A Letter to My Complex Regional Pain Syndrome

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Dear complex regional pain syndrome,

Everyone who has ever met you likely agrees that you are every bad adjective in the dictionary. Yet, that is still not saying enough. I have learned to smile, go to my classes and enjoy my activities, even when the light touch of my clothes feels like a constant brush burn and this cool, fiery pain consumes my body. This didn’t happen overnight. I had to learn to become comfortable with my swollen, purple and blue extremities, as this causes many people to stare.

But over the last three and a half years, I have learned more about suffering, compassion and understanding than many people ever will. This has made me wise beyond my 19
years. CRPS, if I could get rid of you and go into complete remission for the rest of my life, never having to worry about the slightest injury awakening the beast, I would. But, what I would never forget are the lessons that being chronically ill and burdened with pain 24/7, 365 days a year has taught me.

You will never win this battle, because I have a 100 percent average of getting through the days I swore I wouldn’t make it through. I have had to adapt my academic life to you, but who knows? Maybe that is not such a bad thing after all. Maybe taking 10 credits a semester instead of 18 credits will allow me to enjoy my family, friends and overall college experience more, rather than stressing every minute of every day.

I have come to understand the power of family when my life seems to be falling to pieces, because they will be the first ones running with the glue, tape, hammer and nails to help me repair what is broken.

As far as physical activity goes, you haven’t stopped me. You can’t stop me, because my love of the sport is stronger than my fear of the pain and consequences that may result. Although doctors forced me to stop playing basketball, my love of skiing and taekwondo has taken me to unimaginable heights. Instead of being a destructive force attempting to tear me to shreds, you have only made me stronger. I never thought I would say this, but thank you for teaching me how to overcome the challenges I face each day. After all, it is not an easy world we live in.

CRPS, my nerves have enough issues, so feel free to go on your way!

Follow this journey on The CRPS Ninja Chronicles.

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Lead photo source: Thinkstock Images

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Why I Choose Clothes That Make Me Look as If I'm Not in Pain

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Most days I look much different from the way I feel. I can be in excruciating pain, but toss on the right outfit, and my love of cupcakes is not the only thing that’s hidden. (OK, sort of hidden.) Much of the time people who know about my condition comment that I look good, often with an air of shock.

That usually feels great. I mean, who wouldn’t want to hear that they look good? I welcome and appreciate those genuine comments. There are also times when hearing them is not such a thrill, and I want to toss a really big stack of medical journals at the person and say, “Read.”

To be clear about the whole “looking good” notion, I’m not referring to attractiveness by any standard. It’s about the significant conflict between how I present on the outside and the disheveled appearance of my central nervous system.

In our era of political correctness when language matters more than ever, I understand that some people may be thinking, Now it’s not even OK to tell somebody they look good?!

Sure it is, for me, anyway. I love a compliment as much as the next person. In my opinion, there’s really no need to stop. The difference to me is the energy behind the words — whether it’s an authentic verbal gift or a statement with subtext. For me it’s almost always the former, which feels so good. The pain shows on some days, so I’m pleased to hear about the times when my outside doesn’t look like my inside.

Sharing the experience that so many others in pain have, I interface with doctors, strangers and even friends who assume I’m physically well, based on my appearance rather than my reality. Some people are versed at saying, “You can’t possibly be in that much pain” without ever speaking those words. It would be nice to be oblivious to those unspoken (and sometimes spoken) judgements, but those of us in chronic pain have been through enough to recognize them. Fortunately, kind and loving people make these experiences marginal for me.

People see through their own personal field of vision, so when it comes to my outside appearance, I try not to make it about anybody else. What matters is how I choose to take care of myself in order to get through an hour at home or enjoy an event when it feels like my nerves are surrounded by hot coals. Much of the time I “look as if.” As if I’m comfortable in my seat. As if I don’t feel electric shocks going through my limbs. As if my hands aren’t freezing in a warm setting. As if I wasn’t in the emergency room yesterday. As if getting dressed that morning didn’t hurt. As if the pain didn’t wake me up every couple of hours the night before. As if I don’t need my cane, poles or wheelchair. I usually dress as if I have a future with less pain, and it’s one of many things I do to help me maintain hope that it’s true.

After I had to stop working, I missed the feeling of putting on clothes each morning that communicated I’m a professional. When I was facing a long recovery from my second multi-level spine surgery, I wanted to approach the days in something other than sweats and leggings. They’re great on occasion (and necessary sometimes), but I was determined not to wear them more than a couple times per week. Any more than that, I decided they would make a statement I wasn’t interested in hearing.

woman wearing neck brace and pink sweater with orange top
Elisa wearing a colorful outfit.

