February 5, 2014
RSD/CRPS is the most painful rated disorder on the McGill Pain Scale Index, a little gem of knowledge I am sure you never forget! Sometimes it is hard to remember the other people without our condition who also suffer a great deal. I find I become so drawn into my own pain that I often miss things happening around me. I may miss the first bloom of spring or maybe a child crying because they have lost their parent. No matter how “significant” we perceive the item we missed, it may be the world to someone else. This is why it is important to make sure we also take a minute to look at the world around us.
The admin team at CPRS/RSD Doesn’t Own Me is a family in itself, with our own trials and tribulations. There are times we share the information publicly and other times we feel it would pull away from the importance of support we provide for our members. Despite these choices, we feel that you the members need to know who we are. We want to share a part of our lives with you. Every person on the admin team survives with a debilitating chronic pain condition! Many of us survive the roller coaster we call RSD/CRPS. We have our highs and lows, and days when we must step back to take care of ourselves so that we can be here to take care of you.
Over the coming weeks, we will feature different people from the admin team and some small facts about us. We volunteer our time and spoons to you and want you to feel you know who we are and what we are here to do! Please watch the Facebook page starting today to see our admins highlighted in all of their glory sharing a piece of their soul reaching out to all of you! You are the reason we do this! Never forget how important you are to us all!
Happy Holiday wishes
I want to wish a Happy Holiday to the RSD family. I need to apologize to any of you who follow my Facebook posts and blogs which have become very irregular. You are probably aware that I have been busy with appointments with various specialists. Some days I have to check to make sure I have not turned into Raggedy Ann. My posts have been more sporadic as I get passed from specialist to specialist for more testing in an attempt for the doctors to give me a diagnosis they understand and can treat. At this point I am still unable to find a doctor specializing in RSD to treat me. I have to find new doctors to replace those that no longer want to treat me. A new round of tests begin when I find a new doctor. This last month I became so ill that my mother was not only taking care of me 24 hours a day, but she also had to provide transportation to the 40 hours a week of doctors appointments. I feel like she got a glimpse of what it is like to be in my shoes! I have now added guilt to my list of complaints, now I was robbing her of her independent life too! I remain with my caregivers (parents) as I do my best to successfully make it through this holiday season and have enjoyable memories to look back on. I have decided to use the next few weeks to let my body rest and recover from the constant bombardment of tests and treatments that have been hurled at my poor abused body in the past few weeks. It is my hope that during this holiday season my body will calm down and heal some of its wounds. With rest and recovery I will hopefully be able to communicate more effectively. I am planning to try to keep active; I do not want to lose the progress I have made but I need to remember to appropriately pace myself.
We come from many backgrounds and have many different ways we celebrate the holiday traditions that we partake in. We need to take a break to care for ourselves so we can enjoy these times and traditions we share with friends and family. Our body needs this quiet time to rest and recover. This can be difficult because family members that do not always know what RSD does to us and are unable to relate with us. You need to make yourself a priority! Make sure that the preparations you make will allow you to enjoy this holiday time with those you love. When you go visiting prepare an “emergency bag” that has your essentials. This survival kit may include medications, iPod, ear plugs, a specific blanket or whatever you need for you. If you are traveling with medication remember to use a lock on the zipper, especially if you are going to be visiting people with children and pets. Keep your drugs locked at all times, you do not want an accident to happen because a curious pet or child thought it was candy. If you are traveling make sure you pack at least 1 week of medication in your carry on. Lost medicines equals increased stress levels.
I am wishing you the strength you need to have the holiday that will fulfill your childhood dreams. I am praying that our army of angels will help lift you to your feet when your wings are having trouble to fly. May you and your families enjoy a safe and joyous Christmas and New Year.
In the 6 years I have been a part of the CRPS Universe I have watched it grow. When I started there was little to no support or accessible information about CRPS for the community.
I do not know who started it and I don’t think it is very important, but there was a revolution of Information.
The Great Awareness Boom.
I saw it the First time On Twitter. There was a small community that I became amazingly close to and it helped me get out of my rut, and also turned me on to the desperate need for support and information that patients could understand. People needed help and they needed someone to just understand.
Twitter was alive with people tweeting daily about the good, the bad, and the ugly of CRPS. Truth and Facts were shared and people started to grow a knowledge bank faster than ever.
I felt this need to have a place to go….almost a safe haven.
Even though I am based in the United States, International Awareness is something I have always strived for. This attracted me to befriend more than just US Patients but those outside the United States.
People like Mahndi from South Africa who is striving to spread awareness in his area. He works hard to bring awareness to a country that is still behind when it comes to Pain. Or Kylee from New Zealand who can’t help but make everyone she meets joyful. Whether it is her infectious smile, or her innate ability to never give up, she is an inspiration! Then there is Jona from Iceland who can always find a positive in everything that comes her way. She works to make not only her community a better place but the world outside her home borders.
