Anyone been diagnosed with complex regional pain syndrome?

Symptoms are variable among patients. My diagnosis was made 6 years ago after two lumbar spine surgeries so my symptoms are in my low back, buttocks, legs and feet. Improvement has been slow. I’ve tried every modality for pain and am currently planning an implant. My advice is to try to start/keep moving to maintain and build strength. Avoid dependence on opioids, sedatives and sleeping pills if you can. My symptoms have diminished somewhat but they still impact daily activity moderately. Ice provides the best pain relief for me so I keep frozen slippers and back pads in my freezer for use every day and sleep on an ice pack at night. I’m sorry you have to deal with this diagnosis. Hopefully you will get good medical advice.

I fell down stairs and fractured my right wrist in 5 places. Part way through my physio I developed CRPS, I became fearful, anxious, and couldn't bare to have anything touch my wrist area. My surgeon and physiotherapist diagnosed me and suggested Diclofenac cream for my wrist, specific exercises to do at home and a mild anti anxiety med.
After 6 weeks my responses became normal. I continue the meds.

Welcome, @mspeigle. Great tips for managing persistent pain. You might also wish to follow the Spine Health support group here: https://connect.mayoclinic.org/group/spine-health/

Have you chosen which implant or started that process?

I have started process and have appointments for MRI thoracic spine and psychological evaluation. I have not discussed which implant but can do so at F/U appointment. Thanks.

I was diagnosed about five years ago. I have post herpetic neuralgia. Ungodly pain that changes your life. I had it on the back right side. Then it started in areas that I didn't have the shingles. It went to the left side and upper back. That is when I was diagnosed. Doctors do not know why you get it and there is no specialized treatment.

Yes I have the same diagnosis...... There's not much information that they gave me. They put me on gabapentin

