Guest Blogger for RSDSA - RSDSA

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!

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.

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.

The Handicap’s Appetite

June 2, 2015

Written by Nancy Meagher for the RSDSA blog.

Sometimes I still crave running and walking. It was a rare wedding celebration that I had not been moved by the music to dance. A few years ago our niece married a fine fellow from the south of France. As I had taken a few years of High School French, and as language is a hobby of mine—- I was placed at the reception table with: Sylvan’s Lovely Aunts. Moved by American songs in a language that did not come easily, a friendship ensued. We danced our international hearts out. The French in their stylish slim heels – I in a sassy pair of patent leather flats that my friend Elisa insisted I buy. Tiger striped, black grosgrain ribbons at each Peak -a -Boo toe, they were subtle Diva shoes. Several days before the wedding, we leaned back into stuffed faux leather vibrating chairs and enjoyed Pedicures. I left the Salon with Hot Orange Toes. Two years ago, a sure -footed and overly-scheduled Elementary Art teacher, I stumbled and sprained my ankle badly, while crossing the school’s expansive athletic fields. It was the first full week of school, a brilliant September morning when students and teachers are refreshed and anything seems possible. I had just finished Art -Time with two consecutive groups of ernest Pre-Schoolers. An introduction and friendly banter with the new school Vice- Principal interrupted the tail end of our session. Taking it all in stride –which I am good at, I packed up both of my heavy Art Bags, tucked a large rolled poster under my arm and headed out on foot across the fields to meet the Fifth grade. It would be my third class of seven. On that vast grassland spread out before me which separated the two elderly school buildings, my appetite changed. My sprained ankle injury blossomed into a Nerve Disorder called RSD; Reflex Sympathetic Dystrophy. The newer name is Complex Regional Pain Syndrome: CRPS. A Rose by any name. A cure as elusive as the Monarch Butterfly I spotted in the field that day. It’s brilliant red-orange scales and black stripes – having caught my artist eye. Today, shoes hurt. My feet are as hot as that long ago nail polish – A Sympathetic Nervous System on overdrive. What I DO crave now, is swimming, and lots of it. Seven days a week for fifty minutes ––I stretch and glide through blue-green water with all the grace of that luminous butterfly, my wild red hair and black swimsuit skimming the surface of a field of turquoise green. Over and over and over and I never get tired of the slow, gentle and wonderful feeling of moving fast through space.

How to Obtain the Best Medical Care for CRPS

May 14, 2015

Written by Steven Feinberg, MD, MPH Board Certified, Physical Medicine & Rehabilitation Board Certified, Pain Medicine Feinberg Medical Group Palo Alto, CA and Rachel Feinberg, PT, DPT Director, Physical Therapy & Functional Restoration Program Feinberg Medical Group Palo Alto, CA for the RSDSA blog.

If you are reading this, it means you, a friend, or a loved one has been diagnosed with complex regional pain syndrome (CRPS). This article is not about diagnosing and treating CRPS but rather about how to obtain the best medical care for this diagnosis.

There are many good reasons to obtain the best medical care possible for this diagnosis. First and foremost is that early quality treatment has the best chance of resulting in the best outcome. Second, the wrong treatment can actually lead to a worsening of this condition. Third, from a practical standpoint, your insurance coverage may be limited and thus getting the right treatment first which is covered is very important.

There is both good and bad news. We will start with the bad news. Many of you will not have adequate insurance coverage to provide the absolute best care for CRPS. Problematic as well is that even with good insurance coverage, treatment available in your local community may not be ideal or even available. With that said, the good news is that if you will take time to educate yourself about your CRPS condition, you have a much greater chance of getting what you need to get better and to manage this condition.

While some treating physicians may focus on medications and interventional procedures (i.e., injections, device implantation, etc.), and these can certainly be an important part of treatment, the best treatment is approached from a biopsychosocial perspective by an interdisciplinary team of treaters. This means treating you as a whole person and paying attention to both the physical and psychological aspects of chronic pain. This approach involves coordinated medical care with a treatment team, other than yourself and significant others, including a physician pain specialist, a physical and/or occupational therapist and a psychologist.

In this type of biopsychosocial approach, it is critical that the person with CRPS, become educated about the condition and be the “captain of the ship” when it comes to managing medical care. Being passive and leaving it all up to the doctors and therapists just won’t work. The person with CRPS needs to understand his or her condition and how to treat it. That means becoming informed and educated. Whatever therapy is provided, it will not be enough if the CRPS patient doesn’t “practice” what they are taught 24/7 both at home and away from the doctor and the therapy center.