These are real people who work tirelessly every day to spread awareness about CRPS/RSD. This is how the world will learn about what we are going through and they all Use Word of mouth. These people have real stories and little bit by little bit they are spreading it through their society.
When I am approached by people outside the United States who complain that no one knows about CRPS in their town, I point to people like the ones I noted before.
If there is a lack of education or awareness in your area, it is up to us to educate the area around us.
We cannot allow it just to go by the way side. There is an International Network of amazing ideas, support and awareness out there, if you only reach out. Don’t allow doubt to stop you from using these tools in order to grow your community. The more you search and grow the more people you will find that are looking for the same thing.
CRPS knows no race, creed, religion, social status, or any form of Alignment. We shouldn’t either.
If there is someone with CRPS you are a part of an International family that is amazing!
The hearts that belong in this group beat to the same drum. We all want this pain to end.
We don’t want anyone else to deal with this pain and we all work hard to teach the world in the hopes that future patients will get diagnosed all the sooner and get on the right treatments that cause them to go into remission.
This community has thousands of Mothers, Fathers, Sisters, and Brothers. You do not have to be alone, because once you become a part of this community and you walk in with open arms, you will never leave unhappy.
Ulterior motives or negativity can be left at the door, because I promise your true motives will be sniffed out and torn apart. This community wants nothing to do with it. This isn’t about personal pride but this is about a support that uplifts and heals and Communication that lends itself to the power of hope.
Join this community; Support and Uplift and I promise you that you will never be disappointed.
Join a support group today, international, national, in person, or online.
Long Live Support!
This Blog Post is a Part of an International Group of CRPS Patient Owned Blogs and Websites.
To Read More Blogs With this Topic Click Below:
Sylvie in Belgium: Blog SDRC International: des amis merveilleux et des patients experts / CRPS international blog post : wonderful friends and experts patients…http://sylvieghyselscrpsdrc.wordpress.com/2013/11/22/blog-sdrc-international-des-amis-merveilleux-et-des-patients-experts-crps-international-blog-post-wonderful-friends-and-experts-patients/
Elle in the UK: An informal International network of CRPS patients…http://elleandtheautognome.wordpress.com/2013/11/22/an-informal-international-network-of-crps-patients/
Isy in the USA: International group post: Love is portable… http://livinganyway.com/wp/2013/11/22/international-group-post-love-is-portable/
Brooklyn’s battle -A Daughter’s War with Anxiety and Depression
by Kimberly Loveday.
Poetry and Prose by Brooklyn Belair.
Reading this book changed my outlook on depression and anxiety. I found myself lost in the pages. It was as if the author was telling my story. From the bubbly personality of the poet and down to the very battle she now wages.
The author speaks of the stigma and taboo of depression and anxiety. Adults can’t seem to put a handle on these conditions so it is harder to fathom a child or a teenager going through it all. I cannot think of one life that hasn’t been touched by depressing or sad times. This disease called depression eats at our very core leaving us, in some ways, less than what we started with, and causing a battle to get help.
This book is full of heartfelt poetry written by the author’s daughter. It is truly inspiring! I had a difficult time believing that this amazing prose was written by a youngster. Her heart seems to flow straight into each word, telling an underlying story. A story that is so relatable to both young and old.
The author speaks of the tragic deaths of three teens, by their own hands. It was a complete wake up call to the seriousness of this condition. That so many children in such a small town all fought this monster. Then comes the kicker that we all can relate to hear at RSD/CRPS Doesn’t Own Me. Brooklyn has CRPS.
The book goes through life lessons and trials that Brooklyn and even the Author herself have been through, giving a great narrative lesson of overcoming and fighting “Inner Demons.”
This book could have been one of woe and complaint to the hand that authors had been dealt, but it truthfully isn’t that at all!! I have had this book for months now, and I am finding myself picking it up on my dark days, to remind me of the light. The stories from Brooklyn and Kimberly’s life are heartwarming and as well as healing. A real 21st century look down the proverbial microscope that is our own society.
I would like to thank the author for this amazing work and a special thank you to Brooklyn.
Thank you for never giving up, never giving in! Even though we walk through fire 24/7 365 days a year you continue to be an inspiration to thousands! I know, she is an inspiration to me.
I will leave you with a quote from a song that which is shared with in the book.
” This is not your legacy. This is not your destiny. Yesterday does not define you!”
– Matthew West “Family Tree”
You can buy “Brooklyn’s Battle: A Daughter’s war with Anxiety and Depression” at
www.brooklynsbattle.com Or Anywhere Books are sold.
September 16, 2013
Like you, I am also having issues in my quest for finding healthcare. I want to share some of my discoveries and “ahh haa” moments with you. I also want to share resources I have been given or found on my own. As my previous blog entries show, I do not want to control my pain with opioids on a daily basis. This is my right as a patient; I will not agree or disagree with what you feel is right for you. I also have a personal aversion to spinal cord stimulators or medication infusion pumps. For me this would not work since it is not worth the risks due to the potential for problems in the future which require future surgeries. I also am not a fan of the limitations that SCS would impose on me. At this point in my treatment I am not willing to consider these extreme treatments however, if nothing else works my decisions may change.
