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24 Tips For People With CRPS

Published on June 27, 2018 under Guest Blogger for RSDSA

Jennifer writes about the tips she has learned to help with CRPS over 24 years By Guest Blogger Jennifer Ginsburg

Jennifer has been living with CRPS for 24 years. In her 24 years with Complex Regional Pain Syndrome, she has learned a lot about herself and about the nature of CRPS. How can her experience help you? She created 24 tips to help you!

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.

None of asked to be thrown into this crazy world.  We all learn little “helpers” along the way.  I hope some of mine resonated with you.  I know I’m going to be in pain regardless, I at least try my best not to be miserable.  It’s a conscience decision that I make day after day.  Twenty-Four years later, I’m still at it.

18 Comments

  1. Susanna Peake

    On Jan. 23 of 2022 I tripped and broke my right wrist and left kneecap. Got the cast on hand off on March 7th. Going for physio twice a week and doing exercises at home as well. On April 18th went back to the fracture clinic to find out I now am developing Right Complex Regional Pain Syndrome. Not good. I have been going swimming and doing exercises in the pool, hot tub, steam room and dry sauna. I pray this goes away. I have never heard of this before. I am even using my in10s machine. I have never broken anything prior to this. I turned 64 in April. They say I may have to go see a neurologist. I really am empathetic to those that have suffered chronic pain due to Arthritus, etc. I can’t imagine suffering with pain fo years and little solutions. I walk every day if I can up to 4 miles. This makes me feel better. Thevpool is my favorite place to escape the pain. I usually do 100 laps on the Olympic size pool. Wishing everyone the best.

  2. Tara

    This is fantastic! Thank you!!
    I was diagnosed in 2008, had a whirlwind of nerve blocks, procedures, medical mistakes, spreading, surgeries, hospital time, and too much of all of the above.

    I wish I would have determined from early on that learning to cope with a good plan, strategy, and medical provider were key.

    This absolutely ‘resonates’ with me and I appreciate the 24 tips.
    We have much to learn from each other.
    My journey has been unique as those of us with CRPS can understand.

    Be well.
    Our lives are long, yet with the right keys they do not have to be tumultuous.

  3. Jennifer

    I have had total body RSD for 20 years I was completely wheelchair bound and then bed bound I got a Hyperbaric oxygen chamber and use it daily for 20 years I started walking within a couple weeks of use I use the Solice 210 from Oxyhealth
    You can rent to own one It is my best form of pain control and has helped me live a much more normal life

  4. Deanna Fox

    I was recently diagnosed with CRPS after breaking my ankle almost 4 years ago with pain and suffering for all that time. I have had several ablation that haven’t worked including sciatic and now have numbness and tingling in both hands and feet. Some days I just want to give up because the pain is so severe. I also have days that I can’t turn my head because my shoulder and neck hurt so bad. The worst part is that 2 of my children stopped talking to me because I complained to them and they thought I was faking. Haven’t been able to talk to my grandkids for 2 years and the pain from that makes it all around a horrible depressing life. I feel so depressed and alone that some days it’s just too much to handle

  5. be

    I’m pretty late seeing this but thanks. I was diagnosed 42 years ago when it was still called “causalgia.” I woke up from back surgery with a bright red hypersensitive foot. I was told what I had but that was it. There was no treatment and nothing was explained to me. I didn’t know until fairly recently that it could spread although I’ve had a spread I guess that’s been called IBS for 20+ years till I saw a gastro – I was shocked! CRPS wasn’t mentioned as a check box – which of course it never is – but wow, it was its own question!

    When I asked the doc why as I had never ever seen it even mentioned never mind a whole separate question, he said that like me, people with CRPS are told they have IBS, etc and so often, these gastro people see it as a spread. It was amazing. As a result, he also knows that when I have a diverticulitis thing and say I hurt, I am actually in much more pain than I state. He knows my pain threshold. He knows not to say “1 thru 10.” Thanks for this list. The one thing that I was glad to see was you talk about desensitization. I created my own course of treatment for this within months of surgery, tho I was not told it would help. and it did somewhat.

    I am trying to find info about covid and CRPS. I have met one other person who had a bad spread after covid. It’s a cytokine level thing. I had my booster shot today and i’m afraid. People dont understand what it means to have increased inflammation in my body. Covid and the vaccines are so much about inflammation. We already have an increased cytokine level. Covid increases it – even with a mild case like I had. But I’m a long hauler. I rarely leave the house since covid. I’m back on crutches after being off for several years. I’m afraid to get it again. I could end up in WC for life.

