(877) 662-7737
Search

Category: Guest Blogger for RSDSA

Judi Riley’s Art of Storytelling with RSD – You Can Do It!

Judi Riley shortly after the crush injury that led to her CRPS RSDInterview Conducted by Samantha Barrett for the RSDSA blog.

Judi Riley is one of our fabulous Facebook community members. When we got word of her books with the incredible images that accompanied them, we knew we had to interview her. Judi, who has had CRPS since May of 2009, is an author, illustrator, graphic designer, artist, and mom who is conquering life with RSD or CRPS. After an introductions, Judi and I exchanged emails for this interview. Say “Aloha” to Judi, everyone!

Samantha Barrett: You write and illustrate children’s books, which is amazing! What inspired you to do that?

Judi Riley: I’ve always been a storyteller and for as long as I can remember, I have doodled pictures to go with my stories. My dad always encouraged me to publish my stories with my art.

SB: Out of all of the books that you have written/illustrated, which is your favorite and why?

JR: It is very tough to pick just one favorite! Every book is like creating and birthing a child, and reminds me of a period in my life. Right now, I am deep in a creative bubble while I work on a series of three books and I am completely in love with them.

SB: If you had unlimited resources, what would you write and illustrate a book about?

JR: What a luxury it would be to dedicate all of my time to just writing and illustrating! 98% of my writing happens away from my desk… through my life experiences, reflection and a quiet space where I dream up the unimaginable. With unlimited resources, I would travel around the world with my 9 year old (who is also a writer and artist, and who hasn’t left Hawaii since he was 2) and we would dream up stories based on our adventure. We would make an excellent writing team!

SB: That is so sweet. Does RSD/CRPS affect your ability to write/illustrate? How have you adapted?

JR: After a bilateral crush injury to both arms in 2009, I lost sensation in my fingers (my hands were like wood) and my arms were perpetually burning up with nerve pain, which I later learned was RSD. My fine motor skills were compromised and I didn’t think I would ever be able to paint again. Like many RSD warriors, I was misdiagnosed for several years, and consequently didn’t get the supports or treatment I needed to break the pain cycle. I didn’t sleep for more than an hour a night and I was in a constant brain fog. It was challenging to think, and thus impossible to write. Writing and art had always been my oasis and the further I fell into a dark abyss of chronic nerve pain, the further I fell away from my art and anything light. It is impossible to imagine RSD pain unless you have lived it. If you have ever needed a root canal, then you have tasted nerve pain, but you can never know RSD nerve pain. Imagine the sore you feel from cold hitting your exposed tooth root, but crank it up even higher. Like 10 times higher. Now imagine it is in your limbs and it never stops. Never. RSD never stops. Never. Not one second. I bring up the root canal analogy because my pre-RSD self used to think that it was the worst pain imaginable. Recently, my post-RSD self went to the dentist for a root canal and fell asleep in the dentist chair during a three hour procedure. It was nothing. A mosquito in my ear. The kind of continuous nerve pain that RSD brings is the kind of pain that breaks you. On the McGill pain scale, RSD pain is rated above childbirth. How can you function with pain that high? You can’t. I nearly gave up many times. In those sleep-deprived, darkest nights of abysmal, searing hot nerve pain, it would hurt to move. It hurt to breathe. During those nights. I would sometimes lie very still on the cool floor with my arms folded across my chest, and in that coffin position. I would imagine leaving my body. One of my favorite things has always been the warmth of the sun, but I remember absolutely hating the sun back then. The rising sun of a new day meant that not only did I have to move my body, but I also needed to carry the weight of it through my life. RSD very nearly took all of me. Did I write? Did I illustrate? Brushing my teeth was a huge accomplishment. But I refused to give up, and I was determined to find a cure. I didn’t listen to the doctors who told me there was nothing more that could be done. Instead, I searched for the right doctor and eventually found one who changed my life. After listening to my symptoms, she sat next to me with a posture that suggested she needed to break the worst news possible. I’ll never forget that day or how she looked at me. Until that moment, I had been free falling for 3 unimaginable years in a dark abyss of infinite pan and then with a dull thud, in that moment she gave me a diagnosis. I touched the bottom. Finally, someone knew what was wrong with me. Not only did she give my disease a name, but she also prepared me for the weight of what the news was going to bring to my life. Finding out that I had an incurable, degenerative disease of my sympathetic nervous system was devastating, but not nearly as devastating as knowing that I had suffered unnecessarily for 3 long years because I was misdiagnosed. A string of doctors had told me over and over that there was nothing more that could be done, when in fact there was lots to be done. This new physician cracked open a world of possibilities and was absolutely determined to bring my pain to a manageable level. RSD is nicknamed the suicide disease. A few months after we met, when I was doing infinitely better, she told me that right before she met me, she lost an RSD patient to suicide. When I first walked into her office, she knew as soon as she saw me that I had RSD and she was going to make sure that this disease wouldn’t take me. I never told her I was suicidal. But she knew. I did not want end my life, but I no longer wanted to be in my body. You cannot carry continuous, immeasurable pain without wanting to leave your body, and she knew that. She reached into the abyss, grabbed on, and wouldn’t let go. She surrounded me with a life force of supports. She taught me that nerves have memory, that we could retrain mine, and that it was going to be the hardest work of my life. She taught me that the sympathetic nervous system by its very nature is designed to override every treatment. Over months and months, she dragged me from the darkness and into the light. Before RSD, I was fearless and had always lived without boundaries. I was a free spirit and knew I could do anything I set my mind to doing. After RSD, I had to relearn the idea of living without boundaries. The physician taught me to dig deep to find ways to adapt to my new life. I researched many, many ways to find new ways of doing things that used to be so easy for me. Many technologies exist today that help me write and illustrate, which brings me to the next question…

SB: Wow! Can you tell us about your new book?

Judi Riley's newest book about MerKINS. She makes the illustrations with a tablet now because of RSD CRPS.JR: My new book is called “The Original MerKINS: A Field Journal.” It is a book that almost didn’t happen. It definitely could not have happened without the healers and doctors who have kept me in the light these last few years. (You’ll find some of them on the attached dedication page). For the last four years, I have been learning how to illustrate using my computer instead of painting. I am very tactile and love mixing and blending colors, and watching my art come to life. Drawing on a black tablet with my wooden hands and staring into a The dedication page in Judi Riley's newest book is for all of the people that have helped her with her RSD CRPS journeycomputer monitor was nothing compared to painting. But, I learned to love it, thanks to an unexpected gift from a friend on Kaua’i. Last year, she gifted me a Great Dane puppy. I lost my Dane a few years ago and didn’t think I could handle training a puppy, but she knew more than I did that I needed him. One of the best tips I ever received (from the doctor who gave me the RSD diagnosis) was to keep in motion. It is too easy to stay in the pain posture (hunched inward, shoulders rolled forward, chin down) which brings on more pain. She encouraged me to walk with purpose with my shoulders back and chin up, and to swing my arms consciously left, right, left. I went from fearlessly windsurfing giant ocean waves in 30 knots of wind to… walking. Exciting, right? Until last year, I avoided the beach because it made me sad and reminded me of my life before RSD. My new puppy got me excited about walking, but walking around town on the hard surfaced sidewalks set my feet on fire. So, I ended up taking him to the beach where I could walk barefoot in the warm, soft sand. We walk and swim about 5 miles a day now. I mention the walking because it was on our daily beach walks that I found inspiration for my new book. Walking is still painful, but the beach has become a safe haven where I can push through the pain, clear my head, and feel the sun, which I am once again madly in love with. My new book is about a “Merologist” who falls into an underwater world called “MerKingdom,” where she meets a series of sea friends (MerKINS) who are animals with mermaid tails, like “MerIggy,” a pig with a mertail, and “MerLar Bear,” a polar bear with a mertail. The book is actually the story of my battle with RSD and all of the characters are based on real people in my life. The first MerKIN who we meet is MerLaLa, a mertailed koala, who is really my friend Lady LaLa, who helped save my life when she gifted me my new puppy. And since I know you will ask, MerCess, a brightly colored horse who draws with her octopus-like tentacled mane, is me. Disappearing into MerKingdom is what has brought me the greatest healing. There have been many times that I wanted to give up. I still have what I call Lost Days, days when the pain is too great to do much of anything. Drawing and typing can flare up my RSD, but sometimes RSD pain comes out of nowhere without any triggers at all. MerKingdom gave me a place to disappear into and took my mind away from the pain. Dreaming up MerKINS gave me something interesting to draw and transformed drawing on a boring black tablet into a magical experience. I chose to format the book in a shabby chic, scrapbook style so the imperfections of my drawings would be hidden and seem intentional. I chose to tell the story in a journal style, so that I could work on any pages at any time, even in an RSD brain fog, because I didn’t need to remember where I left off. It is easily the most challenging book I have ever made, but it is also very easily the best work of my life. I received my advanced printed copy of my new book just last week and as I turned each page, I was absolutely overwhelmed with the magnitude of what I had done. I create the impossible. If I can do this, you can do anything.

