A Pittsburg-based drug development company has received U.S. Food and Drug Administration (FDA) approval for phase 3 clinical trials of a product to treat severe, persistent pain. The medication, T-121, is being developed by Thar Pharmaceuticals and is expected to enter the market by 2019. T-121 is an oral version of Novartis’ intravenous-only zoledronic acid, which is sold under the brand name Zometra. T-121 will be intended for patients suffering from complex regional pain syndrome/reflex sympathetic dystrophy (CRPS/RSD), a chronic pain condition often brought on by some sort of trauma. About 70,000 people across the U.S. experience pain from CRPS/RSD, which can become chronic over time and become a disabling condition.
Treatments for CRPS/RSD.
There are many different types of treatments for CRPS and new ones come about relatively frequently, although what works for one does not usually work for another, making treating the condition all the more difficult. Generally, the earlier CRPS is caught and treated correctly, the greater the chance that the condition will respond to medical treatment. Although most doctors agree that a combination of diet, exercise, physical therapy, and medication is the best treatment of CRPS for most patients, exactly what that combination may be and which medications work best is a highly debated issue among pain management doctors. There are no FDA-approved treatments for the pain of CRPS/RSD. Thar Pharmaceuticals developed the drug through the FDA’s orphan disease program, which allows for expedited review, tax credits and other competitive advantages for medications that help fewer than 200,000 people.
CRPS/RSD affects fewer than 200,000 patients in the U.S. each year, according to the National Organization for Rare Disorders.
I love it when people say, ‘you look so young’ and ‘I thought you were in your late twenties’. If a few people say it, it may just be a compliment, but for me, many say it. I believe age is an option. Yes, we gain a physical number on paper each year but when you look at your age, most think ‘how do I feel’. Age in this instance is a state of mind. I think people see me as younger than I am because I do look young on the outside, but I also have a playful personality. I know what I have lost, they don’t. Most in my life don’t know who I was, what I was capable of, how athletic I was. They know the person they see in front of them. I don’t drink, smoke or do drugs (that are not prescribed to me). So when people say, become a better you, what does that mean for those of us who are already trying to be the best we can be? For me it meant I wish someone would have told me about preparing for things that we may face or someone we love may face (chronic pain, disease, financial burdens, how to navigate the health system and life in general for that matter). I wish that I didn’t take life for granted when I was healthy. I had many experiences, most were great. I took them for granted until developing Reflex Sympathetic Dystrophy which stopped me in my tracks. I met my primary care provider (PCP) in 2005. When we met I was in a wheelchair, bathed about once every 7-10 days, and had dystonia in my right hand, arm and foot. I had cut off most of my hair to make it easier on me. I am sure I looked a mess. He never commented to me on how I looked. He worked to get me feeling better he became the first on my ‘team’. He didn’t know what I used to look like. He was shocked to find out that I was a former model, pageant queen, cheerleader, and athlete. After receiving infusion therapy in 2009, I went to see him. I went from wheelchair to walking with him as my main health provider. I changed my hair, I changed my clothes. Two things I could have done before feeling better, but I didn’t put the effort in on most days. When he saw the new me, he asked my husband how it feels to be with a woman who is getting younger. It’s not that I was getting younger, it is my state of mind improved. Our beliefs and behaviors must shift when we are living with a chronic pain disease, no matter what stage we are in. This shift determines how we feel about our life and health. Often times I would psych myself out. I would say to myself, I can’t do this, I can’t do that. I learned through trial and error what my boundaries are. I kept a journal to learn about myself and I found that my bounds were far past where I thought in my mind. I found that I needed to celebrate each moment, each day. When things got tough and I had to spend days/weeks/months in bed I didn’t need to get down on myself or put stress on myself for what I wasn’t doing. I kept a journal and a made a bucket list during those times. As time has passed, I found ways to accomplish those tasks and come up with new ones. I found that completing tasks is easier, quicker, and more accessible when I live through motivation of starting where I want to end up. Putting it in writing and organizing a plan of action (that is adjustable) is how I began to accomplish my goals. I found personal incentive by manifesting something on the outside first. I changed my hair. It was a simple enough start. It led me to buying a few new outfits. I created a goal of doing more life experiences instead of gathering stuff to sit around me. I started with 4 outfits that are my ‘experience outfits’, and