The ideal setting for treatment is where the physician is a rehabilitation-oriented pain specialist and not just a doctor focused on prescribing pills and doing procedures (i.e., nerve blocks, implanted devices, etc.). This means ideally, that the physician works closely with a physical and/or occupational therapist and a psychologist with expertise in treating CRPS. It is always best if they work out of the same facility as a team (this is called interdisciplinary) but even if they are in separate offices, it is important that they communicate and work together as a team (this is called multidisciplinary).

Getting back to the issue of education, while some physicians and therapists feel threatened by an educated patient who is knowledgeable and asks questions – and you need to be careful not to make the treater feel uncomfortable – it is perfectly okay to be educated about your problem and ask questions. High-quality treaters enjoy questions and are not threatened by knowledgeable patients. Questions you can ask include “Have you read up about CRPS?” and “Have you made yourself familiar with the usual medications and treatments prescribed for this condition?”

Here are some other things to consider when you are evaluating obtaining the best treatment for CRPS.

Identify other individuals with this condition in your community to find how they have done with their treatment and who they have treated with. Does their physician, physical therapist and psychologist listen to them and provide effective treatment? Are they being provided education about the condition and a good home program to expand and work on what they are learning when they’re in therapy?
Tell your primary care family physician that you are familiar with the diagnosis and want to make sure you are being referred to a pain physician who is rehabilitation oriented and not someone who focuses on prescribing medications and injections and other invasive treatments.
Interview the doctor and therapist to see if they are truly familiar with and experienced in treating CRPS. Is the medical care provided truly coordinated between the various disciplines?
Ask the physical therapist how commonly they treat people with CRPS and if they are familiar with some of the more recent graded motor imagery approaches such as mirror box therapy.
If there is no physical therapist in your community that consistently treats people with CRPS, ask to treat with the therapist that sees the most people with chronic pain. Many of the same pain management skills can be applied to managing CRPS.
As you speak with the physical therapist, see how willing they are to provide full answers to your questions. Quality CRPS treatment requires a lot of education and your therapist should be eager to provide you with the answers to your questions.
Many psychologists deal with symptoms like depression and anxiety, but ideally, the psychologist needs to be trained in pain management. It is very important that they use cognitive behavioral therapy (CBT) as part of their therapy as CBT has been found to be highly effective for managing pain. Cognitive behavioral therapy is a form of psychological treatment that focuses on examining and changing the relationships between maladaptive or faulty thoughts, feelings, and behaviors.

The RSDSA website is a great source of information. Other sources of information are The American Chronic Pain Association and The ACPA Resource Guide to Chronic Pain Medications & Treatment.

Please consider making a donation to RSDSA today!

Multidisciplinary Treatment – Three Weeks in Utah

May 8, 2015

Written by Aubrey Haley for the RSDSA blog.

In 2013, after living with full body CRPS for almost four years, I was afforded the opportunity to go to a treatment facility. My husband and I dug deep into the multidisciplinary treatment world, searching online and making phone calls for days. I knew I didn’t want to be checked into a rehabilitation hospital. Likewise, I didn’t want to be treated like a drug addict or a psych patient; I needed a facility that understood the intricacies of chronic pain. The Bridge Health Recovery Center kept popping up on my Google searches, like a sign from the universe. I was terrified to leave my family for almost a month, but I was desperate to treat the disease that was ruining our lives.

After a lot of research, we were certain The Bridge was the right place for me. The concept of multidisciplinary treatment is to incorporate physical, mental and emotional therapies to tackle chronic illness from every possible direction. The way The Bridge program accomplishes this is what sets it apart from other multidisciplinary treatment centers. The day after my arrival in Utah, I had a doctor’s appointment for an exam, blood work and medication review. Each morning, we went on a walk at 7 a.m. Our short walks gradually turned into several mile hikes by the time the session ended a few weeks later. This was important to me because reconnecting with nature was an essential aspect for my recovery and the part I was afraid of due to my mobility issues. Our daily routine included individual Talk Therapy, Physical Therapy, Personal Training, Chiropractic Care, Reiki and Cranial Sacral Therapies. We had several group sessions with professionals discussing topics like goal setting, relationship management and self perseverance. The program included presentations by a survivalist, a life coach and a personal chef, along with volunteering, drum circles, wild mustangs and art and music therapies.

