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Brain & Nervous System | Last Active: Apr 26, 2023 | Replies (118)

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@pfox (your daughter) and @overwhelmed, I am also on this journey. Took numerous doctors and many years to be diagnosed with CRPS. Mine is also going into different parts of my body--started with right ankle fracture, then the nerve pain moved to my left leg, up my right leg, into my left and right hands. My glucose levels, which I had controlled since being diagnosed as diabetic in 2008, started making no sense given my diet; my nutritionist is concerned that I have gastroparesis. Am having gastrointestinal issues as well. My right foot and calf feel numb, but also have intense pain. I take a smorgasbord of medications including oxy, gabapentin, cymbalta, etc. Tens didn't work nor ketamine lozenges or pain patches and from January 2016 to 2017 I participated in ketamine infusions every 4 to 5 weeks, yet my CRPS continued to spread and my pain is getting worse. My pain doctor has recommended that I go to a comprehensive pain center so that all my issues can be examined collectively and have an appointment with a doctor at the pain center at Beth Israel in Boston. My neurologist has said that my condition is only going to worsen over time. I am currently in a battle to ensure that the Board responsible for my disability retirement takes into consideration my CRPS, related pain issues and medications. They wanted to reject all that and only focus on my ankle (which was injured at work), but recently approved in a 7 to 5 vote to have me seen by 3 additional Independent Medical providers including a neurologist. I have already had numerous IMEs, but my hope is that through all this maybe the next person with CRPS that has to get approval will find it an easier path to follow. I am trying to make some meaning of the fact that I this disease and it helps keep me moving forward. CRPS can be a pretty lonely road--have lost friends that felt that I wasn't "trying hard enough" to heal. That hurts. Keep trying to find the joy that does exist in the world around us.

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Replies to "@pfox (your daughter) and @overwhelmed, I am also on this journey. Took numerous doctors and many..."

Hi my name is Melissa and I have CRPS I got diagnosed about two-and-a-half 3 years ago but they believe I've had it since 2007 I live in Mass and I would love to get in touch with you and talk to you I don't know anyone in mass that has this disease and it'd be really nice to talk to somebody that gets the pain and understand stuff private message me if you want I would love to talk to you and I'm so sorry you're dealing with this horrible disease to