1. This being said, I am straying away from pain management doctors treating my RSD. In my experience pain management doctors only treat with opioids and implants, I want to treat the cause that leads to the pain instead of putting a bandaid on the problem. My recent encounters with Pain Management doctors thinking that I am desperate for them to be my doctor! I will not jump through their hoops; letting them put things in my body (medications or otherwise) as a contingency factor to be seen in their practice. I also will not sign a contract for narcotics that says “I will be prescribed narcotics as my treatment, I will not receive medications from other doctors and I have been explained alternative options, therapies or medications” before I even speak with the pain management doctor! Be careful what you sign, you can be accused of violating that contract and it can make receiving treatment from other physicians difficult. This will allow the doctor to have total control over you and your treatment. Recently I was given forms to be completed before I saw the doctor. In essence, I would have blindly signed a contract stating that it had been discussed and explained when I had no idea what the ramifications would entail. Do not allow any doctor, or any person for that matter, BULLY you into a decision regarding any treatment with which you are not comfortable. You are entitled to second, third, fourth and as many opinions as you feel you need!
2. Neurology, another avenue of treatment for RSD, approaches this disease from a different perspective. My neurologist does not seem to have any interest in my RSD and at my last appointment regarding my migraines acted as though RSD was not an issue he would bother with. This doctor is well known and well regarded in my area thus I will not seek treatment at this time from neurologists.
3. Per the new 2013 guidelines for the treatment of RSD Recreational Physical Therapy is recommended. Personally, I have had more success with this regimen in comparison to conventional physical therapy. Targeting your specific needs you may need to employ several therapists each specializing in areas that you enjoy and targeting your specific needs. I currently use horse therapy and due to progress will begin to add ballet for body mechanics and muscle strengthening without using weights. Since RSD has a negative response to stress I will be choosing activities that I enjoy; this will allow me to decrease stress during therapy thus decreasing pain and accomplishing more. My therapists understand my limitations and should be able to alter the “drills” to target my specific needs in working towards my goals. Ballet provides flexibility, joint range of motion and does not add additional weight on the joints while still promoting proper body mechanics to strengthen the muscles through your entire body. Anyone who decreases activity looses muscle in the whole body not just the affected area. Think outside the box! My insurance company is working with me on finding the best plan for me.
4. Chiropractors who specialize in the nerve system can be very helpful! Be careful and do your research. I have gotten a lot of relief from the right one!
5. Recently, I have begun to narrow my search to doctors who concentrate on the Autonomic Nerve System and/or its disfunction. This special interest can fall within a myriad of specialties. The autonomic nerve system is made up of both the sympathetic and the parasympathetic nerve systems. These are supposed to compliment each other, when they are out of balance it allows one to “take over” and be more prominent. Regardless if your parasympathetic system is weak or the sympathetic system is too strong, both of these circumstances can lead to the overactivity of the sympathetic system resulting in RSD, CRPS or whatever name you call this monster. My latest search resulted in an appointment with a cardiologist who was needed to look at some cardiac test results. Looking at his profile I noticed that his site stated that he specialized in autonomic nervous system disfunction. This epiphany made me realize it could be a cardiologist, endocrinologist, hematologist…as long as they were interested in studying the Autonomic Nervous System. Hopefully it is a hit and I will be able to tell you all how to find a doctor to treat the cause and not the symptoms of RSD!
6. The final note for this post is about assistance. Many of us are struggling with finances to get treatment or medications. Jim Broatch from RSDSA provided me with a list of free or decreased/sliding scale payment.
Also look at the maker of your medications. For example pfizer and lily are companies that I know have programs for those who qualify where they provide all medications from their brand for free. I also always check online for discount cards and ask your doctor when you are at the appointment if they have any discount cards for your specific prescription. Specific meds that I can think of that have these generally are the brand name like gralise or the new extended release of topamax (ones that you have no generic option). Don’t be afraid or ashamed to ask for help or ask your doctor for resources. The worst case scenario is that he or she says they don’t know of any!
There are options, you just have to learn to think outside the box!
Much of the first 6 months following my fracture and diagnosis are a blur. At times, I feel like I was and still am sitting watching the frames of a movie. I think a small subconscious part of me knew early on (before the official diagnosis) that something was wrong with my body’s “pain system.” I had been reassured by my doctor that my pain level should be considered “normal” and not to be concerned. However, quoting Huck on the TV show Scandal, “Pain is the only human process that is completely defined by the person experiencing it.” How could this doctor know how I felt? I never had worn a cast or had the experience of having it cut off. How was I supposed to know that the severe pain I felt when they cut the cast off every 5-6 days was abnormal. The office staff thought I was being over dramatic with a low pain tolerance. This misinterpretation could not have been further from the truth! The amount of medication I needed to comfortably make the car ride to my doctor appointment in addition to walking to the office location included multiple heavy narcotics, anti-nausea, anti-anxiety mediation and Advil. This medication cocktail enabled me to be chauffeured to the doctor, see the doctor, and return straight home without becoming sick with the pain I could still feel.