then came up with activities where I could use the outfits. Starting small on the outside helps to manifest how I feel on inside. Keeping track of where I have been and where I want to be showed me that I am of worth. Eventually my mind and insides caught up to my outward feeling. Was I perfect? No. Was I out of chronic pain? No. But, I did learn to count my miracles. An experience can’t be taken away from you unless you let it go. Let go of the negative and focus on the positive; in your mind, heart and outside. Keep working on yourself and start with a few goals. Give yourself ‘what to do’s’ instead of just opposing all of the positive things you could have in life. Even in pain you can find ways to get the end of each goal. To change you, YOU have to practice. Am I saying you can just change your pain away? No way, not at all. I am saying you have the ability in you to change how you face your challenges. Find ways to recognize, understand, and consolidate challenges to see the goals you have set come to be. Don’t worry about timelines. If it takes a healthy person 4 years to graduate college, don’t feel bad if it takes you ten. It is okay. Remember, a win is a win. You don’t lose until you give up. Strive to understand the overall gist of your decisions and don’t let setbacks, others’ negativity, others’ guilt beat out your decision. You have the right to be the best YOU possible; star
One of our original RSDS Advocates, Mary LaBree, passed away on October 15, 2015 due to complications from Reflex Sympathetic Dystrophy (RSD). Mary exemplified commitment to the RSD community for over 3 decades. As the Director of the New England RSDS Coalition since 1990, Mary sought to educate and bring awareness to the public and private sectors for the disease that was virtually unheard of back then. Originally from Leicester, Massachusetts, she was formally educated at Worcester State University in Worcester, Massachusetts.
Mary secured the JULY Proclamation for RSDS To urge all of the citizens of the Commonwealth to take cognizance of this event and participate fittingly in its observance. Given at the Executive Chamber in Boston, the twenty-fourth of June in the year two thousand and eleven, and of the Independence of the United States of America, the two hundred and thirty forth.” Massachusetts Bill # 5938
She worked both locally in Massachusetts and Nationally.
Mary formed and lead seminars, attended others, developed awareness events, distributed information and educational materials. She spoke with patients, caregivers, physicians, hospitals, insurance companies, fellow educators, universities, other peer groups, and those with an interest to learn about Reflex Sympathetic Dystrophy. She was involved with grants, research and fundraising.
When Mary LaBree began advocating for RSD in the 1980’s the term Complex Regional Pain Syndrome hadn’t been created. While other names had been used previously to describe Reflex Sympathetic Dystrophy (Syndrome) it was most often referred to as RSDS.
In 2012, she reached out to me and a friendship formed. We shared phone calls, messages and correspondence by snail mail. Mary sent me a copy of the photo of she and other’s of the original signing of her proclamation and a copy of the verbiage used to secure her proclamations. I’m privileged to know what Mary looks like. For now, I’ll not share those, nor have I ever. She shared with me 30+ years of everything. How she started, how she educated, how other RSD organizations began, her children, grandchildren, colleagues, the strength it takes to endure; not just in living with pain, but being a part of it.
If you pray, why worry… If you worry, why pray?
I had plans to meet her in person twice. The first time she had to return home early. I was supposed to meet her again toward the end of October or into mid-November. I had just spoken to her less than a week before her passing.
I was in the hospital yesterday, I had an accident with my wheelchair when I tried to back it up ( standing in front of it. ) (Stupid me )when I pushed the button to back it up.. I pushed it the wrong way..And ran over my LEDs from the ankles to the knees. I was really blessed when the ER Dr. Asked what other problems did I have, & when I explained CRPS He said oh Chronic Regional Pain Syndrome , I said yes. He treated me with kindness & care. I’m going to send him a thank you card. He was really kind. You don’t always find a kind caring Dr..pls pray for me to recover. I have a lot of CRPS work to do. I will be leaving for CA in a few weeks. Ty.M
I’m sorry I had a mistake that I didn’t want to have a group pls forgive me, as I pressed the wrong thing, & didn’t realize it until someone told me.
The next message on Oct 12, I missed due to being away and my IM being flooded and then she was gone. I was on the road to and from the Stanford Transplant Clinic for our daughter on the 15th and in the Emergency Department on the 16th due to my cervical spine. Trying to save the puppies life all in between.
The last message was in reference to an accidental group IM.
I had been wondering if she would want to make the plans to meet at the NERVEmber, West Coast Pain Forum for Power of Pain Foundation on November 14th. All I knew for certain is she planned to be here in Northern California on the 23rd of October and would call me.
