be done is to treat the symptoms with medications or physical therapy. There is no good option as medications come with side effects, and PT is exhausting and painful.

I have been riddled with other diagnosis including:

• Gastroparesis – food sits in my stomach because it is essentially paralyzed which has led to anemia and extreme weight loss causing me to rely on a feeding tube and a catheter in my chest to obtain nutrition
• Postural Orthostatic Tachycardia Syndrome (POTS) – inability of my body to regulate blood pressure and heart rate leading to dizziness which makes standing nearly impossible because it results in fainting
• Small Fiber Polyneuropathy – over 99% of females my age have a higher nerve count than me and doctors have looked into autoimmune conditions but all of the tests have been negative which leads to more testing, more waiting, and more referrals as I get passed from doctor to doctor when they feel my case is beyond their scope of care
• Ehlers Danlos Syndrome (EDS) – hypermobile joints that increase my risk of injury
• Autonomic Dysfunction (Dysautonomia) – poor regulation of the autonomic nervous system which controls breathing, blood pressure, heart rate, digestion, temperature, and more causing me to experience lightheadedness, dizziness, low blood pressure, fainting, weakness, and a loss of appetite
• Osteoporosis – weak, brittle bones
• Raynaud’s Phenomenon – abnormal spasm of the blood vessels which decreases the blood supply to the local tissues causing temperature changes and skin discoloration
• Compromised Immune System – low white blood cell and other immune cell counts

Unfortunately, procedures/surgeries often caused my pain to spread. After one surgery I developed a movement disorder that made it impossible to do everyday tasks. My mom quit her job and moved to an apartment near my college to help me with the things I could no longer do. I am beyond thankful because without this sacrifice, I never would have been able to finish my degrees. Even today, at 31, I need help brushing my hair, buttoning/zipping clothing, and tying my shoes. I have had to adapt how to hold/grip pens, pencils, utensils, cups, etc. So much thought goes into doing basic, everyday tasks.   

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

I wish people understood that every day is a battle between what I can physically do and what I wish I could do. After my diagnosis, I lost a lot of friends who did not understand that I could not keep up with everyone as I once could due to the constant, excruciating pain. Do not be afraid to ask questions to learn more about CRPS. Ignorant individuals have accused me of faking my condition for attention because CRPS is an invisible disability so you cannot see my pain and suffering or the daily battles I face. Imagine being told the pain is all in your head or being doubted by your doctors, family, and friends. I am not a “faker” or “attention seeker.”  It is frustrating having to prove the severity of my pain.  Twenty four hours a day, seven days a week I am reminded of my CRPS, and I still find it unbelievable that such a horrible condition exists.

Being told “you look great” can be a compliment, but it is also very frustrating.  People do not see how much time I spent on my hair and makeup to look “healthy,” and they do not see that after a function I crawl back into bed.  I have countless, sleepless nights, but every day I have to get up and go about my commitments like usual. People don’t see how much effort I put into every single task because I always put on a smile and try to be present and enjoy the moment.

I always share the “good” days on social media, but people rarely see the other days.  There are times I don’t even have the energy to reply to a text message, some days I have throbbing pain above my baseline, and other days I may black out from blood pressure issues. I never have an appetite and eating causes extreme pain and nausea, but I set alarms to remind myself to eat because I know I need the nutrition. Through it all I persevere. I have accepted that I am going to have good days and bad days. For everyone that stays for the good and the bad, thank you for sticking with me through it all.  I know the bad days will pass, and I have a group of amazing people who are waiting there to support me!  Showing compassion or sending a text to check in goes a long way! It reminds me of my wonderful support system who never lets me face these obstacles alone.

I have been lucky enough to have the most supportive friend who has been by my side since the beginning. When I was in the hospital for three weeks, she took time off of work to stay with me. She was aware of the McGill pain scale which ranks CRPS pain higher than childbirth, so when she gave birth to her son she held off on receiving medication so she could experience just a little of the pain that I feel 24/7.  I would never wish my pain upon anyone, but for her to think of me and try to walk in my shoes is true friendship!