Judi Riley says this is a depiction of herself in her books- a mermaid horseSB: That is absolutely incredible. I love that you used it to tell your story. How have you used your talent to cope with CRPS related pain?

JR: My greatest gifts have always been my imagination, my creativity, my humor, and my stubbornness. I draw on all of these gifts to battle RSD. I definitely lean on my ability to think out of  the box to figure out how to do things that RSD makes challenging. I am also hugely curious. I research and I listen to advice, but ultimately, I figure out what works for me. I will try anything, even if it seems crazy. Well, maybe, especially if it seems crazy. Another tip one of my healers taught me to do was smile, even if I am having a Lost Day. The chemicals released into your bloodstream during a fake smile are identical to authentic smiles. I remember hating on life so much, but smiling anyway. The absurdity of it! But, I tried it and it actually worked. Day after day. Stupid arm swinging walking and fake smiling. For me, I needed to draw upon all of my talents to heal my spirit and create enough light to see me through my darkest of days, and return me to the place of knowing I can do anything. We are all limitless.

SB: What would you say to someone who stopped pursuing their interests because of CRPS?

JR: There is a great deal of mourning that needs to be done because the life you had before RSD is gone. It’s a death of sorts. But, that doesn’t mean that you cannot have a full life. RSD is just ONE part of you. It is not the entirety of your Self. You may never have another pain-free day, but the line between manageable pain and unbearable pain is a very, very fine line. Once you have crossed over that manageable pain line and RSD is screaming, the greatest challenge is in knowing that manageable pain is attainable again. It’s important to keep a pain journal because you will need to be reminded of your gifts and all of the things that you can do when your pain is turned down. Every single day, even on Lost Days, you must find one thing that you are really good at so that other parts of you can shine. You must also create wins because RSD brings many, many losses. Whether the win is real or an illusion, you must find a win that gives you happy chemicals to keep fighting. For me, I am freakishly good at Scrabble and so I play online on my phone. Winning is a mindset. Small victories lead to big victories.  Winning at Scrabble leads to getting a book done. No matter how challenging, you also need to find a way to reclaim your hobbies. I can no longer draw with a pen, but I can draw with a tablet. Sometimes, I draw the same line over and over again because the picture in my head and the one that is coming out of my hand are entirely disconnected. But, if I keep at it, I will come close. And some days, that needs to be good enough because it beats not drawing at all. Believing that you can do it is more than half of the battle. I believe that one day I will be able to windsurf again. It’s a crazy belief, but it gives me hope, and hope keeps me in the light.

SB: What advice would you give to someone that wanted to write and/or illustrate children’s books?

JR: What are you waiting for? Just do it. It is really just that simple. Don’t research the thousand and one ways to make a book. Write your book and when it is done, it will take on a life of its own. Your Creative self cannot be bogged down by worries like how do you print a book, and how do you market a book. Since I publish my own books, many people contact me and ask me how to print a book. I’ve learned to ask them one question: have you written your book? In most cases, they have not. Instead of writing their book, they’re trying to figure out how to get an ISBN# for a book that doesn’t even exist. Just do it. It’s truly that simple. Many people have ideas for kids books. An idea is nothing. I have new ideas for kids books all day long0 when I brush my teeth in the morning, when I am climbing into my truck, when I am washing my dishes. It is very easy to come up with ideas for kids books. Finish a book takes blood. It takes all of you. Don’t tell someone who has written a book that you have an idea for a book. Write. Your. Book.

SB: Where can we find your books?

My new book is getting printed right now! It is setting sail from Hong Kong on November 17 and will arrive in Hawaii in December. You will eventually be able to find it at books stores, but for now you can order a first edition, signed, hardcover through my IloveMerKINS.com website. You can also download my ebooks on iTunes and at Amazon, just search for “Judi Riley.” My best selling book is called, “When I Am Quiet on Maui.” Thank you for giving me feathers for my artist wings, which brings me to AerKINS (book two in my new series) another scrapbook styled journal about the power of dreams and features animals with wings, like AerOth, a winged sloth, and AerGer, a winged tiger.

SB: That sounds so cute. Thank you for interviewing with us. Any last words for the RSDSA community?

JR: First, do not listen to the doctors who say there is nothing left to be done. Find a different doctor. Second, be flexible. What works today may stop working without reason. Right now, my treatment plan includes regular stellate ganglion blocks, a cocktail of medications, exercise, pilates, and lots of love. Third, smile every day, even if it is fake. Claw onto your sense of humor and never let it go because you will need it on your darkest days. Fourth, cry. Sometimes, you need to release all of that you are carrying. It doesn’t make you weak. Finally, know that you are limitless. And your very best days are still ahead of you.

Judi Riley in the place that makes her the happiest despite CRPS RSD- the beach

 

Thank you, Judi, for taking the time to be interviewed. Judi just announced all of her books are $0.99 for the month of November in the  iTunes store, so be sure to pick them up while you can!

A Teen In Pain Making a Difference – Keegan’s CRPS Story

Keegan is a teenager with CRPS that wants to raise awareness and help make a difference By Guest Blogger Keegan. Introduction by Samantha Barrett

It’s CRPS Awareness Month. RSDSA has several events happening all over the country this month. We will also be sharing some stories of hope and stories to raise awareness for CRPS/RSD. We were recently introduced to Keegan, a teenager who was recently diagnosed with CRPS. She’s not just any teenager; she instantly wanted to raise awareness for CRPS/RSD. Read a little bit about her and about her event! She wrote this blog to kick off our awareness month!

Hi all! Happy National CRPS and RSD awareness month! My name is Keegan I’m 15 years old, here’s a bit of my story. I left my hometown of Poughkeepsie New York in August to take on a new challenge. I moved to North Carolina so I could get residency to go to UNC Chapel Hill when I started college. I was incredibly proud of myself for moving halfway down the coast in with some family I had in Raleigh to eventually further my education. It was hard leaving family and friends, but I did it, and couldn’t be happier. I started to make new friends, get used to the southern hospitality, and meet new people. Just six weeks after my brave move, I fell ill, quickly.

First, it was pain around my lower joints, and I just brushed it off and carried on. It wasn’t something to brush off.  It progressed quickly to the point where I could not walk. I was petrified. Everything I had just worked towards was demolished and I had to move back home to New York. I was completely unable to care for myself. I couldn’t get up out of bed, and part of me didn’t even want to. I felt miserable and stuck inside my own body. I had tons of blood drawn and tested for just about everything. Blood work came back healthy, and they had pretty much no answer for my agony. I finally went to a Rheumatologist and she immediately knew why I couldn’t even bare the touch a sheet on my hips- it was Complex Regional Pain Syndrome (CRPS).

I had so many questions, the first one being why me? I didn’t understand that there wasn’t an actual injury, it was my nerves saying that there was. Who knew that could even happen?! I spent a lot of time pondering that, but that wasn’t fixing it. So, I needed to. I started physical therapy three times a week and it is painful! I have great therapists working with me [who] push me to improve, which I have in the short weeks I’ve been doing it.

As of right now, I can walk with my walker, but it’s certainly a challenge. No sophomore in high school wants to push around a walker period, let alone the thought of being surrounded by your peers with one. That’s when I feel it the most. The embarrassment of being in a school of 3,000 where everyone can blend in, yet the “girl with the walker” is VERY identifiable. I was having trouble staying positive, so I decided to advocate.

I created a fundraiser in my hometown called “Walk The Hudson For CRPS“. It will be held on November 19, 2016 at 1PM on the Poughkeepsie side of the Walkway Over the Hudson. This being as rare as it is, I wanted to raise money and awareness for it. The cost is 10 dollars a person to walk and all proceeds will be going to the RSDSA for CRPS and RSD research. I’m overjoyed to do this and if one more person knows about this, it will be worth it. I plan to be a lifelong advocate, no matter how long my battle with this lasts.

I’m still in the very early stages of recovery, but my single piece of advice to those recently diagnosed is it’s okay to be afraid. It’s okay to wonder why of all people this happened to you. Just don’t stay there forever. As cliché as it sounds, there is light at the end of the tunnel. As excruciating the pain is, PUSH THROUGH. If I can do it, you can too. Appreciate the “get well soon’s” and “hang in there’s”, people do mean well. I’ve humored myself enough to tape Mercedes Benz emblems to the side of my walker, because that comic relief gives me my sanity when I feel like I can’t do this any longer. Laugh, cry, do whatever it is you need to. But whatever you do, never give up. I hope my story inspired you to share yours, as a community we’d love to hear it.

—

Keegan would like to challenge you to make your assistive devices your own. Share pictures of how you’ve customized your equipment. Share your pictures with us during this CRPS Awareness Month through any of our social media forums! Use #WeAreCRPSstrong in your posts.

