Advocacy and Awareness: CRPS

Posted by twinklev

sad_facw_behind_a_smiling_face_by_mudabbirali-resized

Image Source: Sad Face Behind Mask by Mudabbirali

I had always maintained a level of balance when raising awareness for Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia. My role was to provide accuracy over inaccuracies. Identifying, evaluating and sharing diagnostic criteria for the diagnosis of CRPS. In addition was the difference between CRPS and CPS (Chronic Pain Syndrome) Chronic Pain Syndrome is a compilation of chronic pain complaints which can include RSD or Causalgia, yet is NOT a CRPS itself.

Complex regional pain syndrome occurs in two types, with similar signs and symptoms, but different causes: Type 1. Also known as reflex sympathetic dystrophy syndrome, this type occurs after an illness or injury that didn’t directly damage the nerves in your affected limb.

Complex Regional Pain Syndrome Type 2 (CRPS Type 2) is a severely painful response to a peripheral nerve injury. CRPS Type 2 is characterized by severe, burning pain affecting a specific area as a result of the nerve injury.

Approximately 90 percent of people with Complex Regional Pain Syndrome have Type 1.

The McGill Pain Questionnaire

McGill Short Form Pain Questionnaire

McGill Pain Questionnaire (MPQ)

The McGill Pain Index

The McGill Pain Questionnaire, also known as McGill pain index, is a scale of rating pain developed at McGill University by Melzack and Torgerson in 1971. It is a self-report questionnaire that allows individuals to give their doctor a good description of the quality and intensity of pain that they are experiencing.

This index is subjective. Subjective means that your pain and symptoms are based solely on what you define them to be. It contains no objective findings to establish any certainty whatsoever.

This index leads you all to believe you have the worse pain disease known to man. Above Cancer. The index describes “Causalgia” which the majority of the people with this syndrome do not have.

Upon reading this many of you will suddenly decide that you have type 2. If you didn’t have type 2 there would be less reason to be incurable and in so much pain.

Do you know how many people over the years who have been diagnosed with RSD suddenly changed their own diagnosis to Causalgia upon learning the difference? Too many.

This is why the research and documented statistics are flawed. This is why the healthcare system fails to help us and instead classifies many of you with Chronic Pain Syndrome or Somatic Symptom Disorder.

According to the respected Dr. Philip Getson “Current estimates suggest that there are between two and ten million patients with this disorder worldwide. It is my personal belief that if you subscribe to the theory that fibromyalgia is in fact not a distinct and separate entity but rather a sub-sect of RSD (as I do), that number can be as much as five times higher.” http://www.drgetson.com/reflex-sympathetic-dystrophy.html

This is because RSD and Fibromyalgia share similar subjective results (trigger points/pressure points) and complaints in addition to some objective shared findings. Overactive nerves instigated by stress. The Fight or flight response.

I can assure you that Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia can be drastically relieved and has the potential to be curable without drugs, sympathetic blocks, modalities or implantable devices.

I can no longer ascribe to the belief that CRPS is without possibility in healing. I’ll not tell people they’ll never get better, and I won’t be sharing the misinformation that advocacy groups expect of me. What I’ll share are the facts that surround this misunderstood syndrome and how we never have to end up disabled, sick, emotional and grieving over something that has a chance early on for an immediate remission, without years of failed treatments and medications and doesn’t ever have to lead to an end of no return.

I think I’ve proven that.

~Twinkle VanFleet, GohlProgram.com

Pain Drug Reaches Phase 3 Clinical Trials | Dallas Legal Examiner | Dallas Texas Personal Injury Lawyer

Posted by twinklev

Posted by Bryan Pope
June 7, 2016 8:55 AM

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.

Source: Pain Drug Reaches Phase 3 Clinical Trials | Dallas Legal Examiner | Dallas Texas Personal Injury Lawyer

Live On. Give On | 2015 Bakken Invitation Honoree | Pre-Review

Posted by twinklev

Week of January 11, 2016 (never shared)

As I get ready to fly to Kona, Hawaii for the Medtronic Bakken Awards, I’m trying to help myself overcome challenges related to traveling, weight bearing, pulmonary and sleep disorder issues. My breathing has been unstable this week, my head, neck, arms, and even female troubles have poked me in the side.

