Take Care Of Maya Verdict Commentary with The Cochran Firm Texas’ Bryan Pope, Esq. and RSDSA’s Jim Broatch

Bryan Pope, Esq. spoke to the RSDSA community during our virtual conference on Tuesday, November 7, 2023 to discuss “Lessons We Can Take Away from the Tragic Story of Maya Kowalski from Take Care Of Maya” right as jury deliberations began.

You can watch that discussion on our channel here.

Just 48 hours later, it was announced that Johns Hopkins All Children’s Hospital was found liable for the abuse claims against them by the Kowalski Family.

Watch as Bryan provides commentary on the verdict along with Jim Broatch, RSDSA’s Executive Vice President & Director.

“Take Care of Maya” Netflix Documentary Commentary by CRPS Patient

Written by Melissa Wardlaw for the RSDSA blog.

Even before I watched Take Care of Maya, I knew the subject matter. I had read several articles about it, including “People” magazine, which presented Maya’s case as the cover story in June 2023. I was not, however, prepared for the utter shock and horror of what Maya and her family endured in 2017. The documentary left me heartbroken, angry, sad and frankly at a loss for words as I observed just how broken and uneducated our healthcare system is when dealing with rare and complex chronic invisible illnesses and pain. 

Maya, a mere child (9-yrs old when she was diagnosed with CRPS by a world-renowned CRPS Specialist), was in excruciating pain for which her physician ultimately recommended a ketamine coma – which helped! A year later, Maya’s pain came back in full force and she was taken to Johns Hopkins All Children’s Hospital.

In short, Maya’s mother (Beata) was unjustly accused of suffering from Munchausen Syndrome by Proxy (MSP) by a medical director there. MSP is a mental disorder wherein parents (usually the mother) of a child with rare and complex (mostly invisible) diseases either create fake symptoms or cause real symptoms to make it appear that the child is sick.

Yes, that’s right! Despite a CRPS diagnosis from a reputable physician, Beata was falsely accused of medical child abuse of her own daughter; subsequently the hospital “medically kidnapped” and took custody of Maya. Her mother was not allowed to see her and could only speak to her via phone on limited occasions and under strict supervision. Maya’s father Jack (and her brother) were allowed only short visits at the hospital.

After 87 days of Maya being in state custody and Beata fighting for Maya, Beata sadly took her own life to pave the way for her daughter to get back to her father and brother and get the treatment she desperately needed to treat her CRPS. Five days later Maya was returned to her home, albeit without her beloved mother, yet still with CRPS.

Just like Beata on behalf of Maya, most of us who live with CRPS (and other invisible complex chronic illnesses and pain) have been judged unfairly, scrutinized, told the pain is “all in our heads,” given “the look” or been questioned as to how the pain and symptoms can be that bad when we appear relatively “normal” or are able to do such and such a task?

Well, I’m here to tell you the pain of CRPS IS that bad. According to the McGill pain scale, it is the most severe form of chronic pain there is and also known as the “suicide disease.” Like most parents who have children with rare diseases, Beata was simply fighting and advocating for her young daughter who was suffering in unrelenting pain only to be punished for it. What would you do for your child? What, if anything, should Beata have done differently? WHY did this have to happen?

There are too many distressing clips in the film to discuss, however this is for sure – Beata, a nurse by profession, was a fierce advocate and documented everything as we are taught to do living with a complex, rare and misunderstood (mostly invisible) disease with symptoms and pain that defy logic. Her detailed documentation (including recorded phone calls) and exasperation is shown in the documentary and paints a disturbing picture of the manipulative case workers and “medical professionals” who were out to make things even more difficult for this family and for young Maya, who was fighting for her life and needed her mother.

In the final court hearing before her death, Beata asked if she could hug her daughter – a simple request which was denied. Maya would never get that hug and would never see her mother alive again.

As an adult with CRPS (and multiple other medical issues), my mother has been my rock. Throughout my diagnosis and in fact, all these years later, I would not be here without her unwavering support, unconditional love, selfless caregiving and advocacy. The hospital and Dr. Sally Smith, with her false allegations, took something away from Maya that is irreplaceable – a lifetime of mother’s love and compassion. It angers me to my soul for Maya and her family and every family and patient with a complex disease that has had to go through something similar at the hands of power hungry and uneducated physicians, who, instead of fulfilling their Hippocratic Oath to “do no harm,” they in fact do the opposite.

After Maya was released back to her father and brother, Maya’s diagnosis of CRPS was confirmed by a separate CRPS physician. According to reports, Maya still has CRPS and will always have it as it is incurable, although she is doing much better. We can only hope her family now gets the justice they deserve in a $220M lawsuit filed against the hospital (and other parties) set for trial in September 2023. The family has already settled with the accusing physician for $2.5M.

My deepest sympathies and condolences go out to Maya and the Kowalski family. For more information about Maya’s case, please see the “People” magazine article here. For additional information on CRPS please visit: rsds.org. If you are experiencing suicidal thoughts, please contact the Crisis Text Line by calling 988 or texting “START”(741741).

The Top 10 Shoe Brands for CRPS From a CRPS Perspective

Written by Guest Blogger Ashley Epping

I developed CRPS at 12 years old in my left wrist. After being diagnosed, I spent the
next six years dancing competitively, staying at the Pediatric Cleveland Clinic, creating
art, traveling abroad and applying to colleges. I never once thought about my shoe
choice because I didn’t need to. Though I would always see others in my support
groups posting photos of shoes that worked for them, and to be honest most were not
versatile enough to wear for specific occasions such as professional or dressy settings.
For the first six years my pain was only located in my upper body, but in the following
years the pain spread to the lower regions. For the first time in my life, I was not able to
purchase shoes based on the fact that they were cute. I am a 22 year old business
student, living in New York City. The typical CRPS friendly shoes were not an option for

I spent the next few months observing and researching shoes that could serve all
purposes. I needed shoes that were equipped for walking, standing, exercising, and
were standard for business, social, and/or dressy occasions. All the while serving relief
for CRPS symptoms. I needed shoes that could handle swelling, hyper sensitivity, poor
balance and support painful legs.

