To the Patient Who Just Received a Complex Regional Pain Syndrome Diagnosis

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To the newly diagnosed:

You have just received a life altering diagnosis; reflex sympathetic dystrophy/complex regional pain syndrome (RSD/CRPS), an extremely painful, poorly understood and under recognized disease.

Right now, I know you are experiencing a whirlwind of emotions. You’re likely feeling scared, overwhelmed, anger and confusion. If you’ve been struggling to obtain a diagnosis, you may also feel a great sense of relief.

I want you to know it’s OK to feel this way. It’s OK to feel bad. There’s no right or wrong way to be right now. There’s no time limit, or expiration date on your feelings. You have the right to be upset. You have the right to grieve.  

You are not obligated to be positive or present a brave face. It is OK to cry and to be scared. You are not weak. You are strong and brave.

Living with the pain and mobility issues that accompany an RSD/CRPS diagnosis can be incredibly overwhelming. It may feel like you will never be able to adjust to your new reality and challenges in your life. With time and support, you can persevere. It takes time and patience to adjust to all the changes that are occurring. Take it day by day, even minute by minute if you must.

Always remember you are your own best advocate. There may be times when you feel pressured by well-intentioned family and friends, or even members of your own healthcare team to follow a certain treatment path. You know your body best.

Knowledge is power. You have the ability and the right to be an active participant in your treatment and quality of life planning. Arm yourself with the latest information on RSD/CRPS, and connect with other patients.

Be patient and kind to yourself. You are learning how to navigate the world with a chronic illness, which affects all aspects of your life. This is no small task!

Most importantly, I want you to know that you’re not alone. There may be days where it feels like all hope has vanished, and there is much more dark than light. Always remember that there is an entire community of people living with RSD/CRPS that understand what you are going through. There is support both online and off. We are always here, even when others may not be. We will be alongside you, every step of your journey. We have your back.

For RSD/CRPS information/research:

RSDSA
RSDCA
U.S. Pain Foundation
American RSD HopeInternational Research Foundation for RSD/CRPS
Princess in the Tower 

Online RSD/CRPS support groups:

RSD/CRPS California Support Group
NeuroTalk RSD/CRPS Support Group
CRPS Warriors Support Group

Midwest RSD/CRPS Support Group
RSD/CRPS Mothers Support Group

Peer-peer support group listings:

U.S. Pain Foundation Support Groups (in person)
RSD Hope Support Groups (in person)

Remember, your diagnosis does not define you. You are not this disease. You are a beautiful human being that still has so much to offer. You can and will persevere. You are brave and strong. You got this!

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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me before you poster

A Response to ‘Me Before You,’ From Someone With a ‘Suicide Disease'

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I am a daughter, sister, niece, granddaughter, student, EMT, skier, lifeguard, first degree black belt, Netflix addict, and I happen to fight a few chronic illnesses. I wear a lot of different hats. Multitasking is one of the things I do best.

I mention multitasking because I am constantly hiding my severe pain from the rest of the world while I go about my life.

As a person living with the most painful disease known to modern medicine, complex regional pain syndrome (CRPS), I find the storyline behind “Me Before You” highly offensive. CRPS ranks a 42/50 on the McGill Pain Scale — higher than childbirth or amputation of a digit. CRPS itself isn’t fatal, but the complications from it becoming systemic most certainly can be. Even though I don’t want to be in pain the rest of my life, I don’t see another option. Suicide would be traumatic to my family and friends, so I don’t even let my mind go there.

CRPS is known as a “suicide disease,” and I have lost many close friends to suicide and those other complications I talked about. Among those complications include serious infection, malnutrition requiring tube feedings, severe contractures lasting months or years, and osteoporosis.

Just last month, I spent 10 days in a coma fighting for my life after suffering from severe and prolonged seizures from metabolic encephalopathy. I just so happened to be at the Mayo Clinic being tested for rare diseases that left me in a wheelchair for seven months. We were staying in a hotel on the morning of May 12th, 2016, when I was status epilepticus. My mom called 911 and they transported me to the ER where I had two EEGs and a CT scan. After some tests, I was put on antibiotics, had a lumbar puncture, and was placed on a ventilator. A NJ tube was placed for medications and nutrition. Then I was sent to the neurotrauma ICU.

Over those 10 days, my dad and brother drove from Pennsylvania to Minnesota, while they all prepared for my death. My mother was planning her 19-year-old daughter’s funeral, something no mother should have to fathom. Doctors told them to expect me in a vegetative state at best, if I were to survive at all.

Family and friends lifted my family up in prayer in hopes that I would eventually return to them. Well, I woke up. I wasn’t myself physically, mentally, or emotionally due to damage from the seizures, but I was alive. I couldn’t swallow, speak, write, or talk. When I was finally moved to the rehabilitation floor, I had to learn everything again. It was like being a toddler.

All these complications stemmed from the medications I take to manage my conditions. I fought as hard as I could to come back to my family and friends physically and neurologically. I am truly amazed by the body’s ability to heal itself. When I came off the ventilator, I couldn’t speak properlly. On May 29th, I couldn’t walk or write and my speech was still not quite right. My perception of color and depth perception were terribly off.

Fast forward to June 6. I’ve been doing taekwondo for a week. When I started back, I could barely do a front kick without falling. During sparring matches, I would fall several times. It was a hot mess.

My color perception is back, as is my depth perception. I’m still working on finding the right words when I’m speaking to someone, but I’m sure with time that will improve.

And as for my taekwondo class tonight, my balance was nearly normal, my speed back, and my memorization of my forms didn’t miss a beat. In fact, I even midtermed with my class.

Yes, it hurts me just to sit in a chair, but it also hurts just as much to go out there ski, do taekwondo, go to college, and live the extraordinary life I’ve been given. I can say that despite the pain, I’m blessed. I wouldn’t want to die just because one part of my life isn’t going my way.

Romanticizing assisted suicide is a slippery slope that some European countries are starting to slide down fast. So Hollywood, next time you film a movie about a sick or injured person, consider those who can only hope to see the light of tomorrow. We don’t all want to give up that easily.

If you or someone you know needs help, see our suicide prevention resources.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

The Mighty is asking the following: Describe a scene or line from a movie, show, or song that’s stuck with you through your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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To Anyone Who Doesn't Like Admitting They Can't Do Something Due to Their Illness

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Most people know I don’t give up easily and I don’t like to admit something is too much for me to handle. In the last five years of having complex regional pain syndrome (CRPS), I can count on one hand how many times I have given up on something due to my illness.

For the first time in a long time, I had to admit that I just could not do it. I have been unable to get my treatment due to being away at college, but I thought I would be fine working during the summer at the same job I had last year. I could not have been more wrong. I came home that night in the worst pain I had been in in a while, my joints ached, nothing could brush against my skin without feeling like razor blades, I had a headache, I was overheated, and at that moment, I could feel my body giving up on me. I knew that if I didn’t quit until I received my treatment, it would only get worse from there.

I dreaded making the phone call to my boss saying I could not continue at the moment. He completely understood and said health comes first, but I couldn’t believe I had just admitted not to myself, but to my parents and boss that I could not continue to work with my current health status. I have always had the determination to continue when I didn’t think I could and I usually always made it. There are a lot of people who have it a lot worse, yet they manage to work through it every day.

Then a little voice in the back of my head spoke up and said that because I admitted that I couldn’t work, it made me a stronger person. It takes a lot of courage to speak up and feel as though you are not strong enough to make it through.

So what does it mean to admit you just can’t do it?

It means you’re strong and courageous, you’re honest and you know your limits. Knowing your limits is better than working yourself so hard you pay for it for days after. You know your strengths and weaknesses. It means you are willing to accept your defeats which allows you to cherish your wins. It means you know your health should always come first. You do not care about what people say about your decision because you know that decision is what’s best for you. It even means you are considerate because you know how much you have to push yourself to make it through each day and that others are doing the same. It means you are human; nobody is perfect and nobody can do everything. If you don’t like to admit you can’t do it because you want to fit in or be like you friends, when you admit you can’t do it, you are fitting in because we are all human.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

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To Those Who Ask How I'll Manage My Pain Since I Stopped Taking Pills

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I have some important thoughts regarding the question I’ve started frequently receiving after disclosing that I am no longer on “pain pills,” i.e. prescription narcotic medication. Up until April 2015 I had been on them for over a decade, to treat my fibromyalgia, complex regional pain syndrome and other various chronic pain symptoms.

The question is: “How will you manage your pain?”

First, let me say that this question, this very real but very painful question, feels like getting punched in the gut every time. I inevitably mutter, “I don’t know. I just will,” or something along those lines, and try to move on as quickly as possible. 

Let me ask you this:

Can you “manage” a hurricane? A tornado? A flood?

You can prepare as best you can, in some cases barring windows or moving your precious nostalgic items farther above ground, and you can take as appropriate shelter as you have access to. But no, you cannot “manage” a natural disaster.

Think of fibromyalgia that way, and really all of my other aches, pains and nerves that shoot like fireworks through my back, in that same light.

I have some ideas about what I can do to prepare. I have some vague clues about how to brace for the storm. I have my nerve pain medication, my carefully selected furniture, my obscene amount of pillows, my cats, my love… but here is the catch: Via pain pills or any other means, my pain has never been “managed.” It’s survival of the fittest, baby, and you may have no idea how deeply that sentiment goes unless you’ve experienced the soul-crushing despair that can come with a particularly nightmarish pain day. The kind that makes you forget your own name and only remember in that moment that your body hurts so much that you catch yourself wondering if death would be a better answer. But it’s not. And, more importantly for me right now, neither is taking pills.

Right now, in this moment, my lower back is throbbing. The muscles in my arms are screaming at me to move away from the keyboard and let them hang slack for the rest of the day, though that is fraught with problems as well, thanks to this lovely thing called “referred pain.”

The movement of the world stops for no one, and while I can try my best to stay still and rest when I can and need to, if I ever stopped the way my body often wants me to, then I simply wouldn’t be living. I’d perhaps be alive in body, but my spirit would be broken, and I sure as hell am not letting that happen.

So. How will I manage my pain?

One day at a time. Each moment internally assessing the damages caused by individual actions, each moment getting to know my enemy and learning it’s patterns as best I can, but knowing that sometimes this monster called chronic pain will sneak up and knock the wind right out of me… and learning to be OK with that. 

I don’t want pity, sympathy or encouragement, though real, sincere empathy is always appreciated. I want you all to know that we are all in this together, all of us chronic illness warriors. All of us souls who know that in this lifetime we may always deal with our bodies spontaneously experiencing torture from the inside out, and who know we will fight some battles and we must surrender some and sleep for days, but that we must stay ever-vigilant and brave in the face of this personal body war, and most importantly choose to live anyway.

How will I manage my pain?

Honestly?

That’s personal.

So stop asking.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.

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To the Professor Who Doesn't Understand Why I Need Accommodations for My Invisible Illness

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You probably don’t quite remember the first week of classes because it seems like a distant memory by now. I was the student who came up to you after class and handed you a sheet of paper from the Health Center explaining that due to various health problems, I may need some accommodations during the semester. I remember you glanced at the paper, looked at me and then back at the paper. You then placed it in your bag and said, “Thank you,” and all I wanted to know was what was going through your mind.

You probably don’t even remember me giving you that paper because I may not seem like the typical student who needs accommodations. Although some of my symptoms are visible, my illness is invisible to the naked eye and deep down inside, my body is slowly burning from the inside out. Not once this semester have I needed to use any of my accommodations. In fact, I have only used them once in the two years I have been here.

It was last semester when I needed to be admitted to the hospital for a ketamine infusion. This is the only treatment that has ever worked in the five years of having complex regional pain syndrome (CRPS). I requested to take my finals a week early. Yes you read that right, a week early! It certainly added on the stress when most students take advantage of the extension but all I wanted was to not be in as much pain. At the end of that week I was worn out and spent five days in the hospital for treatment to get my nerves to calm down.

The only other two times I needed accommodations were when I had an appendectomy and my cholecystectomy. Missing classes and taking exams at a later date were the only accommodations I used but these are given to any student that receives an emergency surgery. With CRPS, surgery is not easy; it is 10 times more painful and it always causes a flare and I have a longer down time but I somehow managed to force myself to go back to school within five days of both operations.