On Sundays, we were encouraged to journal, do laundry or attend a church service of our choosing. Gradually, I realized I had been harboring a lot of underlying anger and bitterness towards my CRPS because my disease was caused by an accident that was someone else’s fault. Furthermore, as a wife and mother, I had been careful not to express my emotions out loud for fear they would show my weakness or impact my family, although they were manifesting in other areas. The Bridge program allowed me to dive into emotional areas I’d been hiding for years. Being able to explore my feelings and address my weaknesses freed me from the negativity that was feeding my disease. At the end of the three weeks, we each made a list of things to eliminate from our lives and threw them into a bonfire, representing the negativity we were letting go.

The Bridge program only works if a guest is open to the process. I arrived with a lot of faith and hope, though, I had no idea how the program would work for me. By the end of the session, I learned I had the ability to tap into the mental aspect of a disease many insist is not “in the head”. I had to let go of the emotions that were holding me back from a healthy future. Finally, I understood fear, anger and bitterness were fueling the feedback loop that was triggering my disease. Once I was able to put the mental, physical, emotional and spiritual pieces together, I managed to gain control of my “incurable CRPS”, changing my life for the better.

Follow Aubrey’s blog, “Fighting With Flare” fightingwithflare.blogspot.com to read more about her adventures with CRPS, healthy lifestyle and life as a wife and mother of four daughters.

Please consider making a donation to RSDSA today!

Endless Struggle With a New Twist

March 3, 2015

Written by Idamarie Scimeca Duffy for the RSDSA blog

Determination, hard work, a loving and supportive family and yes, even an insurance company that was willing to listen, has given one patient with RSD endless opportunities for healing.

My RSD was diagnosed in July 1990, six years after having a heavy metal door crush my foot at work. The only hope I was offered was a surgical procedure to possibly relieve 15-20% of the pain so I could continue working. In January 1992 I had a Right Lumbar Sympathectomy. I have been out of work and disabled ever since. In November 1992 I was confined to a wheelchair.

RSD has dramatically changed my life and lifestyle. I recently turned 60 and has always been a “workaholic” and active both socially and physically. I was extremely weight conscious, took good care of my body, and ate all the right things. A room of our house was strictly my exercise room, with a Nordic Track ™, a professional automatic elevating treadmill, a stair-stepper, stationary bike, slant board, mini trampoline, waist twister, light weights, and other tools. My husband and I would walk 3 miles, 4-5 days a week. During the summer I would swim 1-2 miles, 3 to 4 times a week. I was also an avid tennis and golf player.

Initially with RSD, my foot was turned in and over so badly it would drag on the extreme outer side and I would fall without assistance. I could only wear the lightest of shoes with absolutely no heel. After being in a wheelchair for eight years my entire body atrophied.

Since our house in NJ was not wheelchair accessible, and we could not make it reasonably so, in November 1997 we moved to Delaware. We had a small ranch house built that is totally accessible.

Although I could not swim the way I used to, I noticed that in warm water the intensity of the pain decreased. I stayed in the pool about one hour, doing non-weight bearing exercises with a light flotation device around my waist. Then I tried to swim with the left side of my body, working up to a quarter mile “free-styling.” I felt good, however, during winter the public pool water was never warm enough. When my aide helped me out of the pool all my limbs would be curled up so badly she had to wrap towels around me to get them warm.

My neurologist, Dr. Robert Knobler, The Knobler Institute of Neurologic Disease, Fort Washington, Pennsylvania, insisted I find a pool with water warmer than 90 degrees. Ultimately, we discovered the Endless Pool™. The pool is 14 feet by seven feet, and the standard depth is four feet, although that can be adjusted to particular needs. You can control the temperature and the flow of the water, and the pool also comes with therapeutic jets and other options.

In the pool, my muscles loosened in the warmth, the intensity of my pain decreased and the feeling stayed for a while once I was out of the pool. An added bonus was the warm water relaxed me. This was all great but we could not afford to buy the pool and the addition to the house it required.

My condition kept getting worse–my right hand and arm were becoming deformed and unusable (my hand now turned in and all fingers were clasped) and required surgery as did my bracial plexus, radial, medial and ulnar nerves. I was sent for physical therapy but Dr. Knobler still felt I needed to be in a pool of warm water. Since the sympathectomy I could not sit in a tub so a hot tub wouldn’t work.

In late 1998 I decided to have a discussion with the powers that be at the insurance company to see if they could help. One man said, “Mrs. Duffy, I have to tell you that if something happens to your husband we will have to place you in a nursing home. Since we are a workers’ comp insurance carrier we do not put a lot of money into nursing homes.” That did it for me. When I got off the phone I told my husband that by the time I turn 60 I would out of this wheelchair. I was 58 at the time.