Permission granted and sent from the Power of Pain Foundation to share in Mary’s memory. Melanie McDowell Awareness and Advocacy Award Nomination 2015
I wish she would have received more nominations, but mine was the only one for her. She was most deserving.
We never know for certain where our conversations go even when we chit-chat on the phone or when we think they are in confidence. I don’t know what Mary ever spoke of me to others, but I know that she must have believed in me enough with what she did share with me to know I would keep it to me and if she didn’t know for sure when she told me she knew as time went on because I’ve never told it.
She asked me sometime in 2013 to consider being trained by her for her Coalition and new endeavors. While I was most honored, I respectfully declined as I was already committed to Power of Pain.
Our conversations also consisted of but weren’t limited to life, color, ethnicity, race, the olden days, differences, equality, change and today. She shared with me uncertainties about people, places and things, and I eased her in certain fear and prejudices. Please don’t misunderstand me, I’m not at all implying Mary was prejudice, in fact, she’s not, though conversations were simply sometimes deep. Mary listened and she learned. She watched, listened to gossip, dismissed it, listened more, read, picked it apart, put it together, and ultimately decided for herself. She wasn’t afraid to speak her mind or share a maybe, what if, what do you think or did you know.
I’m humbled to have been accepted, acknowledged, taught and even loved by her.
Mary was so proud of the New England RSDS Coalition, she was thrilled that the healthcare community was finally beginning to know what RSD (CRPS) is. She was pleased that patients had informational materials to seek out and be provided. She was happy that educational events were provided free to the public.
She told me the story behind July and why her proclamations are for the month of independence and not November. As I stated Mary began educating RSD over 30 years ago. July was chosen for freedom, freedom from pain. It wasn’t until many years later that a national color evolved, and then our month of recognition. Mary was grateful for her closest friends. I know she loved her beautiful friend, advocate and poet, Jane (Gonzales).
I prayed for her health and I prayed for her to achieve her life’s work, her mission to create awareness and educate on RSD, her purpose to continue doing so, and her hope for our future.
You did Mary! You really did! You achieved them all to the last breath.
MAKING COMPLEX REGIONAL PAIN SYNDROME SIMPLE FOR A JURY
A start-to-finish strategy for proving the chronic pain and resultant damages of CRPS
When God was testing the faith of Job, the worst punishment was physical pain…. He lost his lands and property, his family – but it was not until physical pain was inflicted that Job broke. (Job 16:6).
A case dealing with chronic pain can be difficult to prove due to the subjective nature of pain itself. This is especially true for Complex Regional Pain Syndrome cases (“CRPS”). CRPS, formerly known as Reflex Sympathetic Distrophy Syndrome (“RSD”), is an incurable chronic pain condition that is often debilitating. For trial lawyers and their clients, this disorder is especially troubling because of the controversy surrounding its diagnosis and treatment. As its very name implies, the disorder is “complex” in nature, is routinely misdiagnosed, and as such, is difficult to explain and prove to a jury.
Take a recent case that had a mixed diagnosis: Some doctors thought it was CRPS, while some did not. In the end, what mattered was our client had severe pain that would likely afflict him for the rest of his life. This was something the jury understood, whether we called it CRPS or not. The primary purpose of this article is to explain the basics of CRPS, highlight some of the challenges in dealing with a CRPS case, and discuss some useful strategies from a recent trial.
CRPS – WHAT IS IT?
CRPS is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), in which the pain is out of proportion to thc injury. There are two designations of CRPS: Type I and II. Typc I, which this article will focus on, is a result of trauma. Type II stems from a specific injury to a nerve.
Some researchers have said CRPS is potentially the worst chronic pain disorder a human being could endure. Doctors describe the severe cases of CRPS as being higher on the pain scale than childbirth and amputation. However, over the years, pain management practitioners were overzealous in diagnosing chronic pain patients with CRPS. In the early 1990s, “RSD” cases were popping up everywhere, perhaps in part due to the unclear diagnostic criteria at the time. Now, after the hype has calmed and thorough research has flushed out a more clear understanding of the disorder, CRPS cases can and should command the same attention as other severe injuries such as brain and spinal cord injuries.
