2015 - RSDSA

Twelve Things People with CRPS Want You To Know About Them During the Holiday Season

December 17, 2015

Sammie has CRPS and celebrates the holiday season with her puppy. — Sammie and her puppy Phantom

By Samantha Barrett, Special Events Coordinator

Tis the season to be jolly! Or at least, that’s what I’ve heard. I love the holiday season. There are beautiful lights and decorations everywhere, there are people singing cheery songs, there are fun, mindless movie marathons on TV, there is delicious food- all of my favorite things wrapped into one season. Maybe that’s why I am so exhausted this year! In my years with CRPS, I’ve noticed that things are a little different than what they used to be. But, I am finding a way to be a little less “bah-humbug” and a little more “holly jolly.” While some people may not understand why I’m Scrooge one moment and good ol’ Saint Nick the other, I am trying to change that. So, I created a list of the twelve things that I want my friends and family without CRPS to know this holiday season. Hopefully, you will be able to relate!

I’m actually not Scrooge/the Grinch, I’m just in pain/tired. The stress and excitement brought on by the holidays can make my pain worse. Add in any shopping, cooking, baking, crafting, and working and my pain is that much worse. Pain makes me tired because my body wants to shut down. I’m trying to seem happy, but this pain has a mind of its own. And in the end of both books/movies, you see that Scrooge and the Grinch really have huge hearts, so let’s focus on that!
I have to save all of my spoons in order to get to that holiday party. If you haven’t read up about the spoon theory, read about it here. Everything I did today (and this whole season really) has used up a majority of my spoons. If I’m able to appear at a holiday party, know that I am probably using all of my spoons for the rest of the week to come. I don’t like to miss out on things, but I only have so many spoons.
Ideally I would like a cure for the holidays. Then you wouldn’t have to read lists like this and all of my friends that live in pain would be able to be pain free. I would be pain free. That would be incredible.
One of the best things you could do is educate yourself on what I’m going through. Please don’t assume that just because CRPS isn’t life threatening means it is not serious. According to the McGill Pain Index, I am living with the worst documented pain. It doesn’t go away, there is no cure, and I fight this battle daily. If you could even just say “I may not experience what you are going through, but I am trying to understand,” that would make my entire holiday season so much better. Even asking if there is anything you can do for us is huge. A little thoughtfulness goes a long way with us.
I really am excited about the blender/toaster/socks you just gave me, but I also just had a surge of pain. I got really excited. That caused my nerves to go haywire on me. I did just wince, but it wasn’t towards anything like that. I can’t help what I do when I get a surge of pain. I am so grateful that you even thought of me. Sometimes I feel isolated because of CRPS, so the fact that you even got me something is sweet!
The best way to spread holiday cheer may be singing loud for all to hear, but that’s causing a bit of discomfort for me. Loud noises and vibration can make pain even worse. While I love to hear our family of 30 people sing “Jingle Bells,” it really can hurt. I would love to sing with you, just maybe on a much smaller scale.
Right now, I feel as though you could roast chestnuts over me, or like Frosty the Snowman, but for your sake I’m going to pretend I’m fine. CRPS pain is fire and ice simultaneously. I feel as though I’m putting my body on the hot stove and not being able to take it off despite how bad it hurts. Then I get a bit of a frostbite feeling at the same time, but it doesn’t neutralize the burning pain. But I live with this pain every day. I’m going to try to pretend everything is fine because it is a holiday and I don’t want to take away from it.
Watching a movie is the perfect plan for a holiday party for me right now. Watch any kind of movie with me. Let’s put on the Hallmark Channel and drink hot chocolate. I am perfectly content doing this instead of going out in the cold and traveling to an ugly sweater party. I get to stay home, wear my comfy pajamas, and avoid any kind of disturbances that could make my pain worse. Win win!
It took me a few hours to get this dolled up for the occasion, but that doesn’t mean my pain is gone. I really do appreciate the compliments I can get when I take the time to look “healthy” (i.e. “You look like you’re having a good day today” or, “Wow, you don’t look as tired as usual”). But I have chronic It doesn’t go away just because I’m having a good hair day. While I do like when you group me with you non-CRPS friends, just remember I still have my limits.
If I excuse myself to go take a nap, I’m not being anti-social, it’s how I can get through the day. This one is key. On Christmas Eve and Christmas Day, I am frantically trying to help clean, wrap, cook, bake, and entertain guests. If I have to excuse myself so I can go lay down, please don’t think I’m trying to be rude. I’m just trying to bounce back so I don’t miss the rest of the day. Plus, excitement comes into play again here and spikes my pain. Just give me a little bit to recover.
If I’m going to a party, I’m trying to wear the most comfortable outfit possible. Have you seen that they make ugly sweater shirts now that are much softer than ugly sweaters from a thrift shop? Chances are, if you have an ugly sweater party, I have to bend the rules because my body is sensitive to materials. It may not be a sweater, but at least it’s close. It was either this or I couldn’t come, and I really wanted to be able to come.
Everyone with CRPS is different. We all respond differently to various stimuli and have different ways of coping with our pain. Some people with CRPS may not have to nap in the middle of a holiday or may be able to wear that ugly sweater. But others may have to take a few days to recover from the holidays and may have to avoid any holiday party all together. The best way to know how your friend/family member with CRPS will be is to ask. We try our hardest to be able to participate in as much as possible, but we all have our limits. When in doubt, you have to just ask us.

Fighting Back: The War Against Chronic Pain Sufferers

December 11, 2015

By Suzanne Stewart, author of “Tears of Truth“

Think back to the Gun laws. Remember how some citizens were against taking guns away from the “people”? The reason being, that the “bad guys” will always have access to them and the “good guys” who are in need of protection; get killed in the meantime because their safety net, their weapons to fight against being robbed were taken away from them! Well, my friends, the same thing is happening now, this 2016; to “real pain patients” fighting against being “robbed” of their “safety net, their weapons” to fight against the chronic intractable pain, and nerve pain that “WE” live with day in and day out. Yes, I am one of those people suffering and trying to be a “pain warrior”. While I am fighting yet another battle to live maybe not “pain free”; but possibly with less pain and more living!

