Multidisciplinary Treatment – Three Weeks in Utah

Written by Aubrey Haley for the RSDSA blog.

In 2013, after living with full body CRPS for almost four years, I was afforded the opportunity to go to a treatment facility. My husband and I dug deep into the multidisciplinary treatment world, searching online and making phone calls for days. I knew I didn’t want to be checked into a rehabilitation hospital. Likewise, I didn’t want to be treated like a drug addict or a psych patient; I needed a facility that understood the intricacies of chronic pain. The Bridge Health Recovery Center kept popping up on my Google searches, like a sign from the universe. I was terrified to leave my family for almost a month, but I was desperate to treat the disease that was ruining our lives.

After a lot of research, we were certain The Bridge was the right place for me. The concept of multidisciplinary treatment is to incorporate physical, mental and emotional therapies to tackle chronic illness from every possible direction. The way The Bridge program accomplishes this is what sets it apart from other multidisciplinary treatment centers. The day after my arrival in Utah, I had a doctor’s appointment for an exam, blood work and medication review. Each morning, we went on a walk at 7 a.m. Our short walks gradually turned into several mile hikes by the time the session ended a few weeks later. This was important to me because reconnecting with nature was an essential aspect for my recovery and the part I was afraid of due to my mobility issues. Our daily routine included individual Talk Therapy, Physical Therapy, Personal Training, Chiropractic Care, Reiki and Cranial Sacral Therapies.  We had several group sessions with professionals discussing topics like goal setting, relationship management and self perseverance. The program included presentations by a survivalist, a life coach and a personal chef, along with volunteering, drum circles, wild mustangs and art and music therapies.

On Sundays, we were encouraged to journal, do laundry or attend a church service of our choosing. Gradually, I realized I had been harboring a lot of underlying anger and bitterness towards my CRPS because my disease was caused by an accident that was someone else’s fault. Furthermore, as a wife and mother, I had been careful not to express my emotions out loud for fear they would show my weakness or impact my family, although they were manifesting in other areas. The Bridge program allowed me to dive into emotional areas I’d been hiding for years. Being able to explore my feelings and address my weaknesses freed me from the negativity that was feeding my disease. At the end of the three weeks, we each made a list of things to eliminate from our lives and threw them into a bonfire, representing the negativity we were letting go.

The Bridge program only works if a guest is open to the process. I arrived with a lot of faith and hope, though, I had no idea how the program would work for me. By the end of the session, I learned I had the ability to tap into the mental aspect of a disease many insist is not “in the head”. I had to let go of the emotions that were holding me back from a healthy future. Finally, I understood fear, anger and bitterness were fueling the feedback loop that was triggering my disease. Once I was able to put the mental, physical, emotional and spiritual pieces together, I managed to gain control of my “incurable CRPS”, changing my life for the better.

Follow Aubrey’s blog, “Fighting With Flarefightingwithflare.blogspot.com to read more about her adventures with CRPS, healthy lifestyle and life as a wife and mother of four daughters.

Please consider making a donation to RSDSA today!

Workers Compensation 101: An Overview of WC for Employees With Work-related CRPS

Written by R. Steven Shisler, Esq. for the RSDSA blog

Workers’ compensation (WC) laws generally vary from state to state. As I am admitted to practice law in Pennsylvania, this article only will address WC issues in accordance with Pennsylvania law. Explanations of the law and recommended strategies are not applicable to those whose claims fall outside of the Pennsylvania Workers’ Compensation Act (PWCA). Also, because strategy and professional judgment are fact specific and may vary among claims, this article is written for your general knowledge only.

Lastly, if you are seriously injured at work, and especially if this results in CRPS, I strongly suggest that you retain an attorney as soon as possible after the injury. It is simply too dangerous to pursue your claim without counsel. Regardless of your relationship with your supervisor and the company, remember that your employer’s insurance carrier controls the WC benefits and is most concerned about paying as little as possible. The attorney you retain must represent claimants (employees) in WC matters and also should have some knowledge of CRPS.

Justice

In my first year of law school, my contracts professor “set up” a fellow student. Proper application of the law in accordance with the facts of the case resulted in a horrendous and unjust ruling. When the professor asked how the student felt about the Court’s conclusion, she said she understood that this was a proper application of the law; but the result was unfair. The professor nearly went berserk. He shouted, “Fair? Young lady, the law is the law and justice is justice; and if you want justice, go across the street!” and he pointed toward the divinity school where future priests were taught.

I usually tell this story to new clients, and I advise them that I cannot obtain justice for them; my job is to maximize their recovery (benefits) within the boundaries established by the law. It is nothing more than a high-stakes chess game.

Benefits

In order to establish a right to compensation under the PWCA, you must be employed and have been injured at work in a work-related accident. You do not have to prove your employer negligent, only that you sustained a work-related injury.

Benefits consist of earnings loss benefits for total or partial disability, medical benefits, specific loss benefits, death benefits, and illegally employed minors’ benefits, and may include an award of interest, costs, and attorneys fees to be assessed against the employer for unreasonable contest of the claim.

A compensable injury under the PWCA must leave you disabled (an inability or limited ability to work) leading to a loss of earning power, which is determined by your average weekly wage at the time of injury. You are entitled to 66.6% of your lost earning power, with a specific top and bottom compensation rate.Most WC claimants who suffer work-related CRPS have difficulty understanding the limitations of WC benefits. They have heard of large settlements in other types of cases and believe that their extreme pain and suffering should account for a high settlement. However, the PWCA does not provide for, nor are you entitled to, compensation for pain and suffering. It doesn’t matter whether you had a great future and you can no longer do your former job. If you can work at any job, even one not available at your former workplace, and if you can earn the same weekly wage, you are no longer entitled to WC earnings loss benefits. This means that if you have CRPS in all four limbs but can do any job within your usual employment area (generally within 30 miles from your home) such as testing chewing gum or mattresses in your home, you are not totally disabled. If these other jobs pay the same as your pre-injury wage, you can lose your benefits.

Pain and suffering is recoverable in negligence cases, but not in WC matters. Moreover, the PWCA is the sole remedy you have. This means that even if your employer or a co-worker caused your injury through negligence, the company, its workers, and even the company’s WC insurance carrier are immune from a negligence lawsuit. However, if your employer or its insurance carrier violates the PWCA, your attorney should file a Penalties Petition. The employer may be assessed penalties in addition to any unpaid compensation (up to 50% of unpaid, overdue, or illegally suspended compensation; statutory interest and/or attorneys’ fees for unreasonable contest).

You are entitled to be paid for reasonable and necessary diagnosis and treatment. The question is: “What is reasonable and necessary?” If you seek medical treatment far away, and the same type of physician, e.g. neurologist, pain management physician, is practicing within a reasonable distance from home, the insurance carrier is not required to pay for the longer-distance treatment. Moreover, if you have CRPS and you can travel a distance for treatment, it will likely harm your case. The argument can be made that if you can sit for the length of time required to travel, then you can do work that is sedentary and has limited use of your hands, such as answering telephones using a headset.

The insurance carrier will likely deny payment for any treatment that may be even slightly unusual, such as a ketamine drip or acupuncture. In some cases, such as surgery for the implantation of a morphine pump or spinal cord simulator, the hospital may require pre-certification approval by the WC insurance carrier. The carriers often deny pre-certification. Additionally, if your CRPS has spread, the insurance carrier may deny the claim as being unrelated to the original work injury. Finally; because of the bad press on OxyContin®, I have noticed that insurance carriers are often refusing to pay for the drug. In the meantime, as medication and payment for treatments are denied, the patient’s CRPS and pain become aggravated and often spreads and the injured employee becomes frustrated and lost. The insurance carrier may take advantage of this denial to influence your settlement decision.

Finally, you may be entitled to benefits for the specific loss of the use of a limb. This can mean actual amputation, or simply the inability to use that limb. For example, if you had four fingers amputated by a snow thrower and those fingers have been reattached but are unusable, you may be entitled to benefits for specific loss of those fingers or even the hand. The benefit amount and payment for an appropriate healing are set forth in the PWCA.

