As I laid snuggled in bed last night I considered again any future in CRPS Advocacy. I’ve previously mentioned that I’ve already stepped back from much of this. I’m currently not involved in any. I’m partnered with organizations and alliances which may include but aren’t solely related to.
Photo credit: Kurtis (Ozra) VanFleet Sept 24, 2015. Bay Area, CA. Stronger Than Pain
I re considered momentarily if I should have anything to do with being a voice for it again. Of course this tugged my heart strings as I contemplated. I need to be sure before I take on any further commitments. Since many of my views and beliefs are no longer what they once were I’m really not what you want and therefore I shouldn’t be involved.
I could feel my head move slightly to the left and then to the right. I was shaking my head no.
While I’ll go on to speak about or share things that have impacted me and others in various capacities of pain, illness and disability, I’ll leave CRPS Advocacy to those of you who inspire to do so.
As able, I’ll share you’re endeavors. I’ll try to read and share your blogs, awareness, events, and accomplishments.
This is really all I can do and I hope that it’s enough.
NERVEmber ™ brings awareness to the 150 plus conditions that have nerve pain as a symptom.The International Pain Foundation host the OFFICIAL NERVEmber project events each year. Since its inception, tens of thousands of nerve pain patients and organizations have signed on to help promote NERVEmber. Did you know the color orange is the international color for chronic pain awareness. In over 150 conditions that do have nerve pain as a symptom, RSD is one of the most painful. Yet this condition is misunderstood, mistreated and often misdiagnosed.#NERVEmber is International Nerve Pain Awareness Month (including RSD, CRPS, Diabetes, Neuropathy and more). Each day during the month of NERVEmber the iPain (@powerofpain) will present an awareness task that we can all perform!This year we are also giving away prizes available for everyone who registers to participate and uses the hashtags, complete tasks, host or attend an event. The more you participate in OFFICIAL #NERVEmber events, the more chances you have to win! Check out all events going on in NERVEmber Event Calendar.You can bring awareness to conditions like #RSD #CRPS #Diabetes by posting everyday in #NERVEmber with @powerofpain #PaintTheWorldOrange. Using these tags will earn you chances to win some great prizes!During November, the International Pain Foundation’s #NERVEmber project is also supporting the #CRPSdayofaction, #RSDdayofaction, @theproject3x5’s #OrangeInitiative, A voice for the people with CRPS – CRPS RSD Australian Network, United in the Fight for CRPS Awareness, #ColorTheWorldOrange, #ColourTheWorldOrange.Want to be a #iPain Super Advocate for NERVEmber and have extra chances to win! … Register HERE Thank you for visiting NERVEmber.org and don’t forget to visit NERVEmber™ on FACEBOOK.
It’s important to understand that MLT isn’t a magic pill we get to swallow and become miraculously cured by. It’s the beginning of curing ourselves. Cure in medicine is defined as:
cure (kyur) n.
Restoration of health; recovery from disease.
A method or course of treatment used to restore health.
An agent that restores health; a remedy.
cured , cur·ing , cures
To restore a person to health.
To effect a recovery from a disease or disorder.
Remission in Medicine is defined as:
remission re·mis·sion (rĭ-mĭsh’ən) n.
Abatement or subsiding of the symptoms of a disease.
The period during which the symptoms of a disease abate or subside.
It’s not really difficult to understand that a cure is just as possible as remission can be. How? The answer is simply by restoring a person to health.
“Manual Ligament Therapy (MLT) is a new and original technique created by Arik Gohl. … We have learned that ligaments are a significant source of pain, especially in cases of chronic pain. Until injured ligaments can heal from their underlying dysfunction, muscles will remain in a tense and guarded state.”
I know what you’re thinking. If you have Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome that you’ll forever live a life of pain with potential spreading from the original site of injury to the rest of your body.
It can be true, but it doesn’t have to be. All of those symptoms, burning, allodynia (pain resulting from a stimulus (as a light touch of the skin) which would not normally provoke pain; also: a condition marked by allodynia) hyperalgesia (increased sensitivity to pain or enhanced intensity of pain sensation), hyperesthesia (unusual or pathological sensitivity of the skin or of a particular sense)
I really don’t have either of the above anymore. My body is still learning not to feel sensations of pain while also recognizing those areas that aren’t hurting. If anything its just hyperesthesia I’m working through. Example, sock me and I’ll feel that sensation long after the actual event. Like a repetitive action.