I had my appointment with my PMD yesterday to ask for considerations that might help me through as it’s becoming harder and harder to stay up on my own and maintain pain levels. I already put in for ADA assistance during the travel and at the hotel. Yet, I won’t allow myself to be confined to a wheelchair while there, so I’m carefully pacing myself so that my legs carry me. My Medtronic Spinal Cord Stimulator has been my pill for 10 years. I’ll be able to adjust for optimum relief, but to do so also means that I have to either not be on my legs/feet at that time or not raising my settings for added comfort. I learned a long time ago how to get the best out of it for me. I’ve also learned that there are times I have to trade relief for walking and I can’t always have both at the same time. I can set my stim to numb me, but because I am one of the lucky ones whose stimulation does reach the toes, increasing this setting can knock me off my legs. I reserve this for non weight bearing pain relief. This is not an adverse effect, but a plus and benefit that has to be noted and chosen to best fit my time and place.

My Auto Servo Ventilator is too big and quite heavy to carry, so I may have to go without it. Still working on that. Otherwise I’d be traveling with 2 medical devices and have little room for anything else.

At this time next week, we’ll have already landed and be apart of the meet and greet with each honoree, Medtronic and so many others. I’m looking forward to representing Power of Pain Foundation as the new International Pain Foundation, myself as honoree, each honoree for what they have also accomplished and given, advocacy, volunteering, my family, my closest friends, and Dr. Earl Bakken and Medtronic Philanthropy.

There are a few wonderful people and establishments I want to say thank you to for being apart of this with me.

The International Pain Foundation (IPF) #iPain – Previously known as the Power of Pain Foundation. http://powerofpain.org/

Sacramento Pain Clinic – Dr. Michael Levin – Since 2004. Not just a Pain Management Doctor, but a patient advocate going above and beyond his own job for his patients.)

http://www.sacpainclinic.com/sacpain.php

Jacob Chopourian, Therapy Representative, Pain Therapist, Medtronic Inc Neuromodulation, Sacramento, California. www.medtronic.com

(Jacob has been part of my surgical team. He’s also adjusted me as needed. When I had my 9 year battery replaced I donated back to Medtronic my carrying bag, handheld stim (my stim) case, charger, hip straps, antenna, and manuals so that someone who needed these items in whole or in part could have them. Jacob came to my home to pick it up. Amazing man.)

Katie Tamez, Clinical Specialist, Pain Therapy, Medtronic Inc
Neuromodulation. Sacramento, California. www.medtronic.com

(Katie has worked to fine tune me, too.) I’ve no longer needed the 3 programs I started with many years ago, sitting, walking, sleeping. I use a single program with pulse. Wonderful lady.)

Compass Center for Functional Restoration – (Dr. Michael Levin MD) Rick Wurster MSG, MPT, BCIAC http://www.sacpainclinic.com/compass.php

(The center that taught me all there is about pain, physically, emotionally and psychologically. How to live with it using the mind, spirit and body to overcome flareups and maintain a modicum of sanity. Because of them I’ve been able to teach others what they taught me and find some joy and laughter in pain.)

Western Dental – Elk Grove Florin Road, Elk Grove, California

Dr. Tooloei, Staff.

You did great. Thank you for trying before I left for Hawaii. Trying meant enough to me.

Trudy Thomas, Featured BlogTalkRadio Host of the Living with HOPE Radio show on the Body, Mind and Spirit Network.

http://www.blogtalkradio.com/thebodymindandspiritnetwork
So proud of you and all you’ve given, selflessly. Happy that we have each other and our friendship survives the things we can’t do anymore.
Honored to have been both your co-host and guest speaker and warmed that you will always be family. Thank you for being all that I can count on as honorific leader/admin of my group. I love you!

Roy, MD Junction – http://www.MDJunction.com (Honored to have lead your Reflex Sympathetic Dystrophy Support Group for years.

http://www.mdjunction.com/reflex-sympathetic-dystrophy

Glad to have lead the ADHD support group on behalf of the children and parents who needed someone to oversee it. Pleased to still be a Senior Member and
MDJ Advocate. Love you all!)

Barby Ingle, www.BarbyIngle.com
(Together we can! Together we will! And together we are! Through MDJ and Trudy we found each other. I’ll forever remember the ones who cherished me for cherishing them. All 3 of you! Onward I go with #iPain. I love you!)

