Tips on how to handle CRPS

Tips on how to handle CRPS

The bulk of this story first ran on the RSDSA website.

As I just entered my 24th year with Complex Regional Pain Syndrome, I’ve realized I lived with this disease for well over half of my life.

I’ve had the “benefit” of being a child with CRPS and just wanting to move on in life. I’ve suffered the “disadvantages” too and had to end my career in my mid-thirties.

My CRPS gave me 8 glorious years of remission. It’s also taught me it doesn’t always stand alone, and I’ve had to learn a lot about Autonomic Dysfunction (or Dysautonomia) rather quickly.

I figured in honor of my 24th year, I’d put together 24 tips, tricks or lessons that could help someone else.

They are as follows:

  1. As early as you can, desensitize yourself. It hurts in a way I can’t describe but once you make it through, you get some freedom back for the rest of your life.
  2. If you spread or think your spreading, treat it like a brand-new injury.
  3. Don’t be scared of spreading. It’s going to happen or it’s not. Your nervous energy is only going to make it happen or have it happen quicker or more advanced.
  4. I feel our job during a spread is to Accept it, make your necessary Adjustments/Accommodations and Advance forward.
  5. Start a Gratitude Journal. Write down 5 things you are grateful for each night.
  6. A good doctor is there to work with you. If you’re unhappy or don’t agree with your treatment plan, find another. It is one of your most critical relationships so make sure it’s solid and respectful from both sides.
  7. Be smart. Personally, I know I’m not with a doctor that has my best interests at hand if they’re wanting to implement multiple spinal cord stimulators. I’m also not with a doctor that’s good for me if they want me over medicated.
  8. Have someone to talk to. I think it’s helpful to have a professional that knows about chronic pain but you know what works best for you.
  9. Don’t be afraid of anything that can assist you. Get a handicap placard if it means you’ll go out more and participate in civilization now that you don’t have to walk so far.
  10. Call the RSDSA and ask for the “I have CRPS” wallet cards. Work on spreading awareness. I had some in my wallet and in my car for years. They’ve been extremely helpful.
  11. Always keep the “Emergency Guidelines for the CRPS Patient” and the “Hospital Guidelines for the CRPS Patient” printed out and stored safely home. They can be found on the RSDSA’s website under publications.
  12. Be upfront. You don’t need to fear the Emergency Room. I always go with the documents above, my medical records, pictures of my CRPS and let the attending doctor look online at my prescriptions through my pharmacy. I also don’t go there for pain management. That’s why I see my pain doctor monthly.
  13. Read “Systemic Complications of Complex Regional Pain Syndrome” by Robert J. Schwartzman, M.D. published in 2012. Become familiar with other issues that could come along with CRPS.
  14. If you’re on Facebook, the RSDSA is listed under “Support A Nonprofit”. Add them to your post and help them in raising money and awareness.
  15. I know I’m an odd patient, but I try to live as normal as I can. I get an IV twice a week and my blood pressure taken at least 4 times a week. To me, these are things that need to be done to keep me alive. Mindset is huge with me and my CRPS.
  16. With that said, I believe that I’m going to be in pain anyway, I might as well do something.
  17. On the flip side, I’d rather have pain from doing something than from doing nothing at all. In a strange sense, I feel like I earned it so it’s easier to fight.
  18. For me, distraction is key. It can bring my pain down. My animals can do the same.
  19. Being online in high Pain moments isn’t healthy for me. It’s putting too much into my pain when I’m in support groups and it’s also putting too much into other people’s pain. You should evaluate your pain levels if you’re spending a lot of times in groups.
  20. I know when I get grumpy it’s either time for medication, rest or something to get my pain level back on the scales. It’s not my personality and I know when I see that version of me, I’ve gone too far.
  21. Our loved ones have a grieving process to go through as well.
  22. You should look for and read “The Spoon Theory”.
  23. You’re never alone. You should know that 1 (800) 273-8255 is the number for the National Suicide Prevention Hotline.
  24. I’m always around if you would like to add me to Facebook.

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Authored by: Jennifer Ginsburg

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Wanda Lewis

Ms. Jennifer I guess I should have told you that I have BILATERAL TRIGEMINAL NEUROLGIA, CRPS AND POST CONCUSSION SYNDROME and other Diseases that I ha e to control because these Doctor’s don’t seem to think this is serious. Emory Hospital in Atlanta, GA told my Doctor do not send me there they can’t help me anymore than what has already been done.

Wanda Lewis

Ms. Jennifer,. I have done all of the above except I can not get on the internet at all. I am signed into this right here and have never received a thing. I went to the ER last Monday with my leg so bad that I was literally crying like a little kid. I am 54 well 55 in a couple of weeks. I’m telling you I’m at the end of my rope. I lost my NEUROLOGIST November 2016 and he had been mine since I had Brain Surgery and had issues. The one I have now I don’t really know
I am having to travel 5jours to see him and no I don’t know him and he don’t know me. Now I am also going back and forth from FL to GA a 9,hour drive because my Brother is Terminal and 2,weeks ago we found out he now has another kind of Cancer but I am all he has and I will not let him die alone. So as you know stress is like an instant activater of extreme pain that I try hard to hide because of what he is going through. ?????? I have tried to get Professional help and all they say is yes you do have a lot on you ,?

W P

I had a TKR on November 15, 2018 and after the nerve block wore off I had the worst pain in my life and it has not gone away to date! I’ve seen several doctors, had two genicular nerve blocks with ablation and no success in alleviating my right knee pain going down into my ankle, foot, toes! It seems after this surgery, almost all my joints are affected – shoulders, wrists, hands, thumb, fingers, hips, knees, ankles, feet, toes. I’m having diagnostic epidural steroid injections tomorrow in hopes the origin can be determined. I’ve been on and currently take the most powerful pain pills with an extended relief pain pill. They really don’t help much – only make the pain tolerable and just get me through the day. I don’t abuse my meds, but have become dependent if not an addict!

Anyone ever experienced this type situation and had any success with any TX?

All this don’t hurt but afor intrackable pain pain patients if you don’t have anundent access to pain medicine you are done?they have already dug the grave?

Signe Topai

I love your positive attitude! I have been crucified on support groups for trying to be positive. Thank you for your helpful tips. Many apply to my management of my disease. God Bless.

Thomas Wayne Kidd

Thank you Jennifer! I appreciate your comments. My diagnosis just says chronic pain without mention of trauma. Anyway it’s been going on for a lot of my soon to be 67 years. I have Been treated for the pain for 30+ years with Methadone, which I don’t have any hope of ever being able to be weaned off. The past almost 3 years as my doctor reduced my daily dose, I have gone into withdrawal every end of the month. My new pain doctor actually increased my daily dose by 5mg on the 24th. if April, which I am thankful for. That’s a positive start towards getting back to some form of normal life. Even though the CDC has said that many pain doctors misunderstood and took their recommendations to far, many are still in fear and confusion about treatment of chronic pain patients. Thanks again and I pray the best for you.

Heidi Burke

Thank you for the tips. I have CRPS going on 21 years now and found your list very interesting. I will try out some of them when needed.