    So, I’m 66. I’ve had crps since I was 23. Yes, use electric carts in stores if it means less pain at night. If it means you can stand to cook a meal when you get home. Don’t be embarrassed about being disabled like I have been my whole life. Very few people in my life even know I have it. Don’t suffer alone. it’s not good for you, for your family, or for the CRPS community. Reach out.

    And for sure, if i spend any amount of time on the CRPS FB group, it’s not long before pain is thru the roof. I’m not sure people understand how the sympathetic system works. it’s not in your head. talking about pain is painful for us. The word pain causes me pain. be well. and thanks.

  6. Annette Konnie

    I’m so happy I’m not alone. My tragedy began three years ago. I went into have some scar tissue to removed, just a day surgery. After surgery I was in a terrible amount of pain but they had removed my IV. They said they’d give me a shot of Anti Nausea meds & a pain med to get me home. The nurse gave me this inter muscular shot into my thigh! I had a very very rare reaction which put me into the hospital for 10 days. I have NICOLAU SYNDROME from the inter muscular shot! It’s a very very rare syndrome that doesn’t have a treatment plan. It’s taught in medical schools but it’s so rare that most Doctors haven’t even seen it.
    I underwent 20 Hyperbaric Chamber Treatments to try and heal my left thigh (an area the size of your entire hand) I lost tissue, muscle and basically the entire thigh was Necrotic and dying. They saved my leg from being amputated however even though I’ve healed I still have chronic pain deep in the thigh all the way to my pelvis. I do have a wonderful Pain Management Specialist who quickly diagnosed me with CRPS……she has been wonderful to work with to manage my pain. However I’m getting very fatigued and my pain isn’t or hasn’t subsided even a tiny bit. I’ve spent these last 3 years just trying to heal and nothing else.
    I’d appreciate any and all advice, information and people you might know who could educate me and or help. I loved the list you wrote

  7. Lori Henderson

    Betty McDaniel, if you have a diagnosis of CRPS or RSD, apply immediately for SSD or SSI depending on your work history. It’s impossible to work regularly, never knowing what each day will bring and financial stress can trigger more pain.You need to take care if yourself first.

  8. Scott Best

    I have no words, I woke up with swollen knee and fours later no one knows what’s wrong. Every knee Dr says crps, pain Dr doesn’t believe so. Mri, x-rays, other tests show zero problems with knee. I just can’t accept the crps diagnosis.
    I feel like there is sand paper under my kneecap most if the day, leg muscle is slightly smaller then other. At one point 4 years ago you couldn’t put a tissue on my knee cap without the most sensitive pain one can imagine.
    My soul has left my body. The pain is never ending. I prey no one has to ever go through this.

    1. Michael Morrison

      I know how you feel, I going through the pain that you are. My is in my upper body, and the pain never stops. I just wanted to let you know that you are not alone, and every day is a challenge. Keep the faith and don’t give up. hang in there and keep going forward.

  9. Jessica Percival

    Hi,I can’t thank you enough for your honest account of CRPS. My then 11 year old daughter hurt her ankle in Jan 21 and has suffered through CRPS. Last weekend I took a video
    of the first time she’d walked unaided and no trainers on, with her toes down since January. So proud of her!! Then on Tuesday night this week she started getting agonising pains in her left elbow. Now it’s still the same. I really resonance with your story and I think that it would really help her it has she’s only just turned 12, Please could you send us an account of your story that doesn’t mention suicide. Not ready to even explain what that is or why some people need it. Many thanks, Jess x.

  10. Dean Eason-Williams

    I was recently told my condition is CRPS by a pain specialist. I’m still trying to understand and even trust the diagnosis- much less accept what seems to be devastating news if it’s true. it would explain many things but also make many other things seem disconnected and add even more questions. I’m awaiting another emg next week to validate his suspicions and if that adds “proof” then I’ll follow his guidance and accept it. I just want to be able to deal with the nonstop pain and try to get my life back. A drunk driver hit us head on in Oct 2017 which damaged my spine initially and then several injections – ending with a dual epidural that went badly and injured my spinal nerves – I’ve walked with a cane every day since, pain daily but sone periods of intense and insane pain. If I know what I’m up against I feel like I can at least do something that will improve things.

  11. Betty McDaniel

    Hi thank you for posting. I was just diagnosed with CRPS after a foot surgery. I am now 5 months with little pain relief. I have had two nerve blocks with no relief. Ii am now having target injections which are so painful. The Dr now wants me to consider the nerve stimulator implant but I don’t want to do that. It seems not many people show signs of relief from that. Can you tell me more about what is helping you most.also I am considering filing for disability. Not sure what to do next. I am taking pain medications. I think my doctor is good. He is trying to help.

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