My Mom and Dad(s) (I know my dad is watching over. Gone since I was 22. My mom and dad was married 25 years when I closed his eyes. My mom and dad have been married 20 years and dated prior to that. So Mr. Don Tresca has been my father just as long as my birth dad was. I pray I’ve honored them all evenly and fairly as their daughter. I love you!)

Erik, Kharisma, Rikki, Kurtis and De’Mantai (my 5 lights). (Awards and recognition is great but not if they are seemingly meaningless to those that it should have mattered most, too.
There’s so much I’ve advocated for on your behalf’s that you’ve never even seen. I know that it all gets stale at some point but if you only knew it was never more for someone else than it was for you. Seek and you shall find. love you! Ohana.)

I’m so glad Daddy saw, felt, and knows now. Sometimes it takes a miracle and that miracle came. It’s all good. Ask him ~winks

Annie-Marie Garcia (30 years! Time in between where we had gaps because life does that with work and loss. We don’t want to add burden to those we love or stomp on someone else’s, okay. That’s what we tell ourselves at least. I’m glad I got you now in the illness you should have never ended up with. I wish I was there when you were first going through it and if only I had known. Lets never let anything separate us again. For you and I, we have something special, we can see each other every day, or have weeks, months or years go by, but we always know that when it comes down to it, we are the ride or die. I love you!)

Maryann Kupidlowski Stafford (My sister since our babies were babies. Young teen daughters. If we weren’t there together we would have never met. Your curiosity, my extended learning, teaching. We both did, and we both gave, mine was just for extending natural order A decade? 12, 13. Time flies. Here we are moving forward in light, love and tomorrow. I love you!)

PK Saint-Amour (Bruja, pain, strength and the sight. Light and the “F’off. I so love you for being courageous in all of it. I’m so glad that you’re my sister in knowledge and fight. I love you!) https://www.facebook.com/groups/InvisibleWarriors/

Eileen McCready (A long time now too, background, foreground, compassion and understanding beyond pain. Sister of mine, always. I love you!)

Saskia Hubelmeijer (My international sister who does all she can in the Netherlands despite pain and hardship, and for America, too. Who’s assisted in leading my group since 2011, as formal admin and informal I love you!)

Billy Rose (Thank you brother for leading light and love above pain and hurt for all people. You demonstrate what the world needs more of and you are providing the change needed to overcome it all again) I love you!

The Council (We are who we are and one day when the earth is over, or death takes us, we’ll still be us, together, teaching, giving, inspiring, awakening those asleep all in their own time) I love you all. http://www.councilofenlightened.org/

The Sacramento News & Review (For featuring my voice and passion over 20 years ago) November 17, 1994, Speaking Out Edition) https://rsdadvisory.com/2015/07/24/sacramento-news-review-november-17-1994-speaking-out/

https://www.newsreview.com/sacramento/home

ECV Chapter 3 (Clampers/widders) E. Clampus Vitus was established in 1849.

http://ecv3.net/ http://www.ecvgazette.com/

(In memory of IRJR http://www.irjr.com/, a great man, friend, Clamper, who many years ago when founded Widders Web honored me with his chat program instead of the one I was using for us, I used his to then honor what he started years previous to that. http://www.irjr.com/widderschat/ While the pages are currently not found and the chat needs updating, I wanted to thank him again. Mr. IRJR is no longer with us.

SPPAN (State Pain Policy Advocacy Network) (I hope we continue on)

RSD(S)-CRPS Advisories

(Founded by me, for you)

—————

Refer to December 27, 2015

https://rsdadvisory.com/2015/12/23/twinkle-vanfleet-2015-honoree/

To be continued!…

The best is yet to come.

Twinkle VanFleet, 2015 Bakken Invitaton Honoree, Sacramento CA, #iPain, with Dr. Earl Bakken Medtronic Co-Founder, Kona Hawaii. Awards reception. January 16, 2016.

http://bakkeninvitation.medtronic.com/honorees-winners/

http://bakkeninvitation.medtronic.com/honorees-winners/2015/twinkle-van-fleet/index.htm

http://newsroom.medtronic.com/phoenix.zhtml?c=251324&p=irol-newsArticle&ID=1822170

http://newsroom.medtronic.com/phoenix.zhtml?c=251324&p=irol-newsArticle&ID=2122319

http://www.nasdaq.com/press-release/the-medtronic-bakken-invitation-award-honors-12-patients-from-around-the-world-for-giving-back-20151214-00566.

