Complex regional pain syndrome (CRPS) and feeling blank

I always say, if I had enemies I wouldn't wish this on them. Battles are won and lost daily but winning the war because I'm still here. I feel for your injuries and this disorder. I had floppy foot for a short duration and when I went to NY they put me in a brace so I didn't trip over my own foot. I went to Google and ran some searches and what came out of that was taking the brace off and pumping my leg up and down to try and regenerate the nerves. It worked, thank God. All my feeling came back and things are good. I do on occasion get tired even these days and ankle goes out. I fall sometimes but have been paying more attention to my body and so whatever I am doing (e.g. mowing the lawn), I stop and come back to it a different day.

I feel for you, EMGs are harsh. I opted for two extra back about 10 years ago in about 6 month intervals because even though painful I needed to know if my peroneal nerve was healing.

You have to keep positive. Don't get me wrong though, during long bouts of flare-ups that last days, sometimes slight weather triggers that end up being a compound in severity of ups and downs and the isolation of darkness, trying to stay positive is very hard. I struggle with it but once weather lets up it's like the grass is green again. Yesterday I purchased on Amazon a chronic pain journal so I can start keeping track for this upcoming doctor but mainly for my pain management doctor so he can see the trends. The chart on there is an hourly line chart. I don't know what rules there are to posting the link but go to Amazon, books, Chronic Pain Tracker and look for Alvin Publishing (May 17, 2021).

Good luck on your battles as well.

Be very aware when you increase dosing of gabapentin. They had me jump my dosage from 1500mg to 3000mg and the side effects were severe. Watched the wall climb as if hallucinating, was weird. I found Neurontin to work but my body could never get used to the side effects and I stopped. I've considered recently giving Elavil another go but wife wants me to wait to see the next doctor first.

Google Medscape and CRPS, account sign-up is free. Search CRPS. Articles are high quality.

Copy and paste to Google: An-Update-on-the-Pathophysiology-of-Complex

Typically I search for things in the past five years for medical journals. Google peer-reviewed CRPS. Click scholarly articles peer-reviewed CRPS. You can search by years for how back you want your search to go. Using keyword searching with quotations, minus signs, or the word and, you can pinpoint what you really want to find and what you want to hide from your searches. Hopefully the articles above increase understanding and help anyone who would like to know more in-depth. I'm no expert, but I read a lot into this disorder because it drives me crazy, but I feel educating myself thoroughly, I can then communicate effectively with physicians.

Another good site search: Google (redundant, sorry) warm and cold crps

Hope everyone has a great weekend!

CRPS is the highest rated pain on the McGill Pain scale for a human. It truly is a horrible condition and I pray that anyone who experiences it finds a way to cope. Knowledge is power. Even though reading in depth about this condition scares me, I do it often and believe you should too.

@chuck406 Welcome to Mayo Clinic Connect. I am so happy to hear that you had a positive experience at Mayo.

I see that you were considering Mayo Clinic's Pain Rehabilitation Program (PRC). I have personal experience with that program and I can tell you that the 4 week investment is worth its weight in gold!! One aspect is to wean a patient off medication and alcohol, but there are so many other facets that they work on. Have you considered applying for the program now that you have a more lucrative position?

A 4' fall off the catwalk! My goodness! Is that when the pain came on or were you diagnosed with CRPS before that? Also, what side effects did Neurontin give you?

Not sure if my other response will load. Second time I've lost a comment with depth and details difficult to replicate verbatim. Next time will copy it before sending it.

I think years ago I would have been a candidate for PRC with the amounts of painkillers I was taking but these days they are used infrequently and as last resort. Even though hard liquor usage is rare too I understand the concern with using it and even though it appears I am taking sides and becoming defensive, I'm not trying to come off like that. Twenty years into this disorder I have strict control of how I choose to reduce pain and have rules so to speak when deciding which route to take and being observant with half-life's and cross-reactions for the options I choose.

Prior to Mayo Clinic, Percocet 5mg or 7.5mg (can't remember) at 240 a month. Because I had little value for myself and situation and being in my mid-20's partying that didn't stop me from consuming large amounts of alcohol too on top of the painkillers. I reflect on what quantities I was taking and abusing alcohol with them because at the time I didn't care and to some degree wished for death. Surprisingly I didn't kill someone else drinking/drugging and driving. I was driving for a living, and never had a DUI, still to this day. Surprisingly lucky and ultimately stupid in the risks I subjected others to I wasn't concerned for myself. These days, my thoughts towards self-preservation are more sane because life has changed for the better with life's additions that make life worth living and fighting for (i.e. family).