The Petitions

WC issues are not decided by a jury but by a WC judge employed by the Commonwealth of Pennsylvania Department of Labor and Industry. The claim may never reach a judge. The employer files a Report of Occupational Injury with the Department of Labor and Industry, Bureau of Workers’ Compensation after being notified of the injury. It is imperative to report your work-related injury to your employer immediately following the injury. Failure to do so may result in your claim beingpermanently barred. No compensation is paid the first seven days, but if disability lasts at least 14 days you are entitled to WC earnings loss benefits, retroactive to the date disability began. Your employer then has 21 days after receiving notice of the disability to pay WC earnings loss benefits. If the employer hasn’t paid, file a Claim Petition for compensation benefits and a Penalties Petition seeking penalties, interest, cost, and attorney’s fees, with the Bureau of Workers Compensation.

Many CRPS sufferers continue to work despite their pain and the detriment to their health and their claim because of financial concerns. If you cannot work without pain, you and your physician should strongly consider whether you arc able to work.

After a Petition is filed, there will be a number of court appearances, some of which will involve only the attorneys. The burden of proof is on you to prove that you have suffered a work-related injury and that you are disabled and can’t return to work. This is done with your testimony as well as that of your physician and other witnesses.

Often, you may feel that your attorney is doing nothing and that an unreasonable period has passed without any benefits being paid. Unfortunately, this is the nature of the system. Schedules-the judge, attorneys, and physicians-play a large part in the time involved.

After the taking of evidence, the judge will issue a briefing schedule, giving your attorney several months in which to write his brief, which is akin to a written closing argument. Then the defense will have the same amount of time to write a responsive brief. After the briefs are filed, the judge’s workload determines when an opinion is issued.

Unfortunately; there is little you can do to expedite this process. Your attorney can object to any time extensions requested by the defense and request that the judge limit the time for submission of evidence or briefs. The judge decides whether to do so or not. As a last resort, if you have been denied benefits, you may have to turn to public assistance, or welfare, for survival monies and medical assistance while your claim is in process.

As in all injury cases, the defense takes advantage of the delays inherent in the system to manipulate you. Your employer may attempt to force you to accept a lower settlement. Remember, your employer has no incentive to settle until the case reaches a point where all of the evidence is admitted, and the insurance carrier feels there may be a high risk of losing the case. The law does not force either side to settle the case.

Settlement amounts in WC cases are generally low, since they are based wholly upon negotiations regarding how long you will be disabled and whether you will be totally or partially disabled. Additionally, the PWCA caps the length of time you may collect WC benefits for partial disability.

Your employer is also entitled to insist on a complete settlement of the claim, including future medical benefits. If you have CRPS, you should be very cautious about any such settlement, and agree to it only if you have no choice.

After negotiations are final, your attorney will file a Petition to Seek Approval of a Compromise and Release Agreement. At the hearing, you will be questioned by your attorney; the judge, and/or defense counsel to make sure you understand the ramifications of settlement. In the event that any of your medical bills for work-related injuries have been or may in the future be paid by Medicare, you must make arrangements with Medicare to reimburse them for past and future bills from your settlement.

As mentioned previously, you are entitled to payment of reasonable and necessary medical bills for diagnosis and treatment. If you are denied medical treatment or your bills aren’t being paid, respond promptly. If you have medical insurance coverage and have been denied by the WC insurance carrier, your attorney must direct your healthcare providers to submit the bill or pre-certification request to your private insurance carrier.

In the case of an HMO, the primary care physician must first make the referral. In conjunction with the referrals and submissions, your attorney should tell your medical insurance carrier you have been denied by the WC insurance carrier and remind the medical insurance carrier that it is required to approve and/or pay for the treatment and seek subrogation, or recovery of the medical carrier’s payments, from the proceeds of the WC case.

Your attorney should also file an immediate Review Petition, asking the judge to review the medical issues and enter an Order regarding the denied medical treatment. Your attorney should also file a Penalties Petition referencing your aggravated CRPS, which may have occurred as a result of being denied medical treatment, and the increased stress and resultant threat to your health from denied medical care.

Your attorney should request a hearing on an emergency basis in the letter submitting the Petition to the Bureau of Workers’ Compensation for filing. Additionally, the attorney should write to the judge and request an emergency hearing on an expedited basis.

If your medical insurance carrier delays accepting the claim, you can threaten to sue for breach of contract and insurance bad faith. You can put pressure on both workers compensation and the medical insurance carriers by filing a complaint with the State Insurance Commissioner for violation of the Pennsylvania Unfair Insurance practices Act. However, this only leads to investigation and possible punishment by the State Insurance Commissioner and does not give you a private cause o action against the insurance company.

As a last resort, if you have been denied benefits, you may have to turn to public assistance, or welfare, for survival monies and medical assistance while your claim is in process. Public assistance will have a lien against any WC proceeds that you may ultimately obtain. You may also apply for Social Security Disability Benefits and/or supplemental Security Income; however these benefits are customarily denied and the appeal process may take a year or more. If you are receiving WC benefits, the amount of social security benefits will be reduced. Additionally; qualifying for Social Security Disability does not determine the right to we benefits, or vice versa, and receiving Social Security will likely be deemed inadmissible in the WC case; it certainly doesn’t hurt to attempt to have it admitted.

Suspension of Benefits

If you are receiving WC benefits, sooner or later your employer will me a petition to modify; suspend, or terminate your benefits. The process begins with the “independent medical examination.” Your employer can request that you undergo a medical examination by an employer chosen physician twice a year. In reality, there is no such thing as an independent medical examination; it is a defense medical examination by a physician who receives large sums of money from insurance carriers for conducting these exams, and who is likely biased toward the carrier Based on the restriction, or lack thereof, as determined by the physician, the carrier will have you submit to a vocational examination, after which a report will be issued indicating whether there are any jobs in your geographic area you can perform within the established limitations. Rest assured, the vocational expert, hired by the insurance carrier, will always find jobs you can do. The employer does not have to prove that the employee would be hired for any of these jobs.

Now the process for terminating your benefits begins. This must be countered with medical testimony contradicting the defense physician, you must testify regarding your limitation and perhaps there would be testimony from another vocational expert.

If you do not submit to the medical examination or the vocational interview; your employer’s carrier will me a petition to compel you to do so. After the examinations and reports are completed, your employer will file a petition to suspend, modify; or terminate benefits.

Liability Actions

Your attorney should leave no stone unturned in the search to determine whether an outside party, aside from you employer or a co-worker, also may be liable for your injuries and damages. This could include delivery people, a company contracted to clean and wax floors, the driver of another vehicle in a work-related car accident, or manufacturers, distributors, and vendors of defective machines. These related claims are not governed by WC law. If you are injured as a result of a negligent third-party, or manufacturer, distributor, and/or vendor of a defective machine, you are entitled to damages for pain and suffering, payment of all or a percentage of lost wages, depending on the type of case, and payment of all and/or a percentage of your medical bills. Additionally; your spouse may be entitled to recovery for loss of consortium, which includes society, services, and companionship. The WC carrier, any medical insurance carrier who paid for the accident -related injuries, and the Department of Public Assistance/Medicare, may have a lien against any third party recovery and must be repaid. Failure to do so may result in legal action against you, your attorney, or both. Additionally; any lien holders must deduct from their lien, at least a pro rata share of attorney’s fees and costs incurred in pursuing the liability claims and may be willing to negotiate additional reductions in the amounts they accept as payment in full of their liens.

R. Steven Shisler, Esq., is an attorney whose practice concentrates in plaintiffs’ personal injury, malpractice, and WC matters involving CRPS. He is an CRPS survivor, whose desire to become an attorney was motivated by his own injuries, including CRPS, resulting from an accident.

CPRS is a Game of Wack-a-Mole

Anastasio Head ShotI want to introduce you to Diane Simonson, a first-time walker in this year’s walk.

I am a former ballet dancer. In 2006, I began to have problems with my legs. I was tested for MS, Lou Gerhig’s Disease, and everything else under the sun. As many of us have experienced – doctors told me I was ‘faking’ it, and it was ‘all in my head.’ (Yes, I can magically make my legs swell to twice their size and make skin color changes! I ‘m an amazingly good faker!) Finally, I was diagnosed with CRPS/RSD in 2009 .I was also very, very fortunate to find doctors (a neurologist, two orthopedics, a pain management doctor) at HSS who still work together as a team to support and monitor me to this day.

I made the decision early on to not have any procedures done – no spinal stints, no Ketamine therapy -nope. Just some medication. When I told my doctors I was going to walk again, some looked sad and said “We don’t know a lot about this illness”, or told me not to get my hopes up too high. One doctor told me that my time would be better spent learning how to cope with this change in my life. (Not an HSS doctor!)

It began in one leg, but soon spread to the other leg, both arms, and left ribcage. I could not bend my head forward enough to brush my own teeth. There was one point where I decided to ask to have both legs amputated. (Thank goodness I didn’t!) It took me three months to get my legs to bend so I could get into a wheelchair – probably the second most happy day of my life…to be pushed through the park – out in the green for the first time in months…I still get teary-eyed thinking about that.

Two to three hours of therapy every day on my own, and several years of PT visits twice a week. I moved to a rollator – yelped every time the wheels hit a bump…but I was upright! I didn’t care. Then to a cane! Two flare-ups set me back, but RSD chose the wrong person to mess with. November 2012, I walked outside without a cane. The happiest day in my life! Since then, I have only had to use the cane about three times a year.

Of course, this illness completely changed my life. Divorce, had to leave my job, sell my home. Still putting it all back together.

Currently, I manage my illness. It is a game of wack-a-mole. A flare-up in my hip for about a year before I found out it was RSD and not an injury from a fall off my shower seat – nipped that in the bud. I had a flare-up in my larynx; if I lean my arms on my desk without my pillow my lover arms flare up, blurred vision when stressed; I figured out that my index finger was swelling and in pain because I hit the elevator button and light switch with my finger tip (use the knuckle!) A lot of time trying to figure out why the pain is where it is and get it gone. I manage balance problems, proprioception issues, stairs; inclines…these problems vary from day to day and catch me off guard.

[Funny story: I went to see Nutcracker this past December and got a seat in the Mezzanine. The incline was so steep – with no hand-rail, I entertained the whole Mezzanine audience by sliding down the stairs to my seat on my butt – Terror-stricken the whole way! I found it amusing that here I was doing that when, years ago, I had danced more than my share of Nutcrackers!]

Yes, I can walk right now! I never believed in miracles, but I do now! I am so amazed and grateful (oops, and teary-eyed again) that I will actually WALK in the 2015 Achilles Walk for Hope & Possibility this year to support all my dear, dear friends who are also struggling with this illness every day. All of us can have a miracle.

I would love your support. Please sponsor me – OR BETTER YET: COME JOIN ME! How wonderful would that be if you were there! Join the Debbie’s Warriors group!

Many thanks for your support — and don’t forget to forward this to anyone who you think might want to donate too!

To support Diane, please make a donation to her page.

The Cynthia Penaskovic Memorial Fund

Cynthia Penaskovic Memorial Fund picture of Cynthia. CRPS/RSD

Pain is a more terrible lord of mankind than even death himself. – Albert Schweitzer.

Too often, life changes on a dime as my pastor frequently tells our congregation. Just ask any person suffering with CRPS when they developed CRPS/RSD and they can immediately relate the date and time. So it was with Cynthia Penaskovic, a vibrant naval pediatric flight nurse who developed CRPS/RSDS 25-years ago after a car accident in southern California. Her doctors at Scripps Torrey Pines in San Diego called it “one of the worse cases of widespread RSDS they had even seen.”

Joan Penaskovic, Cynthia’s sister spoke of her subsequent “solitary life spent creating exquisite beaded art which she often donated, until she could no longer hold the threads. She was blessed with extraordinary grace and courage, providing loving support for her widowed mom, family and friends, when she was the one in dire need.”  Sadly, Cynthia lost her 23-year-old battle with CRPS in November 2013.

Joan Penaskovic and Veronica Meyers, Cynthia’s mother wrote to RSDSA to inquire about establishing a Cynthia Penaskovic Memorial Fund. Cynthia envisioned a fund that would “serve as a lightning rod for CRPS/CRPS Research Only so that “no one would ever suffer the way I did.’  The RSDSA Board of Directors unanimously accepted a very generous donation to establish The Cynthia Penaskovic Memorial Fund. It was stipulated that the funds would be donated to promising laboratories and scientists through fellowships and grants targeting research for a cure.

Serendipitously their gift arrived at the right time. RSDSA has recently established an International Research Consortium with the goal of linking laboratories worldwide to foster greater collaboration amongst scientists researching CRPS; thus producing more robust studies leading to better treatments and hopefully a cure.

Joan Penaskovic asked us to encourage the CRPS community to join in this effort. Her simple plea is, “Do not let Cynthia’s suffering be in vain. It was her last wish to help drive funding for Research Cynthia Penaskovic Memorial Fund picture of Cynthia. CRPS/RSDand with your help we can cure RSDS/CRPS. Donate now.”

  1. Everett Koop, former Surgeon General of the United States cautioned us that the treatments of today cannot be the treatments of tomorrow.” Consider that the National Institutes of Health only invests less than one percent of research dollars into pain research. It is up to us.

To donate to The Cynthia Penaskovic Memorial Fund, visit https://rsds.org/donate/ and give generously in Cynthia’s memory (make sure that you write in memory of Cynthia in the box on PayPal’s second page) or in the memo line of your check.  Thank you for your generosity.

New U.S. Clinical Trial of Neridronate

In the last fifteen years, only two randomized, placebo-controlled trials for CRPS have been conducted in the United States. Sadly, both were unsuccessful.

Our optimism is rising, however, with the U.S. Food and Drug Administration’s declaration in 2014 that Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is officially a rare disease. The designation is a strong catalyst for new drug development. Developers qualify for clinical trial tax incentives, may sell the drug without competition for seven years, and may enroll fewer patients in a trial (as recruiting is more difficult in small populations).

Four pharmaceutical companies are now considering clinical trials for CRPS in the United States.

The first out of the gates is Grunenthal, a Germany-based, family-owned company. The trial medication is neridronate, an amino-bisphosphonate. Attention mounted for neridronate after a startlingly successful small trial in Italy, which was was published in the journal Rheumatology at the turn of 2013. The Italian trial’s inclusion criteria were strict; individuals whose CRPS onset was greater than four months were excluded. The American trial inclusion criteria are not as strict, with the exception that individuals with CRPS Type 2 are excluded. (The diagnosis of CRPS Type 2 is made when specific nerve damage can be detected, whereas for Type 1 such damage is not evident.

Grunenthals’ recruitment for the neridronate trial started in early April 2015.

The bisphosphonate class of drugs has been used overseas to treat CRPS for years. Querying PubMed for bisphosphonates for CPRS will reveal a small trove of published research (more than 20 papers) dating back to 2002. (PubMed is a great website to bookmark to search the latest scientific research. Again, this search engine indexes published research, which may not prove fully accurate after deeper scientific investigation.)

Currently, two other pharmaceutical corporations are submitting plans to the FDA for clinical trials that will evaluate therapies for a CRPS indication. It’s an exciting time for all individuals affected by CRPS. Stay tuned!

Learn More About the Camp for Courageous Kids

Do you remember sitting around the campfire and signing camp songs, roasting marshmallows and giggling with your new friends? It’s your first day of summer camp and you are so excited to be there, to join in all the activities: archery, bowling, arts & crafts, horseback riding, etc.

Fast forward 25 years to being a mom and/or dad whose child who lives in chronic pain – there are no summer camps for your child because he/she is “too complex.”

But now there is a summer camp for children living in chronic pain: The Center for Courageous Kids in Scottsville, Kentucky.

RSDSA, together with the US Pain Foundation and The Coalition Against Pediatric Pain (TCAPP), is sponsoring a camp July 14-17, 2015 for children ages 7-17.

The goals of the summer camp are fun, fun, and (you guessed it) fun! It is the first time we have ever found a camp for children living in pain.

The camp is totally FREE for all participants and one parent who will stay at the camp with his/her child. Please go to tcapp.org and fill out an application today! Space is limited.

Please consider making a donation to RSDSA today!

RSDSA launches new, user-friendly website and blog to help the CRPS Community

rsds-logo.jpgWelcome to RSDSA’s new website and blog. We’ve updated our presence on the web in order to better serve the CRPS/RSD community. The new website is very user friendly and easy to navigate. The idea is to help you quickly find the information, tools, and strategies you need to understand the diagnosis of and treatments for CRPS — and how to live well despite having this condition.

For those visitors who don’t know about us or about CRPS/RSD, RSDSA is an international not-for-profit organization based in Milford, Conn. Our mission for the last 30+ years is to provide support, education, and hope to all those affected by CRPS/RSD while we drive the search for better treatment options and a cure.

Complex Regional Pain Syndrome (CRPS), formally known as Reflex Sympathetic Dystrophy (RSD), is a difficult-to-diagnose progressive neuroinflammatory disorder characterized by intense, severe pain, swelling, and hypersensitivity to touch. CRPS’ pain is rated as greater than cancer pain or the amputation of a digit on the McGill University pain index.

Those with CRPS/RSD often experience this level of pain 24 hours/seven days a week — so you can understand why it is so debilitating for many. It can be triggered by a minor injury, surgical procedure or other physical trauma and the pain is far out of proportion to the incident. You can learn more about this condition here on the site.

Although it’s categorized as a rare disorder, we believe that there are many undiagnosed people suffering. This site is designed to help:

  • People with undiagnosed symptoms
  • Individuals newly-diagnosed with CRPS/RSD (You’ll find some very helpful videos on a page just for you.)
  • Those living with chronic CRPS/RSD symptoms
  • Youth with CRPS/RSD
  • Friends and family serving as caregivers
  • Medical and research professionals
  • Corporations and foundations that support organizations like ours as part of your charitable giving

We’ve built a community for everyone interested in CRPS/RSD – and this website is its home. Please spend some time to explore.

Under the Community tab, you’ll find out how to join us and get involved. You’ll also find out how to connect with others living with CRPS through our peer-to-peer program and to find and join a support group.

Throughout the site and on our YouTube channel you’ll find dozens of videos by leading pain specialists, from individuals with CRPS offering useful advice from their experience, of our many meetings and conferences, about diagnosis and treatment guidelines.

Instagram Links

Read the latest from the RSDSA Blog

Telltale Signs and Symptoms of CRPS/RSD

Donate Through 12/31/24: RSDSA’s 5th Annual Virtual CRPS Awareness Walk

Register: Stanford Pain – CRPS Treatment Study

Register: CRPS CBD Study

RSVP: Abbott’s Life-Changing Treatments for Chronic Foot Pain

Article: My doctor says they have to lower my long-term opioid medicine. “What can I do? What do I say?” by Stefan Kertesz, MD, MSc


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Add your loved one(s) to RSDSA’s CRPS Warrior Memorial

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What Is the Difference Between Peripheral Neuropathy and Complex Regional Pain Syndrome?

Written by Elliot T. Udell, DPM

In podiatry, when we talk about peripheral neuropathy we generally are referring to conditions that affect the local nerves in the lower extremity. This is distinct from conditions that affect the brain and/or spinal cord Diabetes is one of the leading causes of peripheral neuropathy. Research shows that diabetes affects the tiny nerves and small arteries in the area where the patient is experiencing pain. The pain is generally described as “severe burning” or “pins and needles” and is generally worse at night. Months or years later, this pain may lead to numbness indicating the presence of far greater nerve damage, and in such cases we have to be concerned with the development of ulcerations.

Complex regional pain syndrome (CRPS) presents quite differently. Because my practice is focused on patients with severe foot and ankle pain syndromes, I treat people with both peripheral neuropathy and CRPS. Hence, I am well aware of the overt as well as subtle differences between these conditions.

People with CRPS generally present with a history of an inciting injury, which may be a sprain, fracture or even surgery (many elective surgical procedures can lead to CRPS). They also present with severe pain, which is far more intense than that experienced by people with peripheral neuropathy. The pain is so severe at times that even air blowing on the area can cause a person to wince in distress. People who have CRPS can also present with other symptoms generally not associated with peripheral neuropathy, such as sleep disturbances and clinical depression. The depression results from the physiology and anatomy of the sympathetic nervous system synapses rather than purely from an emotional reaction to the pain. Moreover, we commonly see skin problems associated with CRPS, such as edema and small shiny plaques that are exquisitely painful.

Another significant difference is the tendency of non-treated CRPS to progress to the opposite extremity and to the upper limbs. A glance at the anatomy of the sympathetic nervous system, which runs parallel up and down both sides of the spinal cord with perpendicular crosses from right to left, may explain why this illness can easily progress to other parts of the body. Also, CRPS patients often have both spasms of the muscle and progressive muscle weakness. Untreated, this muscle weakness can lead to atrophy and loss of use of the extremity. Such extensive and debilitating muscle weakness, as well as atrophy, is not common in peripheral neuropathy.

Because the anatomy and physiology of the symptoms are different, so are the treatments of these conditions. The treatment of CRPS is complex; we use intense physical medical modalities and many different types of oral pain medications and antidepressants. Each condition is different, challenging, and time consuming, but the rewards of seeing patients leave their wheel chairs and crutches and return to work and school makes any effort we put into working with these people emotionally rewarding.

Dr. Elliot Udell specializes in pain management of the foot and ankle. He is in practice in Hicksville, New York. He is currently president of the American Society of Podiatric Medicine and is on the board of the American Society of Podiatric Dermatology. He is board certified in Podiatric Primary Care as well as Pain Management. He lectures at medical seminars throughout the US as well as in Europe.

Color The World Orange™ for CRPS/RSD Awareness

Join us to Color The World Orange™ for CRPS/RSD Awareness on Nov. 2

By The Color The World Orange™ Team

 

Color The World Orange™ is almost here and we need your support!

An annual event held the first Monday of November to spread awareness of complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD), on Nov. 2 Color The World Orange™ supporters will be wearing orange and hosting events to spread awareness of CRPS/RSD, as well as raising funds to support research of this debilitating condition.

To have the biggest impact, we need everyone in the CRPS/RSD community to get involved.

The easiest way to participate is to wear orange – a ribbon, a shirt, a bracelet — and post a picture to social media with the hashtag: #CRPSORANGEDAY™.

We had a goal to light the night orange on Nov. 2 and due to the hard work of Color The World Orange™ supporters, buildings across the world are helping to turn that goal into a reality.

In the U.S., the Con Edison Clock Tower in New York, the dome of the Nassau County, New York Theodore Roosevelt Executive and Legislative Building, the Terminal Tower in Cleveland, Ohio, the Houston, Texas City Hall building, the giant soda bottle at “Pops” in Oklahoma City, Oklahoma, the dome of the Westmoreland County, Pennsylvania courthouse, the Gulf Tower in Pittsburgh, Pennsylvania and the South Street Bridge in Saegertown, Pennsylvania will all be lit orange, as will buildings in Chicago, Illinois.

In Australia, the SkyPoint Observation Deck, the Queensland Performing Arts Centre, the Brisbane Treasury Casino & Hotel, the Brisbane Convention & Exhibition Centre and the Melbourne Star Observation Wheel will all be lit orange. In the U.K. the Brighton Wheel is also scheduled to turn orange.

Four Color The World Orange™ supporters will be wearing orange as they run the New York City Marathon and three cyclists in the U.K. will be participating in a 12 hour “cyclathon.”

These are just a few of the amazing events that have been planned for Color The World Orange™ 2015.

In addition, 40 proclamations, with more on the way, have been granted by U.S. Governors and local officials recognizing Color The World Orange™ 2015 and November as CRPS/RSD awareness month.

Color The World Orange™ was started in 2014 to bring global attention to a disorder that, unfortunately, too few people understand. The goal of the event was, and remains, to have one day where everyone affected, regardless of where they live or the location of their CRPS/RSD or what organization they belong to, can join together for one common goal—bringing awareness to CRPS/RSD!

We truly believe that if we stick together, our voices will be heard. There really is strength in numbers.

During the first annual Color The World Orange™ in 2014, buildings in New York, Chicago, Cleveland, Indianapolis, Indiana and Charlotte, North Carolina were lit orange, as were bridges in New York, Oklahoma City and a fountain in Australia. There were even CRPS/RSD billboards in Oklahoma City. One supporter ran the 2014 New York City Marathon, while another completed a 200-mile bike ride through the U.K.

Forty-four proclamations were obtained in 2014 from U.S. states and cities recognizing Color The World Orange™ and November as CRPS/RSD awareness month.

More than 1,000 tweets and more than 800 Instagram posts about Color The World Orange™ were made on Nov. 3, 2014.

Last year more than $7,000 from Color The World Orange™ events and fundraising was donated to the RSDSA to be used for research.

Let’s all work together to make Color The World Orange™ 2015 an even bigger success by wearing orange, and encouraging friends and family to wear orange! Make sure to take a picture and post it to social media with the hashtag: #CRPSORANGEDAY™.

Let’s show the world that while we are in pain, we are strong!

For more information and to find events in your area, please visit the Color The World Orange™ Facebook page:  https://www.facebook.com/ColorTheWorldOrange or website: www.colortheworldorange.com.