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.

@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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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

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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@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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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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@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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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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Hi folks, it’s been awhile since I posted. Sorry. Not sure what’s been happening. Bad days due to subzero temps with high humidity. Life with CRPS sucks but we can do it!

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