Don’t Judge a Book By Its Cover- What CRPS Taught Me

Shannon writes about what CRPS has taught her about why you shouldn't judge a book by its coverBy Guest Blogger Shannon Leidig

Greetings everyone!  Happy Autumn! I so cannot believe we are almost to the end of October, which means the cold and snow of winter is just around the corner. I for one so am not NOT ready for that.  I truly hope everyone is doing well.  I have been meaning to write another blog for quite a while; however, this thing called LIFE just happened to get in the way – as this was not the blog I had planned to write.  That being said – there has been a situation that has happened that has totally rocked my world and that [is why] I feel I need to write this one titled: “Don’t Judge a Book by Its Cover”

I think we have all had these types of conversations with people:

Friend: How are you feeling?

Me: Oh I am fine, no worries.

Friend: Are you sure as you have missed work for a few days and I have been concerned – so what’s up with that?

Me: Oh, you know, just the usual severe RSD flare and the pain raging out of control.

Friend: Really, is that so?  You look fine.  Your legs look like they are back to normal so you could not have been down that long.  I mean you really look great, make up is on, hair styled, and you are dressed like always.

Me: Well, nice chatting with you. Catch me later.

I walk away shaking my head.  What did my friend/coworker expect me to look like?  Did she want me to come to work in my pajamas?  You know, it is such a struggle each and every day, each and every single minute the clock ticks.  Meanwhile, my legs are as FAT as can be; I struggle to get my jeans off.  My feet are so swollen and discolored, almost black. My shoes are killing me, yet I cannot sit at work with them off.   I pray for strength to get through it just to come home and battle it in silence.  We have all had conversations like this – and walk away wondering why.

I have had RSD for almost 27 years – diagnosed at the age of 19.  I remember that very day in April 1990 – my doctors told me I would not graduate from college, nor would I work and if I was thinking of getting married – think again.  HA! Last laugh on them, as I managed to do all of the above (even though I am divorced, which is [a story for] another blog) – and then some.  I recall telling my family and friends what I had and they looked at me as though I had four heads: “Really? What the heck is that?”  “We’ve never heard of it.” “Are you sure she really has it, or is it all in her head?”  OH MY GOSH.  Doctors even wondered whether or not I truly had RSD – as my case was not “typical.”  Is there really a typical case of RSD?  I remember telling people: “Please do not touch this limb” or “[Please do not] slam that door the vibration hurts.” [I was told to] suck it up.  The years would pass and I just finally pulled myself into my turtle shell. I felt so much safer on my own [versus] sharing. My family was doubting me, my friends were thinking I was a whackadoodle, yet I knew what was raging in my body.  It was this intense volcano blowing up in my body that I struggle with each and every moment – we all do.  Honestly, it took much more energy to deal with the people than it did with the pain. Then the endless doctor appointments and treatments literally suck the life out of you.

Fast forward to the year 1999 – the year prior to my marriage. At that time, my ex lived in Hawaii. Prior to leaving, I went to the doctors and asked them what I needed to do in order to decrease a severe increase in the pain. Their response was: “Nothing, just take your meds.”  Well, if anyone has ever flown to Hawaii, you know just how long that flight is.  While there, my ex and I hiked, saw the beautiful waterfalls, and everything [else] a “tourist” would do.  Flying home, I flew from Honolulu to Newark, NJ. That flight was horrific. I then flew from Newark to BWI-  coming off the plane it was butt stinking cold.  I noticed my legs looked much different and more swollen than normal. As Thursday turned into Friday, the swelling increased. My legs were much colder than normal and they were BLACK – that was the kicker.  The next day, I went to see my doctors and at that point it was either major nerve blocks along with a catheter or amputate my legs. WHAT THE HEY?!  The docs asked me if I did anything new or different and of course I told them.  I recall my nurse standing there (we later became friends and colleagues in the fight for pain awareness). She said: “Let me get this straight, you were hiking, doing this, that, and the other while you were in Hawaii in PAIN?  You walk into the office looking nice and tan and you say your pain is a 10?”  UM DUH. Y’all are talking about amputation. Am I supposed to look like I just crawled out of bed?  Do NOT judge me!  If I say I am in pain, I am in PAIN.  I hurt to the point I cannot stand it and yet you are questioning me?  How and why?  She later told me that I taught her a very good lesson through the years; never EVER judge a book by its cover – read the entire story!

One thing that whole experience told me is to say, yes I am, first and foremost, Shannon, who happens to have RSD/CRPS.  It is a beast and I am in severe pain 24/7, to the point it drives me to tears, but I suck it up so I can have a life.  Even to this day, family, friends, and coworkers who know I have RSD question if I really do hurt as bad as I say I do. Again, YES. Sometimes, I put that mask on really good while others [are unable to do so] but DO NOT JUDGE A BOOK BY ITS COVER! There are two sides to everyone’s story.  I am Shannon: daughter, sister, friend, employee, and coworker, and (oh by the way) a pain patient, too. I work full time, though there are days which I struggle even more than usual, but thankfully most of my coworkers know something is wrong when they can see how swollen and discolored my feet are. They can read it on my face, too.  Most of my friends can tell, though I will be honest, some do not want to hear it and that is fine. Those friends are not in my tight knit circle of support.  My family understands and they can read me like a book. My words get garbled though, as I do not want them to know how bad feel.

The next part of my chapter happens to be my doctors.  I am truly blessed to have the most amazing doctors – they are my supporters and biggest cheerleaders.  They so love to kick me in the butt when I am having a bad day.  Even when events were happening in their own lives, when their worlds were spiraling, they never looked any different. They still treated me, and all of their other patients, with respect and compassion.  I could tell something was bothering them; however, they said: “We got this, we are good.”  Okay…

Then several weeks ago, things hit the newspapers and made headlines, and honestly so many people rushed to judge and jump to conclusions.  I will admit I semi did, as I thought: “What happens if they close down? What do I do then?”  I cannot leave these guys, as they truly have been with me through thick and thin the past six years.  I started to think of their other patients, their employees, and other physicians, their families while sitting at work listening to whispers. “Oh, they are so bad. They need to be shut down.”  People were judging a book without opening it, delving into the many pages of the book.  Was that fair?  No, it was not.  Many other events have transpired to which my heart has been broken in two.  Once again, people are rushing to judge them and that is wrong.  It hurts me to hear this, as I know I have been judged so many times without people wanting to get to know me, know my condition, know what hurts/helps. Y’all know the drill. Dig into the book, learn by listening and watching. Sometimes, a cover of a book can be ugly, but the ending of the last chapter turns out to be beautiful.

As soon as I hear people rushing to judge the events of the past month, I am very quick to defend my doctors.  They have cheered me on when I was down and out, when I felt like I couldn’t fight any more. They would look at me and be like: “Really? You just want to say ‘done’ when you have done all this? Okay fine be a quitter.”  OH that gets me, let me breathe and turn the page. A new chapter begins.  Please do not judge, as we do not know what is happening in others’ lives.  Take time to read, watch their faces.  You can tell when someone hurts and is in severe pain. Listen when they talk, as that is a story in and of itself.  Please do not rush to judgment.

I, along with so many others, struggle to deal with the events that have occurred.  I just ask that when you see someone who is down and out, ask them what can I do to help.  Do they need anything?  Please do not pass judgment. “Oh they are sitting all alone, they just want to be by themselves,” well maybe they do, but is there harm in asking?  No. Do not close up the book without turning the page to the next chapter.  Sometimes, some of the ugliest chapters which we think will never, EVER end lead you to a beautiful start to something even bigger and better. Hang onto it and do not keep silent.  Share your story when someone asks if you’re okay.  Say: “Nope I am in a lot of pain.” If they ask, tell them what you have.  If we stay quiet, how else can we share our story and get the word out about RSD?  Do not judge as we have no idea what another person is reading. Out of the storms and chaos of thunder, lightning, hail, and downpours, the sun comes out and there is the most fantastic rainbow shining – and there begins our next chapter.

There is a song from Hamilton called, “It’s Quiet Uptown” for which I will paraphrase:

“There are moments that the words don’t reach
There is suffering too terrible to name
You hold your child as tight as you can
And push away the unimaginable
The moments when you’re in so deep
It feels easier to just swim down

The Hamilton’s move uptown
And learn to live with the unimaginable

There are moments that the words don’t reach
There is a grace too powerful to name
We push away what we can never understand
We push away the unimaginable

Forgiveness. Can you imagine?
Forgiveness. Can you imagine?
If you see him in the street, walking by her
Side, talking by her side, have pity
They are going through the unimaginable”

Again, sometimes a cover is so stinking ugly and many chapters are dark and disgusting, like when we are diagnosed with RSD, have a bad experience with treatment, or are trying to explain when someone does not understand what we have and what we experience.  Don’t rush through that chapter; finish it to its completion.  When there are storms in the story of our lives, wait for a moment, and turn the page. There will be the rainbow that is the most brilliant of any we have ever seen. We will all be thankful that we did not judge a book by its cover.

The Myth of a Cure for CRPS

Dr. Katinka van der Merwe writes about the myth of a cure for CRPS and the observations she has made of people seeking a cure.WHAT DOES REMISSION LOOK LIKE?

Written by Dr. Katinka van der Merwe for the RSDSA blog.

Through the years of working with CRPS patients, I have often encountered what I refer to as “the myth of remission.” What does this mean, and why do I refer to it as a “myth?”

