Coping Tools · CRPS/RSD · Dealing with Pain

10 things I wish I had known about CRPS/RSD when I was first diagnosed

theinvisiblewarrior

10things about CRPS_RSDI 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.

To those of you who are just diagnosed, I wish you comfort & low pain today as you are reading this. You can follow me here at http://www.theinvisiblewarrior.com or on Facebook. Check out my About me on my homepage for more social media links!

Much Metta (loving-kindness),

Kelly

today pic
This is me.

36 thoughts on “10 things I wish I had known about CRPS/RSD when I was first diagnosed”

    1. I have CRPS in my right arm and hand my question to you all is what type of work do you do I have not been able to find a job that I can do without my right hand
      thank you

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      1. I have RSD in my right arm and hand for eighteen years and in my left for the past four. I have been a high school physics teacher for fifteen years and I drive a school bus. I have a bilateral neurostimulator and have to do Ketamine Infusions every three to six months.

        Liked by 1 person

      2. Also wondering about this. Officially diagnosed in my left hand last week, just starting treatment. I worked for ten years to become a midwife. I haven’t worked since two weeks after I fractured my fingers in November 2018.

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    2. CRPS Global Awareness Campaign

      Please copy this message and save it on your Computer to make it easier to use as you help Raise Awareness

      With Kind Permission of Pip Williams and Rick Parfitt and thanks to the extraordinary talents of Joyride and Del Bromham

      Below are the links to 2 CRPS Awareness Music Videos, Please take the time to watch both of them.

      Then send this message to your Family, Friends, Work Colleagues, Send it to your politicians, if your are a sufferer try and get a meeting with them, in the UK ask them to join the APPG for Complex Regional Pain Syndrome. Send it to your local TV and Radio Stations see if they will do a segment with you and one of the videos explaining why it’s so important to raise awareness, your local newspapers. Send it to your Hospital, Doctors and Dentists. Post it on Facebook, Twitter and Pinterest, on websites, forums and blogs, send it to celebrities and anyone else you can think of.

      If you are willing to spend 15 mins a week doing this then please join us https://www.facebook.com/groups/1792800220936741/

      CRPS Ain’t Complaining the MP3 is available to buy online all profits will go to helping sufferers.

      If you speak any other languages please translate this message and the lyrics and send it to people in that country

      Please subscribe to our channel for future videos

      Kevin

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    3. Thank you for sharing your insight and this incredible post.
      Much love and prayers through everyone’s journey fighting with crps.

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  6. Understand, friend!!! Irks me to no end! BUT…. I can not handle what patients go through by the mouth of uneducated, uncaring doctors. It would be different if we were their loved one. So, I’m going to bat…. and the field is getting better. One is in a little (!) Struggle with AMA. We are the expert and they will learn to listen! I’m done taking it! Feel free to comment on my FB page… it is an open page. Write and help me out with your words!!! I’m very sorry…I’m here with ears if needed!

    CHRONIC PAIN EDUCATION FOR PATIENTS FRIENDS AND FAMILY
    blog… Chatcat76.wordpress.com

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  7. Hey Kelly,
    I don’t often subscribe to follow blogs, but like your writing style and the thought that has clearly gone into it. I have had CRPS since 2011 (possibly longer without diagnosis). I would like to make a contribution to the support community through writing too. Maybe we could talk one day. Anyway, thank you for your work, and I look forward to reading more in the future.

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  9. Thank you for this. I am really struggling. My CRPS has spread throughout my body and I am grieving the loss of myself. I am terribly frightened. I always wonder, “what did I do wrong?” I worked hard for years and years, educated myself and built a successful practice. I finally retired and now have this! I feel so hopeless. I hope I can subscribe to your blog.