Memories from that first 6 months replay in my mind so vividly that they bring me to tears. The look I saw in my parents eyes continues to haunt me as they tried to help me recover. I felt their frustration at seeing me unable to cope with the pain; they were helpless and unsure of how to comfort me. The fact that I had no idea why I was still in pain lead to my own feelings of helplessness. Any parent can relate! It does not matter if your baby is 2 months old, 10 years old, 30 years old or 50 years old; parents are hardwired to protect their children and fix their problems. By definition the word frustrate means the act of making worthless; to defeat or nullify; to prevent from accomplishing a purpose: Therefore, frustration accurately describes everything we felt. My pain and inability to cope frustrated all of us. We entered into a vicious cycle where I needed someone to support me both emotionally and physically but my parents were frustrated and needed a break from me. I perceived their displayed frustration as my fault. I felt my pain ultimately hurt them which lead to my feelings of guilt.Memories from that first 6 months replay in my mind so vividly that they bring me to tears. The look I saw in my parents eyes continues to haunt me as they tried to help me recover. I felt their frustration at seeing me unable to cope with the pain; they were helpless and unsure of how to comfort me. The fact that I had no idea why I was still in pain lead to my own feelings of helplessness. Any parent can relate! It does not matter if your baby is 2 months old, 10 years old, 30 years old or 50 years old; parents are hardwired to protect their children and fix their problems. By definition the word frustrate means the act of making worthless; to defeat or nullify; to prevent from accomplishing a purpose: Therefore, frustration accurately describes everything we felt. My pain and inability to cope frustrated all of us. We entered into a vicious cycle where I needed someone to support me both emotionally and physically but my parents were frustrated and needed a break from me. I perceived their displayed frustration as my fault. I felt my pain ultimately hurt them which lead to my feelings of guilt.
Shortly after my diagnosis my mother and I sat in the doctor’s office struggling to understand this monster [RSD] and asking the doctor about the pain. It was explained to us that despite the physical healing of the broken bone, the nerves were still sending and receiving signals saying “ouch, I am injured.” My mother’s response to that fact lead her to conclude that since there was no longer an injury the pain should not exist therefore it would be best to ignore it and push through it until it quit hurting. I found it unbelievable that my mother suggested that I push through this pain thus ignoring my body’s warning system. I remember becoming flustered (I am not sure if it showed outwardly) and started to block out the conversation. The doctor quickly pulled me back to reality when he stated that this pain is VERY REAL! It hurts like any other “real” pain. The body is malfunctioning and creating pain signals without a correlating injury. The messages sent by the nerves cause the body to respond with pain, decreased circulation, color changes, bone thinning, muscle loss, changes to hair and nail growth and changes to skin. In essence my nervous system could be compared to a light switch. With an injury the light switch turns on and the body says ouch. When the injury heals a normal body turns the light switch off making it ready to alert the body to the next injury. After my injury healed my light switch malfunctioned and became stuck in the on position, constantly firing “ouch” signals that the body continues to respond to. The doctor went on to explain that you cannot ignore the pain or push through it, the saying “no pain, no gain” no longer applies to you. I can’t speak for my mom, but after that conversation, her demeanor changed. I am not sure exactly what he said that hit home for her but I felt like he was validating the fact that my pain was real and it now had a diagnosis. I did not need convincing that my pain was real!
Most importantly, the last thing I want to leave the readers with is my doctor’s insistence on maintaining and improving my activity level. I was told that I may never walk like I did before the broken leg. He stressed the importance of the phenomena “if you don’t use it, you lose it.” Your muscles and range of motion needs activity to be maintained otherwise you will lose the muscle mass and flexibility necessary to support an operating limb. He also explained that once you lose any of the aforementioned, it takes 10 times the work and discomfort to regain it again. The doctor further stressed the need to listen to my body. I needed to expect some discomfort with rehabilitation therefore I needed to envision a brick wall. That brick wall would vary with daily stressors and represented my limit for activity that day. I needed to learn to gage how close the wall was and push my activity level to get close to touching that wall without crashing into it. Each time I got close and touched the wall without going through it, I made progress in my rehabilitation. I came to find that if I miscalculated and crashed through the wall I would essentially undo days of progress I had already made. To prevent this from happening the doctor told me it was imperative that I learn to tell the difference between RSD pain and rehabilitation pain. When I felt the RSD pain, I was to stop! Sometimes I would knock down that brick wall without realizing it, my only indication showing hours after surpassing my limits. My indication became a lack of or interrupted sleep due to pain. These episodes have the potential to last for days. It is important to state that during these episodes “Backing off” does not mean complete inactivity it merely means that you allow additional rest time for your body to recover while doing some kind of activity. For me this meant that I shifted from pool exercises to just writing the alphabet in the air with my foot and allowing nap time. My first attempt at exercise and movement began with 3 steps. My wall had been breached. My second attempt came days later with my mom persuading me to get into the pool. I started in neck deep water just moving my foot underwater. I was able to tolerate the pool therapy and progressed from no weight bearing movement in the pool, just moving the leg, to walking in the shallow end. My time spent in the pool went from 15 min a day to 45min a day, what an improvement. I learned how to get in the pool with minimal help and eventually was able to forgo my crutches for short “walks” inside the house from the couch to the dinner table. There were many times I broke that wall into pieces, many sleepless nights and increased pain. Despite the trials, my crutches rest in a corner. If I need them one day, they are on stand by! I don’t anticipate ever picking them back up, but I still have my days when, “oops, I over did it and need to take it easy today.”