Dr. Knobler sent me to a Rehab Specialist, Dr. Stanley Jacobs, Jefferson Hospital, Philadelphia, who suggested a custom made foot orthotic device that would slowly try to wedge out the inversion by using spring loaded tension. Dr. Jacobs began to set things in motion to order such equipment.

At this point (March 1999) the insurance company sent me for an independent medical exam. The physician stated that my prognosis for full recovery was poor. She did not feel the splints would work and suggested I have a baclofen or morphine pump implanted. She also said that since I was experienced and highly motivated with physical therapy that the use of an “endless therapeutic pool” at home would be a most appropriate treatment modality.

Because of this physician’s honesty, my husband and I told the insurance company I would prefer not to have an implant and would prefer the pool. The insurance company agreed to pay for the pool. My husband and I were again fortunate enough to get to the proper authorities and received a no interest mortgage through HUD for the addition to the house.

I have always believed you are what you eat and ate nourishing foods; so to further help my body I started a regimen of nutritional supplements to replace some of my medications. With the help of my psychiatrist, Dr. Edward Tobe, Marlton, New Jersey, I slowly began the transition from heavy medications to nutritional supplements when I could. Of course, I informed all doctors concerned with my healthcare whenever I started a new supplement. However, this winter I had a few setbacks and pain exacerbations and had to add a particular narcotic substance. I continue to take some antispasmodic medications, antidepressants, Neurontin® and a few other non-sedating meds.

While waiting for the pool installation Dr. Jacobs began working with me. He devised a device with a sneaker. He had a four-inch metal bar placed on the right side of an old right sneaker with a removable metal weight on the left side instep of the sneaker. I put this sneaker on four to five times daily and gently pressed the metal bar against the foot pad of the wheelchair 12-15 times for each set.

My physical therapist, Robert (Bob) Catalano, P.T., M.A., Cert. M.D.T. (Director), Rehabilitation Consultants Inc., in Wilmington, Delaware who worked with me since April 1999 and Betty Rodrique, O.T.R. Rehabilitation Consultants, Inc. showed my husband how to help with some of my home program.

The pool was finally ready in September 1999 and my home program became more extensive. I exercised in the pool for an hour and a half to two hours daily. The therapeutic jets help decrease the pain and my muscles are more manipulative during that time. Dr. Jacobs and Bob showed my husband how to manipulate my foot to help gradually move the muscle.

My daily exercise routine included placing a light-weight flotation device around my waist, going into the deep section of the pool, mimicking riding a bike, and walking (alternately) for at least a half hour. I gradually added adjustable hand devices to exercise the upper part of my body. I hold onto bars at either end of the pool, let my weight drift upon the water and paddle my legs. Then I tried to swim with a low current of the water, finally getting to the point where I can swim for half an hour at a faster flow of water.

In February 2000 Dr. Osterman told me to stop with the occupational therapist since it was obvious that the warmth of the pool water had helped the upper part of my body. The brachial plexus surgery is on hold.

I gradually progressed from the motorized wheelchair to a rollator (similar to a walker but with hand brakes and a seat). A couple of months later we incorporated a special tilt-tip cane to aid stability. Because I had not driven in over 10 years, the insurance company sent me to a Driving Rehab School. We sold our van and got a car, and though I passed my driving test and had our car modified, I am still very apprehensive about driving. I feel that is a small hurdle compared to the ones I have already tackled.

I’ve learned that insurance companies will work with you if you show them you are willing to work hard towards a difficult goal. When Dr. Jacobs and Bob felt I needed strengthening and conditioning exercises for my thighs and calf muscle, the insurance company purchased a reasonably priced treadmill for home exercise.

Today I am walking with modified shoes to prevent my foot from turning in, and may experience less pain, and can now do many things that 18 months ago I could not look forward to —or hope to do. I continue to be vigilant regarding my immune system since it is still compromised and I do some form of exercise daily. To help with the pain I practice transcendental meditation and other relaxation methods. I have also found that a positive attitude, perseverance, and a state of general well-being are helpful in order to make this type of progress.

My RSD may not go away but I have learned to tolerate it and try to move on. I am no longer destined for a nursing home if something were to happen to my husband. When my husband called the insurance company a few months ago to thank them and report on my progress he was told they installed the pool because their careful investigation revealed they were convinced that I would use — not abuse — the pool and if Dr. Knobler was correct, they would actually save a lot of money (even in the short run of two years). Amazing! Yes, it narrows down to dollars and cents but it is what we all practice; putting your money where it does the most good.