When patients who suffer from CRPS dream of remission, they picture themselves back in the life that they used to have before CRPS. They picture themselves “cured,” and as having no pain ever. The truth is more complicated. You have to remember that CRPS is not like lightning that strikes unlucky, healthy people. CRPS affects those who, for whatever reason, have unhealthy nervous systems, and/or unlucky genetics. I call this “The perfect storm.” While it is possible to compensate for your genetics, this does mean that you will have to live more carefully than most. However, it does not mean that you have to wrap yourself in figurative bubble wrap, living in fear of every bump and fall. I have had many patients, after completing their treatment, suffer injuries or undergo surgeries, with no ill effects.

CRPS attacks weak spots in the nervous system if it is unable to self-limit the inflammatory cycle. A body that is functioning correctly can switch off inflammation when it is no longer needed. A healthy body can move out of a “fight or flight” response when it is no longer appropriate. During the “fight or flight” response, a chemical released by the adrenal glands called norepinephrine causes the body to temporarily “borrow” blood supply from, among other, the skin, the GI tract, and small nerves. When the perceived threat or stress has passed, healthy bodies can reverse this. However, the bodies of patients who suffer from CRPS have difficulty to reverse this process.

Difficult does not mean impossible, however. In my experience, the bodies of CRPS patients can be supported and guided to once again obtain balance between the two autonomic states called the parasympathetic (“rest and digest”) and sympathetic (“fight or flight”) states. In order to do this, the Central Nervous System must be supported to heal, as discussed in my earlier blog. However, this blog is not about my treatment, or any successful treatment, but rather, on what comes after. What can a patient expect after beating the monster that is CRPS?

The “myth of remission” generally consists of the belief that once “cured,” patients will have no pain, ever. This may cause some alarm in you when reading this. Does this mean that you shouldn’t expect the pain to disappear? That you can’t dream of a normal life? That is not at all what I mean. Rather than thinking in absolutes, or black and white, you must envision life after CRPS as consisting of more of a gray scale. I prefer to see CRPS as “managed” rather than cured. The patient must understand that, while their pain levels may be drastically decreased and even gone altogether, they still inhabit a body in which the perfect storm once came together to ultimately result in CRPS. You are the captain of this body, the steward. You make decisions going forward that will help to support a body that was once so stressed, that it allowed CRPS to develop. Not all patients will become a 100% pain-free. However, the pain should be much more manageable, without the use of daily narcotics. Remission essentially is a process by which you regain trust in your own body’s ability to heal from within. Ideally, it involves a basic understanding of why/how you got sick in the first place, so that you feel more in control of your future health, rather than a sitting duck.

There is a big difference between living diligently and living in fear. Living in fear means that anything can “get” you, at any time, like a predator stalking you in the bushes. You are constantly aware that it is always close by, ready to pounce. It means you are a victim with no control. Living diligently means that you are respectful of your health, as you have seen the damage that ill health can wreck on your life, your psyche, and your loved ones. It means that you make daily choices that are most likely to result in health. It means that you are in control. Special care must be taken during times of great stress, such as the death of a loved one, illnesses, or injuries. Think of your body as a building with a roof that has been repaired. During a monsoon, you need to be extra diligent, or your roof may leak and ultimately collapse. Do not ignore any “leaks” of energy.

I think it’s also necessary to talk about the actual process of healing.  In my experience, when patients fantasize about what healing will look like, it generally resembles a smooth road without many obstacles in which everyone lives happily ever after. In these fantasies of Nirvana, there are no drawbacks, healing happens fast (hence the word “cure”), and something brings about this healing from the outside in (a magical procedure, surgery, or drug). The reality is much different. For this reason, I thought it would be valuable to share the characteristics of healing that I have observed over time.

1. Healing is hard, hard work.

While healing can be extremely rewarding, exciting, and fun, it also involves incredibly hard work. Besides the initial work when researching treatments, as well as the practical problems you will have to sort out (financing, lodging, etc.), the actual process of healing can be very challenging. Essentially, you are signing up for a roller coaster ride of ups and downs, as well as rapid changes that all will require that you have to adapt. Your medications will have to be adjusted by a professional and you may go through withdrawals and detoxification reactions. In addition, you will have to learn what your new boundaries are. While you may soon feel like a butterfly emerging out of a cocoon, ready to spread your wings, your nervous system more resembles a newborn fawn, vulnerable and shaky at first as it acclimates. For this reason, I caution patients during the early stages to do only 25% of what they feel capable of doing. It also helps to enter the process of healing with the mindset that you are a willing, active participant, ready to bring whatever it takes to the table.

2. The body heals on a priority basis.

The body has a finite amount of energy available to it at all times. As the law of energy conservation states, energy cannot be created nor be destroyed, it can only be transferred. Why this is so important? Let’s pretend this energy is equivalent to a $100 bill. Each function and metabolic process in your body requires a predetermined amount of energy. For example, the simple act of walking may require $5. However, if you have an injury to your right foot, such as a twisted ankle, walking may now require $15 instead of $5. The additional $10 cannot be simply created, it has to be transferred from other areas. This may leave every other body part and function now lacking the energy to be performed optimally. The injured part is essentially ‘vampiring’ energy away from other parts of the body. The brain will not allow this “energy leak” to go on fruitlessly for too long. If an injury does not heal, after a while, the brain will start to ignore it.

Using the same reasoning, the nervous system will always focus most of its energy on the injury that threatens your survival the most. While CRPS may be your most painful injury, it may not be your most life threatening injury. If you have heart problems, for example, these problems may be silent but ultimately prove to be more deathly. Your body, in its infinite wisdom, knows where to focus its healing energy. Conversely, as the main sight affected by CRPS begins to heal, you may feel pain somewhere new as your body is cycling through old injuries as it now has the energy freed up which allows it to shift focus. This means that old injuries (such as disc problems) may suddenly hurt more.

In addition, my patients have frequently reported that as the limb/area affected by CRPS gets better, they will now feel the pain of CRPS elsewhere in the body for brief periods of time. This does not mean that the CRPS is spreading. It means that CRPS was already affecting other parts of your body, you were just not aware of it. Pain is used by the nervous system as a fire alarm of sort. It alerts the brain to areas that require healing. You cannot get better unless your nervous system is made aware of every malfunctioning area or body part.

 3. You will lose your “pain callous.”

Healing means ups and downs rather than smooth sailing. Some days you may feel incredibly good, and other days may plunge you back into the bowels of hell. People who suffer from daily chronic intense pain will develop what I refer to as a “pain callous.” This is a protective mechanism used by the brain that prevents a massive daily leak of energy as discussed above. You cannot survive for long if you are hemorrhaging precious energy. For this reason, your brain is forced to start ignoring pain to a large extent. The minute your brain unleashes your inner healing, your body will return to a state where it experiences pain the same way normal people do. For this reason, you will now experience pain differently. This means that when the pain does come back, even though it won’t be worse, you will perceive it as more intense.

Coupled with this phenomenon is the fact that no matter how many times I tell my patients that ups and downs are to be expected, and that the pain won’t disappear for good after one treatment (except for a very lucky few), a part of them will still be crushed by disappointment when they have a bad day. It is one thing to hurt every day and have an uneasy acceptance of this daily pain, but to get excited, and have a glimpse of heavenly normalcy and then to hurt again, is petrifying. The first thought that will pop in your mind is: “Oh no, is the pain back?! Was it too good to be true?” As time goes by and your pain goes down again, and your new low pain levels become more stable, you will learn to trust your body’s ability to rebound.

 4. Change is scary!

When you picture being healthy again, I bet you never expect that feeling better may be petrifying at times. That makes no sense, right? I have observed, however, that healing is, in fact, very scary. It took me a long time to understand this phenomenon. As humans, we are naturally scared of change. Change requires our nervous system to adapt to its new circumstances and it requires our lives to change as well. When you suffer from a chronic condition, you start to view yourself differently. Others start to view you differently, too. You getting better will require those around you to get used to a new you, too.

Your daily responsibilities at home change in some very practical ways. You may no longer help around the house, cook, or do your own laundry. Your relationships change also. In addition, if you have suffered from CRPS for a year or longer, you typically have been forced to change your circumstances in order to adapt. You may no longer be working. You may have given up on hobbies and traveling. You may have lost friendships and other relationships. You and your partner may have changed the way you relate to each other, as you became the dependent one, and your partner the caregiver. Healing may require practical changes in your relationships. If you share children with a partner, they may have gotten used to being a single parent essentially, and making all decisions on their own. They may also be used to being in charge of most of the decision making when it comes to other things, such as finances. While this may be a burden, it may also be hard to give back some of the power they have grown accustomed to. This does not make them controlling, simply human.

Getting better may leave you feeling a little bit like Rip Van Winkle, waking up to a changed world.  You may have to start all over, in a sense. If you have ever observed a butterfly breaking out of its cocoon, you will know that this change has to happen very slowly. Luckily, most people will adapt after a few months and embrace life with a gratitude that can only come from literally having been to hell and back. After you return to normal life, you will always appreciate it in ways normal people will never understand. This will be a gift that you get to keep, one of the few positive things that CRPS will bring to your life.