Some people may need a different more delicate visualization than my “brick wall.” You may want to picture yourself inside a beautifully colored bubble much like the one Glinda, the good witch from Oz travels in. Just like the wall this protective bubble is not indestructible. If you are too aggressive with your physical therapy, you will pop your bubble! When this happens, it will take time to regenerate it as you recover from your over exertion. No matter which way you visualize your limits, it is important to recognize that with RSD we must listen to our body and challenge it in order to survive! The less we challenge our limits, the more function we will lose. Don’t give up! Don’t settle! Pick an activity that is important to you and push your way to your limit. If you exceed that limit you will know that at least the pain was not in vain because you enjoyed the activity. In the event that you do end up with pain and an “oops, I did too much,” at least you accomplished something that you enjoyed.
April 20, 2013
Reflecting on the recent events around me, I have been close to tears on numerous occasions. We all know life throws us curve balls. With that approaching pitch we are faced with a few options:
These curve balls may take the form of a disagreement between friends/family, losing a job/insurance, the tragedy on 9/11, a diagnosis of a chronic illness, the tragedy and heroism at the Boston marathon and even the explosion in a small town like West, TX. In all of these situations, the key to overcoming each event is united support! The emotional response invoked stems from this overwhelming support of the communities that are involved.
After 9/11, the country came together as one united front to support ALL who were both directly and indirectly affected. At the Boston Red Sox and Yankees baseball game in 2011, Boston honored New York by singing “New York, New York” at the game. More recently, the New York Yankees returned the gesture showing support after the Boston Marathon by singing Red Sox song “Sweet Caroline.” Breaking down barriers between fans of the individual teams is a gesture saying “we stand united and are behind you in this difficult time.” Again, in the world of sports, Americans showed their united support after the situation in Boston. Before the Boston hockey game, during the singing of the National Anthem, the singer lowered the microphone and the crowd sang out in full voices. Seeing video of that National Anthem touches my heart seeing the power in numbers and united support.
If anyone is a college football fan, at the Nebraska Red and White Scrimmage, the pediatric cancer patient Jack Hoffman was given the football and ran it for a touchdown. I would be surprised if anyone missed the touchdown run as it made both local national news! From the day Husker Rex Burkhead met Jack, the Nebraska Cornhusker player treated Jack as if it was his little brother. The bond the team developed with this young boy echoed through out the Nebraska community, spreading across America and even around the world. Team Jack has shirts supporting the Huskers and Team Jack sprinkled around the world as evidenced by the many messages and pictures on his Facebook page. It is breathtaking seeing how a community united can make a difference, not only in the Hoffman’s life but also the lives of people around the world who have been inspired by the strength of this united front.
Finally, seeing a community like West, TX come together to support each other is touching. The firemen in this community are volunteer firemen and people who were evacuated returned after taking their children to safety in order to help those still in the danger zone. This community is so close that they don’t even think twice about risking their own life to save their neighbor. Having been to West on many occasions, I can say without a doubt that the people here are some of the most polite and caring people I have had contact with. Fire Departments from surrounding communities responded with other Emergency Personnel to assist. One more example that when we unite in our battle, we are stronger!
I hope that the RSD/CRPS community can reflect on the events of the past to see that if we look past our differences, we can overcome even the worst tragedies. My wish is that we, the RSD/CRPS community, don’t need to have a tragic event to pull us all together as a united front. We can accomplish anything if we work together.
Unity within the RSD community
Just like the previous blog post, this is about unity. While perusing the internet support groups, I become increasingly aware of the dissonance between members. I see posts by members that resemble a childhood playground battle! “My pain is worse than YOUR pain!” Or like the boys in high school sizing each other up in the locker room. “I could take him any day!”
“Coming together is a beginning.
Keeping together is progress.
Working together is success.”
“Alone we can do so little;
together we can do so much.”