Keep in mind after years of pain, signals misfiring, injuries taking on abnormal healing paths, other areas of my body becoming effected beyond the site of the original injury that I have a main role to play in reversing these abnormalities. I have to reset my perception to pain by reversing all that my body knows, felt, and has learned as a result.
5 days of Manual Ligament Therapy has gotten me to this point. The custom orthotics is correcting every abnormal step I’ve taken since January of 2001.
You might be thinking manual? Yes, you’ll have to be touched, and you’ll have to move areas you’ve stopped using due to RSD/CRPS, chronic pain. This isn’t traditional physical therapy, you’ll actually feel restricted tissue, muscles, and a myofascial release of those symptoms and connective fibrous tissue eased.
What about burning which is the hallmark symptom of RSD? It’s eased the same way.
Currently MLT isn’t a covered therapy under insurance. Like many other integrative, complimentary, or holistic practices, including acupuncture, acupressure and similar therapies which may be beneficial we’re still legislatively working on these options for you.
Another healing retreat will be held at the Sheraton Los Angeles International Airport beginning Monday, November 28, 2016. http://www.sheratonlax.com/
The cost for the treatment is $2,500 and doesn’t include travel or hotel. I know it sounds like a lot, but it’s not compared to a single injection or invasive procedure billed to insurance or accumulative and yearly co-pays. For more information please contact Monica Depriest: Monica@gohlprogram.com
I’ll be present also to follow-up on my own therapy.
So with that I look forward to meeting you and hope that you’ll give yourself the opportunity to feel better. Sometimes it takes pain to get rid of it. It’s a process of not only healing but believing in yourselves enough to understand that’s it’s possible rather than impossible and pain being the rest of your lives.
Monica Depriest and Arik Gohl picked me up from my son’s home on October 23rd, 2016. My husband and I had spent the weekend there to take care of our grandson De’Mantai so his mom could enjoy some time away. I had just had a cervical steroid injection. This was my second in 8 weeks. I had only ever had Lumbar Sympathetic Nerve blocks prior and over a dozen of them. I had began with a series of 3 scheduled one week apart in 2006. It had taken 6 years for any treatment other than medication management due to Worker’s Compensation. So that I’m precise rather than confusing, these weren’t denied. Had they been denied I could appeal, instead just stalled and delayed. Since the first 2 series of 3, I’ve had one injection a year since, generally during winter and often times delayed beyond my physician’s control.
We arrived in Loomis California an area outside of Sacramento that evening.
Photos above taken 3 hours apart and the same day as the video below. November 4, 2016.
Admittedly, my body was weak and pain was high, but I hadn’t shared that yet. I tend to go off on my own, and attempt to distract myself when among others. As we arrived, Susie and her son Tommy who has RSD/CRPS, along with her son David had also arrived. Jamie and Spencer arrived later. Jamie Pearson is active in the RSD/CRPS communities, too. Arik’s wife Veronica was amazing and helped us all feel at home. Vero’s hospitality and playful spirit afforded us the ease of being less anxious and at ease among those we didn’t know. Sam Ballentyne licensed therapist and energy healer was also present during the week. Dr. Edward Glaser arrived the next morning. Dr. Glaser is the owner of Sole Supports and an engineer and DPM specializing in Podiatry and Orthotics. Another Podiatrist joined us to observe and all our therapies would begin the morning of October 24th.
16 years. 10 with a permanent Spinal Cord Stimulator (SCS) that hasn’t been turned back on since the morning of the 24th. My only blessing that has been on day in and day out since 2006. The only time it’s ever been off is to either charge a drained battery or to push past 2-3 days to allow my brain to scramble and disguise the pain signals it provided. Our brains realize it’s being tricked. Turning it off let it work better again when turning it back on.
It’s been over a week since returning. I wasn’t suppose to ever be able to do this, at least without added pain or causing a flare-up. Lets see if I can get to the point of running one day. 2 days ago, I was still told I never will.
Approximately 3 weeks ago I was contacted by Barby Ingle, President of the International Pain Foundation with a program to consider. Barby sent me Dr. Edward Glaser’s phone number and a link to what the program entailed.
Those of you who know me would also know that I had to do more research on the Manual Ligament Therapy (MLT) being offered. I had to learn more! I had to try to understand the concept, and how it might work if it could. It wasn’t just the Gohl Program itself that I researched. I also pulled up each name involved. 3 of which were Dr. Glaser, Arik Gohl, and Dr. Forbes. Then I read up on Monica DePriest and her daughter Haley DePriest who had CRPS and who is well today because of the program and the techniques that Mr. Gohl’s therapy provider her. Testimonials.