We are fighting a war against being robbed of the very weapons we need to fight. I have complex regional pain syndrome (CRPS) and I’m fighting to live not “pain free,” but with less pain and more living. Those in positions to help, need to take the time to do so. All 50 states now have proclamations that explain the burning, fire-like pain of CRPS. They discuss allodynia, or extreme sensitivity to touch, and the pain it brings.

But all of this means nothing if the government, FDA,CDC, physicians, and pharmacies take away the means of lessening our pain. We follow the rules, sign contracts with our pain doctors, and jump through hoops to get what we need to try and live some kind of life.

On the other side of the spectrum are those who don’t follow rules and who break laws. But they have a different disease called addiction and they ruin it for all of us. Only about 5% of opioid prescribed patients are addicted, yet they are making us all feel like criminals.

Would these same agencies and officials take glasses away from people who’s eyesight is not good? Would they take a white cane from the blind woman who needs that cane to make sure she is seen so that she won’t get hit by a car? Would they take anti-depressants from the hopeless, or Insulin from a Diabetic? Is this what is going to start happening? Are they going to also make the Deaf or the Blind feel “guilty” for using other methods of reading or “speaking”, by limiting braille or American Sign Language? Are we going back to the days of “tying the hands of the Deaf behind their backs” so they would be forced to learn to speak a language that they are unable to hear

But this year in 2016, it is going to continue to get worse unless we rally around and try to do something about this travesty! This year the new prescribing guidelines are getting more horrible. The Physicians who were once very good and capable at what they did and cared about people living with real and horrible chronic pain day in and day out; these same Dr’s are cowering and refusing to give medicine for pain where it is truly needed. Yet…once again…as I’ve said above; those who want it, and who are true “addicts” will be able to find a way to get what they need! While law abiding citizens, suffering daily, have no other means than trying to advocate for ourselves and continue to try and do what we can do…. in a calm, legal and respectful manner. We are not “addicts”! We are people who are suffering with a horrific daily pain and who are “dependent” upon a pill, a patch, a spray or a lozenges; to get through our daily routines. Some of those “routines” involve mostly sitting in a “Lazy Boy chair” for many hours per day, trying to be as free from pain as possible because moving too much means more pain later! It is so sad when taking a shower is so painful, that it is very draining and the rest of the day is pretty much left to doing not much of anything else after taking care of basic needs.

It is despicable that some pain doctors are being forced to push invasive surgeries on more patients. Physicians who pledged to “do no harm” will do surgery, instead of prescribing the medicine so desperately needed for the real chronic pain population.

There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our primary care physicians and even tying the hands of our pain management doctors. The CDC, FDA, and other groups think that they know more about pain and pain management, but when have they ever studied such things?

They are making a fake war on prescription drugs, when it’s really some kind of smokescreen for saving money!

Well, I say “Pick on the real criminals”, not the “weak or the ill chronic pain sufferers”! I feel afraid and “bullied”, even though I’ve not experienced most of this yet. I pray that I never do. I have experienced enough issues with my Dr. of 12 years leaving me and his entire practice after having written several too many pain prescriptions and padding his own pockets! But what he did was still not my fault! I did nothing wrong! I am a lay person who did what my Dr. told me to do to alleviate my CRPS pain, Chiari I pain and the pain of multiple herniated/bulging discs, RA and OA etc. I never wanted to take any of these meds. I never smoked, drank or took any drugs; not ever! I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me. (you can read about this in my prior blog posts). I had this happen to me this past year and when I tried to go and see the pain Dr. who originally saw me for several years following the car accident, he said that he “didn’t want any part of that other medical office’s mess”. I guess that was referring to me as a “mess” that he didn’t want to deal with! How rude and inconsiderate of him! I am a real person with feelings and so much pain, that some days I don’t know how I will make it through.

I’ve read that they are taking most pain medications away from anyone with non-malignant pain. Who are these non-medical personnel, these agencies, to say that malignant cancer pain is worse than non-malignant pain? Unless they’ve experienced either, how would they know? CRPS is #43 on the McGill pain index, right next to childbirth or amputation of a finger.

The agencies are trying to also push exercise and healthy eating habits, along with PT and “behavioral therapy” as an alternative to “pills” to help pain. They are saying that the goal in all of this is to stop the overdoses and the prescription drug abuse. Well, I say to that and to them: “A person can only take the medication given to them by their Dr. and if the Dr. is a good one, he or she will only prescribe the amount needed. Then why take it away if the patient is doing everything right ? If I am doing what I am told and only taking what I am allowed to take, then why take it away from me when it gives me some kind of a little bit of so called “life”? There are only bad Dr’s and bad people who are hurting the rest of us. The innocents should not suffer because of the crimes of a few! The “addiction specialists” scream “HYPERALGESIA” to everyone on opioids for any length of time. They say the pain meds stop working and that we all get addicted! We are all individuals whose bodies may become physically dependent, but that’s very different from addiction. If it is working, then how can it be hyperalgesia? In all honesty, if the doctor is a good one, he or she will only prescribe the amount needed. Why take it away if the patient and doctor are doing everything right and when it gives some relief? The innocents should not suffer for the crimes of a few.

Many patient advocate groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams of people to make up these new “rules” and guidelines. They didn’t listen to the voices of the Dr’s and people who live in the “Pain world”. They also found that many of the people who put these new rules together have a monetary gain in such matters! The government and these agencies are practicing inhumane treatment towards real and true pain patients. They allowed insurance agencies and others who would gain from these guidelines to make decisions for us.