I was successful in finding shoes that fit my lifestyle, and I figure that others may have
the same issues I did when looking for shoes. I have put together a list of my findings
for all CRPS sufferers who are in need of some kicks.

The Top 10 Shoe Brands for CRPS Warriors

1. Teva
Teva sells an arrangement of sandals, sneakers and boots, but their most
accommodating shoe for swollen and sensitive feet are their adjustable strap sandals.
The sandals adjust at the ankle and around the ball of the foot to create the perfect fit
everyday no matter the severity of symptoms.

2. Eurosoft
Eurosoft is made up of mostly fashion forward products; shoes that are meant to be
worn for style, while also keeping you comfortable throughout the day. The shoes are
created with padding in the sole and arch supportive. They offer casual open slip ons for
day to day wear, and also offer wedges for a more fancy occasion. Eurosoft is sold by
wholesalers, but the most convenient locations are Amazon, DSW and [sic] JCPenny’s.

3. Sketchers
Sketchers offer boots and sandals, but their sneakers are worn most often for CRPS.
Sketcher’s sneakers offer light weight technology, air-cooled memory foam, and flexible

4. Christian Dietz
This brand is on the [sic] pricy side, but if you are looking to make an investment these
shoes will last you years. Their products range from sneakers to dress wear to
orthopedics; allowing all different accommodations. These shoes are incredibly fit for
people who wear braces. Christian Dietz is sold through the store Enslow, which has
been serving the medical community since 1909.

5. New Balance
New balance is a commercial sneaker brand, but has recently come out with NBRx
Performance Foot Health products. These sneakers are categorized by running, walking
and insole options. New Balance connects doctor’s recommendations to certified retail
partners and trained fit specialists to fit you with the right sneaker.

6. Dankso
Dankso has a wide range of products, but the most supportive and specialized shoe for
CRPS purposes is their clog model. Though these shoes are not highly recommended
for walking long distances, they are one of the top shoe brands for people who need to
stand for long periods of time.

7. Birkenstock
The most CRPS friendly products from Birkenstock’s are the slip on Arizona sandals,
and the slip on Boston clogs. These shoes are made to be adjustable and roomy for
cozy socks, and/or in our case for swollen, sensitive feet. These products tend to be a
little pricy, but they are real leather, which does last for a very long time.

8. Ecco
Ecco offers a variety of products, but the best ones for sensitive feet are their slip on
booties, flats, and casual sneakers. This brand has created a feature using premium
materials plus dynamic comfort. They use “next generation platform technology” which
is inspired by nature and old world leather. In case a fancy occasion arises they also
offer low heel pumps with the same comfort technology.

9. Adidas
Adidas is a commercial brand, but they have come out with their Ultra Boost technology,
which are designed to propel you forward while maintaining your stability. They are
engineered to expand with your foot and avoid irritation, and come with rubber soles
that have extraordinary grip for wet and dry surfaces. These sneakers are the favorable
choice for the gym or physical therapy.

10. Naturalizer
Naturalizer offers incredible options for professional shoes; if you are looking for a shoe
with a small lift, that are sleek, durable for walking and standing, than their a top choice.
Their prices have a wide range, but lower prices can be found through their retailers
such as Nordstrom Rack and DSW.

How CRPS Is A Family Disease

Samantha writes about how CRPS is a family disease. While one person may feel the physical pain, it can impact everyone's lives.By Samantha Anderson

Sometimes, we get so wrapped up in our pain and our diagnosis that we do not realize that CRPS goes beyond us. Our families can be changed because of a CRPS diagnosis. While we have to focus on working on our own pain, it can be important to recognize some of the impacts of CRPS being a family illness.

Last night, I was watching a television show with my mom. In it, the son was struggling with an illness. The therapist speaking to the parents explained that it is a chronic illness, which makes it a family illness. This does not mean that it is genetic, but it means that the family is affected by it. That’s why the mother could not stop crying and the father kept feeling so guilty. They would stay up all night trying to figure out ways to help the son, but in the end, it was out of their control. It wore them down.

I looked at my mom and something clicked in my head. While I have always known that CRPS affects more lives than mine, it was that example and seeing it on TV that truly made me realize what my family and close friends (or the family I have selected) endure day in and day out. While I didn’t have the specific ailment that the child on TV was dealing with, I’ve been ill since I was born. Some days, I still get really mad and frustrated with it all. I absolutely take it out on the people around me without meaning to. On my worst days, when depression is taking over and anger is consuming the other parts of me, I think that people have forgotten that I live with chronic pain syndromes and other chronic illnesses. I feel forgotten and like they are not considering how hard things can sometimes be. On my better days, I can see that it is nearly impossible for them to forget. It occurred to me how CRPS really is a family disease. I sat back, in awe of this realization.

How is my CRPS a family disease?

CRPS is what makes my little cousins nervous that they will be in a wheelchair because they get hurt and people say that they are just like me.

CRPS is the sleepless nights that my mother has had while I’ve screamed and cried myself to sleep with the pain while she tried to do everything she could to help me.

CRPS makes my husband take days off from work, which he gets paid hourly for, so he can help me get around the house when I cannot physically move myself.

CRPS are all of the times that my family hides their pains from me, because mine must be so much worse, so why should they complain?

CRPS is why my nephew must be careful around “Titi” because she hurts and hitting her leg would be bad.