I wish others understood the planning that goes into just leaving the house. It is essentially like packing a diaper bag because I need to think about food, medicine, bathroom accessibility, how crowded it will be, etc. Before I get to an event I am drained from packing and getting ready. Going to an event may increase my pain and exhaustion meaning that I have to forgo plans/activities later in the week.  It is all about finding the perfect balance. I still want to have an active social life, but I can’t let that compromise my health because pushing myself too hard makes it difficult to recover.

What advice would you give to newly diagnosed Warriors?

I would advise recently diagnosed CRPS Warriors to do your research! You have to feel comfortable with your treatment plan so it is ok to say no to a doctor’s suggestion.

For instance, one doctor recommend alcohol injections to kill the nerve endings, but my research revealed that it also damages and kills the surrounding, healthy tissue and muscle so I did not proceed with this option.

On another occasion, my doctor suggested a ketamine infusion but misled us when he said I had about an 80% chance of improvement. I wanted to proceed, but my dad had a gut feeling and could not let me go through with the treatment. He called the doctor to let him know of his apprehensions, and we were told it was a good choice since I only had a 30% chance of improvement.

Unfortunately, over time my foot became contracted and was constantly pointed.  Three different orthopedic surgeons recommended an amputation which I knew was not a viable option as it can cause the nerve pain to spread.  Another doctor wanted to do an ankle fusion, and yet another wanted to lengthen my tendons as an outpatient procedure. Having previous surgeries, I knew I needed several nerve blocks to prevent the spread of my CRPS, and when I brought this up to the doctor he said it was a great idea which did not sit well with me because I should not be the one outlining the surgical plan. I knew he was not the right physician for me.

NEVER proceed if you are uncomfortable with the treatment plan your healthcare team proposes. Do not be afraid to get second, third, or more opinions, ask lots of questions, and always speak up for yourself!

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

To the veteran Warriors who have battled CRPS/RSD for many years, I would say don’t give up. As the days, weeks, and years continue to pass by, we have to stay positive. It is easy to look back at how long we have struggled with CRPS and get discouraged. It is important to find something you are truly passionate about to help you get through your difficult days. It is ok to feel sorry for yourself, and ask “why me?”, but dwelling on these feelings can be detrimental to progress. Always hold your head high! You may not have achieved the dreams you hoped for, but it is ok to make new goals. Celebrate every accomplishment! When you have lived with CRPS/RSD for many years, your days are filled with doctors appointments, physical therapy, calls to insurance, timed medications, and more, but do not forget to make time to recharge. Listen to your body because every day will be different.  Take it easy when your body tells you to rest, and enjoy yourself and let loose when your body decides to cooperate! There will always be good and bad days, so when a good day comes along, take the win. When you experience the bad days, it is ok to make your health a priority.

Walk away from the people and situations that bring you down.  Living with chronic illness for an extended period of time allows people to show their true colors. Certain friends and family members will surprise you in amazing ways and really step up to support you, but at the same time some people will walk away and let you down. Do not exert your energy on a one sided relationship as you deserve so much more! CRPS may have taken away certain relationships, but that just meant it allowed the truly valuable and genuine friendships to flourish! Never be afraid to ask for help if you find yourself struggling mentally or physically!    

Never lose your identity… you are not your illness, you are so much more! CRPS has interfered with many of the things I have loved, and I have not YET achieved my dream career, but it has not stolen my spirit and persistence. As I write this and reflect back on my experience with CRPS, I realize that I have lived almost 5200 days in pain after suffering my initial injury.

CRPS may have changed my world, but it hasn’t changed me. It has taught me to work harder to achieve my dreams and to truly appreciate the positive things. CRPS has brought me my darkest days, but in turn, it has illuminated some of my happiest memories. Always remember to reflect on your accomplishments because they are that much more special knowing what you have achieved despite the challenges you have faced.

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

I have found some pain relief with medications and my spinal cord stimulator, and I found aquatic therapy to be more beneficial than land based PT, but unfortunately I have not found the “magic” fix that offers me the relief I dream of. I hope that increased awareness and research leads to a cure/treatment in the near future!

