7 Reasons to Try Qi Gong for RSD/CRPS

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. Qigong and Tai Chi coordinate and balance right/left brain hemisphere dominance promoting deeper sleep, reduced anxiety, and mental clarity.
  6. 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.
  7. 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

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

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!

Group Picture

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

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

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.

How Are Bone Scans Used in the Diagnosis and Treatment of CRPS?

Written by Angela Mailis-Gagnon MD, MSc, FRCPC (PhysMed)

The three-phase bone scan has been used since the mid-1970s to diagnose CRPS. An intravenous(IV) injection of a particular radiolabelled substance that has a special tendency to concentrate in the bones is administered and a technician takes images of the body part in question, looking for the initial phase of “blood flow.” Immediately, he will look again for the second phase of “blood pool.” Finally, approximately 2 hours later, images will show the concentration of the radiolabelled material in the actual bones; this is the “delayed phase.”

There has been a characteristic pattern of activity in the involved limb, which in the early 1980s was described as “pathognomonic” -a sign or symptom upon which a diagnosis can be made- of CRPS. However, these were retrospective studies, which looked at patients who first had the bone scan for suspected CRPS and then the data were analyzed. These studies could not tell how many of these patients who had a limb trauma, but no CRPS symptoms, had an abnormal bone scan as well.

CRPS has been reported fairly frequently after a fracture; however, in one study mentioned in the recent volume of Progress in Pain Research and Management (1), only 16 percent of the patients diagnosed with CRPS 8 weeks after trauma had the characteristic bone scan pattern.

A meta-analysis of 19 published papers related to CRPS combined the data from all these studies and used special calculations to give an overall idea how well abnormalities in the scan correspond to those who have clinical evidence of CRPS. In only half the cases, the bone scan pattern was pathognomonic of CRPS. (1) Furthermore, as the disease progresses, the changes in the bone scan go away.

Interestingly, about 12 years ago, a patient of mine who had all the symptoms and signs of CRPS I had a surgical sympathectomy (considered an appropriate type of surgery for the syndrome at that time). Her three-phase bone scan before the surgery was absolutely normal; after the procedure, the radiologist told me that, according to the bone scan pattern, she had “florid CRPS.” Intrigued by this, we followed a number of patients before and after sympathectomy. (2) and proved that sympathectomy itself produces a pathognomonic CRPS bone scan.

In my line of work, CRPS I is a common diagnosis, representing 14 percent of all patients with neuropathic pain referred to my clinic (unpublished data from a very recent analysis of 784 consecutive patients who attended my program). Frequently patients are referred to me because of a “CRPS bone scan.” Many of these people don’t have symptoms any more, but the bone scan is still active. Other patients are sent to me because of an abnormal bone scan (done in the process of regular follow-up), but they have no other symptoms. “CRPS bone scan” can occur also in the healthy leg, not the one with the CRPS! Obviously this is due to the abnormal and excessive weight bearing demands on the good limb when the patient favors the leg with symptoms. In other cases, I have seen a few patients with factitious disorder imitating CRPS (these emotionally-disturbed individuals may ligate the arm or the leg creating the picture of CRPS), and some have a “CRPS bone scan,” which becomes normal when they stop ligating the limb. Finally, I have a significant number of patients with florid symptoms and signs of CRPS and a negative or unclear three-phase bone scan.

On the other hand, several studies have shown that typical CRPS bone scans can be seen in patients with diabetes and diabetic neuropathy. (3)
In my view, the value of a three-phase bone scan in the diagnosis of CRPS is very limited. A three-phase bone scan neither makes nor excludes the diagnosis of CRPS by itself. I always teach my students: “Never treat a test result, treat the patient.” In other words, a pathognomonic “CRPS bone scan” can confirm a diagnosis of CRPS only when my patient has the clinical signs and symptoms of CRPS.

1. Progress in Pain Research and Management , CRPS/RSD: Current diagnosis and management, pg 152-154) published by the International Association for the Study of Pain, 2005,
2. Mailis A et al. Alterations of the three phase bone scan after sympathectomy. Clin J Pain, 10:146-155, 1994.
3. Mailis A. Is Diabetic Autonomic Neuropathy protective again Reflex Sympathetic Dystrophy? Clin J Pain, 1995;11:76-84).

Angela Mailis-Gagnon MD, MSc, FRCPC (PhysMed) is the Medical Director, Comprehensive Pain Program, Toronto Western Hospital, Canada.

Lessons from the Front

Questions for Lt. Col Chester C. Buckenmaier, III

In the February, 2005 issue of Wired, Lt. Col Chester C. Buckenmaier, III talks about casualties in Iraq. He believes “the future of wartime pain control is a new form of anesthesia called a continuous peripheral nerve block, which takes a more targeted approach by switching off only the pain signals coming from the injured limb, leaving patients’ vital signs and cortical functions unimpaired.” Further in the article, it says, “Pioneered in experimental programs at Duke University and St. Luke’s-Roosevelt Hospital in New York City, continuous peripheral nerve blocks could transform civilian medicine in the next few years by reducing the incidence of chronic pain…” Further, this technique “will enable patients to take control of their own pain relief at home, with less dependence on addictive pharmaceuticals.” [1]

We were intrigued by this, and asked Lt. Col Buckenmaier, an acute pain specialist at Walter Reed Army Medical Center (WRAMC), about this technique and its potential use for people with CRPS.

Q: Could physicians use regional anesthesia, continuous peripheral nerve blocks, for peoples who have complex regional pain syndrome? 
Yes. It is a technique we use at WRAMC to provide patients with a ‘pain free interval.’ We believe this temporary adjustment in the afferent pain input from the affected CRPS area allows the brain to ‘reset,’ often resulting in improvement in symptoms when the block is resolved. Currently, this treatment is purely investigational and has not been formally studies to my knowledge. Again, it is a treatment option we employ at WRAMC.

Q: What about using it for other neuropathic pain syndromes? 
Regional anesthesia blocks for a variety of chronic pain syndromes are common in chronic pain practice. Though I practice chronic pain medicine, my specialty is acute pain and perioperative medicine. Chronic pain is a clinical, outpatient activity while acute pain is an inpatient hospital activity. We have a close working relationship with chronic pain but our focus is different.

Q: Could this be used as a preventative measure, to keep acute pain from becoming chronic pain? 
We know that uncontrolled pain has a number of ill effects on the body- depressed immune function, increased stress response to surgery, up-regulation of inflammatory mediators, to name just a few. We believe that true preemptive pain control (pain management before, after, and long after the surgical insult) has a positive impact on patient recovery and possibly limits the development of chronic pain. You have essentially hit on the fundamental question for regional anesthesia and advanced pain control. Do we impact on morbidity and chronic pain states? We are hoping our Regional Anesthesia Combat Casualty database will help us begin to answer this question. We have the largest cohort of wounded soldiers, many with amputation, who have been exposed to regional anesthesia during their care. We plan to compare these soldiers to other databases with soldiers who did not receive this intervention. This is a fundamental question that the Army Regional Anesthesia & Pain Management Initiative is trying to answer.

Q: Is it appropriate for chronic pain patients? With any modifications? 
It is appropriate for a variety of chronic pain patients as one of a variety of therapies. Because it is an invasive technique, it is usually reserved for the most difficult cases.

Q: Have any studies have been conducted on this procedure for long-term pain relief? Studies are available that have tried to define an impact of regional anesthesia on phantom limb pain following amputation. Results have been mildly encouraging. The biggest problem with these studies in the ‘n’ number (sample size) of participants is usually very small. Considerable work remains to be done in this field of study. I am hopeful our database will help clarify some of these issues.

Q: Are you seeing many soldiers returning from the war with symptoms of CRPS? 
No, CRPS is a rare condition that strikes patients with a variety of injuries. Some people with CRPS have the condition begin with something as simple as an ankle strain. The use of regional anesthesia for the management of CRPS is an interesting footnote; it is not the focus of our organization. We are specifically interested in how pain adversely affects recovery from major surgery (an improvised explosive device that blows off a soldier’s leg for example) and how we can improve on pain management in general after surgery. While regional anesthesia is a focus of our organization because it is so effective, it is just a slice of the whole pain management pie.

We are the Army Regional Anesthesia & Pain Management Initiative, we are also interested in innovative uses of narcotics, ketamine (and other NMDA receptor antagonists), new nanotechnology pain medications on the horizon, NSAIDS, drug combinations, and true multimodal pain therapy. We are working very hard to improve the experience of our soldiers in the current war to ease the strain of the very successful but difficult evacuation realities facing them after wounding.

Biofeedback for CRPS: Why Haven’t I Tried That?

Written by Kenneth R. Lofland, PhD

CRPS is a painful disorder that continues to challenge the medical community. The cause, course, treatment, and outcomes are highly variable and remain a source of vigorous debate among the brightest professionals specializing in chronic pain.

Biofeedback is a non-drug intervention that is used to treat patients with a variety of medical conditions. Taken simply, biofeedback can be defined by breaking down the word as “bio,” referring to the body, and “feedback,” receiving information about the body, that one would ordinarily not be aware of. A simple example of how biofeedback can work is the case of a patient with poor circulation to the extremities, often referred to as Raynaud’s disease. When this disorder is severe, coldness, pain, and poor healing results in the extremities due to decreased blood flow. It can increase the risk of frostbite and minor cuts to fingers or toes becoming infected, not healing properly, and even requiring amputation. Improving blood flow to the extremities through thermal biofeedback is one of the most effective treatments for this condition.

How does biofeedback work?
Although it sounds amazing that anyone can learn to alter blood flow, it is actually quite easy to learn. We all have a “flight or flight response.” If I am to give a presentation in front of 500 people, I will notice my hands get cold and clammy. When physical or psychological stress occurs, our bodies instantly secrete adrenaline, our breathing rate changes, our blood pressure increases, our heart rate increases, and our blood flows away from the periphery toward the core of our body, thus the cold, clammy hands. When the stressor is over, our bodies relax and these physiological responses reverse. Learning deep relaxation techniques, in combination with receiving feedback from machines measuring small changes in temperature, can advance this process and allow the blood vessels to dilate (open up) even more, allowing more blood to flow out to the periphery. So in the case of the Raynaud’s sufferer, learning deep relaxation techniques and biofeedback allows for increased blood flow to his or her hands. This improved circulation increases hand temperature to normal levels, decreases pain, and improves the body’s ability to heal any cuts or injuries naturally.

How can biofeedback help my CRPS?

Changes in blood flow often accompany CRPS. Learning deep relaxation techniques can be paired with a biofeedback device which measures skin temperature in order to help a CRPS sufferer learn to relax deeply, increase blood flow to a part of the body with a restriction in blood flow, increase the temperature of that part of the body, and decrease the pain.

What does the science say?
Biofeedback has not been subjected to the same level of scientific scrutiny as many medications. More, larger scale, and better controlled research studies are needed in this area, as is funding to support this type of research. Several studies have been done evaluating biofeedback for pain and found positive effects. For example, Grunert et al (1990), found that 20 patients with documented CRPS for 18 to 60 months and who failed to respond to a variety of treatments underwent thermal biofeedback with relaxation training as a part of counseling treatment. The results found that patients were able to significantly increase their blood flow and significantly decrease their pain levels (p<.0001). This pain reduction was maintained at 1-year follow-up assessment and 14 of the 20 patients had returned to work. The conclusion was that this intervention was effective to reduce pain in CRPS/RSD for the long term, even in patients who had failed prior treatments. Multiple other case studies exist but I reiterate that additional well-controlled treatment outcome studies are needed with larger sample sizes.

As a clinician I am very enthusiastic about the use of thermal biofeedback for the treatment of CRPS. Specific sources for this enthusiasm include:

1. The number of case reports indicating successful outcomes, even in cases where other treatments have not helped the CRPS patient (see above)

2. The common sense aspect that at least one hallmark symptom of CRPS, namely decreased blood flow and temperature in the affected area of the body, can be reversed with thermal biofeedback

3. My own clinical experiences, which have demonstrated positive results using thermal biofeedback with CRPS sufferers

4. It is one of the few treatments in medicine that has essentially no known negative side effects. There are very few other treatments available to chronic pain sufferers with no negative side effects.

How do I find a biofeedback provider?

First, some caution must be taken when identifying a biofeedback provider. While being a licensed clinical psychologist requires a specific doctoral degree and a license, and being a licensed physician requires a specific medical degree and a license, being a biofeedback therapist does not require a specific degree or license. Therefore, practitioners at much different levels of training and experience may be presenting themselves as biofeedback therapists. It is always best to ask a prospective provider to tell you about his or her training in general, specific training in biofeedback, and what conditions he or she specializes in when treating with biofeedback. Knowing the individual’s level of training, specialization, office practices, etc., can make you a more informed client.

Several states have biofeedback societies with web sites, such as the one in Illinois www.biofeedbacksocietyil.org. These sites generally have a list of practitioners that are members of the state biofeedback society. Membership in these organizations does not indicate any level of training or expertise. However, health care professionals with an interest in biofeedback can be found there.

Also, a national organization exists, the Biofeedback Certification Institute of America (BCIA) that certifies some individuals who chose to learn biofeedback through this particular organization. Being a member of this organization does indicate a certain basic level of biofeedback training, but it does not guarantee the degree to which a provider has specialized or the amount of experience a provider has had. Further, not being certified by this organization does not indicate a lack of training or experience of those who may have gotten trained via other routes, such as in graduate school.

1. Grunert, BK, Devine, CA, Sanger, JR, Matloub, HS, Green, D. (1990). Thermal self-regulation for pain control in reflex sympathetic dystrophy syndrome. Journal of Hand Surgery. 1990; July 15(4): 615-618.

Dr. Lofland is the Director of Pain Studies and the Director of Psychological Services at the Pain and Rehabilitation Clinic of Chicago. He is past President of the Biofeedback Society of Illinois and the current President of the Midwest Pain Society. He is both a dedicated clinician, treating individuals with pain syndromes such as CRPS, and an active scientist, researching the most effective treatments for many chronic pain syndromes. He can be reached for follow-up questions at [email protected].

The Handicap’s Appetite

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

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.

  1. 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?
  2. 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.
  3. 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?
  4. 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.
  5. 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.
  6. 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.
  7. 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.

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