I'm willing to share, and hope that my experiences can offer reassurance or comfort to anyone on the long arduous, and painful journey that I've been on for almost three years now . I've written several long posts about CRPS but I am open to addressing questions.

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I started out with CRPS the beginning of January in 2020. My left foot for four nights in a row got a cramp in it, causing the bottom of the foot to ratchet up towards my right leg. It was excruciating. On the fourth night, I actually saw it happen. After day 5 there was a severe pain in my foot and I was positive that it was broken. I ended up going to numerous doctors and no one could tell me what was going on. The was pain in my foot that felt like there were 1 million bees stinging the inside of it. The incredible went up my leg. My toes were very painful. In February I had a pain that was just awful. It felt like someone had grabbed me about 3 inches above the ankle and clamped down on my leg to the point that I actually fell to the floor. I had reached the point that I had to become my own advocate because I could not find a physician to help me let alone giving me walking aids. I was sure they thought it was in my head. I ended up getting an appointment with a neurologist, In hickory, North carolina, and she was clueless. I continue to have pain in my foot, and my leg felt like it was burning or it was ice cold. It turned red in large places my foot and leg. I was convinced that the foot was broken. The neurologist sent me for an MRI and it showed that I had had an ischemic stroke in the past but she couldn’t tell me anything more. I ended up going back to the Foot Doctor who finally said to me you’ve got CRPS. Ironically, I had thrown everything into Google describing what was going on with my body and I came up with diagnosis of dystonia or CRPS. I went back to the Neurologist one more time, and she told me that I had CRPS but couldn’t help me other than to tell me what the Foot Doctor had said. I hit that brick wall so hard I could not believe it. Because of Covid I was having a terrible time finding someone else to work with me. I ended up contacting the mayo clinic in Jacksonville Florida. WHAT A BLESSING! The man that I spoke with told me that I had help right in my own backyard. I need to contact UNC. There was a very long wait for that appointment. So I found another pain specialist who did not herd me in like cattle but was willing to listen to me. (I had gone to another pain management doctor but he wouldn’t listen and wanted give me a Botox injection without paying attention to what I was saying to him. I chose not to go that route.) The Denver, NC put a sprint implant in the back of my left knee where the sciatica splits. This company is based out of Beachwood Ohio. Oh my gosh! The relief was just incredible! I had been experiencing neuropathy in the bottom of my foot, and everything was relieved immediately ! Unfortunately, I could only keep it for 90 days. After the 90 days was over, I was back to square one. The pain was back and the neuropathy was back. It was suggested that I get a spinal cord implant. I decided to go to UNC to get this done. They gave me an option of five different implants. I chose to go with the Boston Scientific Implant. I did not get the relief that I had gotten with the sprint. Eventually a rep in Charlotte, with Boston Scientific, worked with me and discovered that my legs had been hooked up backwards with the implant in my back by the original rep. She fixed it on her computer. I felt very good with it for quite some time and then I ran into issues again. The CRPS had mirrored over into my right leg. In October of last year I found a doctor in Mount Holly, North Carolina with Southpoint Pain management. His name is Dr. Russell Davenport. He immediately put the sprint back in the back of my left knee where the sciatica splits and I wore it for 90 days. It pulled the CRPS out of my right leg. I have been going to his office every 60 days for follow up. In November 2023 I had discovered, with our Thanksgiving dinner, that sugar was triggering my CRPS. Big time! I immediately stopped eating sugar. My neuropathy cleared up and the episodes with the CRPS subsided for the most part. I decided one day to sample a small slice of a blueberry pie that I had made and I paid for it big time. The pain was just excruciating! I clearly understand why it’s called a suicide disease. When I was with Dr. Davenport‘s office, I learned about a support group in Charlotte North Carolina. It is called Fight The Flame.org. For the first time in four years, I was actually going to talk to someone who has this disease. I encourage you to go online and look them up. They have zoom meetings. The gal that runs this program is a wealth of information. Beth Stillitano is her name.Bottom line on what I’ve learned: *Keep moving *Drink water * Get off of red meat * Eat fish and chicken but mostly veggies *DO NOT EAT SUGAR!!!

I have had CRPS for over 15 years it's full body from my toes to my face it's mirrored through my whole body I was bed bound for years and now I'm barely able to do things because of pain meds the problem I'm having is I moved from Florida to N Carolina and altho doctor advertising treatment for CRPS most have no clue they want to do injections here instead of pain meds which anyone who really understands what CRPS is knows that injections send most of us into a several day flare that is the most horrific pain imagined so I have been flying monthly to my pain management in Florida just to get pain meds to live also someone here wanted to do a pain pump when every doctor I've spoken to in Florida advises against it I'm at a loss it's not cheap to fly back and forth rent car hotel and get my scripts filled monthly does anyone have any insight that could possibly help me even tho my records have been sent this State doesn't believe in pain meds they treat you like your a drug addict I even went to same organization I use in Florida here in N Carolina and the doctor said I was over medicated and wouldn't issue pain meds I mean there the same organization for God sake any help please I'm waiting on disability so traveling is hurting my savings I only have small amount of 401 to live on and I'm going broke and my pain just gets worse due to travel and stress