The best thing to have happened to me since my injury occurred two years ago when my life changed in such a positive way after adding my Golden Retriever, Gunner, to the family. I have discovered that working with Gunner and training him to be my service dog helps take my mind off of the pain and struggles of the day. I decided to self-train Gunner because there was a two year waitlist and a $25,000 price tag for a trained service dog. At nine weeks old Gunner immediately approached my wheelchair and quickly fell asleep in my lap. My mom, dad, and I were in agreement that this was the puppy for me… he picked me! I decided to name him Gunner which means battle strong and bold warrior because I knew he would help me overcome any obstacles that stood in my way. Prior to brining Gunner home I wouldn’t get out of bed on bad days, but I can no longer do that because he deserves attention and it is not fair to ignore him when I am not feeling well! He absolutely loves training and playing, and he helps keep me motivated to get up and be active. He gives me great purpose which is crucial when your world is consumed with chronic illness. Gunner just turned two and already knows so many commands including:

• Retrieving medication and water from the cabinet and refrigerator, respectively
• Opening and closing doors
• Turning the lights on and off
• Finding help and getting someone to follow him to me
• Applying deep pressure therapy to help control my blood pressure
• Alerting me to changes in blood sugar and blood pressure
• Nudging my hand when I start scratching (I have such bad nerve loss that I start bleeding without even realizing it, so Gunner stops me before it gets to that point)
• Crawling under my legs and lifting them to restore blood flow to my brain if I pass out
• And so much more!

He is always looking to learn something new!  He gives me great purpose which is so crucial when your world is consumed with chronic illness.

If you would like to follow our adventures, you can find us on Instagram at @gunner_the_golden_boy, YouTube at , and Facebook at !

What else would you like to add?

Here are 14 tips that I want to share with other warriors. These are things I have learned along the way, one for each year I have suffered with CRPS:

1. Be your own advocate!
2. Keep your head held high through the ups and the downs, but always look for the positives regardless of the obstacles you face.
3. It is ok to say no to plans and make your health a priority.
4. Listen to your body, you know what you are capable of.
5. People struggle to understand because you are suffering from an INVISIBLE illness.
6. You are not a failure; you’ve only failed if you have given up, so keep persevering.
7. Keep fighting and following your dreams because you can still live a fulfilling life with chronic illness!
8. Surround yourself with people that will lift you up, make you laugh, get you through the tough days, and celebrate the good days!
9. Don’t be afraid to ask for help, your true friends will become apparent when you need them most.  You will lose friends along the way, but that just makes room for the genuine people in your life!
10. Find what makes you happy and helps distract you from the pain.
11. Smile through the good and the bad.  Smiling releases neurotransmitters that can improve our mood, relax our bodies, and reduce physical pain!
12. Be proud of yourself!  Each and every day you accomplish so much, even if it just means getting through the day when your symptoms are especially bad.
13. Find people that support you not those who sympathize with you.  Battling CRPS is like climbing a mountain.  When you are standing at the bottom it looks overwhelming but once you start climbing and have people cheering you along you can push through any obstacle you face, so keep climbing!
14. Tell your story to anyone who is willing to listen because only through our own experiences can we bring awareness to invisible illnesses.

Stay strong warriors!

Please consider making a donation to RSDSA today!

Written by Shannon McMullen for the RSDSA blog.

How and when did you develop CRPS/RSD?

I developed CRPS in spring 2018, following multiple ankle sprains that never fully healed. I was cleared to run again by my doctor, but that led to aggressive tendonitis that would not go away. Eventually, I was in a boot and on crutches for some time to try to give my ankle a rest, and after that the CRPS came on. It was very hard to get a diagnosis as the physical therapy place I was going to did not understand why being in the pool was painful (told me to do it anyway) and they did not understand why touching my foot was so painful.

Eventually, we went to another physical therapist who worked tirelessly and tried everything, and I mean everything, to figure out what was going on. Having seen a CRPS patient before, he knew the signs. I will never forget the day he told us that we needed to go someplace big before this got even worse. After that, I did end up in a rehab program for three weeks and I am eternally grateful for the ways Mark and that program helped me get my life back. 

What has daily life been like since your diagnosis?

Daily life has been much more exhausting, but also freeing. I have learned not to stress about things in school and worry about grades and perfection. I take less things for granted and spend a lot of time reflecting on my life.