CRPS is the copious amounts of money my mom spent on medications and alternative remedies to try to help minimize my pain.

CRPS is why my husband gets lockjaw while walking through a mall or in public with me, as he watches people get too close to stepping on my foot or hitting my arm, gritting his teeth.

CRPS is the straw that broke the camel’s back for my parent’s marriage, as I became too sick and my mom’s attention was always on me.

CRPS is why my family continues to discuss putting ramps on their houses, even though it was initially thought of for my grandmother.

CRPS is why my husband and I live with my mother instead of a tiny, third floor apartment somewhere.

CRPS is why my best friend carried an emergency bag with pain medication and a variety of other things during my wedding.

CRPS is why everyone holds their breath if I stub my toe or twist my wrist.

Does that all seem minor? Maybe. Do they all necessarily feel the pain associated with CRPS? No. However, they feel every emotion that I do, even if it is for a different reason. When one person receives a diagnosis of CRPS, the entire family becomes effected. Just like any other chronic illness, it changes our lives as individuals and within our families.  I am lucky to have the family that I have, as they are in on this journey with me. It has been one of the most intense roller coasters, but they do not back down. I am not blind to the different things that they have all experienced or have sacrificed to help me. I am forever grateful for them. While I’ll never be able to make up for some of the things, I am lucky enough to fill space with amazing memories and positives. Luckily, I’ve come to the point in my life where I realize these instances are not “my fault,” as some would say. It is simply a side effect of loving me.

For example, CRPS has made my mom and outspoken fighter. She will not back down when she believes something needs to happen. She knew how to handle all of the doctors and medical professionals through my nana’s cancer battle.

CRPS has made my husband more compassionate towards those that live with chronic pain. He fights for the rights of people living in pain and will educate anyone that believes we are all “faking it.”

CRPS has taught my cousins that a wheelchair and cane do not define a person. They know that I am still me when I use these things.

CRPS has taught my family about handicap accessibility and how some places do the bare minimum for ADA purposes, but it can be unrealistic.

CRPS has taught my entire family to embrace the good days and to work with what we can on the better days.

To all of the CRPS warriors out there, do not feel bad or guilty that others feel certain ways. Do not get mad at them for getting emotional or frustrated that you are in pain. Generally, they are frustrated for you, not with you. They feel all of these different ways because they care about you. If anyone treats you as though you are inferior or not worthy of their love, you do not need them. You are strong and you are a fighter. You can do this.

To the families and love ones out there, you can do this. We need you to support us. Talk to us about the ways that you feel. Explain why you are crying or why you are mad. Realize we see this. Sometimes, we cannot help but feel it is our fault and it brings us down. We just need a reminder that you love us and support us. We have to work together to fight back against CRPS.

Embracing Valentine’s Day 2018

Sometimes living with CRPS means that you have to be your own Valentine. How can you make the most out of this Valentine's Day?By Samantha Anderson

Living with CRPS makes holidays stressful. Valentine’s Day is a whole other topic. Sometimes, we are our own Valentine, while other times we may not feel up to going along with our Valentine’s plans. How can we adapt to make the most of this day about love?

Valentine’s Day can be a stressful day for those of us living with CRPS. Some of us get a little down because we cannot do the things we would like to do to celebrate this day of love. Others may get down because their relationships may have changed over the course of their time with CRPS. This year, I am personally sending the self-love Cupid to everyone with CRPS’ house so we can all focus on taking care of ourselves this Valentine’s Day. To love another means that you have to love yourself first. Loving yourself can take a lot of work, especially when you are enduring pain. That does not make it impossible. How can we work towards loving ourselves this Valentine’s Day?

I am going to be completely honest with everyone today. I struggle with severe depression. It has gotten worse over the past year. I became a shell of myself. With the help of a few loved ones and some exercises that I’ve implemented myself, I’ve come out of the dark cave I was living in. I saw that I could not be the best daughter, wife, aunt, cousin, friend, niece, granddaughter, or worker when I secluded myself to the dark cave. One of the things I love most about life is making sure other people know how much I love them. To do that, I had to love myself more than I had been. Sometimes, I return to it, but I’m making sure this self-love Cupid comes my way, too. While these tips are little things I’ve done or intend to do, if you are feeling depressed this Valentine’s Day, please seek medical attention. It is so important. I care about this entire community and I want you to love yourselves as much as I love all of you!

The first thing I want everyone to do is write a list. This list should be a mix of positive words that you associate with yourself, great things you have done, and things that make you who you are. If you need help with this, ask someone you know and love to help you. Or, go back to those lists that we used to do in primary school that require a word for each letter of your name. For example, I could do: S- Smart, A-Affectionate, M- Motivated… and so on and so forth. Fill an entire page of a notebook. It may take a bit, but you will get there.

Next, I want you to find song lyrics, movie/television quotes, and mantras that make you feel good. If you have sticky notes, write them down on sticky notes. If you don’t, write them on small pieces of paper. Once you write at least 10, keep them in a pocket and scatter them as you move to different rooms in your house. Put them in sock drawers, medicine cabinets, in the case of your favorite movie, in the fridge, etc. These will be reminders of happy things that you may find on days you need it the most. You can switch these out every few months. It sounds silly, but it helps.

Take a look in the mirror. I know a lot of us feel like we do not look how we want or how we once did. But look in the mirror. Think of three “I am” statements. This can go back to what you wrote on the paper. If you can, use a power pose as you say it (hands on your helps, arms outstretched, etc.). Say these statements out loud while looking yourself in the eyes. For example, tomorrow, I will say: “I am my own beautiful, I am fierce, I am passionate.” After you say your three statements, then say your name. I would say: “I am Samantha and today is my day.”

