Category: RSDS General Info

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!

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!