Dr. Katinka van der Merwe is a chiropractor who practices in Fayetteville, Arkansas. She treats the Central Nervous System, (specifically the Autonomic Nervous System) with the “Three Punch System”, recently revised to the “Four Punch System.” Her work is detailed on this site in an earlier blog. She has treated CRPS patients from all over the world in her clinic, and is the author of “Putting Out the Fire: New Hope for RSD/CRPS Patients,” expected to be released on Amazon in November. Her clinic number is 479-304-8202.

Calmare Scrambler Therapy – When Traditional CRPS Treatments Don’t Work

Dr. Michael Cooney focuses in Calmare Therapy to treat CRPSWritten by Michael J. Cooney, D.C., Clinical Director of Calmare Therapy NJ USA.

My 30-year career has revolved around treating pain. Since I was a kid, I was always trying to “fix” everybody. In high school, I played on the tennis team and was the self-designated team doctor. Decades later, Dr. Kelly and I grew frustrated that we could not lessen the pain of some of our treatment and medication-resistant patients at our clinic located just outside New York City.

So we went in search of a non-invasive pain treatment to help the patients dealing with severe neuropathic pain and we discovered Calmare. We introduced this technology in 2011, and many of our patients were frustrated RSD sufferers who had already tried all the painkillers, Ketamine treatments, spinal cord stimulators, nerve blocks, surgery−you name it. And none of them helped to lessen their pain or other physical symptoms.

In many cases, patients have told us Calmare was their “last hope.” I think one of the reasons we’ve been so successful in helping CRPS patients may be attributed to the fact that as a chiropractor, I have specialized training in the relationship between the joints, bones, muscles and nerves. As a result, I have a clear understand of the optimal placement of the device’s EKG-like leads in conjunction with the original injury or surgical site.

We have achieved many successful patient outcomes in the past five years, many who arrived at our clinic reliant upon wheelchairs.

But let me be clear–unfortunately, this is not a miracle cure. It does not work for every patient. And over time, the pain condition can return for some patients, so occasional booster treatments may be required.

I’ve listed some of the most common questions we’re asked below, as a way to explain what this treatment is—and is not.

An image of a Calmare treatment machine like the ones Dr. Cooney uses to treat CRPS

How does scrambler therapy actually work?

It uses a biophysical (using physical methods) rather than a biochemical (drugs) approach. The device relieves pain directly at the pain site through small electrodes through which a ‘no-pain’ message is transmitted directly to the nerve for about 35 minutes using 16 distinct algorithms.

During the treatments, the patient’s pain steadily decreases as the brain gets the ‘message’ that there is no more pain at the original pain site. In some cases, pain relief has been reported in as few as one to three treatments, but each patient’s case is unique.

Where can I get this treatment?

There are several providers (about 15-20) throughout the U.S. This is a ‘provider dependent’ therapy and I encourage you to choose a “Calmare Certified Provider,” signifying they have treated a certain number of patients successfully, obtained specialized clinical training in the safe and proper use of the device, and have submitted positive clinical data. I would also ensure they have successfully treated many CRPS patients.

As the doctor, how do you know if the treatment is going to work for a new patient?

In my experience, after the second or third treatment, if there is no significant reduction in pain, it may not be a viable treatment solution. During this early phase, we are looking for a lessening in the level of pain, which tells us we are beginning to disrupt the pain message. With this said, the vast majority of CRPS patients have achieved very substantial relief of pain and physical symptoms for prolonged periods of time.

Does Calmare work for CRPS Type 1, Type 2 and Fully Body RSD?

In our practice, we’ve seen outstanding outcomes in all of these types of CRPS, including patients who presented with substantial physical symptoms such as welts, rashes, swelling and open sores.

Does it need to be repeated on a regular basis for CRPS?

It depends on a few key factors: severity of the condition; how long the patient has been living with RSD; additional medical issues; and if the patient is following our post-treatment protocol. Some patients need to come for booster treatments yearly, a few more often, and some never require further care.

An image of what it looks like when calmare therapy is performed on a hand with CRPS

How many sessions are needed?

Most patients need one treatment for 10 days (Monday-Friday) lasting about 35-minutes each.

How is the Calmare device different from a tens machine?

The scrambler machine has been awarded a patent from the U.S. Patent and Trademark Office which identifies the device as a unique entity, unlike anything else in the market (i.e. a tens unit).

In regard to comparing the MC-5A scrambler machine to a tens unit, the two devices have marked differences:

  • The Calmare MC-5A device creates a low-energy electrical impulse which travels through the patient’s nerves delivering a “no-pain” signal to the brain using 16 distinct algorithms. This process “tricks” the brain that the area of pain is normal and eventually results in prolonged pain relief.
  • TENS units use high energy electrical impulses to block pain signals or distract the brain, but when treatment stops, the pain usually returns. It emits an electronic message over one single algorithm.
  • A tens unit is self-administered by the patient whereas the scrambler is administered by a trained medical professional.

Are there any clinical trials that evaluated this treatment for CRPS specifically?

I am one of the first Calmare providers to treat CRPS sufferers. I have shared my findings and outcomes with key pain management research hospitals and found them to be receptive to our data. In October 2015*, the Mayo Clinic published an article about a CRPS patient’s positive outcome after having the standard 10-treatment scrambler therapy protocol, although the clinical study was formally designated for people who had undergone chemo. [This was done] under the direction of Dr. Charles Loprinzi, with whom I have spoken over the years. We monitor all of the ongoing hospital-based research and clinical trials and post updates on our website.

What are the possible side effects or negative impacts from having scrambler therapy?

I love that question because there are no reported side effects. It is also a painless therapy, but for people with severe sensitivity to touch, the first treatments can elicit some discomfort, obviously, when our leads are initially placed. But this is usually alleviated as the therapy progresses.

I’m currently taking opioids to help me manage pain. How will this affect my Calmare treatments?

Physician-prescribed opioids are not a problem when using scrambler therapy, however, anticonvulsants and antidepressants appear to dull the pain center, which can decrease the overall response to Calmare. I can go into greater detail on this subject with each patient.

Who or what kind of medical condition is not suited for this treatment (contraindications)?

Each patient and medical history is unique, but people with these medical issues are generally not suited to undergo Calmare:

Patients with pacemakers or automatic defibrillators; history of heart attack, aneurysm clip, vena cava clips, or skull plates (however metal implants for orthopedic repairs are allowed); pregnant and/or breastfeeding women; history of epilepsy, brain damage; and use of anticonvulsants, other than for neuropathic pain control.

Under medically-supervised care, neurolytic pain control treatment should be carefully reduced to 0 four weeks before therapy begins.

Does insurance cover treatment?

Worker’s Compensation in the U.S. has been willing to reimburse in several instances. Some of our patients have been successful in winning reimbursement (after treatment) from their medical insurance companies. Keep in mind, most of their claims were originally denied, but when they were appealed, some patients earned some reimbursement.

Is it possible to give us the numbers or percentage of success using Calmare treatment for CRPS/RSD patients?

Speaking specifically to my practice alone and referring to CRPS patient cases, we have seen a success rate of 75 to 80 percent. “Success rate” means that the level of chronic pain and other physical symptoms have been substantially decreased−or eliminated.

How many CRPS/RSD patients have you treated?

Since we started treating CRPS and RSD patients in 2011, we have treated nearly 500 patients from 15 countries.

Dr. Michael Cooney is one of 10 certified providers of Calmare scrambler therapy in the U.S. He specializes in treating patients battling severe neuropathy as a result of CRPS / RSD, fibromyalgia, diabetes, shingles, post-surgical pain and pain after chemotherapy. To learn more, visit www.calmaretherapynj.com or call 201-933-4440.

Take a moment to read the Mayo Clinic article and Mayo Trial Abstract.

Originally Titled: Calmare Scrambler Therapy- When Traditional CRPS Medications & Treatments Don’t Work

A Measured Approach to Pain – Help People with Chronic Pain

Written by Guest Blogger Elisa Friedlander

Written for the Huffington Post initially titled: A Measure Approach to Pain: Tools to Help Patients and Doctors

“There’s one question I’ve been asked more than any other in my adult life. On a recent visit to the emergency room, I heard it once again. My pain was so intense I could hardly tolerate the standard intake procedures: getting my blood pressure taken and explaining why I was there was beyond me. When I told the admitting nurse about my symptoms, she followed up with those overly familiar words.

“What’s your pain level on a scale of 1-10?”

I couldn’t do it. It might have been the feeling of scalding hot knives piercing my body that caused me to rebel against the nurse’s inquiry. Maybe it was the bored look in her eyes, which stayed fixed on the computer screen as she talked to me. Whatever it was, I wasn’t going to play the game, not this time.

“I’m in the ER,” I groaned.

That didn’t satisfy her. She repeated her question as if I didn’t understand the first time. I squirmed in my chair and told her it was off the charts, beyond a ten, and I wouldn’t be there otherwise.

I suppose I should be grateful she didn’t give me the smiley/frowny-face version of the pain scale; instead she murmured “10” and continued typing as if I wasn’t there.

Olivier Hébrard via Wikimedia Commons

I am one of the 100 million americans who suffers from chronic pain. This number exceeds those affected by diabetes, heart disease and cancer combined, according to the .  The more than 900,000 doctors in the United States and multitude of nurses need a better way of interacting with and caring for this astronomical amount of people.

Chronic pain presents a myriad of other problems as well. While knowledge has increased over the years, pain is still poorly understood, and most physicians aren’t trained in managing it clinically. Many doctors lack information about less common underlying causes and related conditions. This makes it difficult for patients to get an accurate diagnosis. Another concern is that the medical profession often fails to acknowledge the pain, or even the effects pain has on daily living.

As if these barriers to patient care aren’t enough, society often disbelieves or blames people in in chronic pain. This stigmatization leads to further suffering from isolation and lack of appropriate care. Uninformed and biased response to use of opioids is one unfortunate example of this, as is the American Medical Association’s that pain assessment is no longer a necessary part of patient-doctor dialogue.

One of the most significant problems is that the medical world has limited ability to measure how a person hurts. This means chronic pain sufferers aren’t getting the support or relief they need.

The standard measurement of pain consists of a description by the patient (typically brief) and the doctor’s interpretation, both of which are too vague. Unlike blood pressure or temperature, clinicians can’t objectively measure pain.

The 1-10 scale can offer information to a certain point, but its usefulness is severely limited. At times it’s even more stressful than helpful; it certainly was for me that recent night in the emergency room. I knew my answers gave no particulars about how I felt, and I had to rate my pain so many times I lost count. I was asked at intake, when I got into a room, the moment I swallowed medication, after they took images, and every time another nurse came by.

Aside from the minimal information my number provided, how much difference was a few minutes going to make? Typically, not enough to move up or down on the arbitrary scale. I suppose I could have rated the pain in more detail, like I was an Olympic competitor, and given digits based on execution and difficulty. The nurse fails to properly insert the IV into my vein for the fourth time? A one point gain. Slightly less hurting in one of multiple painful areas? One-tenth of a point deduction. 

By Mehran Moghtadei Courtesy of WikiMedia Commons

As patients with pain, we are judges determining our own scores, but, it is our role as expert commentator that needs to be honored in the doctor-patient relationship. Medical professionals need a better way to understand the many levels of a person’s suffering, and the only way to do this is to gather information directly from patients. We need to be able to share our narrative with our doctors.

Even though pain is subjective, there’s a well-regarded method which can help. In 1971 Dr. Ronald Melzack and his colleagues at McGill University developed an assessment tool called the McGill Pain Questionnaire (MPQ). A review of the MPQ resulted in the development of a short-form version, the (revised in 2009), which addresses both neuropathic and non-neuropathic pain. This is the first tool of its kind to measure pain on a multi-dimensional level. Although far too few doctors implement it in their practice, it’s one of the most reliable pain assessment resources available, and is used by clinical researchers around the world.

The pain questionnaire offers descriptors to measure three dimensions of a person’s pain experience: affective (emotional impact of pain such as fear, anxiety or depression), sensory (location, intensity, temperature, pressure, pattern), and evaluative (intensity of the overall experience, actions that increase or decrease pain). Patients choose from well-researched descriptors (such as throbbing, stabbing, sharp, searing, numb, dull, cold, torturing) to explain the effect of pain in each of these three areas.

You can imagine how useful this could be when used over time to determine how we respond to treatments, and to see patterns of progression or remission.

Another helpful tool is the McGill Pain Index (MPI), a scientific pain scale born from the McGill questionnaire. A diagram rates the level of pain for various conditions on a scale from one to fifty; zero indicates an absence of pain, while higher numbers show increased suffering.

As an example, when you look at the you see that a fracture rates as a 17. Complex Regional Pain Syndrome (CRPS), one of the most painful conditions that exists, has a score of 46. That means it’s more painful than those with lower numbers including unprepared childbirth, non-terminal cancer and amputation. As somebody who personally lives with this harrowing medical issue, the chart emphasizes why CRPS is nicknamed the “suicide disease.”

So, considering the value and potentially powerful impact of these assessment tools, who can they help?

Medical and mental health professionals.

The questionnaire can help doctors discriminate between varying medical conditions, make diagnoses, and more effectively treat patients.  The pain index can help psychotherapists conceptualize the physical impact of a particular problem that’s unfamiliar to them. Like any other approach, this can only be effective when there is a trusting and mutually respectful relationship between patient and caring professional.

Family, friends, care-givers

Many people with chronic pain feel they lack adequate support. Although loved ones shouldn’t need a diagram to help them with empathy, a look at the pain index could expand their hearts (and minds). It might inspire compassionate souls to extend the simple kindness of reaching out on occasion. See Christine Miserandino’s wonderful and clearly explainedto help those in your life understand your day to day reality.

www.1001freedownloads.com

Women

With respect to men who also suffer from pain, it’s no secret that women in particular tend to get misdiagnosed or dismissed in the medical world. The overwhelming bias results in women getting less access to medications and insufficient (or an absence of) treatment. Among these and other injustices, the impact of insufficient care can lead to anything from reduced physical functioning to life-threatening circumstances. For Grace is a fantastic organization that supports women in pain.

People with chronic pain 

We can suggest that our doctors use the questionnaire and index to understand more about the source of pain, as well as it’s quality or intensity. Pain may persist despite multiple levels of treatment and self-care. Sadly, sometimes patients blame themselves, or feel frustrated about the various levels of impact pain has on their lives. The scientific picture comparing conditions can offer much needed perspective.

Patients with rare diseases or poorly understood medical conditions—and those providing treatment 

CRPS, as mentioned above, is one example of a .  Most of us who have the condition suffer alone for a long time prior to receiving any help. We see about six doctors before we even get an accurate diagnosis. This is a devastating truth considering early intervention is key to increasing the likelihood of successful treatment. Link here for information on other conditions.

Although the complexities of pain need more attention, the questionnaire and resulting pain index’s long-standing, reliable outcomes can help to demystify a person’s agony. Patient-centered assessment tools, which move beyond the simplicity of a number, have potential to positively impact the medical community and society as a whole.

The value for people suffering from pain? Beyond measure.

Elisa Friedlander is a licensed psychotherapist. Currently unable to practice due to an excruciatingly painful neurological disorder, complex regional pain syndrome (CRPS), she is active in disability and pain communities. Much like her tendency to belt out 70’s music in the bathtub (the sappier the better), she often writes while submerged in water. Now that she extends some of her writing to the public, what happens in her tub no longer stays in her tub. Elisa has been published in a local mental health publication, a national medical newsletter distributed by www.rsds.org, and contributes to The Mighty. Convinced that pain and humor must play nicely together, Elisa can be heard laughing with her wife moments after yelping out in pain during intermittent visits to the emergency room. Elisa loves living in the San Francisco Bay Area with her wife and best friend (one in the same) and their irresistible rescue dog, Zakai. A baby elephant would complete the picture. More of her story and other writing can be seen on her blog at https://www.ElisaFriedlander.com

If you or someone you know needs help, call 1-800-273-8255 for the National Suicide Prevention Lifeline. Outside of the U.S., please visit the International Association for Suicide Prevention for a database of resources.”

Opioids: Friend or Foe?

Opioids are they friend or foe to people living with CRPS?Written by Alaa A. Abd-Elsayed, MD (Dr. Al), Assistant Professor Department of Anesthesiology, University of Wisconsin School of Medicine and Public Health, Madison, WI

It is nearly impossible to search for information on chronic pain conditions without stumbling across articles on the dangers of opioids.  The FDA has recently published action plans to reduce opioid abuse and a number of states are putting together new regulations regarding opioid prescribing.  For those suffering with chronic pain, all this negative talk of opioids can make someone who is using (not abusing) them feel like they are wearing a scarlet letter.  While the rationale for implementing these strict regulations on opioid prescriptions comes with good intent, it is also a burden those in need of adequate pain relief.

What many people forget is that opioids are not FDA approved for the treatment of chronic pain (greater than 3 months) – which is why, in part, regulators are beginning to crack down on long term opioid use.  So, the question remains – for those suffering with chronic pain, are opioids really the right choice?

When exploring treatment options for CRPS, the usual suspects are always noted: NSAIDs, neuropathic pain meds (gabapentin, pregabalin), antidepressants (amitriptyline, duloxetine), opioids, topical pain relief, physical therapy, and sympathetic nerve blocks.  Although these medications are widely used, none of these agents have been approved by the FDA for the treatment of CRPS – and there is limited efficacy data to support their use.  Specific to opioids, only one randomized controlled trial in patients with CRPS has been studied.  This study found no difference in pain relief between morphine and placebo (Harke, 2001).  Although the data is limited, the US CRPS treatment guidelines (Harden, 2013) still state that while opioids are a reasonable second- or third-line treatment option to try, they should not be used initially.