If you are going to be your own Valentine today, which I recommend even if you have a significant other, try to do something that you love, but do not get to do often. Do you like to read a book while listening to music? Do that! Do you like to do a craft that requires all of your concentration? Do that! Have you been wanting to binge-watch your favorite show on Netflix? Do that! Maybe do this while enjoying your favorite food or a food you do not have often. Sit back, relax, and enjoy yourself.

If you were going to go out, but your pain is too bad today, do not feel guilty. Tell your significant other what is going on and plan a low-key evening in. Ask for them to light some candles, order food from a local delivery place, put on a rom-com on television (or a horror film if that is your cup of tea). Sit with each other and just talk. Talk about what you love about each other, about the first time you met, about completely hypothetical situations (i.e. if we won the lottery, what are the first five things you would buy and why?), just talk! It is even more special than spending a crazy amount of money on Valentine’s Day specials. Bonus: if you did not get to buy chocolate for Valentine’s Day, it is always on sale the day after. Hello, bargain bin! I’m coming for you!

No matter what you do this Valentine’s Day, just remember that you are amazing. Every day, I get to speak with so many fellow CRPS warriors. As someone that has been living with this since I was a young teen, I get the frustrations and why we all can get down on ourselves. But, we have the amazing power to lift each other up. I’m not opposed to a post-Valentine’s Day CRPS-Valentine Card Swap with the entire community. Mail has always made me smile (except bills). Reach out to a fellow CRPSer this Valentine’s Day and tell them they are loved!

Quotes and Mantras To Help CRPS Warriors

Quotes and mantras for people with CRPS RSD to help work towards positivity Written by Samantha Anderson for the RSDSA blog

Everyone has bad days. They are inevitable. Bad days are what make good days feel amazing. It can feel incredibly difficult to get through some bad days, particularly if pain is high on those days. We all need something to pull us through and remind us that things get better and that we are strong than we believe.

Take a look through some of the quotes that we found helpful for bad days with CRPS. Consider printing out this list or taking your favorite one and writing it out to hang up on your mirror so you see it every morning.


For the moments when things just are not going right: “Keep your face to the sunshine and you cannot see a shadow” -Helen Keller

For the days you have to deal with people that doubt your pain or the days you are completely frustrated with everything: “I truly believe that everything we do and everyone that we meet is put in our path for a purpose. There are no accidents; we’re all teachers- if we’re willing to pay attention to the lessons we learn, trust our positive instincts and not be afraid to take risks or wait for some miracle to come knocking at our door.” -Maria Gibbs

When your CRPS pain is flaring and you are wishing for a cure: “You’ve done it before and you can do it now. See the positive possibilities. Redirect the substantial energy of your frustration and turn it into positive, effective, unstoppable determination.” -Ralph Marston

OR “In times of great stress or adversity, it’s always best to keep busy, to plow your anger and your energy into something positive.” -Lee Iacocca

When you can only find the things wrong with yourself: “Stop saying these negative things about yourself. Look in the mirror and find something about yourself that’s positive and celebrate that!” -Tyra Banks

On the days when something less than favorable happens: “Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have.” -Walter Anderson

When you think about the past: “We must let go of the life we have planned, so as to accept the one that is waiting for us”- Joseph Campbell

When you feel as though you have no control: “I have seen many storms in my life. Most storms have caught me by surprise, so I had to learn very quickly to look further and understand that I am not capable of controlling the weather, to exercise the art of patience and to respect the fury of nature.” -Paulo Coelho.

Daily Mantras:

There are blessings hidden everywhere; I will find them

I am enough, I have enough, and I am doing enough. I accept myself and my life fully right now.

No one is you and that is your power (or no one is me and that is my power)

My breaths will be deep and my heart will be open

I will remember that the only shoes I wear are my own

Do what only you can do

Please consider making a donation to RSDSA today!

Combating a CRPS Winter With Music

A playlist of music to get everyone with CRPS RSD through the winter and usher them into springWritten by Samantha Anderson for the RSDSA blog.

Getting through cold, dark winters can be difficult for anyone. With CRPS, we understand that there can be more complications. As someone with CRPS, I’ve fought through some of the darkness of winter with music. Get on board with me and see what my recommendations are to get you through to Spring!

Winter can be incredibly difficult for people with CRPS. All through the United States, we’ve been facing some crazy weather. There has been snow in places that it doesn’t snow, temperatures lower than Alaska in the Northeast, and overall low temperatures all over the country. This weather can make us feel less than stellar. With snow and ice, it can be hard to get around, especially with lower body CRPS. Shoveling can be impossible for us. The cold overall can make our pain feel worse. So many of us are counting down until Spring, when it isn’t freezing, but also isn’t too hot. We need something to keep us in an upbeat mood to beat those winter blues. I wrote an article like this before and it was well received. Call me DJ Sammie-Ay, because I’m writing up all of the song that I think will help you and CRPS through the winter! Music is proven to boost moods. If your body can’t handle vibrations from playing music on a radio or speaker, try headphones on a low volume. These songs will help lift those spirits and will help Spring get here before you know it! Take that, CRPS!

“Can’t Stop the Feeling” by Justin Timberlake. This song is the feel-good anthem of 2017 and I’m carrying it over to 2018. It’s an upbeat song all about positivity. We’re keeping sunshine in our pockets. This song came from the Trolls movie, which I highly recommend for anyone looking for a happy movie to lift their spirits up (available on Netflix right now). You can’t not smile when you hear this song or see those goofy trolls on your screen.

