Best initial treatments for CRPS

I'd like to invite @caanaya10, @grannyzoo, @barbbielor, and @delia74 to this discussion to share their insights with their journey on CRPS. While each member is in a different stage of their diagnosis, they may be able to share some thoughts on how they managed their CRPS in the beginning days.

Unfortunately my CRPS wasn't diagnosed for over four years. Poor surgery on my right foot in 2008 started the pain process. In 2012 a pain management doctor diagnosed CRPS. It has spread to my left foot. Both lower legs and feet are involved with either small fiber neuropathy or CRPS. I have a bad left knee but ortho won't operate because of the CRPS.
I am glad your case was discovered early as my PT has helped a couple of her patients out of CRPS by the Osteopathic treatment she provides.
May you be blessed by finding the right treatment for you.

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.

Did you get my reply?

@grannyzoo, unfortunately we did not get your reply.

For some reason my reply did not stick in the blog.

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 wanted to let you know that I, too, suffer from CRPS. I’ve had it in both shoulders/upper arms for almost 15 years. I was with one pain management doctor, who had me on opioids for about a decade. I eventually got off of them and found a pain management specialist who had actual, effective, relief-sustaining treatments. We started with the Sprint system, as you described. Yes, it gave me a WORLD of relief! But I was allergic to all of the adhesive that were used to hold everything in place on my skin near the insertion point of the leads. I toughed it out for the 3 months, but I couldn’t go a day longer. My skin was on FIRE and very blistered! We let my body heal up from my reaction to the adhesives. Then he offered my a permanent implant, similar to Sprint, but the skin is completely closed up, with no wires going through the skin. I jumped at that! So we scheduled time for the implant. I couldn’t be happier with it! I get at least the same, or better, relief from this new system called Nalu. And for the rechargeable batteries that have to rest over the main part of the implant, they have a silicone adhesive cradle available, which I have no reaction to whatsoever. Maybe ask about the Nalu system, if you need more medical intervention to help manage your CRPS.

Thank you. I found your posts helpful.

DO NOT get a spinal cord stimulator as first treatment. Check spero clinic website as they treat a lot of people with crps with failed SCS. Batteries exploding etc. This is last ditch treatment as any, even a needlestick, can cause a spread. One of the few MD crps experts in the country says never ever have any kind of surgery without ketamine anesthesia to prevent a spread. Even dental. Even colonoscopy! I have crps in my colon.
I've had it 45 years but when I got it it was still called causalgia. I woke from a laminectomy with my foot bright red, swollen and burning. Spent a year in bed, 3 mos inpt at a rehab pain unit (they dont exist like that anymore I don't think.) They say take megadoses of vit C to prevent a spread. I've written here about my life with CRPS. Got it at 24yo, now 69. Was in remission for a little bit till I had my knee replaced and since Covid, I'm hips down, plus ribcage, laryx.
Yesterday I discovered dr pascal, chiro, in Cary NC. Check his video on YT. Like spero I'm dure he doesn't accept insurance which also doesn't pay for ketamine. Before you end up on SSDI, if you have some cash, get this kind of treatment not surgical or invasive. Even the IV for the ketamine can cause a spread. You have the best chance for a total cure early on with ketamine.

At 45 years, there's not much that can be done for me. I had 3 trigger fingers injected yesterday and was afraid those shots could spread it. The hand specialist said he had never met anybody whose had it 45 years. Neither have I, I said, thats why they call it the suicide disease.

Also find a psychotherapist who specializes in pain. Will help with depression. You can't be in pain 24/7 and not be depressed a smart therapist told me 44 years ago at the pain unit.

Get some ketamine treatments!

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