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

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:

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

Find this story helpful? Share it with someone you care about.

Related to Complex Regional Pain Syndrome

me before you poster

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

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 [...]

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

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 [...]
Sad girl looking out of window

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

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 [...]

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

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 [...]