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

CRPS and chronic pain are composed of both physical pain and emotional pain. The physical pain and misunderstanding lead to being lonely and feeling misunderstood, so it does not help when we are ridiculed or not supported. Chronic pain is constant pain, and constant friendship, love, and support go a long way.

What advice would you give to newly diagnosed Warriors?

Don’t give up. You have an opportunity to fight this disease and let it make you stronger, rather than defeat you! Trust that there is a plan and that there are things out there to help. You are not alone and many CRPS warriors would love to talk to you and encourage you!

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

You are so strong to keep fighting every day and we are in this together!

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

The pain program I did, turmeric pills, prayer and spending time with God, DISTRACTION (talking to friends, adult coloring, music, etc.), listening to music, and exercising even if it is just light exercise.

What else would you like to add? 

You are not alone and instead of asking “why me,” tell your CRPS “try me” because you are stronger than the CRPS monster! I am so proud of you for continuing to fight! Do not be afraid to ask for help as it does not make you weak, rather it makes you strong! CPRS is a great opportunity to learn how much we need each other! 

Feel free to connect with me on Instagram at @shannon_735 and on my chronic illness awareness account is @crps.fighter.shannon

Please consider making a donation to RSDSA today!

Written by Kellie Slater for the RSDSA blog.

How and when did you develop CRPS/RSD?

My original injury happened in August of 2012. Even though I saw providers on a regular basis and continued to have excruciating pain, and some of these providers thought it could be CRPS, I was not formally diagnosed until later. I underwent physical therapy, which only exacerbated my pain. I had ice applied and instruments that applied a high amount of pressure to my nerves and all the while, the therapists could not understand why my pain did not abate. In fact, they were visibly annoyed that I was not getting better. This added insult to injury. I feel like this lack of knowledge and not listening to the patient contributed to the chain of events that lead me to where I am now – in constant pain and the associated other medical issues that come along with CRPS.

What has daily life been like since your diagnosis?  

It is a struggle to try and stay positive. Though I have always been highly independent and active previously, including having a highly demanding, highly physical, long term career as a flight attendant, I now have to rely on the help of others, which is not that easy to find either. Though I have always been social and able to do typical things that friends do together, I now am unable to walk my dogs and participate in typical physical activities that others want to do. When people discover you use a cane to walk, you have memory problems, cannot concentrate, etc., and that you simply cannot do things a person of your age normally does, it creates a barrier.

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

That just because you cannot see my disease and I am not crying in front of you, it does not mean that I am not suffering and in constant pain. There are plenty of times where I do cry out of frustration and pain, but I do it privately. I wish people would realize that I am definitely giving things my best effort, and I wish I could be able to do the things I used to do.

It would be great for people to know how important it is to maintain contact with those who have CRPS, and really any other disease, as a lack of communication can lead to people being isolated.

What advice would you give to newly diagnosed Warriors?

Do a lot of research on your own! It is up to us to provide the research to our providers, because odds are, they do not know anything or not much at all about it. It is important to advocate for yourself. No one else will do it for you. If your provider will not listen or discounts what you say, find another provider. Keep moving towards finding medications or other things that help you. Being able to get a good night’s sleep is paramount. If you cannot sleep, this impacts your life in all sorts of negative ways. This disease affects us all differently, but there are commonalities as well.

I would also advise all, especially women, to take another person with you to all doctor appointments. It is a second set of ears that can document what is said and done during the exams.

I have a substantial temperature difference between my limbs as measured by a thermography device. A limb being much colder than the other may be a big clue that you may have CRPS.

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

Try to find something to distract you from the constant pain and isolation. Reach out to others you know (through responsive and stable CRPS support groups if possible), to keep contact and share information. Do not let anyone try and tell you that your disease is anything other than what it is – a severe and devastating (physically and most likely financially) disease without a cure (at least for now). Also, take photos which will document the differences and changes in your limbs, if you have that type of initial injury.

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

I have my dogs which provide 24/7 love and companionship. Treatment wise, I think I have tried most everything, except Ketamine infusions and stim implants. I do not plan to do anymore invasive surgeries as that seems to result in the spreading of the disease (I already have that) from the individuals I know who have had that done.

Please consider making a donation to RSDSA today!