I remember the very first time one of my doctors mumbled the letters RSD as she tried to demystify why my feet would not heal and why I was in excrutiating pain. The letters themselves scared me. She said it was rare and that I probably didn’t have it. Weeks later another specialist confirmed I did in fact have RSD. He told me not to read anything online because it would scare me.
Well of course the first thing you are going to do is google right? I know I did. Now RSD (Regional Sympathetic dystrophy) is called CRPS (Complex Regional Pain Syndrome) and still when searching those letters, very scary information is gathered for you to read. That was probably the scariest part for me was shifting through this information. CRPS sounded like hell. I didn’t know anyone with it and the extremes in the disease frightened me.
I am writing this post for those people who are new to CRPS/RSD. Maybe you or a loved one has been diagnosed. I want this to be an informational post but not one that scares you. See the thing is with CRPS is you have to remain hopeful. You have to have the drive and the motivation to push yourself through some painful days.
Does CRPS/RSD suck? Yeah it does but I still have a pretty amazing life.
The top 10 things I wished I had know about CRPS/RSD when I was diagnosed
1. Its not in your Head!
You finally have a diagnosis. CRPS/RSD is REAL. The pain you are feeling is REAL. You are not making this up. You are not crazy.
2. You may not look like you have CRPS every day.
CRPS is like a chameleon. Changing colors, shape, size and pain levels constantly. My foot will go from Deep purple (looks like a dead foot) to bright red, to pale white to normal in 15 minutes. Sometimes it will just pick one color for the day. Every doctor that looks at my feet when they look normal says “oh well you don’t have CRPS”. They may have a big medical degree but you know your body. What they don’t know is that those purple pictures when you google CRPS are only sometimes. Mine turn purple when I let them hang and don’t move them. If you have the diagnosis- chances are you have it.
3. It’s not your fault
I still get in the mindset that I must have done something at some point in my life that caused me to develop CRPS. Was it a medicine I took? Alcohol I drank? Toothpaste I used? Chances are it’s not. And in reality we really don’t know why some of us get CRPS and others don’t. Some sprains heal. Some don’t. I wish everyday that my sprain had healed like it was suppose to. You can’t be hard on yourself. You didn’t choose to have CRPS.
4. You will have good days.
When I read about CRPS, I thought, that’s it. I’m damaged, I’m broken, I did something to deserve this and now all I will be in pain every single day of my life and unable to do the things I love. (My thoughts were in a very negative place). The honest truth is that some days will be difficult. But you will get through them. Bad days are temporary. There is light at the end of the tunnel. You may not be able to do everything you were once able to do but you will find a way to modify your life to fit YOUR needs.
5. CRPS looks different for everyone.
One of my good friends has CRPS and our CRPS is similar but we have very different symptoms. She isn’t able to wear leggings or tolerate massage. Arch supports hurt her feet. I feel better in leggings, massage settles my nerve pain (has to be a certain massage technique) and I have to have arch support. She wears converse kicks, I wear birk sandals or Alta shoes. Even though our symptoms are different. We still understand eachother. We have different triggers to pain but we know what the pain feels like.
6. Physical Therapy. As much as you can tolerate.
This is tricky and I don’t want to upset some people. You have to listen to your body and know your body. Physical therapy when done at the correct pace, duration, intensity is going to be your best friend and worst enemy. You have to keep moving. Try the pool, just walking around. If that hurts try just sit on the steps in the pool for 15 minutes. Desensitize those limbs (meaning gradually introduce surfaces, fabrics and textures to your affected limb- it may be painful but it also helps in the long run). Find a therapist that you enjoy working with, they will become one of the most important people on your team ( I have absolutely loved all of my PTs!)
7. You know your body the best.
Don’t let anyone, even the doctor tell you what you feel. You know what you feel. And that is real. Many doctors don’t understand and not understanding is a new territory for some doctors and many of them become defensive. I have had many many horrible experiences in the doctor’s office. These people are suppose to care for me, not treat me like I am child who knows nothing. At some point in your life, you will probably know more about CRPS than your Doctor. Your doctor is not sitting up late at night and reading forums of other people with CRPS. You are. Your doctor is not in the chat & facebook groups reading questions and responses from people with the same challenges as you. Your doctor does not wake up in your body every day and feel every ache and pain. You do. You are the expert. Make them listen to you!
8. Be kind to yourself.
It may not feel like it somedays but you and your body are on the same team. It is incredibly frustrating to have a body that can’t tag along on the outings that your brain wants to do. I have had CRPS for 5 years and I still struggle (Who is This Body?). But the best days are the days we can all get on the same page. If you work with your body and not against it you will feel better. If you are constantly dissing your feet or hating which ever part of your body that is in pain, then you are creating a war with yourself. Sometimes I have to treat myself as I would treat a friend or a young child. Try to catch yourself in negative self talk and ask yourself, would I say this to a 5 year old? Or my best friend? If the answer is no, then try to re-phrase it.
9. Talk Therapy will be a luxury
I love therapy. And I am a therapist. It is the one time a week (or twice if needed) that you get to talk about you for a whole hour! Your friends are great. Your spouse or partner is wonderful. Your parents are supportive! Your Doctor Listens! But your therapist is ALWAYS in your corner. Your Spouse may have a hard time hearing that you are in pain all the time. Your best friend may need a break from talking about your CRPS. I have come to the point where I sometimes don’t even want to talk about my diagnosis with friends because I want to talk about normal stuff. I try to save all the really difficult things for therapy. And my therapist helps me shift my focus and perspective. She helps me decide how to approach things with my medical team so I get the best response. She finds light at the end of my tunnel and validates that how I am feeling is normal in these situations.
10. You are still you.
No diagnosis is going to change that. I will be honest and say sometimes I don’t feel like Kelly but she is still there, deep down inside. We as people are always changing, shifting into something more our whole lives. We change as we learn, travel, have relationships and raise children. You are most likely more compassionate towards people in pain now. You probably have moments of extreme gratitude and your awareness is tuned in to the moment, allowing you to enjoy life’s moments. Continue to be the awesome you that everybody loves! Do what you love, follow your passions and keep your friendships. Remember your name is not CRPS.