1. < Chronic Pain

Want to talk with others. Have you found relief from CRPS?

Posted by mam14 @mam14, Feb 4, 2019

I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

smallengineguy | @smallengineguy | Sep 24, 2020

Hi sunny flower. The patches I tries were buprenorphine. let's just say we did not get along at all. I have tried the lanocain patches as well but found It was leaving a foul taste in my mouth...strange but true. I have been slowly getting back to work...albeit painful and be very careful. I'm a manager at a landscape company and I'm responsible for the repairs and upkeep for about 300 pieces of equipment. Thank GOD I have a very understandable company and they are willing to work through this with me!!!

Thank you sunnyflowet for your words of encouragement

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1 reply
sunnyflower | @sunnyflower | Sep 24, 2020
In reply to @smallengineguy "Hi sunny flower. The patches I tries were buprenorphine. let's just say we did not get..." + (show)
@smallengineguy

Hi sunny flower. The patches I tries were buprenorphine. let's just say we did not get along at all. I have tried the lanocain patches as well but found It was leaving a foul taste in my mouth...strange but true. I have been slowly getting back to work...albeit painful and be very careful. I'm a manager at a landscape company and I'm responsible for the repairs and upkeep for about 300 pieces of equipment. Thank GOD I have a very understandable company and they are willing to work through this with me!!!

Thank you sunnyflowet for your words of encouragement

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Hi. I'm very familiar w/ buprenorphine aka suboxone. It's an uncomfortable drug and most people have to stay on it indefinitely. Wow, that's great about your work!!!!! I worked w/ an open wound in my abdomen while I had treatment for it for 5 months, and, with quite a few broken bones, a corneal ulcer (auto-immune), scleritis (autoimmune), and recovering from meningitis-5 days in hospital, don't even know how I got home and didn't wake up until about 3 weeks later! It was awful working w/ so many afflictions! There were others as well. Wow, 300 pieces of equipment!!! That's a HUGE responsibility!!!!!! You go girl! I hope and pray I can encourage and uplift others. I really do. I appreciate you saying that and also want you to know I want you to be honest w/ me. If you don't want me to talk about certain things or whatever, I won't personalize it. Really. Hang in sister! Sunnyflower

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smallengineguy | @smallengineguy | Sep 24, 2020

OK sunnyflower... we must first clear up one little issue...I AM MORE OF A BROTHER then a sistet... but it's ok I get..I do try and find humor from life and this one did it....LOL...
😂😂😂...yea I work with the small engine department and we have a ton a equipment....not counting the salt trucks...front end loaders...and skidsteers and the list goes on........I will let you know if things bother me. But you are free to speak your mind.....

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1 reply
sunnyflower | @sunnyflower | Sep 24, 2020
In reply to @smallengineguy "OK sunnyflower... we must first clear up one little issue...I AM MORE OF A BROTHER then..." + (show)
@smallengineguy

OK sunnyflower... we must first clear up one little issue...I AM MORE OF A BROTHER then a sistet... but it's ok I get..I do try and find humor from life and this one did it....LOL...
😂😂😂...yea I work with the small engine department and we have a ton a equipment....not counting the salt trucks...front end loaders...and skidsteers and the list goes on........I will let you know if things bother me. But you are free to speak your mind.....

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smallengineguy, Sry, I'm so uniquely talented that way. Geesh! It's the Gabapentin!! Just getting to know who is who but your Mayo name clearly says "guy". Thank you for pointing out my error. I hope I don't mess up again! Blessings, Sunnyflower

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dstewart318 | @dstewart318 | Dec 6, 2020
In reply to @rsnowflake "Hi I'm Renee I live in the Philadelphia area. I was diagnosed about 2 and a..." + (show)
@rsnowflake

Hi I'm Renee I live in the Philadelphia area. I was diagnosed about 2 and a half years ago. My struggle is difficult as well. Once I got diagnosed I read everything I could get my hands on and medical journals. I unfortunately have bipolar and another autoimmune disorder. So I've been to neurological, rheumatoid, psychiatric doctors to get a spinal implant that was a miracle. I was so close to losing my hand. I did the trial and within a day my hand went back to "almost " normal. I have an I pod that controls both of my arms. Weather and stress play a huge part in the control of my crps. Obviously being bipolar I understand the horrible days of depression and hopelessness. Which then makes the crps worse. It's in my left leg, and both arms. The other day I fainted from the pain, I woke up to my 16 year old yelling my name and asking if I was alive...lol.. unfortunately these r the things that go with the disorder. In Pennsylvania medical marijuana is legal!!! It only started about a year ago and is amazing for the disorder. No opioid will help. They are for pain, what we have is very different more like phantom pain from an amputation. No one can see it no pure diagnosis, yet it feels like you are going to die. The marijuana helps take your mind down a few notches and you can take it any way you feel comfortable. I use a vape pen and if I'm in the hospital I use pill form. Reach out to anyone who will listen! The people in our forum are amazing. And I get it I'm only 45. Feel free to ask for a private chat anytime or just in the forum. The people have such similar stories. The more we reach out to each other the less u feel alone.