See how my curiosity piqued even more? We’ve all been told that CRPS/RSD is incurable. We’ve learned that it’s also in our blood not just our bodies. I wasn’t as skeptical as some may have been because I had already, several times, researched techniques involving manual trigger point therapies, acupressure, Chinese medicine techniques and similar holistic treatments dating back to the 1800’s. I had already been treated earlier this year with the Bowen Technique.
I had become so let down by western medicine not being able to relieve my own CRPS, or specifically CRPS Type 2/Causalgia in any way other than by Lumbar Sympathetic Nerve Blocks, medications, and traditional physical therapies that only provided minimal relief, if any, that depressions worsened and hope was nowhere to be found. Since December of 2006 the only steady I had was my Medtronic Spinal Cord Stimulator which reduced or disguised enough symptoms that walking wasn’t as painful as it was prior, and pain medications could be reduced by my choice in the permanent placement.
Complex Regional Pain Syndrome: Systemic Complications
CRPS is becoming the great imitator in pain medicine. This article discusses the symptomatology of the disease, including atypical presentations.
By Robert J. Schwartzman, MD
All those things I had accomplished over the years, I found little happiness in. I put on the fake it to make it mask and I wore it quite well. Who would have ever thought that I struggled so badly with suicidal ideations that even my spiritual beliefs couldn’t stop me from wanting to bail on this world.
A mid-metatarsal separation of my right foot (also known as a Lis Franc fracture) January of 2001 in an industrial injury began the last 16 years of uncertainty, loss, rejection, abandonment, failure, and secondary diagnosis’. I still had my upper body though. My hands, fingers, and arms would make up the difference. I could still write type and use social media. In 2009, 9 years after, I got a left foot accelerator pedal installed on our van to be able to drive again. Oh I tried! By that time my left leg was too weak also to drive safely.
I had already had degenerative changes in my spine, but pretended that I didn’t. My legs hurt so bad that it diverted any back pain. 3 years ago my arms started doing things I didn’t understand. Beginning with my left and worsening on the right. By the time I had an EMG my left was reduced and my right just continued to worsen. I’ve never had an EMG or nerve conduction studies on the right side. As 2016 approached the pain in my neck, shoulder, chest, upper and mid back, head, face, the sensations of pulling, tugging, ripping, intense pins and needles, paraesthesia, became so unrelenting that I really couldn’t take it anymore. Bending at the waist started a flare each and every time. I still have to work on that. I had lost feeling in my thumb, forefinger and wrist. My right hand had lost strength.
But wait! I still had my left hand and arm. If I ever needed the gift in being ambidextrous, I would really need it now more than ever to be a part of anything, offline or online.
I had unknowingly believed in hope while other’s told me I was in denial and that I had to accept all those things I wouldn’t be and couldn’t do and would never do. At a higher level of consciousness I saw the light ahead, but was conflicted by the darkness of despair.
I’m already so much better than I’ve ever been in 16 years because of MLT.
I celebrated my 48th birthday while at the program. My son drove my husband to Loomis CA to spend an hour or so with me. First time I’ve been away, on my own, anywhere in 15 years.
Me and my husband Erik
Me and our son Ozra
While I’m still wrapping my own head around it, it’s not as unbelievable as it seems. I promise.
I would like to take this opportunity to thank everyone who’s supported me this year. If you’ve ever offered a “feel better”, “prayers”, “love”, “care”, “like” or supporting comment on any of my pages, this means you. You’re support has meant much and will remain as such. For many years, I rarely revealed it all. One day came that I started to and while I may have said too much, I really haven’t said enough.
Social media provides a platform of venting that some of us would not ever reveal the same way offline. It’s sometimes too easy to just say it, but then consequences arise.
I’ve learned that while my family would die for me they would not ever know if I was in distress. I look well enough, I keep going, I’m too strong. I’m our rock! This can be said for all the families out there that has dealt with addiction, or overdose. Let’s teach families to recognize signs and symptoms of both the use of medication and those who haven’t been relieved enough to sustain life. When we can do this, we’ll truly make the impact we need to for other’s.
There is pain in addiction and overdose, there is pain in believing you’ll never make it because your physical self cannot handle the body, mind and spiritual decline in it’s entirety or the emotions that arise from it.