“Sorry Not Sorry” by Demi Lovato. While this song is about telling off an ex and telling them what they’re missing, it is a fun song. We can be “sorry not sorry” for a lot of things in our life. I’m happily married and sing this at the top of my lungs. I’m “sorry not sorry” for the days I’d rather stay in watching Netflix versus going out into the cold, for the days I have to choose myself over others, and for being who I am. I am a woman with disabilities that refuses to apologize for it. Sing it with me, baby I’m sorry I’M NOT SORRY (listen to the song, you’ll see why that was in all caps).

“The Champion” by Carrie Underwood feat. Ludacris. We work hard every day to get through. We may get knocked down from time to time, but we get back up, fight back hard, and train every day to make our comeback. This is an interesting song from Carrie Underwood and is nothing I’m used to hearing from her. Through this song, she makes me feel unbreakable and unstoppable. When we come out on the other side of winter, we will all be the champions! I also happen to like Ludacris’ breakdown of what each letter in champion stands for. Take a listen. You’ll feel like you can never lose!

“Rewrite the Stars” by Zac Efron and Zendaya. This song is from the new movie The Greatest Showman. This is a slower song with a good beat behind it, which seems like a huge contradiction. It’s really just a beautiful song. It sounds like a bit of a Romeo and Juliet story within a song, trying to rewrite how life is supposed to go. It’s just a great song to get lost in.

“Walking on Sunshine” by Katrina and The Waves. This song makes it nearly impossible to have a frown on your face. It’s so upbeat and catchy. I could be in the worst mood and someone would put this song on and I’d have to laugh and sing along. This is a great song to have in your library. It’s my “In Case Of Emergency” fun.  Also, if you use Spotify, this is a part of the “Have A Great Day!” playlist, which I highly recommend. The songs are all just too good! We’ll all be walking on sunshine once Spring is here, so let’s prepare by singing along.

“Finesse (Remix)” by Bruno Mars feat. Cardi B. Now, I do not like Cardi B. But this song sounds fresh out of the 90s. It sounds like Boyz II Men, Fresh Prince, and TLC combined. It’s a feel-good song. You can’t help but bob your head. If you love 90s music still, this needs to go to the top of your playlist. I can’t find any faults with this song, despite not liking one of the artists. You’ll absolutely smile with this song.

“Smoke Clears” by Andy Grammer. This song is nice because it talks about how there are lows in life, but there are brighter days ahead, also known as when the smoke clears. The amazing things about the CRPS community is that everyone is supportive of one another. We will all always support each other and help each other through the tough times to the better days. So, I’d like to consider this to be an anthem. Instead of Andy Grammer singing it, imagine the entire CRPS community singing it to you. Talk about powerful!

“Love Myself” by Hailee Steinfeld. This newcomer has a great voice. This song is fun and is all about how putting yourself first and loving yourself. It is upbeat. This can help usher you into Spring. Make yourself happy and all will be well. It’s also a great little jab at anyone that isn’t 100% supportive. Take that haters!

“Your Song” by Rita Ora. This song is great. It is the ultimate anti-sad song. While it is a little provocative (warning), Ora sings about how she doesn’t want any sad or angry songs any more, just happy songs and love songs. There is a fun little beat in the background. Bonus fact: This song was written by Ed Sheeran.

“Happy” by Pharrell Williams. This song was from a kids’ movie, but took the world by storm a few years back. This song is all about being happy and getting happy. He sings about how nothing can bring him down, and with this song in your playlist, nothing can bring you down either. Even if you can’t clap along, you’ll get the idea.

“Don’t Stop Believin’” by Journey. This is a classic that can be on any playlist. It’s a great song and a great reminder to keep believing in tomorrow. Days get better, company gets better, and seasons get better. We’re getting closer and closer to spring with each passing minute. You’re even closer to spring now than you were at the beginning of this blog, so keep believing.

That’s enough for today. Add these songs to your playlists on iTunes, YouTube, or Spotify and listen to them until Spring comes. I have a playlist for every mood and every season, so if you like this blog, be sure to give it a thumbs up on Facebook and let us know if you want more! Take that, CRPS!

15 Tips For Healthcare Providers Treating CRPS/RSD

Melissa writes 15 tips to help healthcare professionals treat CRPS the most efficientlyBy Guest Blogger Melissa Wardlaw

As a patient with CRPS/RSD, I am lucky to have a pain-management physician I have been partnered with since 2004 whom I trust, who trusts me and who understands my complex medical issues. As I have visited many physicians and other specialists on my medical journey before and after partnering with him, clearly this hasn’t always been the case! Recently I spoke to an audience of healthcare professionals at a healthcare conference, and left them with this takeaway of some helpful treatment
tips I have comprised in all my years as a CRPS/RSD, chronic illness & pain patient.

1. Patients with CRPS/RSD are on individual journeys and every patient is different! Even though most patients have similar symptoms and the common theme is very severe pain that is greater and lasts longer than the scope of the inciting event/injury, these symptoms can vary in duration, intensity and overall disability. Also, many CRPS patients have comorbid (simultaneous) medical conditions which may bring additional challenges unique to treating each patient.

2. Be a Healthcare Partner! Because CRPS/RSD is so poorly understood with so many differences in opinions amongst practitioners, often times patients know more about CRPS/RSD than their practitioners; but they especially know more about THEIR individual conditions and how CRPS affects them. Listen closely. Educate. Find out patients’ goals. Help come up with strategies together that work specifically for each patient, thus being a partner in solution-oriented healthcare.

3. Treat the whole person instead of the disease! This means gaining insight into hormonal, endocrine, psychosocial, and biochemical processes to ensure the patients’ systems are in balance – this will allow the greatest opportunity for treating CRPS/RSD. If patients are generally healthy in the body and mind, they will be more apt to accept chronic healing.

