Category: Guest Blogger for RSDSA

Written by Tracy Coval for the RSDSA blog.

Tracy Coval gives RSDSA a look into her life with CRPS and dystonia. See what she has done through her journey. Note this was initially posted on her blog, which can be found at this link (click here). Some of the images may be too graphic for some readers.

I was first diagnosed in 2002 with Complex Regional Pain Syndrome (CRPS/RSD) when I was 11 years old after a running injury. I was running in gym class and twisted my left ankle in. When I told the gym teacher I couldn’t run anymore, he wouldn’t believe me and had me keep going. The pain kept progressing, and I saw an orthopedist who diagnosed me with Tendonitis and put me in an air cast. The pain continued, and my ankle/foot was turning purple. After going back to the orthopedist 2 more times, the doctor finally told my mom, “I’m sorry but this is all in your daughter’s head. You need to get her psychological help”. After getting in an appointment with an orthopedic surgeon at Boston Children’s Hospital, I would learn of the name Reflex Sympathetic Dystrophy (the name was changed a year or so after to Complex Regional Pain Syndrome).

CRPS/RSD is a neurological disorder that causes pain waves to be sent to the brain, telling the brain that you are in chronic pain, even though nothing is wrong. CRPS/RSD usually develops after an injury, surgery, or even something as simple as a blood draw.  CRPS/RSD is known as the ‘suicide disease’ as many people can’t handle the pain anymore. The disease is rated on the McGill pain scale as being more painful than amputation, or giving birth naturally. CRPS usually develops in a limb, but there are cases where individuals are affected by it throughout their entire body. This is known as full body CRPS. The pain is the worst pain one could encounter. The pain feels like you are lit on fire, on top of stabbing, throbbing and aching pain. Think of sticking your hands in a bucket of freezing cold ice water and not being able to take your hands out of it. No one really understands CRPS, but the sooner you are diagnosed, the better chance you have to go into remission.

I would be told that I would need to be referred to a pain clinic, and that this would resolve on it’s own. Boy was this doctor wrong. I would learn that I would have CRPS for the rest of my life. A common phrase that was heard by my main provider was, “suck it up and live”. I was 11 when I heard this for the first time. I would then try every medication, nerve blocks, epidurals, lidocaine infusions, acupuncture, reiki, herbal remedies and more with no relief.

At the age of 14, I was sent to Children’s Hospital of Philadelphia (CHOP) to attend an aggressive physical therapy program. The goal was to retrain my brain to understand that non painful stimuli would not make my pain worse. This is known as desensitization and it’s done through physical activity.  Treatment was scheduled Monday through Friday, 7 hours a day. The staff were comprised of physical therapists, occupational therapists, social workers, art therapists, music therapists, and the main doctor.

The doctor running this programed believed it was crucial to be taken off all of your medication, and treated CRPS more as a psychological issue than a neurological issue. Both the physical therapists and the occupational therapists reminded me of drill sergeants; their approach towards the exercises were aggressive. In PT, I was pushed to my limits with many exercises, especially the ones where I was required to beat my record of the amount of reps I could complete in a minute. If I didn’t do more than my previous record, I would have to do it again. There were many tears, and too many vomit buckets to count.

After being there for two weeks, I had a few falls to my left arm, and I remember feeling this stabbing burning pain. It was discolored and swollen, and I couldn’t touch it. X-rays were performed and it was determined that the RSD had spread.

After being at CHOP for 1 month, I was finally discharged after being there for 1 month. The pain in my left ankle/foot and knee was gone but my left arm was horrible.

The pain relief in my left leg lasted for a year, and it was amazing. I went back to dancing 5 days a week, while doing physical therapy on my left arm. There was one day I was in dance, and I felt that familiar pain that I hoped would never come back. I followed up with my doctor at Boston Children’s who said there was nothing more that he could do for me.

At this time, I was finishing my freshman year of high school. I would now be on my own handling the pain. My mind set was to ignore the pain, and continue to do the things that I loved: art, dance, and cheerleading. By junior year of high school, I had taken a break from dance, as I fractured my spine. This recovery lasted for a year and a half. After getting cleared to return to activities, the CRPS was intensifying. I was noticing I was going through frequent flares, missing a lot of school, and it was getting harder to walk. I am amazed and proud to say I graduated high school.

2009 I started college at Lesley University in Cambridge, MA. I was excited to finally have the college experience. I was continuing dance and cheerleading, but realized I really needed help with the CRPS pain. After talking with a family friend, I got the name of a pain doctor who I still use to this day. The best part is he looks like Kramer from Seinfeld. I was his youngest patient at the age of 19. His treatment plan was to do a Spinal Cord Stimulator (SCS). A SCS is a mild electric current to your spinal cord. The goal is to block out the pain receptors by feeling the electric current instead. I went through the trial run, and found it extremely helpful. The trial gave me hope that I could go back to dance. I had my first SCS implanted December of 2011, my junior year of college. I had it done during my winter break. The SCS is a 6 month recovery that requires you not to bend. The pain from the surgery was extremely painful, but my CRPS pain was getting more tolerable, and I found I was finally getting relief. I am so grateful for all of my friends in school who were so helpful and understanding. My friends were awesome for pitching in, and I was fortunate that my professors were understanding of the surgery. After 6 months, I was back to dancing with my team. Words can’t explain how it feels to go back to something that you loved so much that had been taken away from you for so long. I was so happy, and really felt I was getting my life back. I was doing an art therapy internship with a pediatric inpatient psychiatric unit for over a year, and I was interested pursuing a career in social work.

After dancing for a year, I began feeling pain in my right foot. My foot was becoming discolored and was ice cold to the touch. When I followed up with my pain doctor, he confirmed the CRPS had now spread. He felt it was time to try a medication called Ketamine. Ketamine is mainly used during anesthesia, but there is reports that it helps treat CRPS. I would start with ketamine lozenges (it looks like the size of a starburst), and then I would go for infusions. The infusions would take 4-6 hours, and often I would be extremely out of it because of the side effects.

It was exciting to see how much the Ketamine was helping. I wasn’t missing as many classes, my flares were not as severe, and I was finally enjoying college more because the pain was better. I would go for infusions every 8 weeks, while being in my senior year of college.  By my second semester, I started working on an inpatient psychiatric unit specializing in eating disorders, and ecstatic to learn I was accepted into my top choice for graduate schools. I graduated Lesley University with my Bachelors of Science May 2013

Fall 2013 I started graduate school, while continuing to work part time. I was really busy, but happy with everything I was learning. My pain was still there but it was manageable thanks to the Ketamine infusions. Unfortunately, my treatment approach was about to change, as my health insurance stopped covering the ketamine infusions, and the ketamine lozenges. My doctor fought the insurance providers for months, but they wouldn’t budge. Next treatment plan: another spinal cord stimulator for the right side of my body. When I had the first SCS implanted, it was designed to control one side of the body. A year after I had my SCS implanted, a newer model came out where there is now an ability to get full body coverage. My doctor felt it was best to keep in my first one, and put in a second device. It was decided I would have this surgery done after I finished finals, and recover during winter break.

Two months before my surgery, I started having some issues with my job. Because the ketamine infusions had stopped, my flares were getting worse, and there were shifts I had to call out on. I had met with my nurse manager and had explained about CRPS, and had asked her if she wanted documentation. Her response was no. After a couple of weeks had gone by, I was called in to meet with the Director of Nursing who scolded me for calling out because she thought I was out partying and lazy. (I wish I was joking about this). I started hysterically crying and trying to explain I had a neurological disorder, and made sure to explain that my nurse manager was aware. I explained I was going to be needing neurosurgery again and it is out of my control when the pain flares occur. She asked to get the documentation, and set up a time to meet with human resources to talk to them about this. Once I met with human resources, I learned that my job would not be held when I come back from surgery, and I was let go from my position.

I had the surgery December 2013, and it was a rough and painful recovery. I would go to classes sitting on pillows, in attempt to try and be semi comfortable. I knew I needed to continue school as a distraction from the pain. Once I got through my 6 month recovery, my friend helped me get a job working at an emergency room working as a Patient Safety Assistant. Often, I would be working with psychiatric patients who were on a section 12, and needed supervision for safety reason.