I’ve learned that we’re all in pain. One way or the other regardless if someone admits it or not. All of us have an underlying “mental health” emotion. It’s the human experience. Life, love, loss, finances, parents, children, families, friends, work, volunteering, hopes, wishes, exercise, something..
There will always be something to stress down from, re group, and go forward with.
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.
Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet below.
The past few years have been a test of strength, endurance, and possibilities amidst constant setbacks to overcome. 5 years after the injury that led to my CRPS, I did go back to school for a degree in Corporate Publishing. At the end of 2006 I took leave to have my permanent Spinal Cord Stimulator implanted and I returned approximately 10 weeks later. Due to not being able to drive any longer, my husband took me and picked me up in between his own full-time work schedule. By 2007, I wasn’t able to keep up any longer. My grandson was born in 2006, too. My husbands first heart attack when he was 37, 2 stent placements, his Diabetes diagnosis, he only used accumulated vacation time for it and returned to work in a weeks time. In 2007, we bought or first home, but he also lost his 13 year career and stability when his company C.S.A.A. (AAA) relocated out of California. I continued to raise awareness for chronic pain, met Trudy Thomas, became a leader at MD Junction’s RSD Support and remained for 3 years. My own support group which I began on My Space in 2003 was moved to Facebook, yet I didn’t move the members with it. I like for people to find us rather than to send out invites or notify. I met Barby through Trudy. My son had a traumatic brain injury in August of 2011 and my husband had a second heart attack within a year. I stayed in the PICU with Ozra for 10 days. In December of 2012 I stayed at the hospital with my husband for the entire 9 days during his quadruple bypass surgery, the first few days I slept in the van. In 2012, I had Gall bladder surgery and in 2013 I had another Gall bladder surgery which included the removal of part of my liver and multiple hemangioma’s. https://rsdadvisory.com/2013/07/17/gall-bladder-fiasco-continued-and-hopefully-the-final-chapter/
2014 my daughters liver disease, our sons birth defect diagnosis from Shriners Children’s Hospital unrelated to his TBI and my surgery to have my SCS battery replaced. Piece of cake, mostly. 2015 started with a bang and 3 weeks of hard Cymbalta, Zonegran, and Clonazapam withdrawal due to WC delaying Rx refills. The other 2 weren’t filled either, but really no effects from them as much as the other 3. I no longer take Clonazapam or get the Lidoderm. It hasn’t been easy, especially when Clonazapam did help and pain management medication was and is already at the lowest minimum. I already do all that I can to minimize my own agony and I practice these coping strategies each and every day. My husband just had surgery to repair a torn shoulder a few months ago and we just learned by MRI he has another tear in his knee. We’re still learning all we can at Stanford for our daughter. Rikki is managing well. My purpose is in helping others, it’s all I’ve ever done one way or another, but it isn’t my passion. I’ve come to realize it can’t be. It’s not the fire flickering about the dancing flames that motivates my spirit to fly. My bucket-list goal survives all this. It’s not writing, I have that. It’s not policy, POP gave me that opportunity again. It’s much deeper than that, at least for me. Our son and oldest daughter are moving in together on the 1st. My man and I will have our home to ourselves. January 26th begins my 16th year. I’m not sure where 2016 will take us, I just know I take a lickin’ and keep on tickin’ … for mine.
Functional restoration afforded me lessons and insight to be able to push on. Sometimes we already realize these lessons for someone else, but when it’s us, we don’t recognize it the same, we change, unless we change us back.
It’s a daily process to overcome additional challenges brought on by chronic or intractable pain. It’s moment by moment at times. Having to stop something suddenly to practice breathing exercises to decrease a stress situation brought on by either emotion or a spike in pain, bring a rise in blood pressure down, use focal points, imagery or going to my “happy place” in my mind to ease myself.
John C. Thomas, PhD, Rick Wurster MSG, MPT, ABP, BCIAC, Leticia Camarena M. A., Tatyana Yatsenko, Larry Lane, Patient, Patient, Twinkle VanFleet, Patient. Compass Center for Functional Restoration Graduation July 17, 2009
I began recording both my P & E. I tracked my “pain” level and my “emotional” level using the same Numeric Rating Scale. The 11 point 0 – 10 scale where 0 represents “no pain” and 10 represents “worse pain imaginable”, “as bad as I can imagine” or unimaginable. I don’t do this anymore because I’ve learned to have the awareness without tracking, but for example at the moment I logged, my E/emotions/stress was an 8 and my P/pain/physical was a 5, I would eventually learn that my pain level would most likely rise anytime. I had to use my cognitive tools right away to reduce my stressors in order to manage the physical pain. I discussed this concept at MDJunction.com when I was a group leader in the RSD Support Forum in 2009.
Life itself can be hard, add pain to it, and it’s even harder. It can be managed with the right tools. It’s never going to be perfect, but we can make it as comfortable or as tolerable as possible for ourselves. Removing or decreasing triggers that instigate pain have eased me. I can’t watch the internet all day. It’s not because I don’t love or care for everyone. It’s because there are pain triggers everywhere. When we see images, graphics, memes of illness or disease scrolling by, especially our own, a trigger can occur. I’ve learned over the years to recognize this. I have the awareness to understand that I can be a contributing factor in my own discomfort.
I never went to preschool and Kindergarten was only for a week or two. I started school in the first grade. I was taught at home and I was reading at advanced levels by the age of 5. My comprehension and spelling ability was always above average. While I either suppressed it or just didn’t care to acknowledge it, I did go to special classes in the first and second grade because I couldn’t pronounce the letter’s S and T in words and sentences properly. I was a critical thinker immediately in life. http://www.criticalthinking.org/pages/defining-critical-thinking/766
By the time I got to my 4th elementary school in the middle of the school year in the second grade, I didn’t have to tell anyone I went to the classes with the special ones. Those new kids and that neighborhood became the ones I grew up with until I left Sacramento in October of the 9th grade to move to L.A. County for my dad’s job. The rest of that year carried with it a bit of insecurity. I started Drama at my new high school and as a Junior I was in second year advanced drama, speech, debate and thespian clubs, involved in school plays, in chamber singers for a while, I swirled the baton too, but chose my priorities and kept to the one’s I still use today. By the middle of the 11th grade I was off to the high desert where my parents bought a home. I’ve been in 4 high schools, 2 Junior high’s due to the district split and several elementary. I learned to adapt young. I may not like it, but I do it fairly well. I’m a survivor of repeated childhood molestation and indirect physical and emotional abuse.
I’ve been an Empath http://themindunleashed.org/2013/10/30-traits-of-empath.html for as long as I can remember. I can vividly still remember leaving my teething ring on the back metal bumper edge of my dad’s best friend’s pickup truck and them driving away with it. I’m hypersensitive to people, places and things sometimes to my own detriment, yet I’m also a no-nonsense girl. I’m inclined to the natural order of things, including man and woman, but I’m not a doormat. I love my crazy and he does, too! Why? Because it’s really not all that crazy, I just like to have it appear so in the midst all the uncertainty in life. Laughing is the best medicine of all. If I can make you laugh, give you something to laugh at even if it’s at my own expense, I’m thrilled to have been of service.”
Sure there are times I think “Dang, no one gets it!” I don’t mean in everyday situations, I mean in my critical thinking. Those who are on the same page fear agreeing openly until my thought, reasoning, even an educated statement that I make is validated by someone with high education, authority or status. By that time I really don’t need the care, concern or acknowledgment. I might have needed it when I was no one to be acknowledged for. No one will ever know in these situations because I’ll not ever treat them any different and there isn’t any animosity, but there is recall. Why? Because everything we do or don’t do to another person makes an impact on them. Those impacts influence the rest of their lives by accumulation in decisions and choices. This includes my interaction with other people.
By the time I was in the 4th grade I was in the MGM program. At that time called Mentally Gifted Minds. My 9-year-old grandson is currently in the Gifted and Talented Education Program (G.A.T.E.).
During the 4th to 6th grade 2 of my class periods were reserved for tutoring the NES (Non English Speaking) students who just joined our Country from Vietnam, and other Southeast Asian communities. I was 8 years old when I began the 4th grade. These years were 1975-1977/78. Due to being bright enough to be a student teacher at such a young age, I missed normal class subject time; I began to fall behind in math studies. My mathematical education is only that of general knowledge. I held enough that I was promoted to General Manager for a Restaurant by the time I was 24.
(Several paragraphs have been removed from the original for this share)
It really is a multi-disciplinary approach to pain care and taking an active role in our own overall well-being that makes the difference between making it or breaking it. Even if we have to fake it to make it to get there.
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
Hi, Yes I’m looking forward to meeting you as well. I leave Oct 23 on. Friday. A lil less then 2 wks.I will call u sometime on the weekend after I arrive, hugs & lots of love.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
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