In my humble opinion, WHO CARES?!?!?!?!? A pain scale is subjective information. When medical staff holds out that card to rate your pain, they ask where YOU rate your pain. Explaining 0 is no pain at all while 10 is the most intolerable pain imaginable. We (the patients) rate our pain based on our previous experiences with pain. I can tell you with 100% certainty that before RSD, my definition of an 8 is probably what I consider a 2 now. It is also impossible to compare my pain to your pain or anyone else’s pain. The pain scale is subjective. According to the dictionary the definition of subjective is 1. existing in the mind; belonging to the thinking subject rather than to the object of thought. Let’s make this clear; the pain is a real and the scale on which we rate that pain is what is subjective. Therefore, the ratings are based on the memories of the person rating it. Regardless, if my pain rating is 10 your rating may give that same level of pain a 5 on your scale. For a person to rate their pain a 10 means that they are coping the same as anyone else rating their pain at 10 (in each instance these people feel that it is their worst imaginable pain). Most importantly, standing together to help each other cope with pain remains our goal in the RSD community! Stand by each other in unity!
Additionally, people post complaints about not getting support from other RSDers. I see harsh words exchanged complaining that some people are not carrying their own weight! As we all know, RSD affects the body’s ability to cope. I find it hard to understand how a fellow RSDer can accuse others of not “pulling their weight” or “moaning and whining and not being willing to do anything about it.” How can someone who experiences the extreme fatigue and pain throw accusations about others with no regard for what is happening in their life. Malicious words fly without the author even trying to put themselves in or even understand the situation of the fellow support group member, forgetting that this person too is afflicted with this monster! The support groups are there for that reason, SUPPORT. This malicious behavior tears members of different groups apart. We all have an illness, experience pain and isolation and try to cope with new limitations. We are the support and the ones who understand and commiserate. There are no excuses that condone treating your fellow RSDer badly. I will not give any more attention to these 2 year old temper tantrums!
The entire RSD community needs UNITY. There should be no concern of who gets credit. There should be no preference of where we start or who to start with. The united community needs to begin educating. Educate ANYONE who is willing to listen. Don’t waste your time on people who are ignorant and not willing to be open to the possibility of learning something new. Utilize your energy educating people both in the medical field as well as people you meet in everyday life. Surprisingly, this key person will take the information you give to inform masses of people you never imagined possible. If we selflessly educate for the right reasons, we will succeed! Let’s put away ulterior motives; educate everyone, we cannot exclude certain populations because that takes away from our united front. This means we need to educate about men, women, adults, children, every ethnicity, military and non-military. In the end, the information will get out to the people. WHY SHOULD ANYONE SUFFER! WOULD YOU REALLY WISH THE PAIN TO PERSIST IN ANYONE?!?!?
We all have our individual demons, trials and weaknesses. However, we also each have a strength! RSDers in unitt can use our strengths to further the cause. We will keep our individuality but still unite as one body! It is possible! Let’s show the world!
The Following Is A Q&A with Norman J. Black, the Clinic Manager of SPERO Pain Relief Therapy of Illinois & Gracie Gean, a RSD/CRPS Angel from Illinois.
Norman, what made you start administering Calmare and what kind of training did you receive?
First Christa, thank You for reaching out to Gracie and Me. Those suffering from CRPS/RSD are fortunate to have advocates like you, who offer hope and guidance in dealing with this life altering ailment.
My interest in Calmare was a bit unconventional. My formal training is in accounting and finance where I’ve spent the last 30+ years running businesses in the commodity futures industry in downtown Chicago. My older brother Len approached me about 4 years ago to make introductions for him to my friends in Chicago who were physicians. He had become a sales contractor for Competitive Technologies (the company which owns the intellectual property and marketing rights to Calmare) and was trying to sell this new medical device that “non-invasively relieves chronic neuropathic pain”. After reading the literature about how the device worked and what types of pain it could relieve, I decided to do some of my own research to determine if Calmare could be commercially viable. That’s where my business background came in handy. One of my first priorities was to contact Dr. Robert Chalmers of SPERO Pain Relief Therapy in St. George, Utah. I flew to his clinic, met with him for a few hours and subsequently we worked out an arrangement where I could use the SPERO name and consult with him on our patients cases when needed. For Dr. Chalmers , having a SPERO clinic in Chicago was a way for the Utah clinic to gain more visibility.
To make a long story short, I finally opened Spero Pain Relief Therapy of Illinois, PC in August of 2012. We have a Medical Director, Mitchell Weisberg MD, MP who is an Internist with a certification in Psycho-pharmacology. Dr. Weisberg’s psychiatric background is an important benefit for our patients, especially those with CRPS. Almost all of our patients are taking some form of anti-depressant and it’s important to understand the effects these medications have on their emotional and physiological well-being.
Our clinic also employs three technicians who have been trained by Competitive Technologies in the use of the Calmare medical device. We should be receiving our Calmare Certification shortly. All of our technicians are licensed in the state of Illinois in their respective medical specialties. Although I also participated in the training, my purpose was to understand the treatment as best possible so I could thoroughly explain to prospective patients what they could expect during a Calmare treatment. I’m sure Gracie will tell you that she’d much rather have our technicians treat her than me!