4. Watch for supplemental symptoms and medical issues CRPS/RSD can cause! With the punishing, continuous and extreme physical stress and severity of pain/symptoms resulting from CRPS/RSD, patients may develop cardiac conditions, situational anxiety/depression, insomnia, PTSD, high blood pressure, diabetes, internal organ issues, IBS and the like. It is important not to ignore these additional symptoms and medical conditions that may arise.

5. The Goal of treating CRPS/RSD is to calm down the patient’s nervous systems, and not bring more stimulation to an already misfiring nervous system in overdrive! CRPS is similar to a PC motherboard being dropped in water and malfunctioning. Calming down the fight or flight response occurring in the patient’s body is necessary. This is accomplished through various methods, treatments, medications and coping strategies. However, beware of overstimulating the body further and treating patients as guinea pigs. Also, as every patient is different, what might work for one patient might not work for another. There is a reason CRPS stands for COMPLEX regional pain syndrome!

6. Primary goals of treatment are really three-fold:
a. To increase function/normalcy (this might be different for each patient)
b. To reduce pain/symptoms and gain better control over them (better management, not necessarily abatement)
c. To improve overall quality of life (not necessarily back to one’s “old life”)

7. CRPS/RSD is an INVISIBLE chronic illness (for the most part)! Most CRPS patients look/sound “normal” depending on other co-morbid medical issues. There can be some visible signs of illness; however symptoms may wax and wane. In the goal of fitting in with society, many patients have learned ways of hiding or masking their visible signs of illness & disability. It is important to ask patients to describe symptoms disabling to them (and why), and have them document and take
pictures of visible and invisible symptoms, and bring this information to their appointments in an effort to maximize time.

8. Help patients find additional specialists and resources to aid in their overall chronic (and general) health.
These may include:
a. Chronic Illness & Pain (and Grief/Loss) Counselors, Hypnotherapists, Psychiatrists, etc.
b. Physical (Water) & Occupational Therapists, Pilates/Yoga, Tai Chi Instructors, etc.
c. Naturopathic Practitioners (i.e., Acupuncturists, Nutritionists, Massage Therapists, Chiropractors, etc.)

d. Interventional Pain Management Physicians, Neurologists, Endocrinologists, Rheumatologists, Hormone Specialists
e. Support Groups (both in-person and online), Churches, Friends/Family, Service Animals, etc.
f. Online Resources & Patient Advocacy Groups (i.e., RSDSA, RSDHope, US Pain Foundation)

9. Be Kind, Empathetic & Compassionate! You may not have all the answers, however what may help patients the most is a healthcare professional who treats them with respect and takes the time to listen, understand, not judge or make them feel their illness/pain is “all in their heads,” because it is not! You would be surprised just how much a little compassion and kindness can help a patient (of any kind), especially one who is having a bad day.

10. Be Honest! If you don’t know what to do to help the patient, tell them this, but be prepared to refer them to someone who can. A patient will respect you much more if you are honest and sincere, but in a respectful manner.

11. Help set realistic goals! Many times patients have the goal of “fixing” or curing CRPS/RSD (which is an incurable illness) and getting back to their old lives. Sometimes they may see this as the only option with treatment. Helping to reset their expectations and mindset goes a long way to the overall management of the disease. While remission is possible, it is rare and flares are common. Working WITH the disease as opposed to AGAINST it will go much further than trying to completely eradicate it. That way if remission does occur, it is a huge bonus!

12. The best options for treatment are multi-faceted! Educate the patient on the many options they have, from the noninvasive to invasive and everything in between. There may be some residual (justified) fear about procedures and the like, so take cues and respect patients’ comfort levels, while encouraging them to work through them at the same time.

13. Opiates are ok! While opiate medications should not be the first choice for CRPS/RSD (or any illness), many CRPS patients are successfully treated long-term with opiates, especially if co-morbid chronic illness & pain conditions exist. Most CRPS patients present with very severe, continuous and disabling pain; and while CRPS has no specific medications of its own on the market, opiates are made specifically to treat pain. The key is to educate the patient/caregiver(s) on the pros/cons of opiate therapy, and screen/monitor for risk factors. Most statistics put legitimate patients becoming “addicted” to opiates around 1-3%; this is extremely low, so don’t be intimidated or scared to use them as part of an overall multi-modal pain management strategy. First and foremost, your duty as a healthcare professional is to help the patient and “do no harm.”

14. Most CRPS/RSD patients are educated, professional members of society! We are mothers, fathers, sisters, brothers, sons and daughters. CRPS/RSD is a devastating chronic illness, often changing patients’ lives in a split second and robbing us of our careers, activities, family lives, educational pursuits, relationships and life purposes up to that point. It isn’t called the “suicide disease” for no reason. The pain does get that bad. It is important to understand that many patients are going through the most difficult time of their lives, as are their families and loved ones. The loss and grief is palpable. Helping them to focus on the good they do still have in their lives is critical to survival. Professional assistance is very helpful, not only for patients, but also for spouses/caregivers and loved ones because their lives have changed dramatically also.

15. Encourage patients to continue on with normal activities as much as possible! With the all-consuming nature of CRPS/RSD, it has a tendency to take away patients’ abilities to do things they used to do. However, the more they can participate in tasks they enjoy and love, the more it will help with overall healing and finding a purpose again. Finding activities that distract the pain and allow for natural endorphins to kick in, the better patients will feel, at least temporarily, and thus will slowly gain strength and control over the long term effects of CRPS/RSD. It will be a multiplier of confidence and positivity that will show patients they are not defined by their disease(s) and are still valued members of society!

NOTE: Opinions expressed are solely my own and do not represent the views or opinions of other CRPS/RSD patients or practitioners.

