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.
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.
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.
The West Coast Pain Summit was held on November 14, 2015 at the Elk Grove Public Library Conference Room. In attendance was Lynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com), MarLeice Hyde – Erasing Pain (erasingpain.com) and Michael Connors, LVN. Harmony Home Care (harmonycareathome.com). We had local and out-of-town attendee’s join us. Our Power of Pain Foundation Delegates Erik and Kharisma VanFleet assisted as needed and 9-year-old ‘Tai Howard offered a friendly smile and a well-behaved demeanor.
Mr. Clete Dodson won our Power of Pain Long Sleeve Shirt chosen from the in person drawing. Monique Maxwell was chosen for our #NERVEmber silent drawing.
My presentation included, but was not limited to:
<Begin>
Welcome to the First Annual West Coast Pain Forum hosted by the Power of Pain Foundation.
This year hosted and sponsored by both the Power of Pain Foundation and Medtronic Neuromodulation.
Our topics today include Access to Care, Advocacy and Neuromodulation with Medtronic Pain Therapies from Medtronic.com and TameThePain.com
Access to Care
Patient Rights
There are 8 key areas to the Patients’ Bill of Rights
You have the right to accurate and easily understood information about your health plan, healthcare professionals, and health care facilities.
You have the right to your choice of providers and plans.
You have the right to emergency services. (Emergency department, urgent care)
You have the right to take part in treatment decisions.
You have the right to respect and non-discrimination
You have the right to confidentiality. (Privacy of healthcare information)
You have the right to file complaints and appeals.
You have the right to your consumer responsibilities. (Take an active role in your own health and well-being. Doctors are only a tool, too. )
Patient Communication
Understand your symptoms
Communicate with caregivers and healthcare professionals
Communication is essential.
Become an expert in your pain
Be prepared when attending your doctor’s visit.
Keep a pain journal.
Write down your questions.
Do you have concerns about your medication, or treatments?
Take notes.
Have a shared understanding of your pain and symptoms.
Get emotions under control.
Be assertive, but listen to others.
Describe your pain. (Don’t just say its pain. Does it burn, stab, pinch, tingle. Does it feel like cutting, aches, or throbbing? Is it localized or all over? Is it instigated by stress, depression, emotions?) Your doctor can’t help you if you’re not able to communicate.
Take someone with you to your appointments.
Take responsibility in reaching goals.
Caregivers: Be mindful and assertive in caregiving. According to the Department of Pain Medicine and Palliative Care at Beth Israel Hospital in New York, a family caregiver is “anyone who provides any type of physical and or emotional care for an ill or disabled loved one at home”. For this definition, “family” refers to a nonprofessional who is called “family” by the person who is sick. Sometimes, family is whoever shows up to help. (IN the FACE of PAIN, 5th edition, page 40)
Patients
Be easy on your caregiver without them you might not have any one to care for you. If you’re both a patient and a caregiver, be easy on each other. No one knows better than both of you.
Reducing Conflicts
Keep one network of physicians. One primary care provider, let referrals be given by only him or her.
Use only one pharmacy. Have medications sent to the same location. Pick them up from that location.
Don’t allow more than one physician to prescribe you an opioid pain medication.
The PDMP/ Prescription Drug Monitoring Program contains records of your prescribing history and is maintained and reviewed for changes in your habits.
When visiting ED’s describe your pain on the 0 – 10 NRS or Numeric Rating Scale which is most commonly recognized in emergency care. The NRS Scale for pain measures the intensity of your pain. It’s the 11 point numeric scale with 0 representing “no pain” and 10 representing “the worse pain imaginable”, “as bad as you can imagine” or unimaginable and unspeakable pain”.
Don’t tell the doctor your pain is an 11 or 20. You may be found unbelievable and your access to timely and proper care may be delayed, or in some instances even denied. You want them ready and willing to assist and care for you without second guessing.
*Adherence
Medications don’t work if we don’t take them. They’re prescribed to be taken as directed. Not doing so can lead to flare ups, increased pain, adverse reactions, withdrawal and misuse.