One physician wrote in the Pain News Network that he has had patients on high doses of opioids for over 20 years and they have led quality lives. He also agrees that taking these meds from patients who’ve been on long term dosages is cruel and inhumane.

Sometimes people who want to change things to save a few dollars or get their products pushed, such as spinal cord stimulators and pain pumps, are not thinking of patients like me, who do not fit inside a nice neat box. My issues are different. I need these pain meds to survive.

So many lives have been lost because pain was not managed well! Chronic pain can kill you because it causes so many other issues and there’s a snowball effect when pain is not controlled.

Please use your voice and be heard! Help yourselves, help your sisters, mothers, fathers and brothers. Please lets everyone who’s suffering with long term chronic horrible debilitating pain, take a stand and rally around one another. We need to form advocacy groups that will work together for the common good! Not “my group” and “your group” but we need an “our group” that will help us and speak up for us and with us and take a stand against all of the knuckleheads who just want to make a profit and don’t care if we live a fuller or lesser life. They don’t even care if we actually live or die because if we are no longer a “productive member of society” in the eyes of our government, CDC, FDA and the others, then we will not be heard nor will get the help that we deserve. Please write to your State representatives, and to our Federal agencies, House of representatives…anyone who will hear us and not just let it be words to the wind! Please let us stick together and not allow ourselves to be treated so hurtfully and inhumanely for no common good whatsoever. But only for the lies!

I Feel Your Pain: The Power of Witness in Support Group

December 4, 2015

By Elisa Friedlander, from her blog.

People have a deeply innate desire to be seen. I’m not talking about Facebook selfie type visibility, I mean really be seen. To have people, or even that one person, be tuned-in to your joy, struggle or other experience. To simply be present without trying to fix you. When somebody bears witness to a piece of my story, we’ve established a connection and those shared moments become a part of me. I have received a valuable gift.

To be witness to the story of another is also powerful. Even though deep down we want people to see who we are, we might be conflicted about that. It can feel vulnerable, uncomfortable or even unsafe for some. When somebody allows me to see them, I know I am the recipient of trust. It’s a pretty big honor to be in that position.

This give and take makes for an ideal dynamic in intimate relationships. Even when we are fortunate enough to have it, though, sometimes we need more. We need to be witnessed by people who know first hand what it’s like to be in our situation. That’s where group support comes in. It’s not meant to be better or worse, or a more or less profound experience. It’s about being seen in another, important way.

After being diagnosed with a progressive neuroinflammatory condition called CRPS (complex regional pain syndrome), I wanted to meet others who understood this specific pain and its tremendous life impact. I searched for support groups but found none within a reasonable vicinity. I was not willing to be without it, so I started one of my own.

We gather each month and focus on a specific topic. When the conversation veers to something other than what we planned, the energy it ignites serves as useful information. There is strong desire to connect with others about the newly raised issue. Most often, we agree to revisit it another month when we can expand the dialogue.

Along with the discussions, the group itself is always evolving, and I love how welcoming and even excited current participants are when new people come to check it out. Each person offers what many friends, sadly, no longer do when medical issues enter the picture. They show up. We come together because of our shared experience, but our group is not only about pain. By listening without judgment, we also bear witness to one another’s strides, resilience and hope.

I get far too much credit for starting and keeping the group running. The truth is, it was not a selfless act on my part that propelled me to get it going. Yes, I wanted to contribute to this community somehow, and this felt like a natural fit for me, but it was more than that. I needed to, or I would continue to be the only one I knew who understood this type of burning nerve pain. I wanted a space where others were game for talking about issues related to our rare condition in a forward-moving way. I needed these people whom I had not yet met.

When I worked with parents of children who are Deaf and hard-of-hearing, I encouraged group support as an adjunct to our psychotherapy sessions. Hearing from me that their kids could be independent and live happy lives wasn’t enough. They needed to meet parents of older children to be directly exposed to that truth. For the majority, the group experience increased their ability to go further in individual therapy. Both systems of support offered a unique experience of witness that met different needs.

I have also had opportunity to lead many support groups. But at my monthly CRPS gathering, I am a participant. Sure, I facilitate, but being a gentle guide, offering up topic ideas or sending out information is only part of a much bigger picture. Having this group in which I’m not looked upon as the professional means I am in the company of my peers. I can open up and be seen.

Like the others, I wake up some days and pain informs me that I can’t make it. I might be in the midst of a major flair-up or recovering from a recent emergency room visit. I might feel exhausted from too many nights without sleep. Getting through the car ride, much less interacting with people, seems questionable. Yet I go, and people who know about the hardest part of my life start walking in. I am instantly comforted, and the feeling continues long after our time together.

I consider the group to be an integral part of my pain management plan. It doesn’t stop the hurting or help me regain mobility, but it’s high on my list of things that renew me, which is a key element of the coping process. Few things compare to the power of witness. There’s not a selfie I could post that could give me that feeling of being seen.

How Camp Is Changing Lives For All Ages

December 1, 2015

By CRPS Warrior Candice Clifford, Volunteer from the Center for Courageous Kids Pediatric Pain Camp Session

Experiences which leave an impression on your heart are the ones that stay with you forever…

I ventured to Kentucky this past July to volunteer at the Center for Courageous Kids’ (CCK) inaugural Pediatric Pain Camp. I took a solo trip, not knowing what to expect but ready to have fun with the campers. To many, Kentucky seemed like a random place for this east coast girl to be traveling to. However, as I reflect back on my experience at CCK, there was nothing random about this trip, rather I’d like to believe it was serendipitous.