Melissa Wardlaw was diagnosed with CRPS/RSD (now full-body involvement) as a result of a spinal cord injury suffered in 2002 during routine epidural steroid injections. She also has fibromyalgia, lumbar/cervical degenerative disk disease, migraines and additional chronic medical issues. Formerly a high-powered Business Executive & Consultant in start-up operations and HR, Melissa has an MBA in entrepreneurship, is a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and offering peer support/counseling & advocacy (pro bono) as her health will allow. She also runs both in-person and online support/empowerment groups for CRPS/RSD, chronic illnesses & pain in Metro Atlanta. Melissa is also an avid volunteer and supports multiple organizations committed to rescuing animals and helping others with chronic illnesses & pain. She has two Ragdoll cats, who graciously “allow” her to live in their brand new home in Atlanta, GA.

Contact Information:
Melissa Wardlaw, Atlanta, GA
Email: [email protected]

CRPS Awareness Day 27: CRPS, Function, and Rehabilitation

Michael Sullivan discusses CRPS Function and rehabilitation and the importance of functional restoration in chronic pain. Sullivan has a Masters from Duke UniversityWritten by Michael Sullivan PT, MSPT for the RSDSA blog.

How important is movement to our health and wellbeing? A dark lesson starting in medieval times and running into the mid-1800s is provided by the numerous inquisitions, the most famous being the Spanish Inquisition.  For over 700 years torture was used to induce people to confess to their heresies, recant their heathen ways and profess their faith in God. Torture was used to speed up the process. One of the most effective means of torture was the use of constraints to restrict a person’s ability to move. Stocks, barrels, metal cages, ropes and chains were used to prevent movement. The tighter a person is bound, the less they can move, the greater the pain. Complete restriction of movement can lead to excruciating and unrelenting pain within twenty-four hours. People were known to go mad in a matter of days. My apologies if the thought of this alone is enough to make you cringe or feel discomfort (you can thank the mirror neurons in your brain) but this illustrates the importance of movement and highlights that pain is a consequence of immobilization.

One of the many issues that people with Complex Regional Pain Syndrome struggle with is that movement is painful, to the point where they don’t feel they have the choice to be active. Essentially, pain itself becomes the constraint that restricts movement resulting in more pain. As a result of this vicious cycle, CRPS sufferers can get into a downward spiral of functional decline that not only exacerbates their pain but seriously diminishes their quality of life. Fear of movement as a result of pain leads to avoidance of movement. My goal in writing today is to convince you that movement, while it may be painful, is good, and to share some strategies for restoring function. First, let’s look a little more closely at the pros and cons of not moving.

One of our responses to pain is to avoid movement to protect the injured area from further harm. In the early stages of injury this type of guarding is an adaptive response that helps us to heal. Depending on the injury, your doctor may even use immobilization to set up the conditions under which the damaged tissues heal. The simplest example would be casting a broken bone. In deciding how long to immobilize an injury there is always a trade off between the time that is needed for the tissue to heal and the deleterious effects of immobilization. Not only can immobilization be painful in of itself, it also is not healthy for many of our tissues. Muscles need to move and work to remain strong and flexible. Moving joints distributes synovial fluid that helps to lubricate and provide nutrition to joint surfaces. Nerves elongate and glide relative to the surrounding tissues when we move. Movement and interaction with our environment activates nerve endings, sending a constant stream of information to our brains for processing that are essential to brain health. Part of the healing process is the laying down of scar tissue as a means of repairing damage. Unfortunately, scar tissue is not very smart and while it strengthens the damaged tissue, it also can form cross-links to tissues that need to move in relationship to each other. The longer these cross-links remain in place the stronger they get and the more they can restrict normal movement. Importantly, movement is also necessary for the final phase of healing, a remodeling process that allows injured tissues to reorganize and gain maximum strength. When we continue to guard against movement after the initial healing process is complete, we are doing more harm than good, and the protective response becomes mal-adaptive. It is no longer helping us to heal. In short, our muscles, fascia, joints, nerves and brain all need movement to remain healthy and any immobilization, even of an isolated body part, beyond the minimum required for healing is not good for us. The consequences are most extreme when people take to bed rest to cope with their pain. We then add cardiovascular deconditioning, arterial constriction, blood clots and the possibility of pressure sores to the list of adverse consequences. Studies demonstrate that there is no known medical condition that is helped by prolonged bed rest.

When faced with the dilemma that it ‘hurts’ to move and accepting the fact that it is bad for your health and exacerbates pain to not move, I am hoping you will choose the latter. I recognize that this is no small task. So how should you proceed?

Arm yourself with knowledge; pain neuroscience education is key. Know that pain is not synonymous with tissue damage. In a normal functioning nervous system, pain is an early warning system of potential tissue damage. With CRPS both the peripheral and central nervous system function can become sensitized resulting in pain with non-painful stimuli (allodynia), exaggerated pain with a painful stimulus (hyperpathia) or pain in the absence of any stimulus, i.e. spontaneous pain. To use a smoke alarm analogy, this is the equivalent of every smoke alarm in your house going off when you blow out a single birthday candle in addition to your smoke alarms going off randomly all day and night. With the smoke alarm, eventually you would come to the conclusion that the system is malfunctioning, and if you are anything like me, you would start cleaning them off the ceiling with a broom stick. The smoke alarm is no longer providing you with useful information. The same could be said of the sensitized nervous system. Common sense tells you that touching your hand lightly should not result in a burning sensation, but it does and patterns of activation in the centers of the brain that process this information look about the same as if you were touching a hot burner on your stove. There is nothing imagined about this, it is real. The good news is that you can change this experience.

