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What It's Like Living With Complex Regional Pain Syndrome, the 'Suicide Disease'

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It’s 4 a.m., and once again I’m unable to sleep. As I sit alone in my living room, guided meditation for pain streaming though my iPhone and sounds of my husband and dog’s snores hovering in the background, I attempt to choke back the tears.

I am on fire.

There are no flames, smoke or alarms sounding nor is there any urgency to put it out. Unlike a traditional fire, this one cannot be extinguished. Intense, unrelenting burning pain is affecting all of my limbs. They are red, warm to the touch, and grossly swollen. All I can do is wait, hoping the embers will soon dwindle to a low, more tolerable smolder.

I begin scanning the figurative toolbox in my mind. I’ve collected a fair amount of tools over the last 12 years. From medication to mindfulness, I’ve hoarded every coping mechanism I can. During the last several hours, desperate for a bit of relief and sleep, I’ve tried them all, but the fire rages on.

Complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD) is one of the most painful disorders known to man. On the McGill University Pain Scale, CRPS/RSD ranks 42 out of 50. To put this level of pain in perspective for you, that ranks higher than both childbirth and amputation.

In addition to pain with an intense burning-like quality, many of us also experience what is called “allodynia.” This is essentially pain caused by something that wouldn’t normally cause pain. What this translates into for a CRPS/RSD patient is the inability to tolerate items such as clothing or shoes on the affected areas. Things like a sheet, blanket, or even the wind blowing a light breeze can cause extreme pain.

Deep bone pain, muscle spasms, contractures, dramatic color and temperature changes, and dystonia, are some of the other common symptoms a CRPS/RSD patient often struggles with.

Have you ever needed a root canal? Remember the pain and sensitivity? How about the continuous throbbing or basic things like talking or hot or cold causing searing pain? What about the desperation of just wanting the pain to end?

Now picture all that and then being lit on fire. Imagine the pain, sensitivity, and burning all over your entire body, every minute of the day. That is complex regional pain syndrome (CRPS/RSD).

The emotional effects of CRPS/RSD often have a profound effect too. Living in constant, excruciating pain, losing the ability to work or go to school, mobility and dexterity challenges, strained social and romantic relationships, financial obstacles, and lack of understanding and support from family and friends can all contribute to the development of anxiety or depression. Many become overwhelmed, discouraged, and feel hopeless. Dubbed the “suicide disease,” some patients desperate to halt their continuous pain, end their life. It’s one of the many tragic aspects that accompanies CRPS/RSD.

As if the physical and emotional challenges, lack of sleep and severe pain weren’t arduous enough, CRPS/RSD is classified as a rare disease, lacking proper awareness and funding — not only among the public but shockingly among the medical community as well. Those medical professionals who have heard of it are often addled with an outdated understanding of diagnostic and treatment information, further complicating a patient’s prognosis.

Treatment for RSD/CRPS in many respects is still archaic and can often be just as unpleasant as living with the disease itself. Sympathetic nerve blocks, ketamine infusions, epidural infusions, IVIG, desensitization therapy, spinal cord stimulation, intrathecal pumps, and powerful medications are just some of the common therapies used to manage CRPS/RSD. None of them are prescribed with the goal of curing a patient, rather simply offering pain relief and improvement in quality of life.

When one is fortunate enough to have a competent doctor who provides a diagnosis and proper treatment plan, that is simply the first step. The patient and physician must then deal with the insurance companies, workman’s comp, or the Veteran’s Administration to get coverage. Due to CRPS/RSD’s status being a rare disease, effective therapies and medications are often denied and deemed “experimental,” leaving the patient in pain and in limbo.

Living with this disease is so incredibly painful and challenging. It’s easy to understand why some don’t feel they have the ability to continue. Every day is a struggle, new challenges always presenting around the corner. Our community desperately needs help. We need recognition, funds, awareness, and respect from both the public and medical communities.

As the sun rises this morning and I prepare myself to face the day with no sleep and high pain levels, I cling to that sliver of hope I hold in my heart. I hope one day the narrative can change and with better treatment, lives will improve and be saved allowing CRPS/RSD to shed it’s heartbreaking nickname.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

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Stock photo by champja

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To the Nurse Who Told Me Not to Cry When I Was in Pain

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Dear Nurse,

Let me first start by saying I have a surmountable amount of respect and admiration for you — as a human being and as a nurse. You have made so many sacrifices to make sure not only I feel comforted and cared for, but also every single one of your patients does, too.