Working with children who live with chronic pain and/ or illnesses is a population which is very close to my heart. I went to school for counseling, and later received a M.S. in school counseling. However, I soon realized during my last year of graduate school that I could no longer ignore my fascination with the medical field and had to follow my passion. Volunteering at CCK was my first step in making this change in my life; I went down to KY believing this experience was going to either confirm or dis-confirm my career aspirations. Needless to say, after spending four fun-filled days with the campers and their families, hearing many stories, and speaking with some amazing advocates in the field, I without a doubt knew this is the population I would advocate for.

The only way to describe CCK is the “Disney of Camps”. The staff goes above and beyond to accommodate the campers and their families, they generously transported me to and from the airport, and went to extreme measures to ensure that everyone had a memorable time. I could go on and on about how much I love CCK, but you really have to experience the magic to fully understand what I’m speaking about. There is something special that surrounds the campus; allowing children to be a child first, not a symptom, or a diagnosis. Camp brings families together, and creates a bond that seems to grow even when camp is over. The sky is the limit, dancing is prescribed, and it’s totally normal to be laughing one moment and crying the next.

Ironically, I was also at CCK during my four year anniversary date of being diagnosed with CRPS. I’ve come along way in four years; I received both my B.S, and M.S, traveled to El Salvador on a service trip, and endured an intensive pain rehab program. Before going to camp I wasn’t very vocal about my chronic pain to the outside world. Letting people in is scary, but if there is something that someone can learn from my story then the suffering I endured was worth it. One of the biggest lessons I learned at camp, is being vocal about CRPS doesn’t mean you are making chronic pain your full story; being vocal, and advocating leads to more awareness, education,and earlier diagnosis.

Volunteering at CCK taught me more then I could ever provide my camper. There are times when I hear myself chanting camp songs and other times where I feel so incredibly blessed to have stumbled upon the RSDSA newsletter announcing the camp that I cry. Not only am I grateful that attending camp pushed me to work towards my passion of teaching yoga to kids who live with chronic pain conditions, and launching my website Empowering Roots, but it also unexpectedly led to me learning about my own health. After having conversations with two very special people and gaining knowledge from parents at the camp, I was diagnosed with Ehlers-Danlos Syndrome a month after coming home from camp

Needless to say a piece of my heart will forever be at CCK…You might not come home with a new diagnosis, but I promise your experience at CCK will be just as life changing.

When I saw RSDSA’s fundraiser Coins for Kids, I knew I needed to do my part to help more kids experience the magic of CCK. I quickly created a Facebook Event “Candice’s Coins for Kids” and informed my family and friends about my fundraising efforts. Additionally, I shared many of the videos that were created after the pediatric pain camp to show others how their donation would impact the kids and their families. Thus far I have raised $350 (not counting change). My heart is so full of gratitude for the generosity of others and I am excited to volunteer at CCK in once again this July. Hope to see you there!

Join us to Color The World Orange™ for CRPS/RSD Awareness on Nov. 2

October 19, 2015

By The Color The World Orange™ Team

Color The World Orange™ is almost here and we need your support!

An annual event held the first Monday of November to spread awareness of complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD), on Nov. 2 Color The World Orange™ supporters will be wearing orange and hosting events to spread awareness of CRPS/RSD, as well as raising funds to support research of this debilitating condition.

To have the biggest impact, we need everyone in the CRPS/RSD community to get involved.

The easiest way to participate is to wear orange – a ribbon, a shirt, a bracelet — and post a picture to social media with the hashtag: #CRPSORANGEDAY™.

We had a goal to light the night orange on Nov. 2 and due to the hard work of Color The World Orange™ supporters, buildings across the world are helping to turn that goal into a reality.

In the U.S., the Con Edison Clock Tower in New York, the dome of the Nassau County, New York Theodore Roosevelt Executive and Legislative Building, the Terminal Tower in Cleveland, Ohio, the Houston, Texas City Hall building, the giant soda bottle at “Pops” in Oklahoma City, Oklahoma, the dome of the Westmoreland County, Pennsylvania courthouse, the Gulf Tower in Pittsburgh, Pennsylvania and the South Street Bridge in Saegertown, Pennsylvania will all be lit orange, as will buildings in Chicago, Illinois.

In Australia, the SkyPoint Observation Deck, the Queensland Performing Arts Centre, the Brisbane Treasury Casino & Hotel, the Brisbane Convention & Exhibition Centre and the Melbourne Star Observation Wheel will all be lit orange. In the U.K. the Brighton Wheel is also scheduled to turn orange.

Four Color The World Orange™ supporters will be wearing orange as they run the New York City Marathon and three cyclists in the U.K. will be participating in a 12 hour “cyclathon.”

These are just a few of the amazing events that have been planned for Color The World Orange™ 2015.

In addition, 40 proclamations, with more on the way, have been granted by U.S. Governors and local officials recognizing Color The World Orange™ 2015 and November as CRPS/RSD awareness month.

Color The World Orange™ was started in 2014 to bring global attention to a disorder that, unfortunately, too few people understand. The goal of the event was, and remains, to have one day where everyone affected, regardless of where they live or the location of their CRPS/RSD or what organization they belong to, can join together for one common goal—bringing awareness to CRPS/RSD!

We truly believe that if we stick together, our voices will be heard. There really is strength in numbers.

During the first annual Color The World Orange™ in 2014, buildings in New York, Chicago, Cleveland, Indianapolis, Indiana and Charlotte, North Carolina were lit orange, as were bridges in New York, Oklahoma City and a fountain in Australia. There were even CRPS/RSD billboards in Oklahoma City. One supporter ran the 2014 New York City Marathon, while another completed a 200-mile bike ride through the U.K.

Forty-four proclamations were obtained in 2014 from U.S. states and cities recognizing Color The World Orange™ and November as CRPS/RSD awareness month.

More than 1,000 tweets and more than 800 Instagram posts about Color The World Orange™ were made on Nov. 3, 2014.

