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

Chronic Pain | Last Active: Jul 10 6:30am | Replies (235)
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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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Replies to "I have CRPS 1 & 2, In my foot and leg. I finally was diagnosed with..."
lorirenee1 | @lorirenee1 | Jan 30, 2021

@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

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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grabofsky | @grabofsky | Sep 6, 2021

I am so surprised to hear how many people have this with no treatment. Italy has a treatment and if we have to sell our house to try we will.

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