Since opioids really aren’t a good option for initial treatment of CRPS, what could be?  Results of several small trials reported over the last 15+ years suggest that bisphosphonates should be explored for early CRPS-1.  Bisphosphonates are a class of medications used to treat osteoporosis and other bone-related conditions.  The benefits of bisphosphonates is that they are non-opioid and may reduce pain by targeting one of the key mechanisms in early CRPS (localized osteoporosis at the site of injury).  Five placebo-controlled trials with various bisphosphonates have been completed, and each one of these studies saw statistically significant improvements in pain scores (Adami, 1997; Varenna, 2000; Robinson, 2013; Manicourt, 2004; Varenna, 2013).  The fact that these studies were generally small in size and conducted at single centers makes it hard to draw definitive conclusions. But taken together the results support the study of this class of drugs for the treatment of early CRPS-1.

Currently, no bisphosphonates are approved for the treatment of CRPS, however, there is a large, multi-national, ongoing clinical trial evaluating the use of oral zoledronic acid (AXS-02) in patients with early CRPS-1.  This study marks the first oral bisphosphonate to be evaluated for CRPS in a large clinical study with the intent of gaining FDA approval. Additional information about this study and other ongoing clinical trials can be searched for on clinicaltrials.gov. 

Dr. Al is a pain medicine physician at the University of Wisconsin Pain Clinic who regularly treats patients with CRPS.  Dr. Al is an investigator in the CREATE-1 study and is actively recruiting patients, contact his research coordinator if you are interested in learning more about the study (Maggie Chilsen, [email protected]). 

References

Harke H, et al. Anesth Analg. 2001; 92:488–495

Harden RN, et al. Pain Med. 2013 Feb;14(2):180-229.

Adami S. et al. Ann Rheum Dis. 1997;56:201-204.

Varenna M. et al. J Rheumatol. 2000;27:1477-1483.

Robinson JN, et al. Pain Med. 2004;5:276-280.

Manicourt DH, et al. Arthritis Rheum. 2004;50:3690-3697.

Varenna M. et al. Rheumatology (Oxford). 2013;52:534-542.

Jodi’s Story of Hope – DRG Stimulator and CRPS

The following story of hope is about Jodi, a CRPS Warriors from Ainsworth Institute of Pain Management.

“Jodi, like most women, does it all. She is a mom, Nonna, baker, kickboxing instructor, softball player, wife, sister, you name it! Jodi led a very active, very busy and very happy life.

On April 17th, 2014 while on vacation, Jodi was involved in an automobile accident that would leave her with a broken ankle. Jodi’s doctor noticed her ankle wasn’t healing properly and there was a lot of sensitivity in the leg near and around the broken ankle that was not normal. Her doctor had a hunch it was Complex Regional Pain Syndrome, or CRPS… a short time later the became progressively worse and the diagnosis was confirmed.

Upon hearing this news, Jodi was devastated. Normal activities like shaving her legs were so excruciating it would cause her to cry!

Jodi needed a cane and a “plethora of pain meds” just to walk a block.Nothing worked – dozens of medications and even a spinal cord stimulator that stopped working after just a few weeks!

She had a life to live, and responsibilities to herself and her loved ones, to be the best person she could be.

Jodi scoured the Internet to learn more about RSD and CRPS, searching for a way to treat her condition. Soon she came upon the Ainsworth Institute. “I read all about Dr. Hunter and was hugely impressed!” The next thing she knew she found herself 12 stories above Manhattan and for the first time in a long time there was a light at the end of the tunnel.

‘He was very confident and genuine and the staff were very attentive and nice,’ said Jodi. The combination of the two changed Jodi’s mood and she couldn’t wait to begin her healing process, and this time hopefully for good.

Dr. Hunter discussed the DRG Stimulator which had just been approved by the FDA only a few weeks before and he was one of less than 30 physicians in the country chosen to perform it. A short time later, Jodi received a trial of the DRG stimulator and she felt “a world of difference”. Her pain was reduced by 90%!!! She was walking without her cane less than an hour after it was put in. It worked so well that when it was time for the trial to be removed, she cried because she didn’t want to go back to the pain she felt before. Because of her amazing results with the DRG stimulator trial, she received her permanent DRG implant on May 3rd, 2016 and the rest is history!

‘I made the real appointment for February 29th, 2016. I will always remember that date because its the day that changed my life!’

Take a moment to check out Jodi’s before and after videos.

Fast forward almost two months and Jodi has become the patient face of the DRG Stimulator in the tristate area. Jodi has since done television interviews sharing her experience and inspiring story.

A few of us here at the Ainsworth Institute were able to walk alongside Jodi and her family at the Achilles International 2016 Walk for Hope and Possibility (RSDSA). Not only was Jodi able to walk the 1.35-mile route completely cane free but she served as a symbol of hope for the CRPS community.

“The walk gave me hope, and happiness knowing I didn’t give up.”

If you had told me, before I had my DRG stimulator, that I would be walking a mile and half without my wheelchair or cane I would not have believed you.

Matthew’s Story – Hope and Perspective

Matthew was diagnosed with CRPS RSD. He blogged about his story and experience and explained how he has hope and a new perspective.By Matthew for the RSDSA blog.

When a person is diagnosed with CRPS, often times it can be a confusing, complex time. Read what Matthew has gained from his diagnosis and what he hopes for your future.

My name is Matthew. I’m a 19-year-old male from Melbourne, Australia.  I was just recently diagnosed with stage 3 Complex Regional Pain Syndrome, but to most people’s surprise, it was an absolute relief. My injury started 5 years ago as a 14-year-old kid playing basketball. I clashed knees with an opposing player, which I had done hundreds of times before- everyone in sport has. All the usual symptoms of that type of injury came on and lasted weeks: swelling, bruising, dull ache, and redness. 4 months later, after not healing, I saw a sports doctor who sent me to get an MRI. The MRI revealed the conclusion of bone bruising. I was prescribed an anti-inflammatory medication and to see a physio[therapist]. After many months of continuously increasing pain and dozens of specialists telling me that the pain was “in my head,” I went to see my amazing general practitioner and asked to be referred to a reputable orthopedic surgeon.

Several weeks later, I saw the surgeon. The surgeon studied my latest MRI and told me that I had cracked articular cartilage and that I needed surgery sooner rather than later. I took his word for and got with it. He also gave me a cortisone injection to try and settle the pain down before the operation, which did nothing but make my pain worse! The surgery date eventually came and went as planned. Post-surgery, the surgeon told me that I had the worst articular cartilage he’d seen and it may never heal. Time goes by; 3 months, then 6 months. The pain only continued to worsen. I had been back seen the surgeon several times. He did several more cortisone injections. I also had experimental PRP injections, known as plasma rich platelets. Yup, you guessed it- all his attempts to settle the pain just aggravated it more.

By this time, I reached 17-years-old and decided I did not think it was ever going to go away, so I went back to trade school in constant, agonizing pain. I put on my happy face and continued on. Another 18 months went by. By this point, I couldn’t function, hadn’t been to school in a year, and finally decided I needed to see another surgeon or something. I went back to my same general practitioner, who actually told me he believed I had CRPS due to my symptoms. After further discussion, he sent me off to a world renowned knee surgeon for confirmation of diagnosis. He confirmed it and I was referred to the pain management specialist clinic at Epworth to see a CRPS expert. I couldn’t have been happier. Of course, I have a long, long way to go, but finally I can see light at the end of the tunnel! Finally, someone believes me. It’s not in my head! I have had two appointments with my pain specialist. He’s amazing. We tried a couple of medications with not much luck. I think we are going to try a sympathetic block next, fingers crossed!

I had times during the past 5 years, as a young fella, that I hoped I wouldn’t wake up because of the excruciating pain I live in. CRPS is terrible at the best of times, let alone being young and at school, having mates and teachers that don’t believe you. I never thought I’d get a diagnosis or anyone to believe that I’m in real, physical pain. But it happened, it happened for me so it can happen for you, too. I know I’m not out of the woods yet, not by a long shot, but I’m on the right path. I’m in the right direction! I’m more than satisfied with my new pain management specialists, so I have faith we’ll be able to get it somewhat under control. I hope I can return to my life. We all know what CRPS can take away from you. I’ve heard it compared to bleeding out slowly from a gunshot wound, and in many ways that is true. While you’re not physically dying, it slowly, but surely takes away your will to live and enjoy life. Coming from a young man, that’s a huge dramatic statement. Anyone that has been through this will understand. On the flip side, my will to live and enjoy life is only growing by the day. Every time I read another story of hope, I gain a little more faith that I will get better.

I’ve already talked about all the down sides of CRPS and it’d be perfectly understandable to think: “How would anyone be able to find a positive out of such a gloomy situation?” Well, my friends, CRPS has given me appreciation for life; the fresh air I breathe, the birds singing in the morning, it makes you think about all the people in the world not appreciating their lives. Most importantly it gave me perspective. The perspective that makes me happy to be alive each day, be able to breathe fresh air, even eat a sweet juicy apple. It’s the kind of perspective that makes you not worry about anything that isn’t worth worrying about. Every second you spend arguing/yelling/getting involved in drama is a second less you’ll get to do what you want with the days that God has allocated you. This is my story. I really hope it gives someone, even one person, some hope that one day they can get on the right path and head towards a happy pain free life.