So, what to wear? I love a sleek black outfit that gives me the illusion of being fashionable. My closet has always offered me plenty of options for the city look. But as my pain increased, I shifted my wardrobe. I began to frequent budget-friendly stores for clothes that were easier to to put on, like those with zippers and snaps. My range of colors started to expand too. I bought colorful jeans and shirts including bright blue, purple and an array of pinks. Some orange even entered my closet, which I later learned was convenient to my medical situation. It’s the color to promote complex regional pain syndrome (CRPS) awareness. My loyalty to the San Francisco Giants grew as well. Go figure.

Colorful clothing helps to keep me from looking the way I feel to some extent, but pain can show in the eyes. Fortunately, all of the good things in life do as well. There are days when the latter creates a glow that reads, “I have no worries, just a joyful existence.” There are definitely those other days when I look in the mirror and see eyes dark and filled with struggle, and I barely recognize myself, even after all the years of being in pain. My joie de vivre gets masked, unlike when pain is overshadowed by the rest of my life; all the things that are a blessing. So I go with it and tell myself it’s where I am today.

Off to my dresser to pull out those ultra-comfortable leggings that highlight the massive swelling in my leg, paired with the coziest old shirt I have clean. I hope tomorrow I toss on something colorful that speaks to my love of life, but for today, this is my ensemble of self-care.

Follow this journey on Elisa Friedlander.

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When Life With Chronic Pain Feels Like My World Has Stopped Turning

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Being labeled as “disabled” really changed my world. It gave me a new perspective I never thought I would have at just 22 years old. I have never accepted my pain as my life. I still can’t, even almost eight years later. Putting into words how I am disabled because of chronic pain wrecks the most delicate part of my life: my heart.

I was just 5 years old when my parent’s world stopped turning, because I had been diagnosed with rhabdomyosarcoma. I have seen the worlds of others stop turning, but I never thought my world would cease.

I have what is most commonly known as complex regional pain syndrome (CRPS) from my waist down, although when I was diagnosed, it was in the time when some doctors only knew it by reflex sympathetic dystrophy (RSD). Telling people that I had something that would never be gone, or never be better enough for me to remain active, is one of the hardest things I have to do, every single day. The curiosity of others can really darken my days, even though most people ask out of kindness. When people ask, I just have to pretend I am fine. There’s a mask I wear each day. Sometimes the pain is so severe my mask is unable to hide my pain.

Getting married to the love of my life in 2015 was a complete joy. It was the moment in my life when my world started turning again. I knew I had a man who I could be honest with, which is sometimes better than any medication I have to take. He never makes me feel bad because I have to rest, or have to take extra Tylenol to make it through. He builds me up, loves me through my pain, and most important on my list, he loves me wholly even with my RSD.

Getting married at 28 was a blessing, by far. I waited to find a man who would love all of me. My RSD loves to get in the way of my life, even to this day. I try to fight it, to keep winning over my pain, but with each day, it gets harder and harder. Most days while the kids are at school and my husband is at work, I am home crying or staying as still as possible to try to get rid of the pain. On the days I feel “good,” I am home cleaning or doing laundry. The problem with RSD is that when you have a low pain day, you can function higher than you normally can. On those days I overdo it. On those days, it is without fail that I set myself back another 10 steps. It means another three days of sleeping with extra meds while the house is quiet, another Epsom salt bath (sometimes four in a single day), or another day of not being able to breathe because of the astronomical pain.

Along with RSD, I deal with severe anxiety and depression. No one told me at age 22 that I would get diagnosed with anxiety and depression along with RSD. Each day, my world can either turn normally, slowly, or not at all. Each day I wake up covered with darkness until I know how my world will turn. Each day I struggle with chronic pain, severe anxiety, and depression. Each day I struggle to call this my life. Each day I pray my world will at least turn a little, because when my world stops turning, my heart suffers the most.

There are many pieces of advice out on the internet, and people with chronic pain will give you all kinds of advice. I’ve even had a pain management doctor give me advice. The thing I learned is that some of the advice works for me, and some of it doesn’t. Being able to try new things, or knowing that some advice won’t fit my life is critical. No one will know your body better than you do! It is imperative to know what there is to try, but to also use your own body as a guide! We all have chronic pain; however, each body reacts differently.

Coping with chronic pain, even seven-and-a-half years later, is a daily task. Some days are easier, but some days are extremely hard. I’ve found that I hold tightly to the things that make me feel better. I have two dogs that always know when my pain is high, so they stay extra close and cuddle with me. I’ve found that coloring keeps my mind occupied and can help redirect my mind from focusing on the pain. I have a wonderful husband who knows there are things I need to do each day, sometimes when I’m home alone.  Coping is harder some days than others, but it also keeps me going. I don’t take my life day by day. I have to take my life minute by minute. I keep telling myself that if I just made it through that last minute, I can make it through another minute. There’s a lot of minutes each day, but I know I need to break it down so I can manage to cope.

When I lost my ability to dance two years ago, I thought my world ended. However, just recently, I have learned other things I can physically do to help me stay as active as possible. There is no end in sight with chronic pain, but I choose to stay strong, focus on the things I can do, and find what works for me. I have lost a lot with chronic pain, but I have gained a lot because of it.

I challenge each person I know to be kind to strangers, because you never know what that person sees, feels or faces. The monsters I face make my world a completely different place than I ever imagined my world would be at 29 years old. If we all grow together in life, we can make sure the worlds of all will keep turning, no matter what we all face.

I just want our worlds to turn each day.

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? 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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To the People Who Question My Daughter's Chronic Pain

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“You can’t be in that much pain all the time.”

“You don’t seem to be hurting that much.”

“This is too far for you to walk? Well, you missed a beautiful rainbow I saw down there.”

“You still can’t listen to electronic sounds?”

Those are the shoes you chose to wear?”

These are just some of a multitude of disrespectful questions and statements that I have heard people say to my 17-year-old daughter Tia since she developed complex regional pain syndrome (CRPS) at age 11. Some people have the gall to think that they know better than she does how much something hurts her or helps her with her pain condition, or if she even has it at all. Having an invisible condition can be a constant battle to be believed and understood by the world around you.

If you really think about it, how can anyone else but you be able to experience your own body and how much pain it feels? How can anyone else know that Crocs are the only shoes you can wear because of the constant shocking pain that exists in the nerves running down the sides of your feet? Before Tia found Crocs, she did not wear any shoes for 6 months, even during winter in Chicago. I can’t imagine how frustrating it is to have other people judge how much pain you are in.

On Tia’s 16th birthday, our dear friend Julie reminded her, “Oh, Tia, I remember when you used to walk around on your knees to get around. It’s so good to see you walking at all.” First it was the crutches, but when CRPS spread into the other foot, it was the wheelchair or, at home, walking on her knees. She could scoot around pretty fast on her knees, up and down the stairs and into the family room. It scraped up her knees pretty bad, though, and made going into the kitchen unmanageable since the tile floors were too hard to scoot on. Tia did not wear shoes or socks for over five years. Nor does she put her feet under the covers when she goes to bed at night. Anything touching the sides of her feet sends the chronic pain she constantly copes with up to an unbearable level. Then three years ago, after a session with a physical therapist, she developed the severe sound sensitivity experienced by 30 percent of people with CRPS. Now she has extreme pain in her feet when she is exposed to low-frequency sounds.

Having an excruciatingly painful condition is a lot for a child to cope with, but when you add the constant requirement to ask people to turn off their phone ringers or music in their cars, it’s even more. People can be kind and understanding and wonderful. But to those who “aren’t sure if it’s real or psychological,” or who think people pretend to have pain in order to gain attention, or want her to push herself more, or think she “better” get back to school, I want to say this: No one has the right to judge what someone else is feeling in their mind, body or soul. Our job as fellow humans is to learn to listen to what another says, without trying to decide whether you think it is valid. It is valid when Tia says it is.

Never judge a girl until you’ve walked half a block in her Crocs, because that’s about the distance that she can go before her pain starts skyrocketing. And if you don’t believe her, that’s your problem.

Tia Rago
Maria’s daughter, Tia.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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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When I Accepted I Cannot Control My Body With Chronic Illness

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My body and I haven’t had the best of relationships first and foremost. We did just fine until age 12, when things in my family fell apart and I took signs of hips and breasts as personal failure on my body’s part. I immediately resigned myself to the belief that if I could take up less space in the world, maybe I could stop feeling so sad and empty.

So began a dance of starvation, purging and self-harm that lasted for years, even with much therapy and many inpatient treatment centers. Recovery came slowly in my mid-20s but my journey with it was not linear. I would take a few steps forward but occasionally stumble back.

At age 28 in the fall of 2011, I began a new phase of my life when a simple foot injury from running turned into a chronic pain condition called complex regional pain syndrome/reflex sympathetic dystrophy (also known at CRPS or RSD). This disease is a progressive disease of the autonomic nervous system, and according to the McGill Pain Scale, CRPS ranks as one of the most painful conditions.

woman's legs showing one with complex regional pain syndrome
Genevieve’s CRPS in her leg and feet.

My left foot and leg hurt constantly with a pain incredibly intense, like a fire all over my skin, coupled with feeling like my leg is being broken from the inside out. It has been getting progressively worse since the spring of 2013 and then became very severe in February 2015. The CRPS has spread up my entire left leg and also into my right foot. I now use a wheelchair, as putting weight on either foot is incredibly painful due to the nerve pain and nerve damage becoming increasily worse.