Examples of non-adherence
Not filling prescriptions
Not picking up filled prescriptions from the pharmacy
Skipping doses
Stopping medication before instructions say you should
Taking more than instructed or at the wrong time of day
*(IN the FACE of PAIN, 5th edition, page 16)
Potential setbacks
Many patients, including myself, have a severe Vitamin D deficiency in addition to the dystrophy caused by their diseases, or syndromes. Dystrophy is defined as – a disorder in which an organ or tissue of the body wastes away. This includes the bone and tissue in the mouth, jaw, teeth, and gums. Access to care can be a setback when our teeth decay, break away, or we’ve lost them as a result. Lacking dental insurance is an issue of its own. Judgement regarding addiction, misuse and drug seeking can hinder care until each time we prove otherwise. Additionally, BiPAP and CPAP use can contribute to dry mouth and decay. Moisture removed from the mouth is another price we pay just to breathe.
AB 374
The California Legislature approved a bill (Assembly Bill 374) the second week of September. Step Therapy required that a patient try and fail (fail first) a medication before being allowed to take the one their physician would have otherwise prescribed for them. AB 374 now allows providers in California to fill out a form to bypass step therapy requirements.
The PA Shuffle: Prior Authorization; information on our efforts can be found at our table, next to our ADF Policy efforts.
An energy assistance program is available through SMUD for qualifying patients who use specific medical devices. You can request the Medical Assistance Program Application by calling the Residential Inquiries number located on your bill.
Each of the above can assist in access and care. ( 7 min ) ^
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Introduce
Pain Clinic (15 mins)
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Break, meet and greet, #painPOP info
We’d love to have you take part in our #painPOP in the parking lot after the conference for photos and a bit of fun in raising awareness for National Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome Month. Our #painPOP campaign is participate or donate. Accept a challenge or donate to our cause.. I challenge all of you to raise awareness for the painful, debilitating and often progressive Neuro autoimmune illness that desperately needs a cure, an understanding for better quality of care, early diagnosis for stabilization or remission, and continued education and support materials, programs, free public educational events and conferences that we provide free to patients, caregivers, the healthcare community and the general public. We can’t do it without the help of awareness and funding. If you didn’t receive your raffle ticket joining us today, ask for one. Check NERVEmber.org tomorrow to see if you’ve got the winning numbers. You’ll be contacted to be sent your prize. Medtronic is up next with a demo, overview and a Q & A session. Enjoy each other!
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Introduce
Medtronic
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Advocacy
The Power of Pain Foundation Co-Sponsored SB 623 ( Abuse-deterrent Opioid Analgesics ) with Assemblyman Jim Wood and attended the live press conference held at the California State Capital on March 24, 2015. We will continue to support this bill in 2016. The bill will provide a safer alternative option to opioid medications by deterring several non-swallowing ways opioids can be abused.
Getting involved
You can join our international Delegates team by visiting: powerofpain.org/delegates-of-popf
We’re always looking for committed local volunteer advocates to support our legislative and policy efforts. The Power of Pain Foundation is a member of:
The Consumer Pain Advocacy Task Force (CPATF) which is comprised of national leaders and decision-makers from 16 consumer-nonprofit organizations that are dedicated to patient well-being and supporting the use of effective methods for pain treatment. The State Pain Policy Advocacy Network (SPPAN) first convened these leaders in March 2014 to organize a collective action effort to benefit people with pain. consumerpainadvocacy.org
SPPAN is an association of leaders, representing a variety of health care and consumer organizations and individuals, who work together in a cooperative and coordinated fashion to effect positive pain policy on the state level—policy that guarantees access to comprehensive and effective pain care for all people living with pain. Power of Pain Foundation is one of the original SPPAN partners. sppan.aapainmanage.org/
As POP Advocacy Director (POP 2011-12) and a SPPAN leader since 2013, locals would be working with me, as needed, to attend and represent us at the Capital.
We thank you all for attending today. We look forward to seeing you again next year. Please visit powerofpain.org for our education, awareness, advocacy and access to care missions.