Learn ways to modulate your pain. While knowing how pain is processed is not an absolute requirement to learn pain modulation, most people just don’t take our word for it when we tell them they can make their pain better or worse. The receptors in our body that collect information about actual or potential tissue damage are called nociceptors and the process whereby information about unpleasant stimuli is transmitted to the brain for processing is called nociception. Your brain takes this information, puts it into context of your past experiences, psychosocial factors, your personal beliefs, your cultural identity, your current health and demographics and your spiritual beliefs among other factors and does a threat assessment. Your brain will produce pain in proportion to the perceived threat not necessarily in proportion to the actual threat. If your conclusion is that what you are experiencing is not very dangerous then you will experience less (or no) pain. Thoughts and expectations do matter. If you have catastrophic thoughts and expect that you will never get better your pain will be worse. Your brain will ratchet up the threat assessments unless these thoughts are addressed. A psychologist with experience in chronic pain management is most helpful in addressing these issues.

Nociception need not be present to experience pain. Emotional and cognitive stressors can both produce pain responses in areas of the brain identical to those produced by the nociceptive process. Learning techniques to manage these stressors can down regulate pain. Meditation and relaxation exercises quiet activity in areas of the brain that process pain. Conversely, you can have nociception but not experience pain. There is an abundance of functional magnetic resonance imaging studies that allows observation of brain activity in real time that support these assertions.

It’s time for Graded Motor Imagery. The ground breaking work being done by Butler and Moseley with the Neuro Orthopaedic Institute (NOI) addresses the neuroplastic changes that occur in the brain as a result of the central nervous system being bombarded by nociceptive information. Brain health is promoted through a series of three activities: laterality tasks, imagining/thinking about movement and mirror box therapy. These activities can help to reduce pain and increase motor control for better quality movement. NOI has many good online resources that can help get you started. We generally recommend five minutes of GMI 8-10 times per day spread out across your waking hours. If you are going to be working with a physical therapist, make sure the person you are working with has experience with these techniques. Pairing these with desensitization exercises can help with allodynia.

Address the building blocks of function. Once you have developed some skills to better manage your pain, you are more likely to have success progressing into the active portion of your treatment program. Our goal up to this point in addition to understanding and reducing pain has been to reduce the fear associated with movement by better understanding pain. Given that you will be able to down regulate pain in the event that it increases you will be able to look past those previous experiences of trying to increase your activity level that did not go so well. Gentle exercises to improve joint mobility, improve muscle flexibility and increase cardiovascular endurance are key. Start slow, increase slowly but don’t be deterred by discomfort that you are likely to experience in the moment. As you add more activities to your program, the guiding principal is that if you can do tomorrow what you did today, you are heading in the right direction. If you can’t do tomorrow what you did today then you did too much. Adjust your activity level accordingly. Once you have established a baseline you can start slowly increasing the duration of your cardiovascular activities. Studies demonstrate that cardio above all other forms of exercise helps to regulate health in the nervous system, decrease depression, and reduce stress in addition to promoting cardiovascular health.

In addition to neuropathic pain associated with dysfunction in the nervous system people with CRPS experience a combination of orthopedic consequences associated with the original injury or disuse. Almost universally, one of these consequences is myofascial pain associated with guarding the injured area and adjacent areas. Learning skills to self manage myofascial pain are essential to reducing pain in the periphery. Releases and stretches are essential to managing flare ups.

When you are experiencing some success with the above it is time to move on towards addressing specific deficits identified on your physical therapy evaluation. Exercises for building strength, addressing postural imbalances, improving balance, practicing good body mechanics are a good lead in to functional training.

Putting the Fun back in Functional: Ultimately, everything up to this point is pursued with individual functional goals in mind. What are the most important activities for you to regain quality of life? For some, self care and the ability to live independently is the most important thing. For others it is playing with their children or dancing with their partner. For some, it is getting back to work and regaining financial independence. Getting back into your normal daily routine involves sitting and standing tolerance, safe ambulation, the ability to transfer from standing to floor and back and may involve components of lifting, carrying, pushing and pulling, fine and gross motor skills. These should all be incorporated where appropriate to meeting your functional goals. Engaging in activities that you enjoy unlocks your body’s natural pain relieving ability and is another step towards a more healthy life.

  1. Allen, C; Glasziou, P; Del Mar, C (9 October 1999). “Bed rest: a potentially harmful treatment needing more careful evaluation.”. Lancet354(9186): 1229–33).

CRPS Awareness Day 16: What We Lose When We Undertreat Pain

Kate was a civil rights attorney for the Justice Department when pain consumed her life. Using opioids to function, she moved on to become a federal prosecutor. Based on her experience, she recorded this TED Talk to show how the opioid “crisis” is harming the people in pain that need it and how it harms so many when we undertreat pain.

Thank you to Kate for sharing her story and her opinion on such a large platform. We are honored to share it through our blog.

The full description of this YouTube video states: “Kate Nicholson was working as a civil rights attorney for the Justice Department when a surgical error left her unable to sit or stand, largely bedridden, and in severe pain for almost 20 years. Using opioids as an appropriate pain management tool, she continued to function as a high-level federal prosecutor. In this talk, Kate pivots from her inspiring and excruciating story to examine the under-treatment of pain, showing how our approach to opioid abuse by 2.5 million Americans is hurting 50 million people in severe or persistent pain.

Kate Nicholson served in the Civil Rights Division of the U.S. Department of Justice for more than 20 years, practicing health-related civil rights law and securing powerful victories including in the U.S. Supreme Court. She is currently writing a book about her personal experiences with severe chronic pain. Kate is also an arts writer and enthusiast who helped found the new non-profit, Tilt West, recently named by Westword as the “best think tank for arts and culture” in the area. Kate was a Senior Fellow at Dartmouth College and is a graduate of Harvard Law School.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at ted.com/tedx.

This video is shared with Kate Nicholson’s permission.