Last year more than $7,000 from Color The World Orange™ events and fundraising was donated to the RSDSA to be used for research.

Let’s all work together to make Color The World Orange™ 2015 an even bigger success by wearing orange, and encouraging friends and family to wear orange! Make sure to take a picture and post it to social media with the hashtag: #CRPSORANGEDAY™.

Let’s show the world that while we are in pain, we are strong!

For more information and to find events in your area, please visit the Color The World Orange™ Facebook page or website at colortheworldorange.com.

7 Reasons to Try Qi Gong for RSD/CRPS

October 7, 2015

Written by Elizabeth Lane for the RSDSA blog.

Ok maybe eight. I’m adding one. It’s FREE. I should say that usually you must pay to have a teacher show you the form (which is often the cost of one massage or acupuncture treatment). Then you have the tools to help yourself whenever you need it. For FREE. For a LIFETIME. But I do know there are podcasts on iTunes as well if you want to try to go completely cost-free.

It’s almost unbelievable, right? No, i am over the FREE part. Actually, I’m not. That still excites me. But what I am getting at is how a form of moving meditation can alleviate pain and so many symptoms. Here are 7 benefits of qi gong and tai chi. I have never tried tai chi but I imagine at some point I will. What I love most about qi gong is that I feel confident in my abilities to control my pain. It takes work but I feel it has helped me immensely.

Cultivating the Qi through Integral Qigong and Tai Chi triggers numerous health benefits:

Qigong and Tai Chi initiate the “relaxation response,” which is fostered when the mind is freed from its many distractions. This decreases the sympathetic function of the autonomic nervous system, which in turn reduces heart rate and blood pressure, dilates the blood capillaries, and optimizes the delivery of oxygen and nutrition to the tissues.
Qigong and Tai Chi alter the neurochemistry profile toward accelerated inner healing function. Neurotransmitters, also called information molecules, bond with receptor sites in the immune, nervous, digestive, endocrine and other systems to excite or inhibit function to moderate pain, enhance organ capacity, reduce anxiety or depression, and neutralize addictive cravings.
Qigong and Tai Chi enhance the efficiency of the immune system through increased rate and flow of the lymphatic fluid and activation of immune cells. Resistance to disease and infection is accelerated by the elimination of toxic metabolic by-products from the interstitial spaces in the tissues, organs, and glands through the lymphatic system.
Qigong and Tai Chi increases the efficiency of cell metabolism and tissue regeneration through increased circulation of oxygen and nutrient rich blood to the brain, organs, and tissues.
Qigong and Tai Chi coordinate and balance right/left brain hemisphere dominance promoting deeper sleep, reduced anxiety, and mental clarity.
Qigong and Tai Chi induce alpha and, in some cases, theta brain waves which reduce heart rate and blood pressure, facilitating relaxation, and mental focus; this optimizes the body’s self-regulative mechanisms by decreasing the activity of the sympathetic nervous system.
Qigong and Tai Chi moderate the function of the hypothalamus, pituitary, and pineal glands, as well as the cerebrospinal fluid system of the brain and spinal cord, which manages pain and mood as well as optimizing immune function.

Every RSD patient is different but our struggles are similar. I treat my RSD naturally and am always trying to learn how to make life a bit easier with this condition.

Source

My Story of Living with RSD And I’m Sticking To It

September 15, 2015

Written by Jennifer Jones for the RSDSA blog.

After being diagnosed with RSD in 1997, my career had been forfeited and replaced with playing the roles of researcher, advocate, physician and pharmacist… as I was now a Professional Patient. The information on RSD was as abundant as it was scarce; so little was truly known about how to physiologically treat this baffling condition, yet the plethora of universal symptoms, suffering and damage was undeniable. RSD was isolating and lonely, yet I was not alone. Fortunately, by connecting and subscribing to the only two RSD organization/groups available (which, back in the day, was pre-social media and hard copy newsletters), I found others who were at a similar level of a dumbfounded “what now?” shock. I also joined the closest but not-so-local RSD Support Group around, later facilitating meetings in my home county.

There was a profound sense of understanding and compassion bred through a shared experience of… well, misery. Friendships were forged, laughter and information were shared, and ideas were exchanged. However, there was also a commiseration in sadness, anger, frustration, fears and uggh, the horror stories. Experiencing the spread to both of my legs, a seed had unwittingly been planted: “If it spreads to an organ, I’ll die.” By 1999, upper tolerance had been reached and the last straw broken when I read a memoriam for a 12-year old girl. That was the last time I looked at ANY RSD publication, and I didn’t return to a Support Group for many years.

The Story of my life had been rewritten with an unconscious consent and my entire identity had become RSD. Living and breathing an all-consuming life of illness was robbing the few quality moments offered by the Divine as respite. Fears were writing their own stories and the urge to fight “self-fulfilling prophecies” was growing stronger. I was NOT going to be a victim to RSD anymore, nor was I going to die from it. With tied hands, the medical community could offer no diagnostic equipment or standard treatment protocol, let alone a cure. How could they? They didn’t understand it. “Treatment” to address the many symptoms was patchwork at best and usually involved pharmaceuticals which usually created more symptoms. While many more years were to be spent bedridden and medicated, book studies on alternative medicine began, as did a small Yoga and Meditation practice. For every moment spent in agony, there was a determination to make up for it with a fun and creative solution to steal back time.

I realized that “I” AM the creator of My Story, my destiny, my fate, and my peace. It was also reassuring to know that there was a group to reach out to if I found myself in need. However, depending on ones perspective, a safety net can gently cradle or be a restraint. I chose to secure the net beneath and traverse a tightrope leading to an unknown destination, walking away from all that validated my truth in experiences so that I might redefine “me”. Fumbling through this process took time as I became my own teacher, and guidance came through stacks of self-help books. Trying to piece together a “plan”, I was going to find HEALTH. I was going to “walk” away from this condition with dignity, grace and, most importantly, a sense of humor! As My Story began to unfold and write itself, there were many personal revelations. Whether My Story chose to include pain in the future or not, that was up to fate. What was in my control and very achievable was expanding my comfort zones to explore alternatives for relief not just in my Body, but in my Mind and Spirit as well.