Manual Ligament Therapy (MLT) and RSD/CRPS

Arik Warren Gohl who uses MLT to treat CRPS RSD By Arik Warren Gohl LMT, MMLT for the RSDSA blog.

Part 1- A Short History of Manual Ligament Therapy (MLT)

In 2003 when I first began creating Manual Ligament Therapy (MLT), it was for this simple but important reason… Something different had to be done in the approach of helping those with pain.

In those days as a medical manual therapist working in a Physical Therapy clinic, I became frustrated with the amount of time it was taking for people to heal while getting multiple therapies such as PT, Chiropractic, Massage , and anti-inflammatory injections.

Inspired by an old chiropractic technique called the “Logan Basic” that a good friend, a Chiropractor named Dr. John Mishko had shown me, I decided to do something about the suffering I was seeing. From there Manual Ligament Therapy was born.

The background of MLT is based on over 35 years of federally funded and international research identifying damage to ligament tissue, even micro-tearing like grade-1 sprains, as a major cause of neuromuscular conditions.  Although suspected for many years, the influence of ligaments on the musculoskeletal and nervous system was first verified by Dr. Moshe Solomonow PhD in the early 1980’s at the University of Colorado in Boulder.

Having based MLT specifically on the research of Dr. Solomonow amongst other doctors, I was truly honored to have been mentored and officially endorsed by Dr. Solomonow during the development of MLT.

The truth is ligaments, there are over 900 in the body, have been shown to contain large amounts of receptors that transmit vital information regarding movement, pressure, stretch, and in some cases pain to the nervous system.  From there the actions of the muscles, connective tissues (fascia), and even internal organs are directed.

In simple terms ligaments are the movement “managers” of the body, with the muscles and connective tissues obeying their instructions.  However, due to the lack of flexibility and nutritional circulation within ligaments, they are easy to damage and slow in recovery. These characteristics have been shown to be a major cause of acute, sub-acute, and especially chronic musculoskeletal symptoms.

Being completely non-invasive, MLT is extremely gentle with the use of finger pressure at less than 2-3lbs per square inch being applied to targeted ligaments. This combined with specific positioning of the body and limbs is suspected to create a neural “re-set” where the autonomic nervous system is moved out of the sympathetic state (fight or flight) and into the para- sympathetic state of relaxation.  The outcome is a significant and consistent reduction of muscular and fascial tension and pain in localized areas as well as throughout the body that is well documented clinically and in research.

 

Part 2- MLT and RSD

In 2010, MLT was for the first time specifically used to treat RSD/CRPS. The person treated was a 14 year- old girl, Haley DePriest, who had severe symptoms in one of her legs that had been ongoing for around 4 years due to an injury and subsequent surgery.

My good friend Dr. Edward Glaser DPM asked me to treat Haley to see what would happen.  Having never heard of the condition before (common in the healthcare world) I agreed to do a treatment of only MLT lasting about 20 minutes.  At the end, Haley upon standing up, stated she felt “much better!”.

In January 2016 I was notified that she had never had RSD/CRPS related symptoms again following the single treatment 6 years prior.

On the 29th of April 2016, further experiments using Manual Ligament Therapy on people suffering RSD/CRPS were performed with the organizational efforts of Dr. Glaser.

  • In total, 11 RSD/CRPS sufferers participated. The ages varied between 25 and 60 years, and the duration of symptoms ranged from just a few years to 15+.
  • The areas affected were combinations of arms/legs, backs, and necks with the majority of participants reporting between 5 and 10 on the pain analog scale with 0 being pain-free and 10 being worst pain imaginable.
  • All were undergoing various treatments including medications, opioids, nerve blocks and Ketamine infusions with most having received multiple surgeries.
  • All participants were given a 25-minute treatment of a pre-planned protocol of only MLT.

 

Here were the results-

There were 11 people treated in the pilot in late April 2016.  Although treated 5 years ago, Haley can be considered a 12th participant in the study.

  • Four participants felt no effect. In fact one said that the areas of treatment got temporarily worse.  Each of these people had unique situations that made treatment difficult (such as a recent steroid injection, multiple pain medications, or Ketamine the day before)
  • Four participants had an immediate pain reduction averaging over 50%.  There has been some relapse in those participants but there are many complicating factors and the characteristics of the pain changed to more of an intermittent electrical sensation. All reported some permanent positive changes.
  • Four participants experienced near complete resolution of pain. Relief lasted for days, to weeks, to five years (Haley DePriest). A few reported some return of pain but with less burning and again, more of an intermittent electrical sensation.
  • Overall, the participants who received positive results including near complete resolution, averaged over 70% reduction in RSD/CRPS related pain. This average does not include the outcome of Haley DePriest.

 

Part 3- Why Did MLT Have This Effect?

  • As is well known, RSD/CRPS has been strongly linked to a hyper-active response from the autonomic nervous system which creates a very strong sympathetic nervous reaction from the body based on trauma.
  • Ligaments and fascia have been shown to have direct influence on the autonomic nervous system in order to provide the brain and spinal cord necessary information to create stability and movement.
  • Based on the sensitivity ligaments and fascia have to even slight trauma both physical and emotional, It could be hypothesized that RSD/CRPS may have a direct relation to a dysfunction in the sensory loop that includes ligaments and the central nervous system.
  • With that being stated, Manual Ligament Therapy has clinically demonstrated over the past twelve years that is appears to have an effect on the autonomic nervous system where a more para-sympathetic or relaxed state occurs when it is used. 
  • Therefore, it can be hypothesized that due to MLT’s effect on the nervous system, a kind of neurological “re-set” is achieved reducing or in some cases, eliminating the pain related to RSD/CRPS as well as other chronic pain conditions. However, early testing has shown that a person’s intake levels of specific types of medication possibly interferes with the positive (at least in short term) benefits of Manual Ligament Therapy for various reasons yet to be exactly identified.

 

Part 4- So What’s Happening Now?

So far, the results Dr. Glaser and I have achieved using MLT has been encouraging to say the least. But I think we can do better.

The reason is that as I have looked back over the 18 years of my practice, I now realize that I have, without knowing it, successfully treated patients suffering RSD/CRPS. In fact last summer I had a patient who had, now that I know the signs and symptoms, RSD/CRPS type-2 from a dental surgery in 1996. She tried unsuccessfully every treatment she could but suffered day and night unable to smile, eat, or even brush her teeth without high levels of pain.

I treated her with the same protocols I use with all my patients. This includes MLT, dynamic stretching, trigger-point therapy, and movement/posture re-education. The result was near 100% relief within 4 treatments.  And yes, she has remained that way since.

In the pilot studies including Haley DePriest, we only used MLT which I believe helped in calming the nervous system but this is only the first step.

So why not start focusing on RSD/CRPS using everything I do?!

Well with this inspiration Dr. Glaser and I have created a new program that will soon begin. Its mission is to treat RSD/CRPS and other chronic pain sufferers with the complete protocol using MLT and the other modalities that has given me so much success in the past. 

The program is called “The Gohl Program”.  And no that wasn’t my first pick of names but was a suggestion of Dr. Glaser and other associates in the program including my father Warren Gohl who brings a vast professional knowledge base of helping others on many levels.

The Gohl Program, is basically a retreat spanning multiple days that sufferers of RSD/CRPS and other unresolved chronic pain can attend to receive my unique protocols as well as nutritional guidance, yoga/meditation, and specialized guidance for coping with life/trauma… No drugs are used. No surgeries are used. 

We have high hopes that we will be able to help many people who have lived with pain for too long, and that is after all, what started my search all those years ago.

 

About the Author

Arik has been a clinical manual therapist since 1999. In the years since graduating, he has developed numerous clinical practices and curriculums for Physical Therapists, Massage Therapists, and Chiropractors. In the past 12 years, Arik has become well known for creating a new type of treatment called Manual Ligament Therapy (MLT) and has been endorsed by some of the most respected researchers and doctors in the world, including Dr. Moshe Solomonow PhD and Dr. Edward Glaser, owner of Sole Supports orthotics.
In his time as a therapist, Arik has continued to seek new and more effective ways to treat difficult conditions with an advanced combination of modalities including dynamic stretching, movement re-education, and manual therapies. The end result is his protocols are able to resolve both simple and difficult conditions in a fraction of the time it would normally take in conventional physical rehabilitation.  For this, he has an international reputation as a sought out clinician for those suffering all levels of symptoms, as well as being respected as an educator of advanced subject matter such as neuro-ligament sciences.
Currently Arik owns a Physical Therapy clinic in Guadalajara, Mexico which has become the “go-to” clinic for patients of all varieties as well as some of the best athletes in the country. In addition Arik has recently teamed up with Dr. Edward Glaser of Sole Supports orthotics to focus on the treatment of the debilitating condition known as Reflex Sympathetic Dystrophy Syndrome (RSDS) with the goal of providing a non-invasive, non-surgical resolution for the disorder.

Contact the Author

[email protected]

[email protected]