20. Complex regional pain syndrome (CRPS)

Lectures for pain specialist trainees preparing for their exams (FFPMANZCA, FFPMRCA), or anyone else that is interested. This lecture focuses on complex regional pain syndrome (CRPS).
Feel free to make comments or ask questions

[Kristine]

I have CRPS from crushing injury to leg 1 yr ago. It is horrible to be treated like it is "all in your head" ... it's not. So many more symptoms and issues. Nobody listens. My life is a mess.

[PainSpecialistsAustralia]

Hi Susan. DMSO is available from compound pharmacies in Australia. If she has not seen a pain specialist physician, she should. Our practice is based in Melbourne. It may be worth contacting us. Pain Specialists Australia.

[Dan_Alien]

I've had CRPS since I was in my early 20's but did not receive a true DX till I was 28. I'm 39 now and it's really bad. I do ketamine therapy every 3-4 months' Lyrica which for me has helped with some of the burning. It feels like I am standing in cold snow so I can attest that LSB's work! It's the only procedure besides the ketamine that give me some warmth in my right leg. I also have it in my right elbow. But now I have no choice but to take pain medication but I take it as RX'd because the one I'm on finally after many trial and error have one that at least brings me down to a 3-4 on the pain scale. I'm usually an 8-9 but it's really can be worse than that. I am also on tricyclics which I feel helps as well. What I really appreciate the talk about the cold phase which is where I'm at. This disease can be hell but stay positive! Thank you for such a great lecture!

[madMARTYNmarsh]

I have Complex Regional Pain Syndrome. I have broken my neck twice, my right ankle once and my right wrist once. I have had shrapnel injuries. None of these things cones close to the pain I feel with CRPS.
The closest pain to CRPS I've ever felt was when I was splashed with burning hot oil or when I accidentally got hot tar on my finger tips, it hurts more than either of those but it's a similar pain.
I was on 100 micron fentanyl patches but it was destroying the skin on my legs (the only part of my body that isn't oily, I am naturally very oily skinned so the patches won't stick) so I asked my doctor to be put on tablets, I wanted fentanyl tablets... my doctor put me back on Oxycontin 😪 a pain killer that didn't work in the beginning and definitely isn't working now. I suffer every day and I blame my doctors for it. I'm going to give her a couple of weeks more, after that I will give up on her and try to get back into the patches, if my GP refuses to put me back on the patches I will find a heroin dealer and take that, Fentanyl was the only thing that came close to helping, the dose I was on was equivalent to just over 400ml of morphine, apparently it's dangerous to be that high for so long, it can shorten my life expectancy but answer me this, which would you prefer:
1. Dead by the age of 50 (I am 38 or 39, can't remember as th last 10 years are a blur of pain) and experience a moderate daily pain but still be able to function slightly.
Or
2. Experience an horrifically intense pain every day, remain stationary for almost every hour of the pain. Consider and are close to suicide because of the pain (I actually looked at travelling to one of the euthanasia clinics but I can't afford the treatment.

I have 4 kids, I can't be a dad to them. My wife's life would be better/easier if I were dead. My life would be easier if I were dead. I am not a religious person but I do consider suicide to be for the weak minded. I wasn't weak minded before this fucking illness but I am now and it gets worse by the day. I hate myself, I hate what my family have to deal with.

To anyone else with CRPS: I hope you get better, I hope I do too but after more than 10 years of it, I don't see any way to get better as I have had this illness longer than the 12 to 18 months that my doctor says CRPS remains curable. Too much pain to cry, it makes me delirious.

[emstacy]

Finally had this diagnosis secondary to nerve damage (brachial plexopathy). Was positively suicidal. Everybody told me it was only nerve regeneration and would not treat my pain. Got 95% recovery of both injuries with Sympathetic nerve blocks and rehab for a good two years. Eternally grateful to the md Silverstien of Philly, an internist that had GBS and resulting interest in nerve diseases and caught it right away after I suffered for months and surely would have killed myself. Thank God it was not too late. I understand that if not diagnosed, blocks might not work.

[Susansays]

My 14 year old daughter has suffered for a year. We live in Qld and treatment is limited.. very limited. Tramadol, anti inflammatory drugs and antidepressants have not done much. I was told that DMSO could help topically yet not available in Australia.. Her pain is spreading from her whole left arm up to her neck and face. I have asked about Ketamine and no ... not in Qld...! Because of my daughter’s age they won’t give her Opiates., other than Tramadol 50 mg 3 times a day. Celebrex twice daily. They are talking about a hospital stay as this pain and being an outpatient is not treating her quickly enough as driving to the hospital is too painful for her and appointments get missed. My daughter had a horrible reaction to Gabapentin, so that isn’t an option.

[trishaprett]

I am diagnosed with CRPS.Multiple surgeries post ankle surgery.Discharged, no aftercare.Hospital acquired injury, and trying to manage pain control myself.POP, gave me a pressure sore.