In a cruel twist of fate, five months after developing the CRPS I also developed chronic Lyme disease and Bartonella. Lots of symptoms and possible diagnoses. Now I struggled with nerve pain and also awful joint pain, issues with cognitive functioning, fatigue and constant nausea. It took several months and many doctors in order to get properly diagnosed and treated. The Lyme disease did a lot of damage over these past few years.

Gone were my days of working the job I adored, running or even leaving the house some days. This was a new body, foreign to me, one that spoke in a sharp tongue of pain and never seemed out of fresh ideas of to make me understand that I had absolutely no control of what was going on. After years of starvation and self-harm, I was stunned by the realization that I could not force my body to stop malfunctioning as it responded to the inflammation going on inside me.

Chronic illness is truly humbling as you find yourself having to adjust your goals to what your body can tolerate.

nurse giving a woman an injection in her arm
Genevieve receiving an infusion (photo credit: Jewel Peach Photography).

For a long time I refused to accept that this may be how the rest of my life is. Anyone who is chronically ill always has that hope in their back pocket that they can one day feel “normal” and that remission or a cure is waiting in the wings. I told myself repeatedly that the life I was leading while sick and in pain wasn’t important because it didn’t live up to the standards I had set in my head. Just like with my anorexia, I created strict ideas of what I was supposed to be like and how, because I was sick, I was a failure. For the first time in my life I am experiencing true surrender as I accept that I cannot control my body any more than I can control the stars in the sky.

This body is the only one I will ever have, and together we are traversing hard territory that no one prepared us for.

I choose to believe there is a lesson within this experience, although I don’t yet know what it is. Maybe it is to continually find my center within my body no matter how my body feels. Maybe it is to have more empathy and compassion for those who also struggle with health issues. Maybe it is to love and accept my body with all its external flaws along with it’s angry nervous system and systemic inflammation.

Maybe it’s the experience of continually surrendering to the unexplained detours life guides us through and admitting powerlessness in the process. 

Despite the pain, I will continue to search for peace within my body and love it for everything it can achieve, even if it is something as simple as putting my feet on the floor.

Follow this journey on Ship With No Sails.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

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? 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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To the Frustrated Parent of a Child With Chronic Pain

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I never used to get it. Why are you so frustrated with everything when I am the one battling chronic pain?  I am the one who has to live with this monster 24/7, not you! So why are you mad at me just because I want to get this treatment and you don’t want me to? It’s my life, not yours!

When I first developed complex regional pain syndrome (CRPS) at the age of 14, life just went on for most of the time. I complained of continuous pain and you would tell me to stop complaining and I would get mad at you, and then you would get mad at me for having a bad attitude. I could tell as the years went on, not only would I get more frustrated, so would you, and it took me almost five years to truly understand why you were frustrated, too. During the two years it took me to get diagnosed, I could see you get more and more upset with every positive test result and with every doctor who said I was fine, but you would always tell me that it was a good thing the results were positive. I knew deep down inside you were mad that nobody could tell you what was wrong with your baby girl.

Finally, at the age of 16 when I finally got a correct diagnosis, I thought the days of fighting and frustration would be behind us, but I was far from right. At that time, it became a fight to find a treatment that would actually work. At that young age, I thought I would do what the doctor said and I would be healed, but when I found out that treatment and the next treatment and pretty much every treatment after that wasn’t working, I got angrier and angrier and I would take it out on you. Then you would get mad because you just wanted to get me help and wanted everything to be back to normal.

Life hasn’t been “normal” since then. There would be days we would spend sitting in a doctor’s office or hospital, and the longer and longer we sat there, the more and more you just wanted to get up and leave.  Some days I would come home crying because people were spreading rumors about me and you would sit there and cry with me as if the rumors were about you. Seeing me cry hurt you just as bad as hearing the rumors. Hearing the words “My whole body hurts” made yours hurt, too. After a failed treatment and seeing the disappointment on my face, it upset you because I was still in pain, and sometimes it was even worse than before the treatment.

I have begun to understand that yes, I have to live with this disease every day of my life, but you are living it, too. As a parent, you hurt when your child hurts, you cry when they cry, and you get frustrated when they get frustrated. I would be more worried if this wasn’t the case, because that would have meant we weren’t as close as we are or that we weren’t fighting the same battle. So to any frustrated parents out there, just know that your child may not understand why you are mad at the time, but in the future, they can completely understand.

To the frustrated child, your parents are frustrated because they are trying to do everything they can to help you, without success. Instead of both of you being upset with each other and not speaking, it is better to sit down and talk it out. Give each other a hug and just know your parents want what’s best for you.

I want to thank you for being the frustrated parent because honestly, without you, I wouldn’t have been able to fight as hard as you for a diagnosis, doctor, treatment, etc. Without you, I don’t know where I would be in life!

mom wearing blue tank top and daughter wearing orange shirt
Nora and her mom.

Follow this journey on CRPS Does Not Own Me.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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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