Gracie, How did you find out about Calmare? Why did you feel it was right for you? Also, How did you find Norman?
I am a 39 year old mother of two beautiful teenage girls. I took up kickboxing because it is a wonderful full-body sport and a great stress reliever!
I injured both of my wrists kickboxing at the gym. I had successful surgeries on both of my wrists, but a less than successful pre-surgical nerve block in my left brachial plexus. This triggered the RSD. I have been battling the beast for the last three years. I have tried aggressive OT, Stellate Ganglion Blocks, nerve stabilizing drugs, anti-depressant drugs (used for nerve pain), and a mountain of narcotics. Nothing cut the pain. I eventually just threw the drugs away and decided to go at it on my own. In desperation, I turned to the internet for help. I actually discovered Calmare Therapy on THIS site, RSD/CRPS Doesn’t Own Me! This site featured an interview with Dr. Rob Chalmers of SPERO Therapy, where he discussed his views on Calmare Therapy. I was intrigued to learn that there was a drug free treatment available! After doing my own research on this treatment, I just knew that I had to try it. There were no negative side effects that I could see. I discovered that there was a facility in Chicago, which is only a 3 hour drive from my home. I met Norman when I called the clinic to learn more, and we quickly became friends.
What made you, Norman, want to help those with Chronic Pain diseases like RSD/CRPS?
As I’ve mentioned in the first question, my interest in treating chronic pain was motivated by the business opportunities Calmare offered. Having no previous medical background (other than my mother and first wife being RN’s,) I now understand and have experienced the altruistic side of medicine. You cannot put a price on the type of hug I received from Gracie when we drastically reduced her pain from RSD during her initial treatment with Calmare. When you see mothers’ shed tears of joy instead of tears of sadness because their teenage daughter is finally getting some relief, especially since I have two children of my own, you appreciate the fact that you’re making a difference in someone’s quality of life. Yes, we have bills and the device is not inexpensive, but at some point I plan on treating patients that don’t have insurance and can’t afford the treatment.
What did getting Calmare mean to you as a RSD/CRPS patient, Gracie?
Calmare Therapy has changed my life! Before the treatments, my pain was unmanageable. While I am actually connected to the machine, I have absolutely NO pain. After the treatment ends, I have experienced up to 24 hours pain free. Beyond that, I usually stay at a pain level of 3-4 for periods of about 4-5 weeks. .I make sure to get plenty of rest, soak my RSD arm in hot water with Epsom salts, and get Calmare boosters if needed. I do not take any medications for pain. This all allows me to have a relatively normal life, depending on the weather patterns and the amount of stress in my personal life of course.
Is there a type of patient that responds best to Calmare and why did you believe Gracie was perfect to receive this treatment?
What is Calmare’s success rating?
Patients who respond best to Calmare are those who have been diagnosed with chronic neuropathic pain. In addition, patients who have neuropathic pain that is localized, ie., limited to one or two areas of their body generally respond better than patients where the pain is widespread. The electrodes are placed on healthy nerve tissue that surrounds the area of pain. If the pain is widespread, then it’s often harder to find skin areas where we can place the electrodes. With Calmare we’re not trying to block or inhibit the pain, we’re trying to change the brain’s perception of what’s happening in the periphery by introducing non-pain stimuli. If the avenue by which we’re sending the stimuli is damaged or suppressed, then we can’t be assured that the message is getting through. That’s the primary reason we need healthy nerve tissue. Additionally, patients who are taking neuroleptic medications such as Lyrica or Neurontin may not have the best response to Calmare. As I noted above, if the nerve pathways are suppressed, then it’s more difficult for the non-pain message to get to the central nervous system and subsequently to the brain. Ideally patients should try to wean themselves off these medications (under the supervision of the prescribing physician) before undergoing Calmare treatments.
Gracie was an excellent candidate for several reasons. First, she was not taking any medications for her pain that would inhibit the device. And second, her pain was restricted to her wrist and hand so electrode placement was straight forward.
Answering any questions that address the “success rating” of Calmare is difficult. How do we measure success? If in some way we ease the pain from what was intolerable to something that’s tolerable, well that’s successful. If we increase the quality of life in some way, then that’s a success. If a patient is pain free for a day, a week, a month, then for them the treatment was a success. What I will say is that over 90% of our patients have had enough reduction in pain during their initial treatment for them to want to continue with the initial 10 treatment protocol. I would say that’s an impressive success rating.
What were your fears if any about the procedure, Gracie? How did it, on the anxiety scale, compare to other treatments that you have done. Did you have any side effects mentally or physically?