I appreciate your advocacy, I appreciate your comfort, I appreciate your advice and I appreciate you did everything in your power to make sure I was receiving top-notch care. I can only hope I can be like you to my own patients one day. I write this not to criticize your care or your training, but if I were the nurse, I would want to be educated on how do and understand things better.

Today is my second day of an admission at a new hospital, and your face has been the only familiar thing I’ve seen in the past 24 hours. You welcomed me to the unit and were unaware this admission wasn’t my first rodeo. I’ve been admitted and sick many times before. I gave you a brief update on my conditions, which are rare and you hadn’t heard of. But you took the time to look it up. I appreciate that simple act more than you know, but the difference between what the web tells you about my condition and how drastically it affects me was something you couldn’t understand. No amount of research or education could tell you what it is like to live with the conditions you read about.

I told you I have an extremely painful condition known as complex regional pain syndrome (CRPS), which is also known as reflex sympathetic dystrophy (RSD). I’m sure the web told you the pain is excruciating and that it’s chronic and progressive.

But then there’s me — a young 22-year-old who smiled and laughed. You told me I didn’t look like someone who was in pain. Maybe I’ve missed the memo, but I don’t think there’s a certain way to look when you are in pain. I live with this pain every second of every day. I could very well sit and scream and cry, but that isn’t feasible. I have complex, chronic, painful and progressive diseases that rob me of things people take for granted every day, but I will not let that be the extent of my life. While I’m flattered that I don’t look like someone who is in pain, I have to pause because that ignorance is what makes me so fearful of this world.

Today, when I returned to my room in hysterics because I hadn’t received adequate pain relief in 48 hours, you told me to breathe and that breathing will help my pain. But I had been on a continuous pain management regimen for over a year, and it was working for me up until it was abruptly stopped because I fell through the cracks in the system.

Despite my advocating, begging and pleading, I was ignored. My pain flared, and I couldn’t take it anymore. I was told I needed to wait another 24 hours to get my medication sorted out, and I went into a complete meltdown. You kept telling me to stop crying, to breathe and to focus on other things besides medication.

You have known me for two 12-hour shifts. You have no idea how hard I am working to cope with pain and how well I was coping up until I was deprived of a critical part of that coping cycle. You have no idea I’ve been fighting for almost 10 years. You have no idea I’ve done everything I can to better myself and my life. You have no idea how much it took me just to sit up in bed today. You don’t know how exhausted my body is and how exhausted I am. You have no idea I’m fighting a life-threatening infection on top of all of these conditions. You don’t know how much my illnesses have taken from me. You also don’t know how much strength I’ve gained because of it.

Instead, you looked at me and told me the levels of medications I’m on are too high for someone my age. You repeatedly told me to stop crying, and it would make my pain levels worse. You said I needed new coping mechanisms.

You don’t know much pain it takes for me to cry — let alone at that level — but it’s not something that comes easily. I know your sentiment and intentions were kind and constructive, but I am not a 22-year-old girl on high levels of pain medication for no reason, and it isn’t your place to decide that. I am so much more than you will ever know.

When I enter the doors of the emergency room with a bracelet slapped on my wrist, I become dependent on you and your colleagues to keep me safe, comfortable and cared for. I am completely vulnerable. When I lie in this bed, I don’t have the energy to advocate for the things that I should have had.

I shouldn’t have to justify my pain or my symptoms. I don’t think health professionals realize how helpless I am in the hospital or how helpless any of us are. I’m in the hands of people who are supposed to help me, but instead I was told there was nothing you could do. If you couldn’t do anything, who can? My tears were not because I was throwing a fit to get medication. It was not an overdramatic representation of my pain. It wasn’t because I’m spoiled. It was because I was hurting, frustrated and felt like I’m been let down by the people who are supposed to keep me from getting to this point. My tears were because I was so scared and fearful that I was at your mercy, and I couldn’t do anything about it.

There is no patient you will ever encounter who will precisely fit the description of any disease or disorder they were diagnosed with. Please remember there is a fine line between knowing a disease and understanding it. Unless you experience it, there is no way to understand. That is OK. It’s OK not to understand, but please just try to.

Learn from your patients, not just textbooks. I hope the next time you encounter a situation like this that you’re more empathetic. Empathy leads to understanding, and that’s what your patient needs most — someone to understand.

Really, more than anything, I just really hope you remember how dependent your patients are on your kindness.

Kindly,

S

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Life With One of the Most Painful Conditions Known to Modern Medicine

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November is RSD/CRPS Awareness Month.

RSD/CRPS goes by many names: reflex sympathetic dystrophy, reflex neurovascular dystophy, complex regional pain syndrome, hand-foot atrophy, Sudeck’s atrophy, amplified musculoskeletal pain syndrome, and causalgia (to name a few common ones).

So what is RSD/CRPS? To start, it is the most painful medical condition known to man at a 45/50 on the McGill Pain Scale. Because it is so painful and it is hard to find good doctors to treat this condition, CRPS has a grim nickname: the “suicide disease.” We lose too many RSD/CRPS warriors because the pain is just so unbearable. I personally have lost several friends to the disease, and I’m always fearing who will go next. Many people with RSD/CRPS have been to the deep dark place, where they just want to escape the pain, but not everyone climbs out of it.

RSD/CRPS is a disease of the central and autonomic nervous systems. Within the autonomic nervous system, there are two branches: the parasympathetic or “rest-and-digest” mode and the sympathetic or the “fight-or-flight” response. With CRPS, the sympathetic nervous system is inappropriately activated for a prolonged amount of time. While it is more prevalent in women, men can get it as well. CRPS is a diagnosis of exclusion, meaning that doctors have to test for everything else before they can diagnose CRPS. Bone scans, thermograms, EMGs, and QSARTs can be used to help support diagnosis. I was diagnosed off a grossly abnormal QSART. Therefore, it is easily misdiagnosed/undiagnosed. While CRPS may not be life-threatening by itself, several people, including myself have nearly lost their lives to it because of botched procedures, failed therapies, severe allergic reactions, and side effects of medication.

There are two kinds of CRPS: type 1 and type 2. Type 1 occurs without a direct injury to a nerve. Many people with type 1 CRPS do not know why their symptoms have started. Type 2 CRPS, formerly known as causalgia, occurs after a direct injury to a nerve causes some degree of damage.

Regardless of whether someone had type 1 or type 2, the general course of the disease is similar. Most people experience a burning, stabbing, shocking, gnawing, crushing, throbbing, and cold pain. Every person is different, so these are just a few ways someone with CRPS might describe their pain.

Some other symptoms of CRPS include:

  • allodynia: hypersensitivity to light touch
  • hyperalgesia: extreme hypersensitivity to pain
  • changes in hair and nail growth
  • skin color changes
  • skin texture changes
  • temperature changes
  • changes to sweating patterns
  • stiffness in joints
  • temporary paralysis
  • delayed wound healing
  • hypersensitivity to sounds and light
  • irritability
  • edema
  • depression
  • insomnia
  • fatigue
  • dystonia: involuntary muscle spasms causing a fixed contracture of a single extremity or multiple extremities
  • myoclonus/tremors: the quick random  jerking movements
  • muscle atrophy
  • osteopenia/osteoporosis: bone density loss due to reduced blood flow
  • gastrointestinal problems
  • failure to thrive
  • weight gain/loss

The CRPS community must band together to get us the cure we so desperately deserve. Remission is possible, but we need a cure. It all starts with awareness. Join us on November 7, 2016 to “Color the World Orange.” Simply wear an article of orange clothing, snap a picture and post it to social media! Until then, “Keep your chin up and charge the mountain!”

Please visit the following websites to learn more about RSD/CRPS

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

We want to hear your story. Become a Mighty contributor here.

Stock photo by Wavebreakmedia Ltd

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How The Mighty Has Helped Me Cope With My Illnesses

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I have been writing on The Mighty since November 4, 2015 and in that year, I have had 15 articles published. When I was first diagnosed with complex regional pain syndrome, I felt alone. I had plenty of friends but nobody truly could understand what I was going through.Since then I have also been diagnosed with fibromyalgia, Lyme disease, joint hypermobility, anxiety and migraines. As I started meeting people with the same illnesses as me online, we supported each other which helped a lot. I realized how much better I felt when I could freely talk about what I was feeling to people who just got it.

I never used to like writing and I always thought I was bad at it. I came across an article one day that was written on The Mighty and I started scrolling through all of them. I then decided I would try and write one and see what happened. I wrote a piece to thank my mom for everything she has done for me over the years and it was accepted. Reading the positive
comments on it, I realized I could help others.

Combined, my articles have been shared over 8,500 times and I have had countless likes and comments on them. I hope that my articles have had an impact on the lives of people who have read them. I also hope that I have taught people about different illnesses and the impact someone can have. Some of the comments have inspired me to continue to do what I do and share my views. Some of the comments I have read are:

“Exactly what I needed to hear today, thank you so much.”

“This has helped me to support those close to me who also battle chronic pain.”

“It helps her and I to know that we aren’t alone and that this is a real thing.”

“You sound like a tremendous young lady.”

“LOVE this. Just perfect!”

“I appreciate this article so much.  I am not alone in this.”

The Mighty has provided me an amazing support system because I have met multiple people through sharing our stories. It has given me the opportunity to make a difference in this world and teach others. It has improved my writing academically and it has allowed me to be more open. It has allowed me to vent and not keep everything bottled up.

I want to say thank you to The Mighty for giving me this amazing opportunity and to my readers for their countless likes, comments, and shares. I would not be where I am today if it wasn’t for you.

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When You're Afraid to Call 911

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I am 24 and I have a neurological disorder called complex regional pain syndrome. I have been battling chronic pain for six years and will spend the rest of my life enduring this condition. I manage my pain with the aid of a service dog and I use prescription opiates responsibly. I am strong and intelligent. When it comes to doctors, I am defensive first, and relaxed never. Dueling with the pain for this long, I have grown to mistrust and fear people in the medical profession. I am afraid to call 911, because I believe they will handle me wrong, make the pain worse, or refuse to help me. I am afraid to ask for help. They made me this way. 

I am afraid to be handled by paramedics. I am afraid to be handled by new doctors. Even going to my own doctors causes me mild anxiety. I trust my current doctors, but I have been conditioned for six years to fear and mistrust anyone who calls themselves a doctor. I’d love to blame my fear solely on my condition, but that blame is shared by every doctor that called me “crazy” and caused additional pain when it wasn’t necessary. 

When I have to be put under for a medical procedure, my last moments of consciousness are panic. When I first open my eyes, I am filled with a rush of adrenaline like a soldier going into battle. I feel my body come to life, fighting the dizziness, fighting the fog, and lurching drunkenly away from the nurse as she tries to pat me on the shoulder to reassure me everything is OK. If I were an animal, I would wake up growling, eyes fiery, and nostrils flared, ready to bare my teeth and keep the “helpers” back. 

packet of information about crps
Packet of information about CRPS and how it affects me, which we give to every doctor before they can work on me.

In my experience, it doesn’t matter how calm or patient or professional or prepared I am with documented information regarding my condition. I am dismissed, I believe because they think they know more about me and how to treat me because they went to medical school and I didn’t. Most doctors read just a paragraph, a definition. It took 14 doctors to diagnose me correctly because some either knew nothing of CRPS or I didn’t meet all of their criteria. I have scoured the internet, talked to fellow warriors, and most importantly, I have lived it. I know the pain and the condition intimately. I am better prepared to manage myself and to instruct them on how to handle me than anyone in that hospital.

I wish I wasn’t afraid. I wish I could feel safe and secure and relaxed at the thought of having to call the paramedics one day. They are trained medical professionals, who I should be able to trust with my life. But I don’t. The truth is, I doubt I will ever trust them. Currently I have three doctors I see on a regular basis, and luckily all are doctors I trust, respect, and feel safe around. My first appointment with each, however, I walked in ready to fight. Ready to defend myself. They proved to me that they could listen, that they genuinely cared, and never once did they assume I was drug-seeking. I acknowledge that these three are a rare find, especially for a CRPS patient. 

It would be easy to say I’m overdramatic. Once you have sat in a waiting room for hours at a level 10 on the pain scale, been harassed and dismissed by a nurse, not allowed to converse with your doctor, denied proper care, explicitly labelled an “addict,” and chased out of an ER with threats of being forcibly controlled by security after you requested better care, you won’t see my fears as overdramatic. Experience it just once, and the fear will grow. 

I am 24, I have a chronic condition that requires ongoing medical treatment, and I am afraid to ask for help. No one should ever have to be afraid of assistance. Doctors began their trade to help their fellow man, not to be dreaded like the monster at the end of the hall. One day, I will have to call 911, and I know that on that day, I will consider not calling at all. My fingers will dial the numbers, and the soldier within will rise up for battle, sword drawn, eyes cold, and mind focused. I will grit my teeth, force myself to overcome the blackouts, and stand my ground. Help comes at a price. I wish I wasn’t afraid to call 911, but that is my reality.

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Reinventing Myself After Chronic Pain Ended My Career as a Ballerina

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As a woman ravaged by intense pain and the loss of virtually all my life’s goals, I have been transformed by struggling and love. And brought to a higher place.

It all began 34 years ago when I was with the man I love, John Garrett, who is still in my life today.

I was a 21-year-old ballerina with a bright future — one where I would dance, act and sing. The core of this was ballet — my greatest love and my identity since I was 7.

Ballet meant more to me than anything else. I didn’t think anything could be more beautiful and there certainly wasn’t anything that made me feel more whole.

Growing up, I was always in leotards with my hair in a bun. In ballet, you’re either right or you’re wrong. I loved that structure and discipline.

Nothing felt so good as the high of it, the sweat, putting that movement to the music. This was my absolute passion. Nothing was going to hold me back. Nothing.

Then it all came to an abrupt end. A minor ballet injury in my right leg triggered a chronic pain disease, complex regional pain syndrome, too often called “the suicide disease.”

For 13 years, the doctors said my problems were all in my head. I was left bedridden for a decade and unable to speak for five years while the CRPS spread throughout my body and attacked my vocal cords.

During that time, most everyone in my life left me.

I was now just a young woman who used to be a ballerina. I had planned my entire life around performance. Then, in a moment, it was gone.

At first I wouldn’t accept that I wasn’t going to dance again. As the months and years ticked by, I watched others go on with their lives.

When I couldn’t live in denial anymore, I became bitter, hateful, even suicidal. Wracked with anxiety, depression and waking with night terrors, I was lost. I was no one.

In those dark years, when anything negative happened, I raged, hurt myself, hurt John. I became a verbally and physically abusive person because I thought I had the right.

After all, I was suffering, a victim who’d been cheated out of her life. I was drowning in self-righteousness.

I never imagined I might someday turn my pain into something of value. Then, almost 20 years ago, in ways I didn’t understand at the time, I began making positive shifts in my life.

I knew I wanted to help others avoid what happened to me. I dropped the Cynthia-as-ballerina identity, a humungous shift, and began to reinvent myself.

Finally, and most importantly, I accepted my pain as an intimate part of me and, indeed, my new normal.

I found a voice as a healthcare reform advocate and launched For Grace to help other women with life-altering pain. But I was still searching for peace. I needed to purge and self-examine.

Writing our memoir, “Battle for Grace,” John and I were given the opportunity to re-visit our traumas and suffering. For the first time, I saw a world that was bigger, by far, than the one I was born into.

As we wrote and read our story aloud, I saw up close the bad energy I’d created. But as the words were carved out, I realized I could stop this chain of pain and violence.

Instead of resentment, I could practice appreciation. Instead of hate, I could enjoy love. Instead of blame, I could forgive.

I forgave the doctors who failed me, who told me I was crazy. I came to recognize that they did the best they could.

I no longer felt resentment for those who left me. They, too, were traumatized by my pain and the absence of any healing.

I befriended my disease, and as I came to appreciate it as a part of who I am, I loved myself more deeply.

I also discovered new ways to enjoy more healing and better tomorrows.

The power of narrative therapy — in this case, writing our book — is a wondrous tool to re-examine our internal demons. That’s why I urge fellow sufferers to use daily journal writing to help them connect the dots and open the doors to positive action.

Being comfortable with “what is” allowed me to let go of my dreams lost and exorbitant expectations. Once I honestly looked at my new normal, it opened the door to fresh possibilities.

What is can be painful, but it’s the birthplace for peace and love.

In the good times, I immersed myself in love. For John and I, for my circumstances, for everyone around me, even for the stuff that still caused me physical and emotional pain.

I know now that real love, with real compassion and forgiveness, is a second-to-none healer.

I now practice self-care. This puts wellness into my own hands. It’s all about diet, exercise, letting go of toxic people and, most importantly, spiritual meditation for myself and John and our planet.

More and more, I’m letting go of the bad energy. Resulting in far fewer burdens and negative thoughts that make me sick. A gift to everyone, especially me.

The greatest transformation for me is that I trust my gut and inner-wisdom to lead the way in my work, life and wellness.

This is still a work in progress, but the impact of trusting myself is so profound it makes each of my days richer.

I am awash, once again, in beauty and appreciation.

This blog was originally published on Maria Shriver.

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