<End>
#painPOP
After the conference we popped the pain out of ’em! #painPOP
#painPOP with attendees from WCPS
Published on Nov 14, 2015
#painPOP with some of the attendees from the POP’s West Coast Pain Summit 2015 for neuropathy awareness in #NERVEmber #ihavethenervetobeheard #doyouhavethenervetobeheard #powerofpain http://PowerofPain.org/conditions #ShareAndMakeAware #ParticipateAndOrDonate
Additional photos can be found on the Power of Pain Foundation’s Facebook Page at facebook.com/powerofpain in the 2015 POP Events Album.
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Lynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Twinkle VanFleet – Advocacy Director (powerofpain.org) and Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com).
The 8 key areas of the Patient’s Bill of Rights
Information for patients
You have the right to accurate and easily understood information about your health plan, health care professionals, and health care facilities. If you speak another language, have a physical or mental disability, or just don’t understand something, help should be given so you can make informed health care decisions.
Choice of providers and plans
You have the right to choose health care providers who can give you high-quality health care when you need it.
Access to emergency services
If you have severe pain, an injury, or sudden illness that makes you believe that your health is in danger, you have the right to be screened and stabilized using emergency services. You should be able to use these services whenever and wherever you need them, without needing to wait for authorization and without any financial penalty.
Taking part in treatment decisions
You have the right to know your treatment options and take part in decisions about your care. Parents, guardians, family members, or others that you choose can speak for you if you cannot make your own decisions.
Respect and non-discrimination
You have a right to considerate, respectful care from your doctor’s, health plan representatives, and other health care providers that does not discriminate against you.
Confidentiality (privacy) of health information
You have the right to talk privately with health care providers and to have your health care information protected. You also have the right to read and copy your own medical record. You have the right to ask that your doctor change your record if it is not correct, relevant, or complete.
Complaints and appeals
You have the right to a fair, fast, and objective review of any complaint you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about waiting times, operating hours, the actions of health care personnel, and the adequacy of health care facilities.
Consumer responsibilities
In a health care system that protects consumer or patients’ rights, patients should expect to take on some responsibilities to get well and/or stay well (for instance, exercising and not using tobacco). Patients are expected to do things like treat health care workers and other patients with respect, try to pay their medical bills, and follow the rules and benefits of their health plan coverage. Having patients involved in their care increases the chance of the best possible outcomes and helps support a high quality, cost-conscious health care system.
According to the presentation at the POPF Midwest PAIN Expo attendee’s learn the importance of the of the “Patient Bill of Rights” (“Patient Rights” 3). (et al.)
We look forward to seeing you next year!
Twinkle VanFleet, Sacramento resident and pain patient. Executive Board Member and Advocacy Director, Power of Pain Foundation.
The Living with HOPE Radio Show with Host Trudy Thomas will re air live NERVEmber 19th, 2015 on the Body, Mind, and Spirit Network. Due to health reasons she took leave in January and has been working toward returning.
I’ll be re-joining Trudy as co-host each Thursday at 2:30 p.m PST/5:30 p.m EST with a 30 minute guest speaker, or to review, or to discuss current affairs. The chat room will be available for your combination of listening and chatting pleasure. The call in number for the show is (929) 477-3203.
Please stay on the line to listen live or press 1 to speak to the host.
Together, we’ll bring you a diverse array of treatment options, healing essentials, technology, inspiration, activities, and living with hope.
Since 2007, Trudy’s mission has been to promote awareness for the millions of people who struggle with chronic or intractable pain. To let people know that they are not alone in their journey and that there is life after diagnosis. Trudy discusses various therapies and the emotional struggles that can arise with a chronic incurable condition such as RSD/CRPS and coming out on the other side. She strives to empower, inform and educate.
If you have a topic of interest or would like to request guest consideration and have any questions, Please, contact Trudy at: goldfield_nv@hotmail.com
With “Topic of interest” in the subject line to propose a topic. “Guest speaker” to be considered as a guest and “Question” to ask your question. Please provide your proposal or question for either. This helps filter email and requests to better serve you.