So as we head into the final weeks of school and start finals, please remember this: It is a stressful time for everyone. Not only do I have your final to worry about, I have five other ones plus a project and a few essays.  I am also in a bad place with my health at the moment. I have so much on my plate and I am starting to wonder how I will ever get it all done. Just know that while most students are pulling all-nighters in the library trying to cram before the huge exam, I am also pulling an all-nighter, not because I want to, but because the CRPS puts me in too much pain for me to sleep. I will still get ready for the day when my alarm goes off at 7 a.m. and I will show up to class and take that final with no complaints. I am also spending any free time I have while at a doctor’s appointment or at physical therapy reading over my notes and studying. I spend valuable time driving back and forth to Children’s Hospital of Pittsburgh which is about a two and a half hour drive from my college that I wish I could use as studying time. I am under an enormous amount of stress and my body in unable to handle stress properly.

girl wearing hospital gown in hospital bed
Nora in the hospital

So even though I try and never use my accommodations, please try and be accommodating. I don’t like to admit that I cannot keep up and that I need help. Remember that your final is not the only one I am taking and I have to spend my time studying for everything else, too. I would say I do pretty well in my classes considering everything else going on in my life right now and I want you to see it so you can understand. This is how hard I am willing to work and I hope you are able to work with me.

So when I come and sit down at my desk for my 8 a.m. final on a Monday and I look absolutely exhausted, just remember I probably only managed to get an hour or two of sleep and that I spent most of my time studying while I was at a medical appointment. Not everything is how it appears on the outside and there are often a million other things going on in my life.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I've Learned About Pursuing Purpose Living With Complex Regional Pain Syndrome

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It was just another afternoon in the hospital. I was awaiting a nasojejunal (NJ) tube placement because my medical conditions had dropped my weight to dangerously low levels. Knock knock.

“Come in!” I replied. I had just finished a lap speeding around the floor in my wheelchair with physical therapy, and I was looking forward to an opportunity to relax before my procedure. A short, middle-aged woman stepped into the room and after exchanging greetings, I found out she was a social worker just making rounds to see if I needed anything. I told her I was doing well and a little about how I had gotten my complex regional pain syndrome (and other conditions), which was a part of the reason I had ended up in the hospital. This led to a conversation about how I was a student at the University of Pittsburgh, had initially entered as a neuroscience major on the pre-medicine track but changed my major to Emergency Medicine, and how life’s circumstances had again forced me to change my major to Communication Rhetoric. I’d realized I had the brains to do anything I set my mind to, but my body would not be able to handle the demands of medical school.

I explained that medicine was such an important part of my life. I’ve been an EMT since the age of 16, served as a ski patroller and dealt with life-or-death situations on the slopes. I know the demands of saving the life of a child about to drown in a wave pool. I explained how I hoped to get a certificate in National Preparedness and Emergency Management. Medicine would always be a part of my life.

At this point, she started to cry. She said my parents must be so very proud of me and my ability to rise above the adversity. The social worker expressed that she was impressed with the spirit and determination of a child who was forced to grow up so fast and never had an easy path. She told me that is what makes me strong beyond measure.

She explained that she was going through a rough patch in her life and often told her daughter about unique cases she’d had throughout the day without divulging personal information. She asked if she could tell her daughter about me, to which I responded, “Absolutely!” I even gave her the link to a video I had made and posted on YouTube for her and her daughter to watch.

She felt that my story would serve as a beautiful reminder to her and her 9-year-old girl, that if the first path didn’t work, find an alternative route because there is always another way. A new fire was ignited inside her to make things better for her and her daughter. I told her to hold something close to her heart, a reason to fight. Once you have a reason, don’t take your eye off the prize.

Maybe medical school won’t work out for me, but I will be right where I should be in life at the perfect time. In every moment, we have a purpose. It isn’t always obvious, but in that 30 minutes, I was meant to be lying in that hospital bed with the courage to open up to and comfort a woman who needed a little extra boost that day.

Follow this journey on The CRPS Ninja Chronicles.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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