http://www.otcmarkets.com/stock/MDT/news

Thar Pharmaceuticals drug to undergo phase 3 trial | Pittsburgh Post-Gazette – #CRPS

Posted by twinklev

January 21, 2016

By Kris B. Mamula / Pittsburgh Post-Gazette

Thar Pharmaceuticals Inc. has received Food and Drug Administration approval for phase 3 clinical trials of its core product, dubbed T-121. Marketing of the oral drug, which will be used to treat severe, persistent pain, is expected by 2019, according to President and CEO Raymond Houck.“Getting to phase 3 is a big deal,” said Mr. Houck, 58.Phase 3 trials last up to four years. The test is intended to gauge a drug compound’s effectiveness, according to the FDA. Only 25 percent to 30 percent of drugs reach phase 3.Thar, which was founded in 2008 and employs seven people, is targeting complex regional pain syndrome, a condition that usually follows a bone fracture, serious burn or other trauma. About 70,000 people nationwide experience such pain, which can abate over time or become a disabling condition.There are no Food and Drug Administration-approved treatments for the pain. Thar 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. Historically, big drug companies have shunned diseases that affect few people, focusing instead on making the next blockbuster statin, a medication taken by millions of people for high cholesterol.But Big Pharma has been increasingly paying attention to orphan disease treatments because of the potentially big paybacks for new prescription medications. Thar is not yet profitable and funding for operations has come from private investors.Thar’s focus is converting intravenously administered medications into ones that can be taken orally, preferred by health insurers because oral drugs are less costly to administer. Patients also tend to prefer oral drugs because administration is noninvasive.Thar’s T-121 is an oral version of Novartis’ intravenous-only zoledronic acid, which is sold under the Zometra brand name and prescribed to prevent or treat weakened bones and other conditions. Zometra’s safety record is expected to further speed FDA review of Thar’s oral version, Mr. Houck said.

Read the full article for more information:

Source: Thar Pharmaceuticals drug to undergo phase 3 trial | Pittsburgh Post-Gazette

Mid Metatarsal Separation | Lis Franc Separation

Posted by twinklev

“Lisfranc joint injuries are rare, complex and often misdiagnosed. Typical signs and symptoms include pain, swelling and the inability to bear weight. Clinically, these injuries vary from mild sprains to fracture-dislocations. On physical examination, swelling is found primarily over the midfoot region. Pain is elicited with palpation along the tarsometatarsal articulations, and force applied to this area may elicit medial or lateral pain. Radiographs showing diastasis of the normal architecture confirm the presence of a severe sprain and possible dislocation. Negative standard and weight-bearing radiographs do not rule out a mild (grade I) or moderate (grade II) sprain. Reevaluation may be necessary if pain and swelling continue for 10 days after the injury. Proper treatment of a mild to moderate Lisfranc injury improves the chance of successful healing and reduces the likelihood of complications. Patients with fractures and fracture-dislocations should be referred for surgical management.

The Lisfranc joint, or tarsometatarsal articulation of the foot, is named for Jacques Lisfranc (1790–1847), a field surgeon in Napoleon’s army. Lisfranc described an amputation performed through this joint because of gangrene that developed after an injury incurred when a soldier fell off a horse with his foot caught in the stirrup.1,2 The incidence of Lisfranc joint fracture–dislocations is one case per 55,000 persons each year.2,3 Thus, these injuries account for fewer than 1 percent of all fractures.2,3 As many as 20 percent of Lisfranc joint injuries are missed on initial anteroposterior and oblique radiographs.2–4

Lisfranc joint fracture–dislocations and sprains can be caused by high-energy forces in motor vehicle crashes, industrial accidents and falls from high places.1–3 Occasionally, these injuries result from a less stressful mechanism, such as a twisting fall. Since Lisfranc joint fracture–dislocations and sprains carry a high risk of chronic secondary disability,2 physicians should maintain a high index of suspicion for these injuries in patients with foot injuries characterized by marked swelling, tarsometatarsal joint tenderness and the inability to bear weight.” Lisfranc Injury of the Foot: A Commonly Missed Diagnosis (Para 1, 2, 3) http://www.aafp.org/afp/1998/0701/p118.html