The faces and limbs in these videos are many of the people you have crossed paths with over the years. They may be your friend, colleague, or acquaintance. For other’s, you may not have realized what it is they endure. They’ve shared this part of themselves to educate and bring awareness to Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. The faces you gaze upon seem fine, look well enough, perhaps not even a glimpse of pain, or discomfort. Such an illusion. The delusion lies less in the patient who complains than it does in the provider who doesn’t care to look beyond what initially seen. You’ll then watch the limbs of people and if you make note, you’ll find that those faces … live with more than just an ache. To see it, you have to look beyond the faces.
It’s Pain Awareness Month. Share and make aware to continue the common mission of all of us everywhere who strive to make a difference in the lives of those suffering to survive.
Uploaded on Jan 22, 2012
This is the 5th Faces of Pain video by the Power of Pain Foundation. The video contains chronic care patients who
are dealing with an autoimmune condition which attacks the nervous system, immune system, muscle, bone and
sometimes organs. For more information on the POPF or RSD please visit www.powerofpain.org. The video was
produced by Twinkle VanFleet and Kurtis VanFleet. Background Image taken by Kurtis VanFleet. This video is
property of the POPF copyright 2012. All rights reserved. The Power of Pain Foundation is a 501(C)(3) Charity.
Music
“Little Wonders” by Rob Thomas (Google Play • iTunes • AmazonMP3)
Published on Jul 12, 2012
This video goes through pictures of RSD/CRPS patients who have visual symptoms of their extremities (hands, arms,
legs and feet). RSD is a Neuro-Autoimmune condition which affects many aspects of the body. For more information
visit Power of Pain Foundation. Special thanks to Twinkle and Kurtis VanFleet, and singer Page Jackson.
Published on Aug 2, 2014
Faces of Pain Video – 6th edition for Power of Pain Foundation
Created by Twinkle VanFleet, Executive Board Member, Power of Pain Foundation
Spanish Translations by Vanessa Lara, California Representative, Power of Pain Foundation
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
“The researchers reported recent discoveries indicated there is an “autoimmune contribution,” to the condition, which often occurs after a small accident or surgery and causes pain that persists for several years.”
By Jacquelyn Gray | August 05, 2014
Click above for full article
(Pressed Post)
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I shared a similar article a bit ago to my Facebook and related pages. This one is 2 days old. It is a reminder that there is hope! ~T
2 of the girls are 15 years old with RSD, one is only 11 with RSD.
Please consider helping them reach their fundraising goals or by sharing their pages so that they might have an extra opportunity for better exposure. The girls will be featured by the Power of Pain Foundation’s Patient Fundraiser Program August 2014.
As a CRPS/RSD patient myself, I would like to help their pages get noticed too, get the care they need, even if in this small way, so that they might have a better quality of life moving into their adult and teen years. They are each at a precious ages with school functions to look forward to, dances, activities to enjoy. Without pain relief this will not be as possible as most take for granted. As adults it is hard enough, most of us have gone through life lessons to teach us strategies for survival. Adults can barely manage. I believe young ones have it much harder. They need life experiences, good memories to build on.
Their adult world comes soon enough.
Each parent will choose their child’s options, they may even decide on something else along the way…
Any recognition for Megan, Tori and Gracie is much appreciated.
Caregivers: Be mindful and assertive in caregiving. According to the Department of Pain Medicine and Palliative Care at Beth Israel Hospital in New York, a family caregiver is “anyone who provides any type of physical and or emotional care for an ill or disabled loved one at home”. For this definition, “family” refers to a nonprofessional who is called “family” by the person who is sick. Sometimes, family is whoever shows up to help. (IN the FACE of PAIN, 5th edition, page 40)
After the conference we popped the pain out of ’em! #painPOP
Lynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Twinkle VanFleet – Advocacy Director (powerofpain.org) and Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com).
The 8 key areas of the Patient’s Bill of Rights
RSD Advisory- Where Chronic Pain & Depression Collide 