Complex Regional Pain Syndrome.
In 2021 i had a work place injury, A fall from an elevated walk way onboard a fuel transfer ship.
I extended my arm out to catch my fall and tore my shoulder . Scans reveal torn Labrum and im booked into private hospital surgery within weeks .
Pre surgery im told by the Anethetist, they not only put you out for the procedure they administer a 12 hr nerve block .
Im also told recovery time aprox 3months .
Surgery . Post opp . When the 12 hr nerve block wore off , the pain was like nothing i have ever experienced , adding to this was an overwhelming feeling of dread , of danger, that im in serious trouble here if something doesnt change immediately. Shaking uncontrolably at 3am the nurse says im at the limits of my pain relief meds . Doc and Anethetist wont be in till 9am. What was suppose to be an overnight stay turned into 3 nights. Sent home with pills and potions , arm to remain in a sling 24/7 for 6 weeks , only out to shower and a small pendular excercises . Week 7.. Sling comes off and I commence physio . I can barely move my arm and everything physio tries over the following weeks flares the pain levels up. Physio says frozen shoulder possible signs of Complex Regional Pain Syndrome and im like whats that ? Says i need to get the pain levels under control to proceed, At this stage i am absolutely 100% undenibly convinced ive had a botched surgery . I remember to this day a perpetual feeling of dred, that somethings definaltely not right, that something terrible is about to happen..
Days later at home , I open the letter box and a small lizard jumps out . I instinctly throw my arms up in the air from the fright and thats when it happen for the 1st time . It tears me up to even recall this moment from memory . When i threw my arms up into the air , it felt instantly like i had been struck by lightning . A bolt of lightning passing through from my post opp shoulder traveling entirely thoughout my arm, shouder blade and finger tips . The initial pain, took what seemed like forever to subside down to a 10/10 It was way past the threshhold and beyond .Im left pretty shaken up from the experience and wondering what the hell just happened to me . Im sent to a Pain Managment Specialist . My arms all blotchy, im walking around with it held in this constant guarded position and these lightning bolts are becoming all to often although never as intense as that 1st occasion . My elbow has now blown out like a tennis ball , the Ulnar nerve (funny bone) has left its groove and out of position . I dont want to be there . I dont want to be anywhere but at home . Without a word or introduction the specialist takes 1 look at me and says " OMG you have got it bad " I Explain to the doc whats been happening . She performs some range of movement test and asks a few questions on a check list. Im given the diagnoses of Complex Reginal Pain Syndrome Type 2 . (Adds neuro/nerve damage) as i fit the document test critera . Sent to a certified physio trained for CRPS patients. I start off with mirror therapy . I thought this was only for Amputees with ghost limb feelings? I move my good arm while looking in a mirror to trick the brain and it flares my bad arm up within minutes. Pyhsio says we have to drop this back to picture therapy . No joke ... I have to look at pictures of people using their arms 3 x a day . Im thinking wow must be a giltch in the matrix here, this is crazy .
Im paying extra for a SPECIALISED CRPS physio to look at pictures 3x a day.
Anyway .... Added to this on a phone app is a series of swipe/flip cards . The test is to identify left or right hands in a picture . For the life of me i can not identify the difference. Brain wont do it . Soooo weird .. Im told i have lost the brain pathway to some extent and cognitive function .. What !!! From a shoulder surgery?
32 visits to specialist physio , 12 post opp appointments 40+ Gp. Pain Specialist , Neurologist , Phycologist, scans , ultrasounds nerve conduction studies and at 1 stage stem cell injections were considered an option . Physio even tried accupunture . 2 pins in and flicked them . I near jumped off the table and cat clawed the ceiling . That was the lightning bolt again . Was like a shimmering eco inside my bones . That feeling when a dentists tools touch your teeth x 1000 but in my bones ecoing . Ive had enough pills and potions to drop a herd of buffalo. Ive jumped through every hoop like a circus pony . Im done with it . There is no fix . Just management.
I have spent $250,000 chasing rainbows .
Ive just learnt to live with it .
Its now 4 years post opp . I have not worked a single day . Ive lost 12 kg in weight do to muscle attrophy and deconditioning . I still have an extremly limited range of movement and documented 18% permanent impairment.
I still get muscle tremmors , blotchy skin and constant 24/7 pain in my entire left arm . A good day - apart from the deep dull ache thoughout ,is my skin feeling like someones giving me a chinese burn , the nerves are on fire . I havnt had the lightning bolts for a while and its mainly because i know what triggers them . I know all to well they are only a sudden movement away. No thank you. 30 years of marine experience and certifications all down the drain as they require medicals to revalidate. I have tried , failed the medical twice now, not to mention i would not pass most Companys drug policys with the medication im on or be allowed to operating heavy machinery . All this from a 1m fall over 4 years ago . My major turning point from botched surgery to actually believing CRPS was my physio telling me to read others accounts of CPRS on support groups and forrums. I was amazed as to how some were almost identical to mine . I have also been recently selected to take part in a new clinical trial for some new wonder drug for CRPS. Mmmm here we go again. Just another band aid ?
Im happy to chat with anyone going through this . The best therapy is knowing your not alone . Admin i have posted this on another page here , not sure where im suppose to add .

I also started my plight with CRPS in 2021 after a thumb surgery for arthritis. Doc and physical therapist were clueless. I was quickly losing range of motion- hand was a fixed claw and I was unable to rotate my wrist. I researched and ended up telling the docs that I thought it was CRPS. When I got to pain management, I was told that if I didn’t have Stellate Ganglion blocks I would lose my hand because I had it severely. I got it again in my right hand two years later after a surgery to fix a dislocated thumb. Despite a new surgeon, nerve block and not being casted it came on after six weeks post surgery. It is hell and I had more blocks, ketamine infusions (which did knock the pain down but it wears off) and lots of chiropractic sessions to try and unfreeze my shoulder as it had spread. Here I am four years later and I still have pain - more fibromyalgia than the initial nerve pain. A rheumatologist has stated me on cymbalta. Cymbalta is an antidepressant which also helps with muscle, nerve and arthritis. I feel I’m through the worst but it does take a toll on your wellbeing as well as relationships. I’m only on the second week of cymbalta and I know it can take several weeks to see a difference yet my mood seems more stable as of now. I would suggest finding a good chiropractor and rheumatologist to talk about trying cymbalta- it can be a bit for the body to adjust to it. Best of luck to you fellow warrior!