Pain was as bad as you can imagine with an oilfield injury of that magnitude and so I didn't think anything of the severity because I figured that's what happens with an injury like that. Arthroscopy 01/2001 and 6 months of physical therapy; severe pain for rehabilitation. Returned to work June 2001 on light duty and ankle gave out slamming my knee into the shop floor while carrying pipes. Managed to hit my shoulder on the pipe rack too. Went home, to the doctor, and came back to work the next day. Foreman said, "we will see how much pain you're in tomorrow". I quit that afternoon. Second arthroscopy and one year of physical therapy. Pain this go around was harsh and had a new doctor shortly afterwards because was convinced the guy in Rock Springs didn't have enough knowledge in what was going on.

Dr. Christian Guier in Jackson Hole, WY told me what needed to be done, he even suggested the type of surgery I would likely need but also said he didn't have the experience to do it and I moved to the east coast to see NY doctors. What's weird is by luck and word of mouth the doctor I found in NY did perform the surgery that he spoke about. Officially diagnosed with CRPS in fall-2002 with NY Hospital for Special Surgery. Had a team of doctors and Dr. Thomas Wickiewicz who performed OATS and Maquet procedure to stabilize the mechanical issues. Unfortunately, the classic three stages of CRPS (that I know now) is I had already gone through acute and sub-acute phases, and likely was chronic in NY. Epidural for 3 or 4 days, numb from waist down to try and reset pain signals. The pain raged the moment the epidural wore off, this was the new baseline for quite some time. One more year of therapy, slew of pharmaceuticals, amitriptyline, gabapentin (i.e. Neurontin), anti-depressants, pain pills, biofeedback, mirror therapy, full leg ice packs with air pump to encapsulate the leg (not sure if warm and cold CRPS was understood by physical therapists at that time), Google, TENS unit, topical capsaicin and lidocaine, Lyrica, Doxepin, Neurontin, Elavil, Lortab, Percocet, Oxycodone, Methadone, Marinol, and if I had my list handy could provide the others I have forgotten about.

May 2004 moved back to Montana and saw Dr. Sherry Reid in Bozeman. She went about the same route with the 240 a month prescription. Went to Mayo and did awesome testing. The purple powder sweat test being in an incubator was most memorable. Anyways, the pain clinic residency and OxyContin were my options. Push forward through the Oxy and I gave it all up and dried out on my own. I know now that that level of painkillers is bad for CRPS. Analgesics long term make CRPS worse, at least from what I have read and believe that whole-heartedly but there is a fine line although it helped and I walked away from it, not having some sort of avenue to relieve the pain leads one to find another way but not based on addiction, for quality of life. My quality of life from 01/2001 has permanently been altered. Young man being 21 years old had a normal active lifestyle and in an instant just a mere memory. I gave up everything due to flare-ups and turned to alcohol because even though a bad option, was better than being in pain. I make no apologies and I'm not trying to be offensive or upset anyone. I however strongly encourage others to not only take what I am saying as a lesson but as a means to seek knowledge into the newer articles into this disorder. You have to find a way that works for you, but also understand that it could be permanent and so long term strategies of varying degrees are important. What I did wasn't right and frankly was dangerous for many reasons. I don't beat myself up about it but do understand as symptoms progress into chronic CRPS that I am unwilling to repeat certain behaviors and treatments. The most promising development in CRPS is the usage of Plasma-rich platelets. Something I will hopefully have the opportunity to test out starting after a consultation this October.

Long winded and detailed, my apologies.

With regards to Neurontin side effects: 300mg to 1500mg was lethargy, fatigue, and concentration issues. 1500mg - 3000mg was zombie-like status, hallucinations on more than one occasion, dizziness, slept a lot, and never could get those under control. That's not to say a lower dosage and slower ramp up couldn't have worked but after a couple of months of side effects I had enough.

Yeah im starting to feel like it's not doing anything just due to the nature of the injuries I have basically my nerve is crushed in my neck which led to crps diagnosis after my fractures its been one hell of a year 1800 mg of gaba a day and really all I feel is duh most the day and anger and frustration

Wondering what level of anxiety depression and anger has come about for those of you who have crps lately I have been very down no matter how much I talk to anyone my anger has been on the side of being annoyed by just about anything lately I feel like the constant pain is affecting my brain somehow because of all the nerve issues I try hard to keep my happiness and spread it but lately its gone and I just wonder why this is all happening

Thank you!! I will be attending the Mayo Clinic in Rochester, MN.

The "Cycle of Pain" can help you understand what your experiencing, Paulie. Have you watched Mayo Clinic's Dr. Sletten present on Central Sensitization Syndrome (CSS) yet?
https://youtu.be/vJNhdnSK3WQ
He explains the science behind CSS and concepts of how we are effected emotionally, behaviorally and physically from chronic conditions.

Good on you for asking this question and reaching out for help on Connect. I'm sure others with CRPS will chime in with their experiences.

Will you let me know if the video helps you with clarification?