Complex regional pain syndrome (CRPS) and feeling blank

@jillf3 Yayyy!!! That is great news. So happy for you! Which Mayo will you be attending?

Nearly 21 years with CRPS. Original injury: oilfield accident slipped and fell dislocating my R knee inwards, fracturing it and the ankle. Two years to get a correct diagnosis. Don't give up. It's been a rough road. Have a say in your treatment. Have had every pharmaceutical under the sun including Oxycontin, and refuse these days to take anything (side effects) but Tylenol 3 and only when it gets real bad. I do believe marijuana helps but that's personal choice. New York Hospital for Special Surgery, Scripps Clinic, and Mayo Clinic with at least two dozen doctors in-between. I did have about 8 years remission before it all came rolling back but that's also questionable from self-medicating with alcohol functionally for years. Gave it up for 3 months and only use single malt scotch as a lower tier before T3 pain relief and only one shot to feel two hours of relief. Have a consultation for Plasma-rich platelet injections this October after hours of research into the subject for rebuilding damaged nerves.

Wow some road can't imagine the battles I do know that my initial injuries stink to say the least with a trimal ankle fracture and complete shattering of my wrist I have a bit more recovery ahead of me till the bones heal in whatever way they the Dr's say is normal truth is I already walk with a limp foot turns blue have terrible stiffness and too boot I believe the crps was in mynllwer half but I was diagnosed in my upper region of the body because the pain was more severe there now I have to go for another emg ncv for the leg already 1 day at a time im trying to keep positive good luck on your battles my friend

@chuck406 Hello Chuck, welcome! Wow, man, you have a history and much experience living with CRPS. You've offered good, positive advice. Thats what Connect is about support, encouragement and learning by other experiences.

Thank you for sharing your chronic pain journey. May I ask what initially brought you to Connect? I read that you have been to Mayo Clinic a few times. I was in their 3-week pain rehabilitation program and had a phenomenal experience learning how to manage chronic conditions.

It's truly amazing you had an 8 year remission. CRPS is such a serious condition and management must be challenging. You really hit the nail on the head by owning the fact that alcohol and drugs play a role in upregulating more dysfunctional nerves. So many layers to peel back about pain management. Lifestyle plays a big role.

Congrats on your upcoming consultation for plasma-rich platelets. Knowledge is power! Do you mind sharing more about what your research found and why this treatment brings hope for managing CRPS?

Hi @paulieoneill4979-
This reminded me of you...and your daughter with the Dr. Seuss vibe

Thats a good one lol made me smile yeah you know today isn't a bad day I have pain but I'm smiling through it 😊 tomorrow we shall see

All you can do is take it one day, one moment at a time. 💪🏽

@willow First, congratulations are in order for your determination and perseverance to get out of a wheelchair. How long has it been since you completed the rehabilitation program, and how have you maintained your progress since?

It sounds like a wonderful opportunity in finding a specialized rehabilitation for CRPS. Did you have to travel far?

It’s been eight years since I completed my rehabilitation program. I was not supposed to do any exercise except what had been prescribed until I was told I could go ahead and begin short walks on even pavement. At first it hurt a bit on the walks but I continued and the pain vanished over time. I had no trouble finding a clinic that was familiar with CRPS in Ottawa as the physiatrist gave me a referral. I had exercise in hot water, massage, acupuncture, balance and strength exercises to do under supervision and at home as well. It was lots of effort, a little pain, and slow progress but eventually you get there.

Thanks for having me.

Honestly, I was looking for others' experiences in CRPS and Google is a good avenue to finding answers most times. My experiences with the Mayo Clinic was nothing but positive and I was delighted to see there was a forum. I'm frequently on the internet looking for new treatments and PRP/stem cell therapy seems like a good gamble. At this point, I have little to lose and being regenerative medicine, it's kind of exciting to think that just maybe there is hope in sight.

With Google it started as PRP and CRPS. There are quite a bit of articles out there. Personally, I feel I am out of options after doing the pharmaceuticals early on when the disorder was acute and then went sub-acute. I'm chronic at this point and very little solves the pain which mainly triggers from weather. Trouble is it's rare to be at 3/10 and mostly hangs around 5/10. During the winter months I have wild swings due to pressure and storms and/or extreme temperature swings. Same goes for the summer with rain, but generally up to 90 degrees is fine if there isn't thunderstorms which wreck my life. With the seasonal storms pain goes 7/10+ and is severe. My coworkers have witnessed quite a few flare-ups recently and I feel for them because it is unexplainable that this could happen to anyone without a damn thing to do to help someone suffering.

What I didn't mention earlier in my post is I had two arthroscopies on my knee then a third with OATS and Maquet procedure with complete cartilage replacement under the patella, partial outer knee cap removal due to the inward dislocation which tore all my cartilage under the knee with the 4' fall off the catwalk in the oilfield. It's been a journey. Mechanically everything is right but the pain is severe. March of this year I was able to get intermittent FMLA for flare-ups that I use every month. Thankfully, my employer understands.

What's important to understand about ultrasound and PRP is that they can map your nerves and find the damaged areas. I think my understanding is those damaged areas can be injected with your own blood which is centrifuged to a concentrated level of 5-7x then injected back into those damaged sites thus promoting healing that your body from CRPS dysfunctionally has malfunctioned to heal from the onset of the initial injury. Sounds too good to be true but I have to know if it works. This seems like a viable fix rather than a band-aid.

I'm not perfect with drugs and alcohol and use in low moderation. For me, the marijuana serves a purpose and occasionally the scotch for extreme pain but never with painkillers. My understanding is the high ellagic acid content which at least for me seems like it works but nothing works long term and I have to be careful not to get wrapped back into drinking for a different reason. This is purely as a pain control measure and in limited quantity. The marijuana relaxes me, helps me sleep through the night, and squelches the burning pain which at times is off the charts and takes my mind away. The side effect is being high, but it's safer long term in my opinion than taking painkillers. My pain management doctor is cool with it too, so that's a plus to have support.

I'm thankful to have had 8 years remission because I was able to work where I wanted. Seems all good things come to an end. Went from welding/machining school to working for Boeing as an Aerospace Machinist. Now I have an office position with long term potential. It's nice not doing physical labor anymore and being so stubborn in my younger years I should have been doing it all along but I loved it and miss it.

For me, at the time making about $12 a hour, I couldn't afford to move to Rochester to be in their pain program. And so, I chose the OxyContin route. They wanted me to get to 80mg a day. The 40mg to 60mg was rough, and at the time I was delivering auto parts; go figure. Not sure I ever told my boss what I was taking for fear of losing my job but had a dream one night that woke me up with a loud shotgun blast. It scared me so badly that I missed a dose on purpose, started going through through severe withdrawals at work that Saturday and went home, flushed the OxyContins down the toilet and made an emergency Monday appointment where I sought direction for what was coming. Neurologist said you have to ween and suggested a lower grade painkiller. I refused and survived a very rough experience then turned to drinking and drugging again as a source of giving up and trying to be out of pain. A many decade issue of self-medicating.