To begin with, CRPS arises typically after an injury or trauma to the affected limb. For example, a seemingly simple fracture to the ankle eventually causing a severe pain disorder in that limb. The most frightening aspect of the disease is that it often initially begins in an arm or a leg and often spreads throughout the body. In fact, according to the National Institute of Health, 92 percent of patients state that they have experienced a spread, and 35 percent of patients report symptoms in their whole body.
CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area. These signs can be subtle in nature, or dramatic, depending on the severity of the CRPS.
CRPS symptoms vary in severity and duration. The key symptom is prolonged pain that may be constant and, in some people, extremely uncomfortable or severe. The pain may feel like a burning or “pins and needles” sensation, or as if someone is squeezing the affected limb. The pain may spread to include the entire arm or leg, even though the precipitating injury might have been only to a finger or toe. Pain can sometimes even travel to the opposite extremity. There is often increased sensitivity in the affected area, such that even light touch or contact is painful (called allodynia).
People with CRPS also experience constant or intermittent changes in temperature, skin color, and swelling of the affected limb. An affected arm or leg may feel warmer or cooler compared to the opposite limb. The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red. As discussed in more detail below, due to the complexity of the disorder, CRPS cases are often overlooked, misdiagnosed, and not properly worked up.
VETTING A CRPS CASE
As trial lawyers, we appreciate that many of our clients do not have the type of medical treatment and insurance required to get a complete medical workup and diagnosis. Often, an injury like a brain bleed or spinal fracture might go misdiagnosed. With a disorder such as CRPS, this is truly one of the injuries that often require an attorney’s eye and attention to appreciate the client’s dilemma.
The following are a few points to consider when interviewing a client to determine if he or she potentially has CRPS:
• An injury causing pain which is out of proportion to injury,
• Changes in skin texture on the affected area; it may appear shiny and thin,
• Abnormal sweating pattern in the affected area or surrounding areas,
• Changes in nail and hair growth patterns,
• Stiffness in affected joints,
• Problems coordinating muscle movement, with decreased ability to move the affected body part, and,
• Abnormal movement in the affected limb (most often fixed abnormal posture, or tremors of the affected limb).
For a full CRPS potential case checklist, please contact the author.
Spencer Lucas is a trial lawyer at Panish Shea & Boyle and specializes in complex catastrophic personal injury, products liability and wrongful death cases. He has extensive experience in cases involving traumatic brain injuries, spinal cord injuries, and chronic pain.
Panish Shea & Boyle, LLP
11111 Santa Monica Blvd #700, Los Angeles, CA 90025
Insurance is denying payment for opioid medication unless the patient agrees to attend a drug program. A California chronic pain patient with Reflex Sympathetic Dystrophy told me of her experience. She wants others to be aware that this could happen to them. The patient was fortunate to be able to pay for her medication/ She said “Poor people are screwed! If I wouldn’t have had the money, I’d be without meds”. This seems to be a rising problem. The issue of prescription drug abuse is an important one and is being addressed. This patient has no history with abuse. It would be important to address this if she was a previous addict or if an issue developed during the course of treatment, but I find it disconcerting that she not be entitled to coverage unless she agrees. This brings me to another point. Will it be clearly noted in the record that the patient was not misusing or abusing prescription medication when referred to the program. It is important that it be made clear and precise because otherwise as the medical record follows her it could simply be said that a drug diversion or drug rehabilitation program was attended leading another doctor or pharmacist to the belief the person is an addict.
These are important questions and they cannot be ignored. There is a problem with file management that already exists. Previous medications aren’t removed from the record and for other patients that leave one State to find a Physician in another it appears they are still on narcotics they were no longer taking. With the development of the Controlled Substance Utilization Review and Evaluation System (CURES) and the California Prescription Drug Monitoring Program (PDMP) healthcare providers who are eligible to prescribe controlled substances, pharmacists authorized to dispense, law enforcement, and regulatory boards are able to access patients controlled substance history.
These are tools that assist in learning information about a patient, but if information is not entered in correctly can also do harm. A little example, my husband was at his appointment recently and was asked if his medications had changed. This appointment was with his heart specialist. We had let the assistant know that his Gabapentin which he takes for Diabetic Neuropathy had been altered. She did right by asking but it didn’t make it into the record. An oversight. What if the medication was an analgesic opioid that was no longer being taken? Human error. No one would know it was no longer being taken. The assumption if a patient needed to be treated with a narcotic might be that they were drug seeking. Especially if other medications weren’t removed as well. Fortunately it wasn’t a major error. Unfortunately for someone else it could have been. Information still has to be entered accurately and people do make mistakes. Others simply don’t care enough to make sure it’s right.