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  10. Thank you so much for this!!! I’ve been battling CRPS now since 2011; undiagnosed until 2014. My injury was to my spine(neck and lower back). So I’ve had the pleasure of ALL MY EXTREMITIES flaring up. Sometimes both hands or both feet at the same time. Got so tired of hearing from doctors and specialists “That it’s all in my head”! My extreme level of depression/anger/pain; almost cost me my marriage and my kids. It wasn’t until my chiropractor showed me a six page explanation of this; and found a pain management dr. that knew about it and how to somewhat treat it. As well as BELEIVED ME and knew it was REAL! Is when my life started to turn around for the better (at least my relationship with my wife and kids). Before then I didn’t care if I lived or died. The pain and life restrictions were my demise. I’ve been a hard working father/husband my whole life and in one split second(injury sustained at work); it turned my whole world upside down. Living every single day in pain; and on restriction is EXTREMEMLY HARD to get used to. But this is my life now. And with the help of my family; some select friends and folks such as yourself; I’m trying to live each day to its fullest and have a more positive outlook on life(Even though it’s very hard to do)! THANK YOU AGAIN AND FOR EVERYONE WHO HAS SHARED! Good luck and god bless each and every one of you!

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  15. Pingback: 10 Things I Wish I Had Known About CRPS/RSD When I Was First Diagnosed | Health Times

  17. I have CRPS on my entire left side. But I am now in complete remission. I found THE ONLY DR. That treats CRPS and has a 95% rate of putting her patients in remission. I am back to hiking, circuit training and working full time. Dr. Katina in Fayetteville Arkansas saved my life. I can’t imagine feeling the pain anymore. I thank God everyday for finding her.

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    1. Hi Melanie, Can you share Dr Katina’s full name and also how she managed to get your CRPS into remission? Thanks so much.

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    2. Can you share the details of this doctor? Her treatment plan? The difference in her care? I’m scared and I’m in mourning of my life besides my pain I feel constantly. Does she take insurance?
      Thank you
      Buffy
      bbjberry4@gmail.com

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  18. Pingback: 10 Things I Wish I Had Known About CRPS/RSD When I Was First Diagnosed | Health Magz
  19. Pingback: The first twelve hours – CRPS – 4 Letters, none of them well understood

  20. I think you should add one additional thing to your list: depression! In the early months of this disorder, both before and after getting diagnosed, I became horribly depressed. Usually, I’m the happy, perky, optimistic one, but the extreme pain and the not knowing caused a severe depression. Then when I was first diagnosed and learned about CRPS, my depression got even worse. But, it does get better! You can survive this beast! Try to find a support group and try to do at least one thing everyday that gives you satisfaction and hope.

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  21. I am sorry, but RSD stands for Reflex Sympathetic Dystrophy. They changed the name in 1994, to CRPS Type I or II. Though most physicians still refer to it as RSD. It is not rare by any means. It is under diagnosed and woefully under treated. And PT can sometimes hasten as well as worsen the pain and cause horrible flare-ups. Aquatic therapy is by far the best therapy.

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  22. After a very long time and many doctors later, I was diagnosed with CRPS last week by an excellent Neurosurgeon at University of Cincinnati hospital. I’m having a spinal cord stimulator put in in a weeks. Thank you for sharing. This has been very helpful.

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  23. I was diagnosed with CRPS six months ago after seeing sooooo many doctors and hospitalized multiple times. I don’t know if this will work for everyone, but I have seen SO much improvement from taking adrenal support. I am a wrestling, and I used to be pretty good. After my CRPS started, I lost every single match I wrestled. I started taking adrenal support, suggested to me by a naturopath and I got first place last week! Amazing results

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  24. Thankyou for taking the time to do this article. It’s informative,straight forward with compassion,it’s easy to tell you’re a social worker. I’m still quite new to this r.s.d. diagnosis, only having it for one year. I have no idea how people deal with it for so long . God bless them for being so strong though I know they are not given any choice. I feel the anxiety and depression and the fact that no one has a clue what you’re going through is almost as bad as the constant pain and burning…the fear of it spreading….the fear every time you go for an infusion that this is going to be the one that causes the spread. I’ve read a few of your articles but I’m not on Instagram or Facebook, I can only read what I find on Pinterest so please keep them coming. You truly are helping people.

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