Fall of 2014 I started my second year at school, and was assigned my first field placement; a homeless shelter for children in state custody. I was having difficulty balancing work, an internship, school, and RSD. I was offered at my internship an opportunity to be paid to work as a social worker on top of doing my school internship. For me this felt like the right fit as my internship was a shorter commute than my job at the ER.

Summer 2015 I decided I needed to take care of myself, and my whole self. I have struggled with weight all of my life, and had tried many different approaches to lose weight, and I was never successful. I decided to meet with a bariatric specialist, and after a lot of consideration and research, I decided to get the lap band. The lap-band is an adjustable silicone band placed around the top part of the stomach, designed to restrict food intake. At the time of surgery, a small device called a port (or reservoir) is placed under the skin of the abdomen. I wanted to lose weight on my own, but I knew that I needed help. Weight loss surgery is NOT a quick fix to losing weight; it is a tool to help. Weight loss surgery is a complete life change, and I was ready to take on that change. I had the surgery done on August 11, 2015 and I went into surgery smiling because I knew this was going to help my overall health, but especially the RSD. To this date, I have lost 100+ pounds, and I have never been so proud. It was worth the change, and I did not realize how important your diet is especially with a chronic illness.

I entered my last year of school, Fall of 2015, and my next placement was at a homeless shelter for pregnant teen and teen moms. I had been having a lot of muscle spasms, especially in my feet. My toes would curl and get stuck at times from the muscle spasms cramping my toes. I thought this was from the RSD and really didn’t think much of it. When I would bring this up to my pain doctor, he wasn’t sure why the cramping was so severe. I remember laying down on the couch Saturday morning with the worst muscle spasms. I took my meds hoping it would help loosen them. 2 hours later the muscles spasms were continuing and were so severe I was hunched over crying from the pain. My toes were curled and I was having uncontrollable cramping. It felt like the worst Charlie horse that would not release. 911 was called as I couldn’t move. My legs were locked, and it was the most frightening moment of my life. Paramedics had to carry me out of the house as I was howling from the contractions. After being in the ER for 6 hours, I was discharged, and told to go see my pain doctor immediately. I got an appointment with him a week later and described to him the symptoms and the ER event. I would learn I have a condition called Dystonia, and he informed me that he doesn’t treat this. He warned me that if this happens again, where I get locked in contractions, then I have to go to the ER ASAP to break the abnormal posture before my brain thinks this is the way my toes should be positioned.

Dystonia is a movement disorder where you have uncontrollable muscle contractions. Usually body parts will twist involuntarily, have repetitive movements and/or can often get stuck in different postures. I would later learn that often times CRPS/RSD and Dystonia like to be best friends. Not always, but it can happen.

After my first initial diagnosis, I would be in the ER two more times due to my legs locking up, one of the situations happened while I was driving and lost control of my car. I was hospitalized for 9 days, and all of the doctors felt that this was psychological and I was a drug seeker, even though my toes were stuck in a curled position. I was sent to a rehabilitation center for another two months. All of the doctors there tried different medications, Botox, physical therapy, and occupational therapy and nothing was getting better. The doctors all had team meeting and felt it was time I be transferred to another hospital as they felt that I need further help with pain control, but they also felt this was mainly psychological. I was transferred to another hospital to have a psychiatric evaluation performed per request by the insurance company. The three doctors who were in charge of my case felt this was not psychological, and felt it was in the best interest to be transferred to a Boston hospital to work with a Dystonia clinic. I was in the hospital for three days, and then finally discharged and wheelchair bound.

During the next couple of months, I would be tossed from specialist to specialist all agreeing that my case was too complicated, and there was nothing they could do. One doctor referred me to a neuropsychiatrist at Massachusetts General Hospital, and my appointment wouldn’t be for another 6 months. During this time, I taught myself how to walk again using forearm crutches. I did not have any form of physical therapy during this period, so I forced myself to practice every day, several times a day. I took myself off all of the opioids, muscle relaxers, and benzodiazepines. I decided to use medical marijuana to help with the pain and muscle contractions, which was one of the best decisions I have made. I was tired of having so much medication, and I wanted to prove to the doctors I was not faking this.