Eventually, this growth guided me to the most amazing teachers, counselors and education required to push through to the next level of healing. Pain/RSD was not going to define me. I had to stop giving it life force by constantly talking about my woes. Our Story is asked to be repeated over and over by the Nurses upon intake, then again for the Doctors, then with updating the Physical Therapist, then the Psychotherapist, then the Insurance Companies, then Disability — and it doesn’t stop there. No. Family and friends also get pulled into this tornadic activity that is “The Story”, perpetuating it further just by having to justify why we’re crying in agony from a mere air current from a fan on our skin or why we have frozen peas tucked into the back of our pants at the grocery store, in attempt to quell the muscle spasms inflamed by performing a simple ADL (Activity of Daily Living). And “The Story” mires in deeper reporting back to family and friends the experiences of coping to be in public within an inhospitable environment. Holy Wow. STOP! RSD is a Really Stinky Disorder. OK? It is.

So my advice? Don’t own it. Do not let a diagnosis, a prognosis, a fear or a mindset based in misery define you. Be honest with yourself, understand and accept true limitations. Know that you really do not have to justify yourself to anyone for having a unique life experience. Expand your horizons as much as you can and seek joy. Seek good teachers. Stay positive. There is so much more to the world outside of RSD Land. Fun stuff. Go crazy and write a new story for yourself; make it fantastical. While current reality may not support the powers of something like a magic wand, connecting with a deep desire to spontaneously heal may be the catalyst required for movement in a new direction. Question yourself. Question everything. Be open to finding comfort in the unknown, as some answers take time. Don’t let any other person write your story.

A personal experience: At 26 years of age my parents had been called in for a meeting with my Doctor in which she informed us that my prognosis was VERY poor. As she said “your daughter will never walk again”, I whimpered “yes, I will”. When she said “your daughter will never work again, get married or have children”, a tearful whispered response of “yes, I will” emerged. But when she finished with “your daughter is going to die with this and probably because of this”, my tears stopped, direct eye contact was made with the Doctor and there was no quiver in my voice as I unequivocally and sternly stated “No I Won’t”. She did me a favor, pouring a toxic fuel on my spirit; it diverted to enflame a very diminished Fire of Hope. I was going to prove her wrong… and I believe I have. I’m surely not dead; I may be limited but I’m working hard and loving it; and I’m not only walking — I’m dancing. A lot. Even when it hurts. And it’s Divine. That’s my story and I’m sticking to it.

JENNIFER JONES has had RSD for 18 years — 10 spent bedridden and the last 8 working toward more optimal health with Alternative Medicine. She attributes the application of her training (Alternative Medicine/Ayurveda, Life Coaching & Holistic Nutrition) to maintaining functionality as the RSD has spread to her arms, legs, face, side and digestive system. Even still, after 15 years medicated , now functioning pharmaceutical-free for 3 years, with 177 pounds lost and more good days than bad, Jen can often be found wrestling saber-toothed tigers, discovering new continents, or just climbing her favorite tree.

CCK – We Feel So Good: A Reflection of Our Experience at the Center for Courageous Kids in Scottsville, Kentucky

July 21, 2015

By Samantha Barrett, RSDSA’s Special Events Coordinator

I have a confession to make- I have never been to summer camp. Or, at least I hadn’t experienced camp until this past week when I went to the Center for Courageous Kids, where there was a week for pediatric pain. This was made possible by a collaboration between The Coalition Against Pediatric Pain, RSDSA, U.S. Pain Foundation, Rock Out to Knock Out RSD, and of course The Center for Courageous Kids. It is amazing what we can do when we all work together. I was able to adventure to Kentucky to represent RSDSA at this camp and had some fun of my own!

The children and their families were able to partake in a few days of pure fun. The theme of the week was “Get Animated” and featured characters like the Minions, Baymax from Big Hero 6, and other popular animated characters. Each family was assigned a counselor or two to help them through their time at camp. The counselors were fantastic. Several of them are going to school for various medical degrees. They are the future of medicine. The kids all seemed to bond with their counselors instantly. As the week went on, the counselors seemed to become more and more interested in the rare conditions and diseases that the kids had. But, there was never a focus on being “sick kids,” only on the fun to be had. The kids were not required to participate in every activity. If they needed to go sit down or to go nap, they were able to do so.

There was archery, horseback riding, fishing, canoeing, paddle boating, cooking, and bowling, as well as woodshop, arts & crafts, beauty shop, a pool, a gymnasium, and an arcade. Those were just the activities that the kids could participate in daily. Each area had a water cooler for everyone to fill up their water bottles, as the heat was incredible. If it was an outdoor activity, there was also a cooler with cooling towels to help prevent overheating. It was perfect. The counselors kept making sure that their kid was hydrated and made sure that an adequate amount of sunscreen and bug spray had been applied. There was also a carnival, a movie night, talent show, and the Messy Games. The Messy Games seemed to be a highlight for everyone. Each family was assigned to one of the lodges at CCK- red, green, blue, or yellow. Before the Messy Games, everyone got paint each other’s faces with the color of their lodge. They all came out to the main court yard with their team flags, chanting their lodges various cheers. There were four stations for each lodge to go to. One station involved pudding, another station involved oatmeal, another involved shaving cream, and another was a mystery slime. The goal of the Messy Games: use each of the four stations to try to make your team the messiest. The messiest team wins. I stood in the “safe zone” watching everyone cover each other with everything to try to become the messiest. Parents, counselors, kids, and other CCK staff members were all laughing, chanting, and flinging the mess at each other. I couldn’t even tell you which team won; I just remember only being able to see people’s eyes after the games were over. After the games, they were all able to dump water over their heads to clean off. This water war was just as entertaining as the Messy Games.