Another example, an emergency room visit for an injury to the body. When the report was available it read, Alcohol Intoxication, as the reason for the visit. While the patient was intoxicated the only reason for the visit was to control bleeding, severe soft tissue damage requiring x-rays, and soft casting. While it should have been noted that the person was intoxicated it should not have been listed as the primary reason for the visit. This leads other physicians and emergency room personal who are only viewing the first part of the record to misconceptions which can adversely affect a patient in a new situation. They don’t have enough time in triage to look further, nor are most interested.
Patients need to become more assertive. Most of us feel that we are doing something wrong if we ask too many questions or if we demand a change. We have to take a more active role in our own care and lack thereof. We now have access to many of our own records for review in online patient centers. We can even communicate with our physicians.
If we don’t play an active role in our own care, records management and pain management, we will continue to be the scapegoat for other peoples errors. Lets review. A patient being required to enter a drug program in order to receive medication through her insurance. Another patient whose medication wasn’t updated and another whose reason for an emergency room visit wasn’t accurate.
There are hundreds of other stories that have been shared with me that just don’t add up. It all has more to do with the businesses involved than it does with any of us. For an insurance company to tell a patient they will only cover her medication if she completes a drug program, when she isn’t an addict, leads me to believe there is something in it for them, even if it’s to fulfill and obligation. An incentive. Patients are made to feel like they are abusers and addicts. This is wrong. For the small percentage that might be, it still wouldn’t be right to treat them poorly. These are the ones that would need help and to be assessed accordingly. I do know of legislation in the works that if a patient is on an opioid for 3 months or longer a drug program would be required to continue the medication.
Yesterday the Power of Pain Foundation Co-Sponsored AB 623 with Assembly Member Wood at the California State Capital in Sacramento where the bill was officially introduced. I spoke on behalf of both pain patients and opioid abuse. In attendance with me and on behalf of POPF and the bill was Erik VanFleet, Kharisma VanFleet, Debbie Ellis, and Brandy Ellis.
Speaking at the event was: Assemblymember Wood (author), Assemblymember Levine, Mendocino County Sheriff Tom Allman, Ralph A. Cansimbe, Chapter Commander PFC Alejandro R. Ruiz Chapter, American G.I. Forum, Representatives from bill sponsors US Pain Foundation, Power of Pain and American Chronic Pain Foundations and the CA Academy of Physician Assistants.
(Sacramento) – California legislators, public health representatives and law enforcement officials announced new legislation at a State Capitol news conference to curb prescription drug abuse and deaths. Assembly Bill 623, authored by Assemblyman Jim Wood (D-Healdsburg), aims to reduce prescription drug abuse-related deaths by reducing their access to those most prone to abusing them. More than 60 people die every day in the United States from prescription drug overdoses. Approximately 6.5 million people in the US abused prescription drugs in 2013, more than double those that abused heroin, cocaine and hallucinogens combined. “Narcotic pain medications, or opioids, have an important role in our health care system,” said Assemblymember Wood, who is a licensed dentist. “They provide effective relief for the millions of Americans who suffer from chronic pain. But too easily they are getting into the wrong hands.” Here’s more in this Assembly Access video.http://www.asmdc.org/wood
Hello, My name is T. VanFleet, I am the Advocacy Director and Executive Board Member of the Power of Pain Foundation. I am also a pain patient myself. Through painful trial and error, my physicians and I have finally found the appropriate combination of medications to provide some relief from my debilitating symptoms. The prescription medications that I take allow me to do things that most people take for granted. Now, I celebrate small triumphs such as cooking, occasionally attending a function, and watching my grandson grow. One of the medications that helped give me my life back is a prescription opioid. A type of medication which has recently come under increased scrutiny due to heavy abuse by some.
Unfortunately, people who use prescription medications as intended can become unfortunate casualties of efforts to regulate opioid abuse, as we end up getting lumped in with those who misuse treatments. It is difficult to obtain refills,, denials and delays by pharmacists and insurance, including workers compensation leave patients in withdrawal and un-manageable circumstances including suicidal ideation.