CRPSRSD Awareness Twinkle V. @rsdcrpsfire - R Foot Nov 10, 15_1

Twinkle V. CRPS 2 November 10, 2015 DOI 1/26/2001

From misdiagnosed to a hell ride I’m still on, I’ve managed to find a glimpse of heaven in it all because I do work with me so that I’m not a total disappointment on myself or society. A bit over a week ago I was banned from Facebook. I had to provide documentation of proof of identity to return. I could have declined, but I was in a tight spot having a group there. Facebook’s policy is that everyone is to use the name they are known as offline, on Facebook, so that others know who they are. Sure we might say well if I’m known as this or that I should be able to use this or that. I hope people stay off me now. I’m me and I’m tired of having to prove it. We all know how many incognito accounts are on there. How many fake names, symbolism. People who have more than 3 accounts of various sorts. I have one account, I’ve never had another. Ever! I’ve always used my name. Once I was blocked, I had to verify me before being allowed full account privileges again. I was temporarily granted access back once I sent the document.

I’m Twinkle, I’m verified, (and proven myself yet again) and I hope that now that I have, who ever reported me, and each of you who want to refer to me as something different will either leave me be or respect that I haven’t ask you the same, or violated your privacy, or attempted to humiliate you, but instead realize that your actions have impacts.

Perhaps I should ask for your identification online and in person.

Between the diagnosis’ obstacles, I still manage to put in a few hours a month volunteering because it’s important that we find consistent tasks and daily agendas. When I’m not doing those things, I’m inclined to spend time in creative arts, things that have nothing to do with chats, Facebook, or social media until which time I might either post to share or keep to myself for another day. I love music and words and I love pieces and parts of all of it. I know the time is coming I won’t be able to stay up on my own anymore. Doze off all day long because you have the excessive daytime sleepiness and narcoleptic episodes, but you don’t sleep at night because you have the complex apnea, your brain doesn’t even send the signal for you to breathe, and your machine forces you to breathe all night long. None of which counts the numerous times you wake too because your spine has deteriorated, your legs are CRPS crazy, your arms fail you, and you just want to get comfortable. You have at least 10 + other diagnosis (internal and organ) and refuse to be beaten!

Each time the foot reaches the ground, pain isn’t just pain, you’re immediately in your head (coping), no reason to whine or complain. It certainly isn’t a reason to want to use pain medication, but it’s the very reason I know pain, understand it, and feel it for others beyond what I knew prior. It’s the very reason I do what I do. Remove the survival, you remove the very reason for living. Only so much can be done solo.

So when I say I did that first near 9 months of intense PT just to have “learned” to walk again? Truth! When I say I push through it each day? Truth! When I say intractable, forever? Truth! The Lis Franc screw remained for 6 months before removal and rehabilitation. My journey hadn’t even started yet at that point. Even in the still, you have to use your mind to bring it down. Every day is ongoing physical rehabilitation with cognitive assists.

The only chance I had was the one I gave myself.

I think I’m doing pretty darned good for doing so darned bad.

Mid Metatarsal Separation/Lis Franc Separation

http://orthopedics.about.com/cs/footproblems/a/lisfranc.htm

Lisfranc Injury of the Foot: A Commonly Missed Diagnosis

http://www.aafp.org/afp/1998/0701/p118.html

Lisfranc Injuries

http://www.foothealthfacts.org/footankleinfo/lisfranc_injuries.htm

Making Complex Regional Pain Syndrome Simple For a Jury

Posted by twinklev

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.

Find out more about:

What Causes CRPS?

CRPS Diagnosis and Prognosis

How to Deal with Conflicting CRPS Diagnoses

Voir Dire Tips in a Pain Trial

Experts: Get the Dream Team

Dealing with the Defense “Expert”

Making it Simple

via Making Complex Regional Pain Syndrome Simple For a Jury.

COMPLEX REGIONAL PAIN SYNDROME

THE RELENTLESS PURSUIT OF JUSTICE

Complex Regional Pain Syndrome: The Relentless Pursuit of Justice

Causes

Symptoms

Diagnosis and Risk Factors

Prognosis and Treatment

Lawsuits and Damages

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

PHONE 877.800.1700

FAX 310.477.1699

Brain alterations and neurocognitive dysfunction in patients with complex regional pain syndrome

Posted by twinklev

April 2015

Highlights

•Significant cortical thinning in the prefrontal cortex was observed in CRPS patients.
•Patients with CRPS made significantly more perseverative errors on the WCST.
•Patients with CRPS showed significantly longer stop-signal response time.
•The alterations may explain executive dysfunction and disinhibited pain perception.