[heathermartin]

I suffered from full body CRPS for 11 years. I have completely healed my body. The only way that I found was to completely detox off all meds and use physical activity to do so. It was difficult but it worked. Reach out if you have any questions. ❤️

[cathy]

What studies are being down to correlate gut health to brain health and the overall ability of the body to function and detox? Invasive procedures and drugs are not getting to the root of the problem. Tragically frustrating.

[souloftheage]

CRPS is an evotutionary development to preserve the core at expense of the extremities.
It why animals can chew their limbs off when caught in a trap.
It is simply damage to a nerve. There is no "Type 1" or "Type 2". There is simply damage to a nerve. The damage maybe so slight at first, thar the injury is ignored by the patient.

And I believe RSD is a better name as it highlights the Regional and SYMPATHETIC nature of the pain.

Chronic Regional Pain Syndrome is so ambiguous. The diagnosis doesn't describe what is seen clinically.

Ive taken high dose opioids with minimal benefit.

High dose PREDNISONE(60mg/day) is what helps me. And oddly, I don't seem to have the high prednisone side effects: thinning of nails, elevated B.S., flushing of face.

As an anesthetist, I'd find it all fascinating, except it's happening to me.

[randomoldbloke]

I would like to say as someone with CRPS, the gaba drugs, lyrcia are good when they work but when the side affects kick in it is deadly, memory loss long and short term, caues my eyes not to be able to focus, ringing in the ears still there a year after I stopped taking it and dont forget it is a right bastard to come off you have to taper off it even with the horrendous side effects, i have tried many meds in the 5 years i have had it and opioids are the only thing that work to help me to function, forget about pain free that does not happen it is all about taking the smallest dose to be able to function, it is very hit and miss to what works in my case anyway. Forget any physical therapy the pain is just not worth it what works for me is isometrics, everyone is diffrent and no 2 ppl present the same so there is no one size fits all approach. I am on 20mgh of norspan and 5 mg oxy for breakthrough i have it in my left knee now it has spread to left leg, part of lower right leg and rh side of my head

[juliedorman]

It doesn't always burn as a primary symptom. I have some burning but it's not my first complaint.

[xDomglmao]

Are the definitions/ criteria used in this talk still up-to-date?
Thank you very much for this great lecture!

[seanmock]

Initially started in my left leg from an accident, then spread to left hand and arm after surgery, now I’m both ears...it’s been a long journey

[theflatcat]

I can't get diagnosed with it. No one know here in Canada recognizes it. All my doctor did was a nerve conduction test and then said I don't have it. I've been in a pain clinic for a year, and they are calling it chronic pain in my leg and foot. Im so mad. I definitely have it.

[marciaewell]

If Infliximab/remicade works, has there been any research with Enbrel, also TNF blocker/inhibitor? Any connection with CRPS and Rheumatoid Arthritis? Is CRPS considered an inflammatory autoimmune disease? Is Raynoud's Phenomenon associated with CRPS? Hashimotos's I have moderate-severe RA, but at onset in 2004 at age 49 presented with rapid onset of rare neurology pain and twitching and very severe migratory burning nerve pain, raynounds disease and body wide Allodynia. Mayo neurologist DX mononeuritis multiplex from autoimmune disease, thyroid or RA (?). After a few years of toxic meds, methotraxate and allergic rxn to sulfasazine that almost burst my gut in a toxic megacolon. In 2006, docs finally got me on Enbreal and 6 months later much of the nerve pain, Allodynia and conus twitching went away. Now only high stress or extreme pain brings on the twitching of hands and legs anymore. But in 2016, had severe complications immediately after a left knee replacement of red hot swelling and extreme burning pain. Ortho knee doc thought it was infection, but blood work showed inflammatory response so we assumed it was RA attacking the new parts, but I question if maybe a CRPS component???. Now I am very concerned I may have CRPS as I am 4 weeks out of a major hammertoe surgery with long pins in three toes. I have been having increasing burning, throbbing, stabbing electric shock like pain since the surgery. I have the twitch of hands, arms, legs and feet back and extreme allodynia on the forefoot of the left foot with the hammertoe surgery. GP doc put me on Gabapentin which I am needing more and more to help control the burning pain. Comes on fast for no reason and can last 12 hours or more till it settles out for 3-8 hours then another bout of pain, nights can be unbearable and have to take vicodin and gabby. Ice makes it worse and triggers the nerve pain. Ortho doc is not acknowledging my pain, probably thinks I am over reacting or wanting narcotics I still have 2 more weeks of the K wires in my 3 toes and very worried. I need a good neurologist or pain doc in Colorado please that can make a DX and help sort this out.. I have been through dozens of surgeries, major back TLIF fusion, 6 knee, hands, feet etc, but nothing touches this quality of pain I have now and it is worsening every day. Thank you for any help for some direction and excuse my spelling!

[Nolanoyayo]

I had a 4th metacarple fracture and although the bone healed the pain continued. It is driving me nuts

[arthurpapas]

Hi there is there any evidence of PRP treatment for patients with CRPS that it helps with pain management ?

[emstacy]

Don't tell ME those blocks didn't work.

[Weesson]

you forgot one treatment, diet. A whole food plant base diet