When I finally had my appointment with the neuropsychiatrist, I was amazed he spent an hour and a half with my dad and I. He agreed this was a form of Dystonia, and this was not psychological. I would then be referred to a neurologist who specializes in Dystonia. This specialist would spend over 3 hours with me for my first appointment. Apparently, there are several types of Dystonia’, but often physicians are not educated about Functional Dystonia because the United States is not up to date when it comes to Functional Neurological Disorders. Apparently, the United Kingdom is extremely educated on this, and if I was in the UK, the muscle contractions could have been reversed because there is a proper treatment team protocol that is used when a patient starts to show signs of a Functional Dystonia. The sooner it is caught, the faster it can be treated. I had learned during this appointment that if I got to this neurologist soon enough, this all could have been reversed. I would then be referred to a physiatrist to determine if my ankles/feet/toes could be saved.

While waiting to see the physiatrist, I would travel to Rhode Island to meet with Dr. Pradeep Chopra on May 24, 2016. Dr. Chopra is very well known for CRPS and his diagnostic work. After spending over 5 hours with my dad and I for our initial visit, another diagnosis added to my medical terminology list: Ehlers-Danlos Syndrome (EDS). EDS is a genetic disorder you are born with that affects your connective tissue. Usually this is seen with joint hyper-mobility, skin hyperextensibility (my skin is really stretchy, I know gross), and fragile tissue. Dr. Chopra was able to help me understand that I was born with EDS, and the EDS most likely caused the CRPS, and the CRPS caused the Dystonia. Dr. Chopra also felt something else was going on with my spine, but that will be discussed another day.

In September of 2016, I would meet with the physiatrist, who did a nerve block to numb my leg, and see if he could break the contractions. His thought was if my brain couldn’t feel the pain then the contractions would break; my toes never moved no matter how much he forced it. I learned that my toes were paralyzed, and my ankles were frozen. I was told it was time to meet with an orthopedic surgeon as I would need surgery. I was told it could be either reconstructive surgery, or amputation.

After waiting a month, I got an appointment with an orthopedic surgeon who is the Chief of Orthopedic Surgeons for Brigham and Woman’s Hospital. He looked at my feet, and said he didn’t even know if he could get to the tendons in my toes because of how severe the contractions were. He wanted to do a further exam by putting me under anesthesia and seeing if my toes would relax. We tried it with no such luck. The surgeon brought in 8 opinions to see what my best option was. All of the doctors felt amputation was most likely what was going to happen, but here was the action plan: tendons would be severed in each toe, bone would [be] removed from each toe, and pins would be placed. I was told to prepare for amputation as the surgeon was unsure that my skin would hold up when it came to suturing the wounds, and the plastic surgeon felt that I was not a good candidate for a skin graft. I learned this surgery will not fix the Dystonia, or my ankles, but it will help my walking and pain in the long run. Both feet have to be done, but the left foot will go first as it is the worst out of the two.

The first surgery was done on March 28, 2017 and I woke up with all of my toes. There were so many tears of joy and happiness as everyone is amazed this happened. I was given a 90% chance that I was going to wake up from surgery needing amputation on half of my foot. All of the doctors have been preparing me for amputation, so that was what we were all anticipating. I was under the knife for four and a half hours, as the surgeons worked as hard as they could. All the tendons of my toes were severed, bones were removed, and I also have a bone fusion for my big toe where the knuckle is.

On June 30, 2017, the second surgery was performed. During this procedure, the pins were removed from all of my toes, and my facia muscle was cut. The purpose of cutting the facia muscle was to see if it would lengthen the Achilles tendon. The surgeon and the Dystonia specialist explained that if we did not do work on my tendon, I would never be able to walk again.

My foot morning of surgery 3/28/17

My foot morning of surgery 3/28/17

The first time looking at my foot after surgery 3/28/17

2 weeks post-operative after the pins were taken out and the facia muscle was cut

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Written by Guest Blogger Stephanie Umlor for the RSDSA blog.

While we live with CRPS daily and can let it take over our thoughts, we often don’t realize how our loved ones are affected. This is a reminder that every caregiver and loved one can be affected by this CRPS “monster” as well.

A reality of anger, hurt, and pain rages havoc on our bodies and minds CRPS is a methodical monster. Convincing us that we are helpless, worthless, a burden, as well as unable to to love someone the same way as we did before. Leaving us in an atmosphere so overwhelming we might as well stay. I call this “ CRPS Pain Limbo;” I know most medical professionals refer to it as “ The 5 Stages of Grief.” I think with CRPS sufferers we tend to stay in the anger and bargaining stage more than any other one that’s why I call it CRPS pain limbo.

What happens if one day you stop and wonder if maybe my spouse may feel the same as I do? Impossible right? Not at all, CRPS may not impact the ones we love with constant pain or fatigue but it does impact them psychologically. They feel Helpless, Worthless, maybe as a burden, and they feel isolated or alone which are a lot of the same feelings we feel. I realized this year from a situation due to CRPS how my wife (Valarie) was feeling as devastated as I had been through the last 7 years. I have accepted that CRPS is a part of me and the perception I believed was reality became an obstacle I had to go through to be where I am now.

Reality is a hard pill to swallow and I had my dose from Vascular test results that were given to me June of this year. When the Vascular specialist came into the room to talk to me I figured he would be like the rest of every doctor, I will admit it he wasn’t. When he first started talking he sounded like Charlie Brown’s teacher speaking, then it started to make sense he was telling me I have bilateral Peripheral Artery Disease(PAD)! He continued by telling me that it was completely neurological and there was nothing he could do, but then he said,” This is CRPS at it’s finest! I mean This is what CRPS can do in its truest form.” I know most people probably took that as a crude statement, when I told Valarie she did but I didn’t. He explained that he had extreme concerns about possible wounds that could develop on my feet and not heal which would or could cause an amputation. I let it sink in and then said, “ So I could possibly lose a toe or my foot, that’s what you’re saying?” The look on his face was unforgettable along with the words that followed that look, “ That would not be the case in your situation! Due to the constriction in your legs the amputation would happen either right below the knee or above it.” My heart sank and continued sinking as I was heading back to my car. I got into my car thinking I was going to throw but the end result was me bursting into tears and a quick phone call to my wife.

When Valarie got home from work, I met her at the back door; her eyes along with the way she wrapped her arms around explained everything I have ever thought or wondered. Still to this day I have no idea why or how the so called CRPS pain limbo melted away to let me see how she was feeling through all of this. For many years I never could understand why my wife was so quiet about certain aspects of CRPS, then becoming frustrated. I imagined it was because I wasn’t who I use to be physically and I was just a burden in her life now, how wrong I was! In that split moment of that hug all of those times flipped through my mind like a photo album and then I said, “ I understand now and I am sorry.” I went on to explain that during the years I never contemplated how she was handling everything. She told me she, too, felt helpless not being able to take the pain away, she felt worthless because I always refused her help, she never wanted to say was in pain due to how could it even compare to what I feel on a daily basis, and she felt alone because she wanted to understand how I felt but I just wouldn’t let her in.

Like I said earlier reality is a hard pill to swallow and CRPS is an intelligent monster causing catastrophic effects to the ones we love and the ones suffering from painful sensations. I would definitely go through it all again to be able to feel the calming relief I felt that day and continue to feel. Learning that communication, involving the people closest to you, and realizing my wife may not be able to fully understand my pain but she can relate to the emotions endured with CRPS has created a very stress free life.I feel strongly that if a CRPS sufferer feels alone and misunderstood their spouse, partner, or girlfriend/boyfriend [or other caregiver] probably feels the same way. So, please try to communicate with them because they are our biggest cheerleaders .

Written by Dr. Terri A. Lewis

What is palliative care and what does it mean for people with complex pain syndromes? Dr. Lewis sheds light on this topic for people that are curious about it and would like to know more.

What is Palliative Care?

Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The World Health Organization (WHO) defines palliative care according to the following criteria –

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

• provides relief from pain and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten or postpone death;
• integrates the psychological and spiritual aspects of patient care;
• offers a support system to help patients live as actively as possible until death;
• offers a support system to help the family cope during the patients illness and in their own bereavement;
• uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;
• will enhance quality of life, and may also positively influence the course of illness;
• is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

WHO Definition of Palliative Care for Children

Palliative care for children represents a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families is as follows; the principles apply to other pediatric chronic disorders (WHO; 1998a):

• Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.
• It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
• Health providers must evaluate and alleviate a child’s physical, psychological, and social distress.
• Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.
• It can be provided in tertiary care facilities, in community health centers and even in children’s homes.

What Services Are Coordinated by a Program of Palliative Care?

Palliative care is specialized medical care coordinated with community supports designed to focus on providing relief from the symptoms and stressors imposed by serious illness. The following features characterize palliative care philosophy and delivery:

• Care is provided and services are coordinated by an interdisciplinary team;
• Patients, families, palliative and non-palliative health care providers collaborate and communicate about care needs;
• Services are available concurrently with or independent of curative or life-prolonging care;
• Patient and family hopes for peace and dignity are supported throughout the course of illness, during the dying process, and after death

Services address life planning, community care specialties, referrals and program eligibility management, insurance coordination, nursing, occupational or physical therapies, pain management, social supports, psychological and mental health supports, spiritual supports, diet, nutrition, and disease management education, assistive technology and home modifications. These include-

Physical problems. (the symptoms or side effects)

• Pain
• Trouble sleeping
• Shortness of breath
• Loss of appetite, and feeling sick to the stomach

Treatments may include:

• Medicine
• Nutritional guidance
• Physical therapy
• Occupational therapy
• Integrative therapies

Emotional, social, and coping problems. Patients and their families face stress during illness that can lead to fear, anxiety, hopelessness, or depression. Family members may take on care giving, even if they also have jobs and other duties.

Treatments may include:

• Counseling
• Support groups
• Family meetings
• Referrals to mental health providers

Practical problems. Some of the problems brought on by illness are practical, such as money- or job-related problems, insurance questions, and legal issues. A palliative care team may:

• Explain complex medical forms or help families understand treatment choices
• Provide or refer families to financial counseling
• Help connect you to resources for transportation or housing

Spiritual issues. When people are challenged by illness, they may look for meaning or question their faith. A palliative care team may help patients and families explore their beliefs and values so they can move toward acceptance and peace.

What is the Difference Between Palliative Care and Hospice?

Palliative medicine is a medical subspecialty provided by doctors who offer palliative care for people who are seriously ill. Palliative care relieves suffering and improves quality of life for people of any age and at any stage in a serious illness, whether that illness is curable, chronic, or life-threatening.  It is not necessary to be at the end stage of illness (3-6 mos prior to impending death) to receive or benefit from palliative care services.

Who Should Receive Palliative Care Supports?

Patients panic when they hear “palliative care” and think it means they are dying. But palliative isn’t only for people who are chronically or terminally ill, and it is not the same as hospice care. Palliative care may be offered for people with illnesses, such as, but not limited to:

• Cancer
• Heart, lung, or kidney diseases
• Dementia or Alzheimers
• HIV/AIDS or cancer
• Neuromotor diseases such as Parkinson’s, ALS (amyotrophic lateral sclerosis), Muscular dystrophy, or Multiple sclerosis.
• Injuries that arise from trauma or medical harms
• Any chronic disease that results in the need for long term coordinated care of medical and community supports for an extended period.

When Should Palliative Care Begin?

Palliative care should be considered whenever a determination is made that the a disease or injury is present that requires multiple services coordinated over a long period of time in order to optimize care, treatment and quality of  life.  The goal of palliative care is to place the right resources at the disposal of the patient and the care team to ensure that services delivered optimize targeted treatment goals and outcomes while helping the individual and family to remain as independent as possible in the care that is provided.

For the chronic pain patient, this may mean beginning care when treatment and pain management require intensive supports through a combination of modalities that require risk management and coordinated inputs from multiple specialty providers working in concert to assure that patient’s desires and outcomes are monitored.

Palliative Care and the Person with Chronic Pain Generating Diseases

Palliative care in America is not uniformly available or consistently provided to eligible individuals. This is a function of state regulatory implementation, insurer limitations, and access to trained and knowledgeable medical professionals and carers.  To investigate the availability and implementation of palliative care services in your state, look to these links-

https://www.nhpco.org/sites/default/files/public/palliativecare/corporate-practice-of-medicine-50-state-summary.pdf

Palliative care: The legal and regulatory environments parts I & II

https://www.nhpco.org/sites/default/files/public/palliativecare/legal_regulatory_part1.pdf

https://www.nhpco.org/sites/default/files/public/palliativecare/legal_regulatorypart2.pdf

Click here to look for qualified provider organizations and practitioners

What Are the Limitations and Access Issues Associated with Palliative Care in the USA?

Palliative care is an important service for persons with chronic illness. It not only improves patient outcomes but it prevents secondary and tertiary harms from poor handoffs between specialty treatment providers.  It also prevents duplication of services and helps to control costs of care. But it is not uniformly available.  As an essential service it is plagued by uneven regulation and resource allocations across the states.  Some states do not have enough trained medical providers, and some states have lost providers due to reimbursement by insurers for the services provided.  On the whole, insurers limit provider choices through narrow networks which may in turn result in capitation or rationing of care to fewer people than the number that actually need the service.

What is certain is that the population is aging and needs are greater than ever. Not only is medical education a critical need but so is opening of regulatory process to allow eligible persons access across the lifespan as their care needs change. Persons with chronic pain generating syndromes often find themselves dealing with multiple diagnoses that will benefit for multidisciplinary approaches including palliative care.

For more information visit:

• Medline
• National hospice and palliative care organization
• Guide to Palliative and End-of-Life Care

Written by Guest Blogger Sara

We love to post uplifting stories about people living with CRPS/RSD. But, what about the moments where it is nearly impossible to be positive? Do we let that go unnoticed, or should we reach a point of acceptance that RSD comes with a range of emotions. Sara covers her feelings on RSD and how it is like an angry ocean.

Each day, I face the endless ocean, scanning the horizon, tipping my head to the sky searching for signs of storms.  Will the currents be calm, allowing me to drift easily under a sunny sky with my aching and ancient bones; or will the storms clouds gather, thunder booming, lightning splitting the horizon with the surf threatening to pull me under?  Navigating life with RSD is a lot like diving into the vast ocean.  It’s nearly impossible to comprehend the depth, vastness and magnitude of it; and it’s practically alive.  One day calm and “background”, other days it’s a Category 5 Hurricane, tearing apart cities and wiping entire towns off maps.

The days I find the hardest are the days I wake up angry.  On the surface, all appears calm.  There is nothing that screams out “BE ANGRY,” and yet, I am.  I’ll try to shake off the feeling, the same way I try to shrug off the buzzy hands, the stiff joints, the swollen limbs and yet, it won’t go away.  I open my browser and as I scroll through my various feeds – Facebook, Instagram, blogs; that angry itch grows.  So many people doing things that I miss being able to do, writing about accomplishing x, y, and z while having an autoimmune and loving life.  I’m left feeling like a failure.  I’m struggling to keep up with the basics.  I’m frustrated and angry. I’m angry that I’m angry; I’m guilty that I’m angry.  I’ve got a list a mile long and for that, yes, I again feel guilty.  While others lead off with, “So grateful to my autoimmune- it’s forced me to slow down and now I smell the roses, enjoy time to knit, learn coding and Chinese, and am grateful to watch each sunset as I haven’t let this stop me or take my happy away!” I’m left feeling frustrated and sad as my list goes more like: “Struggling to find a doctor locally to work with my main RSD doctor, depressed by the amount of medications I have to take, angry and depressed from my Spinal Cord Stimulator (SCS) and the pain and discomfort it causes me, the isolation and loneliness I experience, hearing “but you look fine,” trying to make my body listen to me and like a stubborn child it ignores my command, my treatment is less effective every year, the punishment I get from my body when I push too hard and do too much, the length of time to recover when I do push too hard and do too much, feeling like I’m sitting on the sidelines of life rather than being fully engaged as I once was, being bone tired, yet sleep evades me due to the pain, there is no cure, there is no cure, there is no cure.”

As you can see, my list is less than cheery.  I’ve struggled with feeling like a failure as a result.  Feeling as though I wasn’t dealing with my disease properly.  I spent so much extra energy, time, and stress trying to push my feelings of anger down, away, anywhere really, except express it.  Finally, on a trip to the beach, with the sun beating blissfully down and warming my sore bones, the answer came to me.  As I idly read the beach signs, a thought occurred to me.  Anger is much like a rip current.  The ocean may look calm but you can still get caught in the undertow.  They are powerful and not to be ignored.  If you struggle against a rip, you can tire yourself out and drown, which is how I was feeling trying to bury my feelings of anger and frustration.  Instead, go with it.  Eventually you will get out of the rip and make your way to shore again.  Isn’t that what we are all trying to do?  Make our way home.  On the days that I’m experiencing anger, hurt, frustration, I let those feelings out.  This fall will be 19 years since RSD walked into my life and shattered any sense of normalcy.  After nearly 20 years you would think that I would be accustom to this beast.  After all, I’ve had it for more than half of my life.  The answer is a resounding NO!!!  I still rail against it, go back to the day and rewind it in my mind as if I could make it stop, think of the years lost as my ortho told me that the surgery went great and all was fine as I fell apart.  Some days, I can put those feelings in a box and on a high shelf, other days they spill out and I have to deal with them.  My advice: be angry, be mad, let it out.  RSD is so difficult to deal with and it’s a wily beast.  It takes every ounce I have and nearly all of my spoons to get through my day.  Why waste any of those precious spoons or energy pushing away a completely valid feeling?  It would be the same as experiencing a very sad event in your life and doing the old “stiff upper lip, buck up buttercup” approach.  Hardly helpful and certainly not doing an ounce of good.  When you are angry, I say let yourself be angry.  If you wake up 1 week in or 40 years in from your diagnosis and you are mad that you have RSD and you have to deal with the pain and problems associated – be mad!  Let yourself be angry!  My children have a book that talks about their emotions, how they can be happy, sad, mad, excited.  “If you are mad or sad, that’s ok, it won’t last forever.”  I love that book.  It acknowledges that you can have the less than happy emotions, while saying that it’s ok, and that they won’t last forever.

While seeking out the good vibe blogs is a wonderful thing and I do love a silly animal video, I also think that reading raw, real blog accounts is equally important.  Life is hard enough, before throwing in something like RSD.  Be kind, and let yourself feel the entire range of emotions.  If you’re mad, be mad however that is to you, whether that’s screaming, breaking something, writing something, whatever you need to do to channel your anger.  Let it out, don’t swallow it down, in my experience that will only create another current to swim against.  Go with the flow of your emotion, and when the feelings subside, make your way back to the beach.

Cheers to being angry!

To read more of Sara’s writing, please visit her blog by clicking here!

Written by Guest Blogger Sylvia Miller

Being diagnosed with RSD CRPS can cause people to go through a range of emotions: denial, frustration, confusion, sadness, incompleteness, etc. Sylvia writes about what it was like trying to find an answer that wasn’t RSD/CRPS. What happens after the RSD diagnosis? How can you impact your life regardless of the pain?

3 years ago, I suffered a fall and fractured my ribs.  From that point forward, it seemed to be that I reached out to any doctor to [try to] understand the pain I encountered.   A physician diagnosed me as having RSD, but I thought, surely, this doctor is wrong.  So, I continued to research and search for any understanding about RSD and locate any physician to tell me I did not have RSD.  The news I dreaded hearing confirmed I was diagnosed with RSD. There is no cure, so, where do you go from the point of diagnosis and what do you do after the diagnosis?   Searching countless and excessive research to help me stop the insanity of the pain became a full-time job.  Having family and friends get a glimpse and understanding what I was dealing with was a full-time job.

I was placed out of work and my new full-time job became searching for answers and searching for doctors to help me.  From injections to consults with no relief.  Grasping out to every newspaper, government official and talk show host to spread awareness and no response.  Feeling alone and trying to get family members, friends, acquaintances to understand this disease.   This truly is a full-time job.   I believe unless you experience something yourself, you can truly never understand the depth.

Cancelling plans with friends and family has been consistent as the pain permits me from participating in activities. Finding new ways to do simple household chores has become a challenge but you reinvent a new way to handle. Anxiety has now become an issue. From physical therapy to Yoga to walking, trying anything to keep me occupied in hopes the pain will come to a halt.  Feeling alone has become the new reality.

For now, my search continues, but confirmation is that I get through every day and know somewhere there is an answer that will give life back, stop the insanity, and remind myself daily to never ever give up and positivity is a strong force.