Fortunately, there are new weapons available to help combat prescription opioid abuse which do not sacrifice the many patients who legitimately use the medications to fight pain. New “abuse deterrent formulations” (ADF) for opioids have properties that make it difficult or undesirable for someone to tamper with them. These medications are made with physical and chemical barriers, such as a special kind of coating or hardness to the pill itself, that won’t allow them to be chewed, crushed, cut, grated, ground up, or melted with water or alcohol.
The Power of Pain Foundation strongly believes that California policymakers must enact policies such as AB 623 to help develop a strong, lasting solution to the health crisis of prescription opioid abuse. We must find a balance that separates patients who truly need opioid medication to live productive lives and those who are abusing them. Responsible patients should not be punished in an attempt to crack down on prescription drug mis-use and abuse. Legislators, health care professionals and pharmaceutical companies must work together to stop opioid abuse while keeping the needs of chronic pain patients front-of-mind.
I was honored to support this bill with Assemblyman Wood on behalf of the Power of Pain Foundation. It’s important that we assist in the prescription opioid drug abuse problem. This will help responsible pain patients get access to the care they need. Too many are denied now because of the stigma attached to their chronic pain identity. Abuse deterrent formulation’s will assist both issues.
With Hosts POPF President, Barby Ingle and POPF Executive Board Member & Marketing Director and Promotions Chairman – Joeygiggles and Co-Hosts Executive Board Member and Advocacy Chairwoman Twinkle VanFleet with Power of Pain Foundation Executive Director Ken Taylor.
Discussion: Legislation- Abuse Deterrent Formulation (ADF), more Listen Here
Out in the real world, I try not to identify as a pain patient. We will be judged. You know it, and I know it. It becomes our label. As I attempt to go forward in advocacy it can sometimes be a little awkward. Not in my physical appearance, but In my inability to speak properly, delays, memory, forgetfulness, stuttering, wake-sleep, sleep-wake. I’m heading into my 15th year with CRPS type 2. My Neurocognitive deficit seemed a rapid decline. It’s part of the story that helps me fight to go on, for my family, for you.
You have to hang on to you! It’s okay to not be perfect. It’s okay to not be your “yesterday”.
The struggle is real. We are who we’ve become. And it really is okay in all that it is. We might not like it, but we have to learn to accept it.
Perfection is all that you can achieve in the here and the now. Getting that shower, getting dressed, combing our hair. Those are the triumphs.
There’s so much worth in the smallest things.
I believe in you! Believe in you, too.
Thank you Barby Ingle for always believing in me and my ability even when I didn’t.
Lets try to remember to not pre-judge a chronic pain patient on appearance or preconceived notions, but instead, assess on diagnosis, and credibility. ~Twinkle V.
The ACCURATE study enrolled 152 patients at 22 centers throughout the United States. This represents the largest neuromodulation study to be conducted in patients suffering from nerve injuries (peripheral causalgia) or complex regional pain syndrome (CRPS, also known as RSD) to date.
“Approximately 10-50% of patients who undergo common procedures like hernia repair, knee surgery, and other lower limb surgeries will suffer from chronic pain resulting from nerve injury2. These conditions have historically been difficult to treat with currently available technology,” said Dr. Timothy Deer, co-study lead and CEO and President of the Center for Pain Relief in Charleston, West Virginia. “The ACCURATE trial is a landmark study that could change the way we treat these chronic pain conditions. Results from prior European studies have been promising, and we are hopeful that the ACCURATE trial will continue to substantiate the effectiveness of this therapy for our patients.”
We should not stop living because it hurts! I’ve heard so many times if so and so has Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy or Chronic Pain in general if they go out for the evening, wear a certain type of clothing, shoes, accessories, move their bodies they can’t possibly hurt that bad. Wrong! It means they are not letting the pain and disability rule their lives. They want to live, laugh, enjoy a moment, make new memories, perhaps experience some of the old.
Too often we become trapped in the cycle of isolating ourselves. Maybe even feeling sorry for ourselves. It’s okay to feel that way from time to time it’s not okay to let the illness take over our lives and that which we love. Family, children, goals, dreams and wishes for ourselves.
If you see someone doing something you wouldn’t do or your body isn’t capable of doing please don’t judge them. Maybe all it means is that they are pushing past the pain for a few minutes, a few hours, or a few days. Granted there are people in the world that like to be sick, they crave attention and pity, but not all Chronic Pain Survivors have this mentality. It is not fair to group them into one category. One size does not fit all and it never will.
Some of us use medication to try to survive, other’s have gone off of all medication and use alternative strategies for coping and managing pain, other’s use a combination of both as I do. Just because someone can survive without medication doesn’t mean they feel better than you do it only means they have learned to manage their pain a different way.
If you love to dance as I did, dance! I do! I may last 20 seconds, I might make it through a half of a song, I already know my body is going to pay for it, so why should I hold back because I might end up down for a week after? I shouldn’t and you shouldn’t either! If you love to garden, do it! Pace your activities so you can enjoy your time. If after a half hour you can’t do anymore, don’t. There is a fine line between doing too little and doing too much! Learn you and what you are able to achieve. It doesn’t matter that the next person only lasted 5 minutes or another person lasted an hour. You are you!
Make daily goals. Lists can be helpful. I often have 5 things on my list, my goal is to be able to mark off 3 of them. If I can mark off all 5 it’s just a plus for me and if I only make it to 2 I’ve learned to let myself know it’s okay. Don’t put yourself down for not completing a task just move the one you missed to the top of the list and start again.
I tell myself “I will” instead of “I’ll try” it’s just something I’ve found quite useful after completing my Functional Restoration Program back in 2009. The word “Try” sets me up for possible failure from the moment I say it to myself. “I will” motivates me! There is no pass or fail here. We can or we can’t. We will or we won’t. We are not only individuals but individuals in our own pain, depression and mindset also.
Many of us deal with depression and/or anxiety secondary to our chronic pain. Close your eyes, relax and go to your happy place. Using imagery can be helpful. Don’t forget to laugh and laugh with others. Laughter produces endorphin’s and endorphin’s decrease physical pain.
Physical pain and depression can be a vicious cycle in itself. Depression causes pain to increase and the pain causes the depression to worsen. Living, smiling, loving, practicing appreciation and gratitude goes a long way in helping us overcome and survive the diagnosis’ we’ve been handed.
While there are times I suffer, I know we all do, I do not consider myself a sufferer, but instead a survivor. I am surviving this! I am alive! It’s been said that pain is that one reminder that we truly exist and for me I believe it. I am reminded every moment of the day that I am living, I am alive.
Be good to yourselves!
Don’t stop living because it hurts, survive the pain and go on.
People Striving to Make a Difference in the Lives of Those Suffering and Surviving CRPS/RSD.
I’m seeking Photos for a future video that will feature those of you who strive to make a difference in the lives of those with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy.
Once all photos are in it will be fairly decided who will be featured in the video. Space will be shared with other’s who work just as hard yet has either never been or has rarely been recognized for their efforts. September is Pain Awareness Month and if all goes well this video will debut during that month.
Your photo can either be a head shot or a body shot. Send up to 2 photos, if you like!
Along with your photo, in the email body, please include:
1. Name, Foundation, Organization, Website Name, Blog Name, Radio Station, Etc. (You can also list all of the above)
2. City and State. (Or Province/ Country) (This video is not limited to the United States)
3. A brief bio on what you do (or have done) to make a difference in the lives of those suffering to survive CRPS/RSD. If the bio is too long it may be edited for space.
If you are a Mother or Father taking care of your CRPS/RSD diagnosed child, you are making a difference in the life of someone. If you are a child (adult or minor) of someone with CRPS/RSD and you are caring for your parent, you are making a difference, too.
In your email please add that you are giving me permission to use your photo and info. (I, (your name/organization), hereby give my permission to Twinkle VanFleet and RSD(S)-CRPS Advisory to use my photo and enclosed information for the Video Slide Show Presentation People Striving to Make a Difference in the Lives of Those Suffering to Survive CRPS/RSD that will be made public via YouTube.
I have personally invited a few people to be featured. If you do not get a personal invite from me this does not at all mean that I would not love to feature you. Please don’t feel shy or as if you aren’t good enough or haven’t done enough. You are just as important! This will be an annual project! No one will know from me if I’ve contacted you or if you sent on your own. That will be your business to disclose or not! ~smiles
Deadline– August 15, 2013. If you need a few day extension due to pain, please let me know before the deadline.
The following information has been taken from notes as a listener to the show and research, nearly all the words themselves belong to Dr. Victor M. Pedro. I take no credit for these. My goal is to get this non invasive seemingly promising information out so that other’s may find it a hopeful treatment program in their journey with CRPS/RSD, Chronic Pain, TBI’s and other illnesses and conditions.