My only fear about this procedure was that it may not benefit me. I already knew that it would not negatively affect me because I had done my research ahead of time. I had no anxiety about it at all. I had no negative physical side effects from the Calmare, other than a little redness where the electrodes were stuck onto my skin. I have extremely sensitive skin, so this was to be expected. There were no blisters or anything; just redness that went away within minutes. I must admit that it was a bit of a mental challenge during my first week of treatment. After being subjected to intense pain for such a long period of time, having a brief reprieve from that pain seemed like a cruel joke. The rebound pain almost felt more intense. It left me craving more and more Calmare Therapy sessions until the pain leveled out during my second week of treatment. One thing I cannot stress enough about Calmare Therapy is that you really need to give it time to work. The more treatments that you have, the better results you will experience!
I had PLENTY of anxiety prior to the Stellate Ganglion Block! How was I supposed to mentally prepare myself to have a huge needle stuck through the front of my neck, into my spine, while I am not sedated and being told not to breathe? That is not an easy task!
As of right now Calmare isn’t approved by many insurance companies.
How did you help in this aspect to make this treatment more available to the general population?
We’ve actually received favorable responses from quite a few of the private insurers. So far we’ve received reimbursement from United Healthcare (including one of their regionally owned affiliates), Farmer’s Bureau Insurance of Michigan, and Blue Cross Blue Shield of Minnesota. I’m also aware of other clinics using Calmare that have received private insurance reimbursement. In cases where the coverage has been denied we will assist our patients in appealing the claim. It’s important for the patient to be diligent in their appeal. The more cases the insurance companies are presented with, the greater the likelihood that Calmare will receive insurance coverage. The success of clinical trials presently complete and in progress should also make a big difference in whether private insurance will pay for Calmare.
In Gracie’s case her insurance carrier not only covered the “out of network” expense of the treatment, but Gracie applied for a GAP exception (for procedures that are not available within a certain mileage range) which was approved and resulted in our receiving 100% of what was billed. This established a strong precedent for future patients with the same carrier.
I’ve also spoken with Carl O’Connell the new CEO of Competitive Technologies (CTTC)) and he mentioned that getting in front of the larger private insurance companies is a top priority. CTTC is working on aggregating all the positive insurance responses received by Calmare clinics to strengthen the case for reimbursement.
How did your insurance cover Calmare, expand upon what Norman mentioned? What advice can you give to others trying to fight their insurance and/or workman’s comp?
I have private insurance through my employer. I am fortunate that this is actually a covered procedure. SPERO Pain Relief Therapy was out of my network, so my insurance company only wanted to pay 80% of the charges. I filed a Gap Exception to prove that no one within my network could provide this service, and the Gap Exception was approved. My insurance company now pays 100% of the charges for all of my treatments. I am the first person in the US to have a private insurance company pay 100% for this treatment. Since that time, Renee Hanson, the Clinic Administrator at SPERO, has been able to reference my case and has gotten several other cases covered also. I have taken very detailed notes about my journey and successes through Calmare Therapy, and I have provided those notes to several friends that are fighting Workman’s Comp. Calmare Therapy is less invasive and much cheaper than many alternatives. Hopefully we can continue to share these success stories and maybe Workman’s Comp and the insurance companies will take notice!
What are the long term results of Calmare? Does it need to be redone?
The long term results of Calmare are varied. You have to evaluate each patient differently, especially those with CRPS. In cases where the pain has not started to spread our expectations are for longer periods of relief. We’ve had patients experience relief from several weeks to 3 to 6 months. Our goal is to zero out the pain for as long as possible. Short of that, we’ll treat a patient until their pain relief has plateaued. With CRPS we’re finding that it takes a greater number of treatments to achieve the same amount of relief as those patients with other neuropathies. What’s been promising is that most CRPS patients get enough relief to impact their quality of life. It often means being able to continue with physical therapy that had to be discontinued because of elevated pain levels. Increased range of motion has also been noticed.
If the pain starts to elevate after the initial treatment protocol, we encourage the patient to come in for “booster” treatments. This usually consists of 2 to 4 consecutive daily treatments or enough treatments to get the pain to plateau again.
How many treatments have you done? How are you currently feeling physically? Mentally? Have these treatments affected your family life?
I completed three separate 10 day rounds of treatments. Now I just go in for boosters as needed. The boosters are 3 or 4 treatments. It is important to note that Calmare Therapy is not a cure. We all know that RSD is incurable. It is a treatment. It attempts to treat the symptoms of an incurable disease for unknown periods of time. Just as RSD manifests itself differently in everyone, it also reacts to the treatment differently in everyone. It is impossible to say how long it will last. Right now I feel really good, mentally and physically! These treatments have helped my girls also. Watching their mother in constant pain takes a toll on them too. They may not admit it, but I can see it in their beautiful faces. Seeing mom happier makes them happier.
Thank You Norman & Gracie for your time and courage helping those around the world learn more about Calmare and how it could possibly help those with RSD/CRPS!
If you would like to learn more about Calmare.
Please Read our Interview with Dr. Robert Chalmers, who is affiliated with this Clinic.
Calmare Treatments Questions Answered Straight From the Doctor’s Mouth
To Learn More about SPERO Pain Relief Therapy of Illinois:
More Information about Competitive Technologies: