Category: Opinion

Written by Melissa Wardlaw for the RSDSA blog.

Even before I watched Take Care of Maya, I knew the subject matter. I had read several articles about it, including “People” magazine, which presented Maya’s case as the cover story in June 2023. I was not, however, prepared for the utter shock and horror of what Maya and her family endured in 2017. The documentary left me heartbroken, angry, sad and frankly at a loss for words as I observed just how broken and uneducated our healthcare system is when dealing with rare and complex chronic invisible illnesses and pain. 

Maya, a mere child (9-yrs old when she was diagnosed with CRPS by a world-renowned CRPS Specialist), was in excruciating pain for which her physician ultimately recommended a ketamine coma – which helped! A year later, Maya’s pain came back in full force and she was taken to Johns Hopkins All Children’s Hospital.

In short, Maya’s mother (Beata) was unjustly accused of suffering from Munchausen Syndrome by Proxy (MSP) by a medical director there. MSP is a mental disorder wherein parents (usually the mother) of a child with rare and complex (mostly invisible) diseases either create fake symptoms or cause real symptoms to make it appear that the child is sick.

Yes, that’s right! Despite a CRPS diagnosis from a reputable physician, Beata was falsely accused of medical child abuse of her own daughter; subsequently the hospital “medically kidnapped” and took custody of Maya. Her mother was not allowed to see her and could only speak to her via phone on limited occasions and under strict supervision. Maya’s father Jack (and her brother) were allowed only short visits at the hospital.

After 87 days of Maya being in state custody and Beata fighting for Maya, Beata sadly took her own life to pave the way for her daughter to get back to her father and brother and get the treatment she desperately needed to treat her CRPS. Five days later Maya was returned to her home, albeit without her beloved mother, yet still with CRPS.

Just like Beata on behalf of Maya, most of us who live with CRPS (and other invisible complex chronic illnesses and pain) have been judged unfairly, scrutinized, told the pain is “all in our heads,” given “the look” or been questioned as to how the pain and symptoms can be that bad when we appear relatively “normal” or are able to do such and such a task?

Well, I’m here to tell you the pain of CRPS IS that bad. According to the McGill pain scale, it is the most severe form of chronic pain there is and also known as the “suicide disease.” Like most parents who have children with rare diseases, Beata was simply fighting and advocating for her young daughter who was suffering in unrelenting pain only to be punished for it. What would you do for your child? What, if anything, should Beata have done differently? WHY did this have to happen?

There are too many distressing clips in the film to discuss, however this is for sure – Beata, a nurse by profession, was a fierce advocate and documented everything as we are taught to do living with a complex, rare and misunderstood (mostly invisible) disease with symptoms and pain that defy logic. Her detailed documentation (including recorded phone calls) and exasperation is shown in the documentary and paints a disturbing picture of the manipulative case workers and “medical professionals” who were out to make things even more difficult for this family and for young Maya, who was fighting for her life and needed her mother.

In the final court hearing before her death, Beata asked if she could hug her daughter – a simple request which was denied. Maya would never get that hug and would never see her mother alive again.

As an adult with CRPS (and multiple other medical issues), my mother has been my rock. Throughout my diagnosis and in fact, all these years later, I would not be here without her unwavering support, unconditional love, selfless caregiving and advocacy. The hospital and Dr. Sally Smith, with her false allegations, took something away from Maya that is irreplaceable – a lifetime of mother’s love and compassion. It angers me to my soul for Maya and her family and every family and patient with a complex disease that has had to go through something similar at the hands of power hungry and uneducated physicians, who, instead of fulfilling their Hippocratic Oath to “do no harm,” they in fact do the opposite.

After Maya was released back to her father and brother, Maya’s diagnosis of CRPS was confirmed by a separate CRPS physician. According to reports, Maya still has CRPS and will always have it as it is incurable, although she is doing much better. We can only hope her family now gets the justice they deserve in a $220M lawsuit filed against the hospital (and other parties) set for trial in September 2023. The family has already settled with the accusing physician for $2.5M.

My deepest sympathies and condolences go out to Maya and the Kowalski family. For more information about Maya’s case, please see the “People” magazine article here. For additional information on CRPS please visit: rsds.org. If you are experiencing suicidal thoughts, please contact the Crisis Text Line by calling 988 or texting “START”(741741).

Written by Guest Blogger Ashley Epping

I developed CRPS at 12 years old in my left wrist. After being diagnosed, I spent the
next six years dancing competitively, staying at the Pediatric Cleveland Clinic, creating
art, traveling abroad and applying to colleges. I never once thought about my shoe
choice because I didn’t need to. Though I would always see others in my support
groups posting photos of shoes that worked for them, and to be honest most were not
versatile enough to wear for specific occasions such as professional or dressy settings.
For the first six years my pain was only located in my upper body, but in the following
years the pain spread to the lower regions. For the first time in my life, I was not able to
purchase shoes based on the fact that they were cute. I am a 22 year old business
student, living in New York City. The typical CRPS friendly shoes were not an option for
me.

I spent the next few months observing and researching shoes that could serve all
purposes. I needed shoes that were equipped for walking, standing, exercising, and
were standard for business, social, and/or dressy occasions. All the while serving relief
for CRPS symptoms. I needed shoes that could handle swelling, hyper sensitivity, poor
balance and support painful legs.

I was successful in finding shoes that fit my lifestyle, and I figure that others may have
the same issues I did when looking for shoes. I have put together a list of my findings
for all CRPS sufferers who are in need of some kicks.

The Top 10 Shoe Brands for CRPS Warriors

1. Teva
Teva sells an arrangement of sandals, sneakers and boots, but their most
accommodating shoe for swollen and sensitive feet are their adjustable strap sandals.
The sandals adjust at the ankle and around the ball of the foot to create the perfect fit
everyday no matter the severity of symptoms.

2. Eurosoft
Eurosoft is made up of mostly fashion forward products; shoes that are meant to be
worn for style, while also keeping you comfortable throughout the day. The shoes are
created with padding in the sole and arch supportive. They offer casual open slip ons for
day to day wear, and also offer wedges for a more fancy occasion. Eurosoft is sold by
wholesalers, but the most convenient locations are Amazon, DSW and [sic] JCPenny’s.

3. Sketchers
Sketchers offer boots and sandals, but their sneakers are worn most often for CRPS.
Sketcher’s sneakers offer light weight technology, air-cooled memory foam, and flexible
soles.

4. Christian Dietz
This brand is on the [sic] pricy side, but if you are looking to make an investment these
shoes will last you years. Their products range from sneakers to dress wear to
orthopedics; allowing all different accommodations. These shoes are incredibly fit for
people who wear braces. Christian Dietz is sold through the store Enslow, which has
been serving the medical community since 1909.

5. New Balance
New balance is a commercial sneaker brand, but has recently come out with NBRx
Performance Foot Health products. These sneakers are categorized by running, walking
and insole options. New Balance connects doctor’s recommendations to certified retail
partners and trained fit specialists to fit you with the right sneaker.

6. Dankso
Dankso has a wide range of products, but the most supportive and specialized shoe for
CRPS purposes is their clog model. Though these shoes are not highly recommended
for walking long distances, they are one of the top shoe brands for people who need to
stand for long periods of time.

7. Birkenstock
The most CRPS friendly products from Birkenstock’s are the slip on Arizona sandals,
and the slip on Boston clogs. These shoes are made to be adjustable and roomy for
cozy socks, and/or in our case for swollen, sensitive feet. These products tend to be a
little pricy, but they are real leather, which does last for a very long time.

8. Ecco
Ecco offers a variety of products, but the best ones for sensitive feet are their slip on
booties, flats, and casual sneakers. This brand has created a feature using premium
materials plus dynamic comfort. They use “next generation platform technology” which
is inspired by nature and old world leather. In case a fancy occasion arises they also
offer low heel pumps with the same comfort technology.

9. Adidas
Adidas is a commercial brand, but they have come out with their Ultra Boost technology,
which are designed to propel you forward while maintaining your stability. They are
engineered to expand with your foot and avoid irritation, and come with rubber soles
that have extraordinary grip for wet and dry surfaces. These sneakers are the favorable
choice for the gym or physical therapy.

10. Naturalizer
Naturalizer offers incredible options for professional shoes; if you are looking for a shoe
with a small lift, that are sleek, durable for walking and standing, than their a top choice.
Their prices have a wide range, but lower prices can be found through their retailers
such as Nordstrom Rack and DSW.

By Guest Blogger Melissa Wardlaw

As a patient with CRPS/RSD, I am lucky to have a pain-management physician I have been partnered with since 2004 whom I trust, who trusts me and who understands my complex medical issues. As I have visited many physicians and other specialists on my medical journey before and after partnering with him, clearly this hasn’t always been the case! Recently I spoke to an audience of healthcare professionals at a healthcare conference, and left them with this takeaway of some helpful treatment
tips I have comprised in all my years as a CRPS/RSD, chronic illness & pain patient.

1. Patients with CRPS/RSD are on individual journeys and every patient is different! Even though most patients have similar symptoms and the common theme is very severe pain that is greater and lasts longer than the scope of the inciting event/injury, these symptoms can vary in duration, intensity and overall disability. Also, many CRPS patients have comorbid (simultaneous) medical conditions which may bring additional challenges unique to treating each patient.

2. Be a Healthcare Partner! Because CRPS/RSD is so poorly understood with so many differences in opinions amongst practitioners, often times patients know more about CRPS/RSD than their practitioners; but they especially know more about THEIR individual conditions and how CRPS affects them. Listen closely. Educate. Find out patients’ goals. Help come up with strategies together that work specifically for each patient, thus being a partner in solution-oriented healthcare.

3. Treat the whole person instead of the disease! This means gaining insight into hormonal, endocrine, psychosocial, and biochemical processes to ensure the patients’ systems are in balance – this will allow the greatest opportunity for treating CRPS/RSD. If patients are generally healthy in the body and mind, they will be more apt to accept chronic healing.

4. Watch for supplemental symptoms and medical issues CRPS/RSD can cause! With the punishing, continuous and extreme physical stress and severity of pain/symptoms resulting from CRPS/RSD, patients may develop cardiac conditions, situational anxiety/depression, insomnia, PTSD, high blood pressure, diabetes, internal organ issues, IBS and the like. It is important not to ignore these additional symptoms and medical conditions that may arise.

5. The Goal of treating CRPS/RSD is to calm down the patient’s nervous systems, and not bring more stimulation to an already misfiring nervous system in overdrive! CRPS is similar to a PC motherboard being dropped in water and malfunctioning. Calming down the fight or flight response occurring in the patient’s body is necessary. This is accomplished through various methods, treatments, medications and coping strategies. However, beware of overstimulating the body further and treating patients as guinea pigs. Also, as every patient is different, what might work for one patient might not work for another. There is a reason CRPS stands for COMPLEX regional pain syndrome!

6. Primary goals of treatment are really three-fold:
a. To increase function/normalcy (this might be different for each patient)
b. To reduce pain/symptoms and gain better control over them (better management, not necessarily abatement)
c. To improve overall quality of life (not necessarily back to one’s “old life”)

7. CRPS/RSD is an INVISIBLE chronic illness (for the most part)! Most CRPS patients look/sound “normal” depending on other co-morbid medical issues. There can be some visible signs of illness; however symptoms may wax and wane. In the goal of fitting in with society, many patients have learned ways of hiding or masking their visible signs of illness & disability. It is important to ask patients to describe symptoms disabling to them (and why), and have them document and take
pictures of visible and invisible symptoms, and bring this information to their appointments in an effort to maximize time.

8. Help patients find additional specialists and resources to aid in their overall chronic (and general) health.
These may include:
a. Chronic Illness & Pain (and Grief/Loss) Counselors, Hypnotherapists, Psychiatrists, etc.
b. Physical (Water) & Occupational Therapists, Pilates/Yoga, Tai Chi Instructors, etc.
c. Naturopathic Practitioners (i.e., Acupuncturists, Nutritionists, Massage Therapists, Chiropractors, etc.)

d. Interventional Pain Management Physicians, Neurologists, Endocrinologists, Rheumatologists, Hormone Specialists
e. Support Groups (both in-person and online), Churches, Friends/Family, Service Animals, etc.
f. Online Resources & Patient Advocacy Groups (i.e., RSDSA, RSDHope, US Pain Foundation)

9. Be Kind, Empathetic & Compassionate! You may not have all the answers, however what may help patients the most is a healthcare professional who treats them with respect and takes the time to listen, understand, not judge or make them feel their illness/pain is “all in their heads,” because it is not! You would be surprised just how much a little compassion and kindness can help a patient (of any kind), especially one who is having a bad day.

10. Be Honest! If you don’t know what to do to help the patient, tell them this, but be prepared to refer them to someone who can. A patient will respect you much more if you are honest and sincere, but in a respectful manner.

11. Help set realistic goals! Many times patients have the goal of “fixing” or curing CRPS/RSD (which is an incurable illness) and getting back to their old lives. Sometimes they may see this as the only option with treatment. Helping to reset their expectations and mindset goes a long way to the overall management of the disease. While remission is possible, it is rare and flares are common. Working WITH the disease as opposed to AGAINST it will go much further than trying to completely eradicate it. That way if remission does occur, it is a huge bonus!

12. The best options for treatment are multi-faceted! Educate the patient on the many options they have, from the noninvasive to invasive and everything in between. There may be some residual (justified) fear about procedures and the like, so take cues and respect patients’ comfort levels, while encouraging them to work through them at the same time.

13. Opiates are ok! While opiate medications should not be the first choice for CRPS/RSD (or any illness), many CRPS patients are successfully treated long-term with opiates, especially if co-morbid chronic illness & pain conditions exist. Most CRPS patients present with very severe, continuous and disabling pain; and while CRPS has no specific medications of its own on the market, opiates are made specifically to treat pain. The key is to educate the patient/caregiver(s) on the pros/cons of opiate therapy, and screen/monitor for risk factors. Most statistics put legitimate patients becoming “addicted” to opiates around 1-3%; this is extremely low, so don’t be intimidated or scared to use them as part of an overall multi-modal pain management strategy. First and foremost, your duty as a healthcare professional is to help the patient and “do no harm.”

14. Most CRPS/RSD patients are educated, professional members of society! We are mothers, fathers, sisters, brothers, sons and daughters. CRPS/RSD is a devastating chronic illness, often changing patients’ lives in a split second and robbing us of our careers, activities, family lives, educational pursuits, relationships and life purposes up to that point. It isn’t called the “suicide disease” for no reason. The pain does get that bad. It is important to understand that many patients are going through the most difficult time of their lives, as are their families and loved ones. The loss and grief is palpable. Helping them to focus on the good they do still have in their lives is critical to survival. Professional assistance is very helpful, not only for patients, but also for spouses/caregivers and loved ones because their lives have changed dramatically also.

15. Encourage patients to continue on with normal activities as much as possible! With the all-consuming nature of CRPS/RSD, it has a tendency to take away patients’ abilities to do things they used to do. However, the more they can participate in tasks they enjoy and love, the more it will help with overall healing and finding a purpose again. Finding activities that distract the pain and allow for natural endorphins to kick in, the better patients will feel, at least temporarily, and thus will slowly gain strength and control over the long term effects of CRPS/RSD. It will be a multiplier of confidence and positivity that will show patients they are not defined by their disease(s) and are still valued members of society!

NOTE: Opinions expressed are solely my own and do not represent the views or opinions of other CRPS/RSD patients or practitioners.

Bio:
Melissa Wardlaw was diagnosed with CRPS/RSD (now full-body involvement) as a result of a spinal cord injury suffered in 2002 during routine epidural steroid injections. She also has fibromyalgia, lumbar/cervical degenerative disk disease, migraines and additional chronic medical issues. Formerly a high-powered Business Executive & Consultant in start-up operations and HR, Melissa has an MBA in entrepreneurship, is a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and offering peer support/counseling & advocacy (pro bono) as her health will allow. She also runs both in-person and online support/empowerment groups for CRPS/RSD, chronic illnesses & pain in Metro Atlanta. Melissa is also an avid volunteer and supports multiple organizations committed to rescuing animals and helping others with chronic illnesses & pain. She has two Ragdoll cats, who graciously “allow” her to live in their brand new home in Atlanta, GA.

Contact Information:
Melissa Wardlaw, Atlanta, GA
Email: [email protected]

Written by Michael Sullivan PT, MSPT for the RSDSA blog.

How important is movement to our health and wellbeing? A dark lesson starting in medieval times and running into the mid-1800s is provided by the numerous inquisitions, the most famous being the Spanish Inquisition.  For over 700 years torture was used to induce people to confess to their heresies, recant their heathen ways and profess their faith in God. Torture was used to speed up the process. One of the most effective means of torture was the use of constraints to restrict a person’s ability to move. Stocks, barrels, metal cages, ropes and chains were used to prevent movement. The tighter a person is bound, the less they can move, the greater the pain. Complete restriction of movement can lead to excruciating and unrelenting pain within twenty-four hours. People were known to go mad in a matter of days. My apologies if the thought of this alone is enough to make you cringe or feel discomfort (you can thank the mirror neurons in your brain) but this illustrates the importance of movement and highlights that pain is a consequence of immobilization.

One of the many issues that people with Complex Regional Pain Syndrome struggle with is that movement is painful, to the point where they don’t feel they have the choice to be active. Essentially, pain itself becomes the constraint that restricts movement resulting in more pain. As a result of this vicious cycle, CRPS sufferers can get into a downward spiral of functional decline that not only exacerbates their pain but seriously diminishes their quality of life. Fear of movement as a result of pain leads to avoidance of movement. My goal in writing today is to convince you that movement, while it may be painful, is good, and to share some strategies for restoring function. First, let’s look a little more closely at the pros and cons of not moving.

One of our responses to pain is to avoid movement to protect the injured area from further harm. In the early stages of injury this type of guarding is an adaptive response that helps us to heal. Depending on the injury, your doctor may even use immobilization to set up the conditions under which the damaged tissues heal. The simplest example would be casting a broken bone. In deciding how long to immobilize an injury there is always a trade off between the time that is needed for the tissue to heal and the deleterious effects of immobilization. Not only can immobilization be painful in of itself, it also is not healthy for many of our tissues. Muscles need to move and work to remain strong and flexible. Moving joints distributes synovial fluid that helps to lubricate and provide nutrition to joint surfaces. Nerves elongate and glide relative to the surrounding tissues when we move. Movement and interaction with our environment activates nerve endings, sending a constant stream of information to our brains for processing that are essential to brain health. Part of the healing process is the laying down of scar tissue as a means of repairing damage. Unfortunately, scar tissue is not very smart and while it strengthens the damaged tissue, it also can form cross-links to tissues that need to move in relationship to each other. The longer these cross-links remain in place the stronger they get and the more they can restrict normal movement. Importantly, movement is also necessary for the final phase of healing, a remodeling process that allows injured tissues to reorganize and gain maximum strength. When we continue to guard against movement after the initial healing process is complete, we are doing more harm than good, and the protective response becomes mal-adaptive. It is no longer helping us to heal. In short, our muscles, fascia, joints, nerves and brain all need movement to remain healthy and any immobilization, even of an isolated body part, beyond the minimum required for healing is not good for us. The consequences are most extreme when people take to bed rest to cope with their pain. We then add cardiovascular deconditioning, arterial constriction, blood clots and the possibility of pressure sores to the list of adverse consequences. Studies demonstrate that there is no known medical condition that is helped by prolonged bed rest.¹ 

When faced with the dilemma that it ‘hurts’ to move and accepting the fact that it is bad for your health and exacerbates pain to not move, I am hoping you will choose the latter. I recognize that this is no small task. So how should you proceed?