Abstract

Few studies have examined the involvement of specific sub-regions of the prefrontal cortex in complex regional pain syndrome (CRPS). We analyzed cortical thickness to identify morphological differences in local brain structures between patients with CRPS and healthy control subjects (HCs). Furthermore, we evaluated the correlation between cortical thickness and neurocognitive function. Cortical thickness was measured in 25 patients with CRPS and 25 HCs using the FreeSurfer method. Pain severity and psychiatric symptoms were assessed using the Short Form McGill Pain Questionnaire and the Beck Depression and Anxiety Inventories (BDI and BAI), respectively. Neurocognitive function was assessed via the Wisconsin Card Sorting Test (WCST) and the stop-signal task (SST). The right dorsolateral prefrontal cortex (DLPFC) and left ventromedial prefrontal cortex (VMPFC) were significantly thinner in CRPS patients than in HCs. CRPS patients made more perseveration errors on the WCST and had longer SST reaction times compared with HCs. Although BDI and BAI differ significantly between the groups, they were not correlated with cortical thickness. Our study suggests that the pathophysiology of CRPS may be related to reduced cortical thickness in the DLPFC and VMPFC. The structural alterations in DLPFC may explain executive dysfunction and disinhibited pain perception in CRPS.

Complex Regional Pain Syndrome | Diagnosis using the Budapest Criteria – Specialist Pain Physio Clinics

Posted by twinklev

The Budapest Criteria should now be used to diagnose Complex Regional Pain Syndrome (CRPS):

A: The patient has continuing pain which is disproportionate to the inciting event

B: The patient has at least one sign in two or more of the categories

C: The patient reports at least one symptom in three or more of the categories

D: No other diagnosis can better explain the signs and symptoms

Sensory: Allodynia (to light touch and/or temperature sensation and/or deep somatic pressure and/or joint movement) and/or hyperalgesia (to pinprick)

Vasomotor: Temperature asymmetry (more than 1 deg.) and/or skin colour changes and/or skin colour asymmetry

Sudomotor/oedema: Oedema and/or sweating changes and/or sweating asymmetry

Motor/trophic: Decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair/nail/skin)

Signs – see or feel a problem

Symptoms – patient reports a problem

via Complex Regional Pain Syndrome | Diagnosis using the Budapest Criteria – Specialist Pain Physio Clinics.

Additionally –

Validation of proposed diagnostic criteria (the “Budapest Criteria”) for Complex Regional Pain Syndrome.

Shared previously

Ask the Expert: Complex Regional Pain Syndrome (CRPS)

Online Health Chat with Michael Stanton-Hicks, MD

April 30, 2014

Understanding Diverticulosis

Posted by twinklev

On April 1st I had another procedure to assist in finding out why the symptoms in my belly have worsened over the last year. It wasn’t a routine procedure. Prior to 2013, I was having upper stomach pain that came and went. Held at a 3/4 on average and would rise to a painful 8/9 until I ended up in the Emergency Department at a hard 10 and was admitted for emergency surgery to remove my grossly diseased Gall Bladder. So that I don’t go back into all that, those posts can be found here and ending here for the most part. My stomach never did get better. I was diagnosed with Gastritis during the ERCP in 2013 after my first Gall Bladder surgery, so I knew I had the issue of inflammation around the stomach lining. Reducing fat intake didn’t seem to make a difference, but I’ve kept to low to no fat on a regular basis. My kidney’s are no longer in the greatest shape, but they are functioning. The issues that took me back to the same Gastroenterologist was bleeding, pain, and months of diarrhea, after years of constipation. My tailbone has been clicking in and out-of-place for over a year more and more frequently. Worse when getting up from a sitting position or when on the toilet. I thought it might be due to the Osteoarthritis of the Lumbar Spine diagnosis I’ve had.

I knew I could also feel something inside me when going to the bathroom. As it turns out there was and it was removed during the Colonoscopy. I was diagnosed with Diverticulosis in the recto-sigmoid colon and in the sigmoid colon with colonic spasm. The 3 mm polyp in the sigmoid colon was resected and retrieved. Internal hemorrhoids were found as well, I think many of us have those, either internal or external. Either from constipation, strain or from having babies. I haven’t received the biopsy results yet. I am not worried about that, I’m just glad to have the annoyance out of me. Severe diarrhea has complicated things to the point my legs have a hard time carrying me to the bathroom several times a day and during the night. It’s unfortunate that sometimes there hasn’t been time to get there and I’m closest to the bathroom I can be. That symptom still nags me. I’ve been relying on my Spinal Cord Stimulator even more using it to mask the discomfort around my mid section as well as my legs. Newer reports suggest fiber isn’t as beneficial as previously thought but that mesalamine might be. This September 2014 Mesalamine for Recurrent Diverticulitis Prevention: Results from Phase 3 Controlled Trials report doesn’t seem promising. Everything else is invasive at the critical point. I gained a horrible amount of weight the last 2 years with little to no change in activity or eating habits. Swelling in my face is often, gray color to my facial appearance, a look of black eyes. My stomach extends to the point of looking like there’s a hill-top on one side or so swollen I’m harvesting a human in there. It makes sense now why the area where my Gall Bladder use to be has never stopped hurting. I’ve learned to deal with it and gastritis, the only time it knocks me down some is during a flare up. What I couldn’t fully grasp was all the extra that sprung up along with it.

Sigmoid Diverticulitis- A Systematic Review

Diverticular Disease of the Colon

The Colon

Over 14 years of CRPS type 2 from a mid-metatarsal separation. I’ve had several lesions removed from my liver, my kidney’s have declined, my uterus lining is inflamed, diagnosed by ultrasound and surgery, with a suggestion to have a hysterectomy. Stomach lining inflammation, and now colon inflammation confirmed. I’ve had an infection for over 2 years. My white blood cell count has been elevated above normal range. I’ve been treated for high blood pressure for a few years now with Lisinopril and recently put on Hydralazine for when it gets above 180/. Maybe a course of antibiotics will help my belly. I still have to followup. I was given 12 photos of my insides after procedure. I’ve been extremely Vitamin D deficient for years now with only 1 testing where I made it into the normal range. My blood is monitored every 4 months.

I have another report that will be ready on the 15th of the month. This one may have CRPS documented as part of the cause. It was at the feedback session. I underwent those tests awhile ago. Still have a few things to work on in regards to the sleep disorders, narcolepsy, brain, brain stem and other issues, but things are moving a long. I’ve been using an Auto Servo Ventilator for about 3 years for OSA, CSA with Cheyne Stokes. It hasn’t helped with the EDS, it has helped with breathing. It’s ability to record every breath I take, don’t take, deep breaths, short breaths and so much more is amazing.

I don’t contribute everything to CRPS, I know that it is part of what’s going on. If doctors aren’t going to consider them related and document it then how can I? I could never go to a new physician and say my insides are coming apart do to CRPS and them ask “who told you that?” and me say “I did”. I’d get laughed right out of the office or not taken seriously about what really might be true and most likely is. That’s why continued awareness, research, documentation, diagnosis’ and timelines are so important. There are many other’s who have developed similar health issues. If we help educate then eventually documentation will take place. We know there is literature to support internal organs being affected, but hardly any providers recognize it.

I’m not sure yet what the plan will be. I should know more this upcoming week. I need to verify too. My procedure photos I came home with are copies. In the copies it shows areas of white outs, white space and white dots, so on film that would look different. I need clarification. I just keep bleeding. JP drain in 2013 for internal bleeding, a hemorrhage during wait period for second surgery months later and during the surgery and again more bleeding. Hurt, hurt and hurt.

But what do we do..

.. We go on.

Power of Pain Foundation Co Sponsor Assembly Bill 623

Posted by twinklev

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.

Legislation to Curb Prescription Drug Deaths Unveiled

Published on Mar 26, 2015

(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

Watch the Press Conference on Assembly Live

My speech-

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.

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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.

Press Release Article Tuesday, March 24, 2015

Legislation to Curb Prescription Drug Deaths Unveiled by Assemblyman Jim Wood

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For more information on the Power of Pain Foundation’s Policy Efforts, please visit-

Power of Pain Foundation | Policy Efforts | PatientAwareness.org

-Friday March 20, 2014 Episode of

The Burning for a Cure show

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

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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.