The talent show was a nice surprise. There was some singing, some acting, and some musicians among other talents. The counselors helped out if their camper wanted to participate, whether it was holding their microphone for them, being background dancers, and helping keep everything as smooth as possible. These kids had some truly amazing acts, it just took the talent show to get them to expose these hidden talents. We all even got our own Playbill with the featured talent listed. We had our own Elsa, a mini Taylor Swift, a female Sherlock Holmes, and more!

Mealtime was the perfect time for everyone to bond. Everyone had the chance to sit together at the long tables. This is where everyone could chat, plan the day, vent, and just hang out. CCK was very attentive to the different dietary restrictions that some people had. Everything was labeled to say if it contained gluten, dairy, eggs, nuts, and other allergens. There was a separate area in the back where people could go to get the gluten free and/or vegetarian option for the day. Mealtime can be stressful for some, but not this time!

As I observed throughout the week, I almost forgot that these were kids that did not do things like this on a daily basis. What a blessing it can be to say that I sometimes forgot about my own disabilities as well. As camp-goer Emily Schellhammer stated: “Camp is amazing and there, you aren’t an illness or injury or anything. You are a name and a kid. You’re equal to the person(s) next to you. Here, no matter what, you fit in. You aren’t judged. Here you’re free and happy and know you are not alone.” Some of these families haven’t been able to bond like this in quite some time. Having people from all over the country created a network for the kids and their parents. A mother of two of the campers, Marianne St. Clair, said: “The camp experience provided our family a place to connect, exchange information, and develop lasting positive memories with other RSD/CRPS families. Smiles and laughter are the best medicine and although the journey was difficult to get there and home, the trip was so worth it for the children and mom.”

I look back on my week in Kentucky and tears instantly form. It was such a happy time. There was so much positivity and joy. I wish that I had been able to go to a camp like this when I was younger, although I’m sure I still would have ended up stuck in the middle of the pond in a paddle boat. It was truly amazing to get to know the kids, parents, counselors, and other staff members at CCK. Thank you to all who came out to participate and all who came out to help. This camp was a dream come true for everyone. This was a brainchild and dream of Sue Pinkham, so please join me in thanking her with the Sue chant that rang through CCK: Sue, Sue, Sue, Sue, Sue, Sue, Sue!!!

RSDSA is extremely proud to have been a part of this pilot year for the pediatric pain camp. We have high hopes for another camp experience in years to come. We know there are more kids out there that would greatly benefit from and enjoy this camp. If you would like to learn more about this camp, and/or how you could potentially help in years to come, please contact Sue Pinkham at [email protected] or (781) 771-2095.

Please consider making a donation to RSDSA today!

Current and Future RSDSA Initiatives on Behalf of the RSDSA Community

July 2, 2015

Written by Jim Broatch, RSDSA’s Executive Vice President, Director

This month, RSDSA is partnering with The Coalition Against Pediatric Pain and The US Pain Foundation to co-sponsor a free camp for children living in chronic pain: THE CENTER FOR COURAGEOUS KIDS in Scottsville, Kentucky. The camp is July 14-17, 2015 for children ages 7-17. The goals of the summer camp are FUN, FUN, & FUN! It is the first time we have ever found a camp for children living in pain. The camp is totally FREE for all participants and a parent/guardian who will stay at the camp with his/her child. Please go to tcapp.org and fill out an application today!!! Space is still available. Act now before it is too late!

The recent June conference in Denver was an outstanding success. Our attendance topped 110 individuals and caregivers. One couple drove 14 hours from Arkansas to become more educated about current treatment options. Another traveled from Massachusetts! We are currently editing the presentations for viewing on our YouTube channel. We have uploaded 78 videos with more to come! Plans are underway to host the Integrated Solutions to CRPS in Cherry Hill, New Jersey on September 11, 2015 and in Orange, California on February 27, 2016. If you have any questions, please email Samantha Barrett at [email protected].

Bob Lane, a member of RSDSA’s Board of Directors has pioneered the development of a 1-credit hour CEU for nurses on Complex Regional Pain Syndrome (CRPS): Causes, Diagnosis and Treatment. If you are interested in teaching the course in your area, or want to see where a course may be coming next, please contact Bob Lane at [email protected].

RSDSA is also tackling the thorny issue on how individuals with CRPS are treated by Emergency Department (ED) staff when they go to obtain pain relief for an unbearable pain flare. The answer may be IV Ketamine. ED staff are very familiar with Ketamine, but not as a rescue agent for breakthrough neuropathic pain. We are exhibiting at the American College of Emergency Physicians in October to “broach” this intervention.

In the CRPS research arena, RSDSA via its International Research Consortium (IRC) has recruited over 35 established and productive CRPS clinics around the world to join the IRC. The IRC wants to encourage multi-center clinical trials of novel therapies. Just planting a seed of hope!

The RSDSA Board of Directors in May approved a pilot genetic study of CRPS. This project will address a fundamental question regarding CRPS: Why do some individuals develop CRPS and others do not despite experiencing similar injuries? Specifically, this project will examine whether individuals who develop CRPS differ from those who do not in terms of a wide array of genetic differences (in DNA), differences in how genes are expressed, differences in the proteins that make up the body, and differences in how chemicals are metabolized by the body.

This project will examine a vast amount of highly detailed genetic, protein-related, and metabolism-related information collected as part of a previously completed Department of Defense research study of 116 military veterans experiencing pain following traumatic injuries that required limb amputation. This information has never previously been examined. Study patients have been categorized as having CRPS, non-CRPS residual limb pain, or no limb pain. The study will examine whether development of CRPS rather than non-CRPS limb pain (or no pain) after amputation is linked to genetic differences in broad regions of the DNA sequence never previously explored in terms of CRPS risk.

It will also examine whether CRPS risk is related to differences in how a broad array of genes are expressed, as well as differences in proteins or metabolism. The study will additionally test whether severity of CRPS symptoms is associated with these genetic or other factors. This project will provide highly detailed information on a range of potential risk factors for developing CRPS that have never previously been examined. Results may help provide new directions for future research seeking to understand the mechanisms of CRPS and potentially suggest new possibilities for treatment of CRPS.

It is a very exciting and hopeful time for RSDSA and the CRPS community. Stay tuned! Don’t forget to follow us on all of our social media platforms for live updates:

Twitter: @rsdsa

Facebook: facebook.com/rsdsa

Instagram: @rsdsa_official

YouTube: youtube.com/user/RSDSAofAmerica

Developing CRPS/RSD and Finding Hope

June 29, 2015

Hi there! My name is Katie and I’m the blogger behind Upcycled Treasures and A Handcrafted Wedding.

I was diagnosed with CRPS back in August 2012, and remember how difficult it was to find information and inspiring stories. In fact, I generally ended my search feeling more discouraged than when I started, and this only seemed to make my symptoms worse. Can anyone else relate?

The RSDSA website was the best source of information I could find, which is why I am so excited to share my story with you. I want you to know that there is hope, and not to be discouraged by what you read. However, I’d be lying if I didn’t admit that I am also a little scared of what you may think of my journey.

You see, about a year ago a link to my story was shared on the RSDSA Facebook page, and there were several negative comments shared along with it. As a DIY blogger, I like to think I have a thick skin when it comes to the opinions of others. However, when it came to sharing my personal story I realized my skin may not be so thick after all.

For me it all began with a game of volleyball with friends. The next day I had a bruise on my right wrist but didn’t think much of it. Within a few days I was no longer able to use my right hand for the simplest of tasks, and the slightest touch was more painful than I could bear. The temperature difference was probably the strangest part, as my right hand was now ice cold in comparison to my left.

I had to readjust my computer station at work so that I could move my mouse and type with just my left hand, and I remember how difficult it was to push through the pain each day. The sympathy glances I received from coworkers was uncomfortable, and I lost count on how many times people asked if I had carpel tunnel.

Several weeks and doctor visits later, I finally had a diagnosis, CRPS.

Unfortunately, I was also told that there was no “cure,” just treatment that would help subside the pain. My first thought was if I would ever be able to have children, or hold a baby. It was difficult to imagine these things when I couldn’t walk my dog or peel a potato. There was no holding back tears as I feared for an uncertain future. I was prescribed some pain medication and referred to both a pain specialist and a physical therapist that I would now need to visit several times a week. My husband was my rock during this entire process, and was always there with encouraging words to help me remain positive. I told myself over and over that I would recover from this all very quickly. After all, if there was no timeframe for my hand to start functioning again, that meant it could happen any day now, right? I am a strong believer in mind-body control and had to remind myself not to worry about the future, but focus on the present moment. I practiced my hand exercises several times a day while telling myself “this feels good” every time I used my hand, and to my surprise, it did. There were moments where I had to stop, take deep breaths, close my eyes, focus on being present, and then start again but I improved every day. It may seem ridiculous to some but I believe I “tricked” my brain into thinking everything was okay, and that helped me overcome both my fear and my pain. It’s been 3 years since I was diagnosed and do I still have pain? Yes, but I’ve learned how to manage it without medication. Is the temperature in my hand still different? Yes, almost daily. Do I remain positive? Absolutely! My hand still gets weak while working on certain projects, when I spend too much time on my phone {booooo}, or from typing away on my computer {which is practically every day}, so I make sure to take breaks and practice my hand exercises. I also keep a portable heater and heating pad next to my computer and use those almost daily. In fact, my portable heater is on right now as I write this. Sometimes I feel guilty for not being as active in the RSDSA community, but the truth is I don’t like to talk about my situation too much because every time I do, the pain comes racing back and fearful thoughts quickly enter my mind. This started to happen when I thought about sharing my story here, but rather than drift off into negative thoughts about how this pain could impact my future or get scared that it may get worse or never go away, I took some deep breaths and reminded myself to stay present. A few moments later the pain subsided. You can call me a weirdo or crazy, but I am a true believer in the power of positive thinking, and being in “the now”. This doesn’t mean it always comes easy, but I know that I have control over my thoughts and that positive thoughts lead to positive outcomes and visa versa.

The best advice I could give someone going through this is to stay present. Don’t think about how this happened, don’t worry about what affects it could have on your future, and as difficult as it may be try not to think about the pain you may be going through. Instead, take a moment to take in all that is around you, take a deep breath and focus on what you see, what you hear, what you smell, and tell yourself you feel good. This may seem awkward or feel like a lie at first, but keep repeating it to yourself and pretty soon you will know it to be true.

I’m sure I will receive a lot of judgment on this and that’s fine. This is what works for me, and if I can give hope to just one person that is reading this, then it was worth it.

I was lucky to be diagnosed pretty early on, and for that I am grateful. There wasn’t a lot of information available 3 years ago, there still isn’t enough available today, and I think it’s important to raise awareness and bring optimism to others who have been diagnosed with CRPS, or know someone who has.

The truth is, being diagnosed with CRPS made me realize that life is too short not to be doing what you are passionate about, and I’ve been following a creative path ever since. I feel so blessed to be doing what I love, and for this reason I donate 5% of my proceeds from invitation sales to the RSDSA.

You can read more of my story here, and feel free to email me with any questions.

Remember, if there is a will, there’s a way, and all that matters is this moment. Right. Now.