Yesterday on the Living with Hope Radio show with Featured Host Trudy Thomas and Co Host Barby Ingle . Dr. Victor M. Pedro discussed Cortical Integrative Therapy (CIT®) a technique he uses and developed.
Dr. Victor M. Pedro’s career began as a Chiropractor and continued on with a Post Graduate in Functional Neurology. He says ” it was a very good starting point for brain function and innovative treatments that could begin to make a difference in peoples lives. He was fortunate enough to receive grant funding from the Rhode Island Legislature which permitted him to do a variety of studies and to study with significant people to get a more in depth and cutting edge picture of what was available in Neurology and how the brain functioned.
Trudy asked ” Does this therapy work for other conditions other than RSD? Dr. Pedro stated Yes! What he wanted his contribution to be is the person credited with creating an algorithm for understanding where in the nervous system to intervene.”
There are plenty of resources that will explain what a brain dysfunction is or pathology is, disease process or diagnostic procedure to figure out what folks are complaining about.
The rehabilitative model is where the challenge for the future lies.
Barby ask’s “Does every patient have a different algorithm? Or do you find they are similar with the same condition? The doctors answer’s ” By algorithm I mean a process we go about to evaluate what the affliction is or what’s wrong with the patient.”
Reflex Sympathetic Dystrophy or Dysautonomias in general are a condition Dr. Pedro has a particular interest in. With this condition he tries to find out how the autonomic system is dis-regulated or not working well and then his team tries to decipher in the patients does this person have Reflex Sympathetic Dystrophy (RSD) because the Sympathetic Nervous System is too high and not being inhibited or is it the Parasympathetic System that’s undergone demise and not effective.
“The treatment is actually different and makes all the difference in the world to the patients outcome, Dr. Pedro say’s.”
Barby ask’s ” Similar to Traumatic Brain Injuries (TBI’s) Would there be a different protocol for that?
Dr. Pedro answer’s “A different protocol in terms of how we’re going to add on different diagnostic pieces to the evaluation. Then we begin to identify precisely which modalities the patient needs. A TBI patient may have a similar pathology of an RSD/CRPS patient, may have similar findings, however we may go about the treatment process slightly differently.”
One of Dr. Pedro’s patients and a good friend of Barby Ingle’s just did an interview which will be released in this Saturday’s (June 1, 2013) edition of Pain Pathway’s Magazine. Please look for it!
Physical, emotional and nutritional needs are also taught this during treatment.
The autonomic nervous system delivers fuel to the body and brain. The autonomic nervous system is the automatic part of the nervous system that controls your heart rate, size of arteries delivering blood or fuel to the body and into our brain itself. This part of the body can be evaluated through a series of tests.
Someone with a compromise in their sympathetic nervous system may not have as much profusion as should be present. The long term consequences are considered regarding how this is effecting the tissue and that’s why the trophic changes present in this pathology.
Barby ask’s “Is maintenance treatment required or is this a one time process?”
Dr. Pedro states “The evaluation process takes 2 to 4 hours depending on the patient.” Based not only on tests, but the patients ability to participate.”
At the end of the evaluation we attempt to draw for them what we believe is wrong in the nervous system and make an educated hypothesis as to where the dysfunction is and what can potentially be done to correct it. A series of windows of observation, sympathetic, autonomic windows of observation more appropriately. We identify these at the end of the initial observation and we give the patient a treatment to see if their pain level comes down significantly or at least appreciatively.
That signals to us they are a good candidate for our program.
Dr. Victor M. Pedro is founder and president of Rhode Island Integrated Medicine, located in Cranston, RI. An accomplished, Board Certified Chiropractic Neurologist, Dr. Pedro pioneered the development of Cortical Integrative Therapy (CIT®)—a breakthrough, research-based treatment designed to address brain and neurological dysfunction in both children and adults.
After remarkable success using CIT® to treat school-age students diagnosed with speech, attention and learning disabilities, Dr. Pedro applied the treatment for use in patients with Reflex Sympathetic Dystrophy or CRPS, dysautonomias, and traumatic brain injury (TBI).
Over the years, Dr. Pedro has lectured extensively on CIT® as a non-invasive, cost-effective treatment for TBI, pain syndromes, dysautonomias, and other brain-related disorders.