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Hi. I'm just now see ing these responses to my original text . I'm Dana 44 and have very similar testimony as yours please feel free to share with me anytime God bless

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neverrest | @neverrest | Jan 30, 2021

I have CRPS 1 & 2, In my foot and leg. I finally was diagnosed with it in 2014 after seeing quite a few doctors. Am here because the medication hasn't helped in a couple of years now. The Narco and Nerve meds just leave me in a fog. I had a spinal cord stimulator that would shock me all day for 3 years. They accused me of lying and finally Dr. Lubenow at Rush found out the leads were broken. Am tired, I can't sleep really and am very depressed. Really ready to just go home, can't imagine another 5 years like this. Any advise on new treatments.

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3 replies
lorirenee1 | @lorirenee1 | Jan 30, 2021
In reply to @neverrest "I have CRPS 1 & 2, In my foot and leg. I finally was diagnosed with..." + (show)
@neverrest

I have CRPS 1 & 2, In my foot and leg. I finally was diagnosed with it in 2014 after seeing quite a few doctors. Am here because the medication hasn't helped in a couple of years now. The Narco and Nerve meds just leave me in a fog. I had a spinal cord stimulator that would shock me all day for 3 years. They accused me of lying and finally Dr. Lubenow at Rush found out the leads were broken. Am tired, I can't sleep really and am very depressed. Really ready to just go home, can't imagine another 5 years like this. Any advise on new treatments.

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@neverrest My heart breaks for you. We have much in common. I also was shocked/electric sensations by my DRG stimulator, turned it off finally, and now I burn and have serious sleep issues. First, go immediately to a sleep doctor. I have an appointment with one next week. Second, go to ethanaturals.com and try Kratom for pain and relaxation. Next, try Benfotiamine, a form of B1 vitamin (thiamine) which helps neuropathy, CRPS pain. Look on Amazon and give it a try. They sell it there. It has helped my burning sensations tremendously. Feel free to personally message me if you want. LoriRenee1

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Amanda Burnett | @amandaa | Jan 30, 2021
In reply to @neverrest "I have CRPS 1 & 2, In my foot and leg. I finally was diagnosed with..." + (show)
@neverrest

I have CRPS 1 & 2, In my foot and leg. I finally was diagnosed with it in 2014 after seeing quite a few doctors. Am here because the medication hasn't helped in a couple of years now. The Narco and Nerve meds just leave me in a fog. I had a spinal cord stimulator that would shock me all day for 3 years. They accused me of lying and finally Dr. Lubenow at Rush found out the leads were broken. Am tired, I can't sleep really and am very depressed. Really ready to just go home, can't imagine another 5 years like this. Any advise on new treatments.

Jump to this post

Hi @neverrest, welcome to Mayo Clinic Connect. I am so sorry you are dealing with CRPS complications. I agree with @lorirenee1 that you do need to see a physician about your sleeping issue. Sleep is a huge factor to combating pain. You will notice that I moved your comment to a discussion that is ongoing about CRPS. I did this so that you can connect with other members who are dealing with the same thing.

You may also be interested in the following:
Latest Research | CRPS Treatments: https://www.burningnightscrps.org/crps-rsd-support/latest-research/

Promising treatment option for complex regional pain syndrome: https://medicalxpress.com/news/2019-06-treatment-option-complex-regional-pain.html

Complex Regional Pain Syndrome Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet

@neverrest What are you currently doing to manage your symptoms and pain?

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nlong53 | @nlong53 | Feb 6, 2021
In reply to @mam14 "I ruptured the fascia on the bottom of my foot. I had some small tears and..." + (show)
@mam14

I ruptured the fascia on the bottom of my foot. I had some small tears and bruising. I moved too fast and it snapped. It was immobilized for so long and was so painful. That is what caused it with me. I read that it can occur without injury also.

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mam14, I am dealing with the same as you. It is my right foot that the fascia ruptured. What can be done if anything? I am willing to go anywhere for pain relief. The burning sensation is taking the best of me. Looking forward to hearing from you. Ty!
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londonwc1 | @londonwc1 | Feb 7, 2021

For your feet the only thing I can suggest I put pillow on floor. then towel to protect pillow then ICE PACKS. then towel to protest feet, sit with both feet on ice, to cll them down. I have same thing .GOOD LUCK

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