Arm yourself with knowledge; pain neuroscience education is key. Know that pain is not synonymous with tissue damage. In a normal functioning nervous system, pain is an early warning system of potential tissue damage. With CRPS both the peripheral and central nervous system function can become sensitized resulting in pain with non-painful stimuli (allodynia), exaggerated pain with a painful stimulus (hyperpathia) or pain in the absence of any stimulus, i.e. spontaneous pain. To use a smoke alarm analogy, this is the equivalent of every smoke alarm in your house going off when you blow out a single birthday candle in addition to your smoke alarms going off randomly all day and night. With the smoke alarm, eventually you would come to the conclusion that the system is malfunctioning, and if you are anything like me, you would start cleaning them off the ceiling with a broom stick. The smoke alarm is no longer providing you with useful information. The same could be said of the sensitized nervous system. Common sense tells you that touching your hand lightly should not result in a burning sensation, but it does and patterns of activation in the centers of the brain that process this information look about the same as if you were touching a hot burner on your stove. There is nothing imagined about this, it is real. The good news is that you can change this experience.

Learn ways to modulate your pain. While knowing how pain is processed is not an absolute requirement to learn pain modulation, most people just don’t take our word for it when we tell them they can make their pain better or worse. The receptors in our body that collect information about actual or potential tissue damage are called nociceptors and the process whereby information about unpleasant stimuli is transmitted to the brain for processing is called nociception. Your brain takes this information, puts it into context of your past experiences, psychosocial factors, your personal beliefs, your cultural identity, your current health and demographics and your spiritual beliefs among other factors and does a threat assessment. Your brain will produce pain in proportion to the perceived threat not necessarily in proportion to the actual threat. If your conclusion is that what you are experiencing is not very dangerous then you will experience less (or no) pain. Thoughts and expectations do matter. If you have catastrophic thoughts and expect that you will never get better your pain will be worse. Your brain will ratchet up the threat assessments unless these thoughts are addressed. A psychologist with experience in chronic pain management is most helpful in addressing these issues.

Nociception need not be present to experience pain. Emotional and cognitive stressors can both produce pain responses in areas of the brain identical to those produced by the nociceptive process. Learning techniques to manage these stressors can down regulate pain. Meditation and relaxation exercises quiet activity in areas of the brain that process pain. Conversely, you can have nociception but not experience pain. There is an abundance of functional magnetic resonance imaging studies that allows observation of brain activity in real time that support these assertions.

It’s time for Graded Motor Imagery. The ground breaking work being done by Butler and Moseley with the Neuro Orthopaedic Institute (NOI) addresses the neuroplastic changes that occur in the brain as a result of the central nervous system being bombarded by nociceptive information. Brain health is promoted through a series of three activities: laterality tasks, imagining/thinking about movement and mirror box therapy. These activities can help to reduce pain and increase motor control for better quality movement. NOI has many good online resources that can help get you started. We generally recommend five minutes of GMI 8-10 times per day spread out across your waking hours. If you are going to be working with a physical therapist, make sure the person you are working with has experience with these techniques. Pairing these with desensitization exercises can help with allodynia.

Address the building blocks of function. Once you have developed some skills to better manage your pain, you are more likely to have success progressing into the active portion of your treatment program. Our goal up to this point in addition to understanding and reducing pain has been to reduce the fear associated with movement by better understanding pain. Given that you will be able to down regulate pain in the event that it increases you will be able to look past those previous experiences of trying to increase your activity level that did not go so well. Gentle exercises to improve joint mobility, improve muscle flexibility and increase cardiovascular endurance are key. Start slow, increase slowly but don’t be deterred by discomfort that you are likely to experience in the moment. As you add more activities to your program, the guiding principal is that if you can do tomorrow what you did today, you are heading in the right direction. If you can’t do tomorrow what you did today then you did too much. Adjust your activity level accordingly. Once you have established a baseline you can start slowly increasing the duration of your cardiovascular activities. Studies demonstrate that cardio above all other forms of exercise helps to regulate health in the nervous system, decrease depression, and reduce stress in addition to promoting cardiovascular health.

In addition to neuropathic pain associated with dysfunction in the nervous system people with CRPS experience a combination of orthopedic consequences associated with the original injury or disuse. Almost universally, one of these consequences is myofascial pain associated with guarding the injured area and adjacent areas. Learning skills to self manage myofascial pain are essential to reducing pain in the periphery. Releases and stretches are essential to managing flare ups.

When you are experiencing some success with the above it is time to move on towards addressing specific deficits identified on your physical therapy evaluation. Exercises for building strength, addressing postural imbalances, improving balance, practicing good body mechanics are a good lead in to functional training.

Putting the Fun back in Functional: Ultimately, everything up to this point is pursued with individual functional goals in mind. What are the most important activities for you to regain quality of life? For some, self care and the ability to live independently is the most important thing. For others it is playing with their children or dancing with their partner. For some, it is getting back to work and regaining financial independence. Getting back into your normal daily routine involves sitting and standing tolerance, safe ambulation, the ability to transfer from standing to floor and back and may involve components of lifting, carrying, pushing and pulling, fine and gross motor skills. These should all be incorporated where appropriate to meeting your functional goals. Engaging in activities that you enjoy unlocks your body’s natural pain relieving ability and is another step towards a more healthy life.

1. Allen, C; Glasziou, P; Del Mar, C (9 October 1999). “Bed rest: a potentially harmful treatment needing more careful evaluation.”. Lancet. 354(9186): 1229–33).

By Guest Blogger Lara Santoro, Ph.D.

Lana Edwards Santoro, Ph.D., is a teacher, educational consultant, writer, and amateur photographer. She also lives with Complex Regional Pain Syndrome (CRPS). Embracing CRPS turned this teacher back into a student.

Lana’s interest in education began when she was in elementary school. She loved reading and never passed an opportunity to visit books in the library. She remembers setting up a “school” at home in her living room, and how her grandfather lovingly subjected himself to her improvised reading lessons. Lana’s early interest in teaching and learning became her professional work. With an interest in multidisciplinary, integrated approaches to education and health, she taught in a residential treatment program, psychiatric hospital, and a center for children and adults with medically complex, developmental and intellectual disabilities.

Lana continued her work in education and obtained advanced degrees in special education and research. She taught pre-service teachers at the undergraduate and graduate level, consulted with state, local, and private agencies on a variety of projects, and presented extensively about how to apply research-based, instructional strategies in the classroom. Lana also served as principal investigator on a series of federally-funded research studies on comprehension where she and her colleagues developed a widely-used intervention and curriculum for struggling readers.

A 2006 tennis match led to a ruptured gastrocnemius muscle, dozens of visits to medical professionals, and—four years later—a CRPS diagnosis. As someone dedicated to “what the research says” about best practices in education, she was overwhelmed by the lack of research for CRPS at the time. She was haunted by what seemed missing, and the research questions that weren’t being asked. Struggling to sort through what was known and not known, Lana became a student again as she applied her interest in education to her experience with CRPS. CRPS became an excuse, of sorts, to return to the library (or, more frequently these days, Amazon.com) to read what she could find on pain management, treatment, and mindful living. Those hours of study culminated in the development of her personal CRPS management curriculum. Because best practice suggests an individualized, multi-disciplinary approach to CRPS treatment, some of the main components of Lana’s management have included:

• collaboration with her medical team on appropriate interventions,
• on-going work with a personal trainer to design and implement a physical training program, (e.g., the application of graded motor imagery strategies and principles of explicit instruction—including the use of models/demonstrations, scaffolding, and strategic integration), and
• the use of a variety of self-management strategies to support daily living (e.g., the University of Massachusetts Medical Center’s Mindfulness-based Stress Reduction program by Jon Kabat-Zinn and Open-focused Training by Les Fehmi and Jim Robbins).

Lana currently works part time from her home in Alexandria, Virginia as a Research Associate and Curriculum Developer with the Center on Teaching and Learning at the University of Oregon. She continues her consultation with local and state education agencies and loves working with in-service teachers. In honor of CRPS Awareness Month, Lana is excited to share some lessons learned and a few strategies from her CRPS management toolkit: