CRPS frustration

[manowar rules]

I know that CRPS is supposed to be in the pain doctor's wheelhouse, but I always find these referrals unsatisfying. Perhaps someone can teach me the error of my ways?

I don't doubt that legit CRPS is out there. I've heard the pathophysiological theories, and that SCS can be a home run for these patients. But my referrals for CRPS generally fall in one of two poorly responsive camps:

Scenario #1: The Under-treated Nociceptive Injury
Ex: Patient had foot crushed by 1 ton counterweight, resulting in malunion fractures of every metatarsal. Ortho elects for whatever reason to treat conservatively. After 4 months, patient has persistent pain, swelling and tingling in foot. Ortho diagnoses CRPS and refers to pain management.
I sympathize with these patients and might do some med management, but sympathetic blocks rarely work here. Nothing I do is going to fix the real injury.

Scenario #2 (more common): Patient decides to stop using body part for months/years and gives self CRPS:
These often start with legit post-surgical neuropathy or on-the-job injuries. But this "CRPS" type tends to come with major anxiety and other psych-comorbidities. Extremely anxious patient inadequately participates in PT and guards against movement or even things touching affected body part. After chronic disuse, patient inevitably develops allodynia and even osteopenia in affected body part (which makes sense, I've read about astronauts having hypersensitivity and allodynia from their clothes for a short time after returning to earths's gravity from the ISS). Surgeon understandably gets tired of dealing with patient and refers for to pain management for CRPS.
I always refer for good PT/OT but this is inhibited by patient anxiety and often other secondary gain issues. Sympathetic blocks work transiently, neuromodulators maybe a bit. These patients don't seem to want to get better, don't follow-up on psych referrals, and I don't want enough ownership of them to put a stim in them.

Maybe though I am being overly pessimistic and missing out on the great rewards of healing CRPS? Maybe there are great treatments I am ignorant of?
I am open to re-education.

---

Members don't see this ad.

 

[Laryngospasm]

Type 3: patients lose some hair on their leg and tells pcp my whole body hurts.. you have to do something..
Usually by the time any real crps is recognized it’s too late for anything we do to do any good at all. No.. a block is not going to help three years after onset.. thanks for the referral.

 

[PMROralBoards]

I would say 50% of my patients with legitimate crps get benefit from ketamine infusions repeated every few months. Tramadol seems to do better if they are already on opioids and are open to transitioning to other meds. Otherwise for me it’s just a lot of education on desensitization and expectation management.

 

[willabeast]

I know that CRPS is supposed to be in the pain doctor's wheelhouse, but I always find these referrals unsatisfying. Perhaps someone can teach me the error of my ways?

I don't doubt that legit CRPS is out there. I've heard the pathophysiological theories, and that SCS can be a home run for these patients. But my referrals for CRPS generally fall in one of two poorly responsive camps:

Scenario #1: The Under-treated Nociceptive Injury
Ex: Patient had foot crushed by 1 ton counterweight, resulting in malunion fractures of every metatarsal. Ortho elects for whatever reason to treat conservatively. After 4 months, patient has persistent pain, swelling and tingling in foot. Ortho diagnoses CRPS and refers to pain management.
I sympathize with these patients and might do some med management, but sympathetic blocks rarely work here. Nothing I do is going to fix the real injury.

Scenario #2 (more common): Patient decides to stop using body part for months/years and gives self CRPS:
These often start with legit post-surgical neuropathy or on-the-job injuries. But this "CRPS" type tends to come with major anxiety and other psych-comorbidities. Extremely anxious patient inadequately participates in PT and guards against movement or even things touching affected body part. After chronic disuse, patient inevitably develops allodynia and even osteopenia in affected body part (which makes sense, I've read about astronauts having hypersensitivity and allodynia from their clothes for a short time after returning to earths's gravity from the ISS). Surgeon understandably gets tired of dealing with patient and refers for to pain management for CRPS.
I always refer for good PT/OT but this is inhibited by patient anxiety and often other secondary gain issues. Sympathetic blocks work transiently, neuromodulators maybe a bit. These patients don't seem to want to get better, don't follow-up on psych referrals, and I don't want enough ownership of them to put a stim in them.

Maybe though I am being overly pessimistic and missing out on the great rewards of healing CRPS? Maybe there are great treatments I am ignorant of?
I am open to re-education.

This is slightly off topic but IMHO where medicine is missing the boat on CRPS is prevention. We need better research on how to prevent CRPS associated with ortho procedures. If I were king and making research funds available I would begin with tourniquets used during surgery and preventive medications to give pre and immediate post surgery and ortho cast applications for broken limbs. Based on clinical experience (I never did research) those would be high value targets.

 

[bedrock]

I know that CRPS is supposed to be in the pain doctor's wheelhouse, but I always find these referrals unsatisfying. Perhaps someone can teach me the error of my ways?

I don't doubt that legit CRPS is out there. I've heard the pathophysiological theories, and that SCS can be a home run for these patients. But my referrals for CRPS generally fall in one of two poorly responsive camps:

Scenario #1: The Under-treated Nociceptive Injury
Ex: Patient had foot crushed by 1 ton counterweight, resulting in malunion fractures of every metatarsal. Ortho elects for whatever reason to treat conservatively. After 4 months, patient has persistent pain, swelling and tingling in foot. Ortho diagnoses CRPS and refers to pain management.
I sympathize with these patients and might do some med management, but sympathetic blocks rarely work here. Nothing I do is going to fix the real injury.

Scenario #2 (more common): Patient decides to stop using body part for months/years and gives self CRPS:
These often start with legit post-surgical neuropathy or on-the-job injuries. But this "CRPS" type tends to come with major anxiety and other psych-comorbidities. Extremely anxious patient inadequately participates in PT and guards against movement or even things touching affected body part. After chronic disuse, patient inevitably develops allodynia and even osteopenia in affected body part (which makes sense, I've read about astronauts having hypersensitivity and allodynia from their clothes for a short time after returning to earths's gravity from the ISS). Surgeon understandably gets tired of dealing with patient and refers for to pain management for CRPS.
I always refer for good PT/OT but this is inhibited by patient anxiety and often other secondary gain issues. Sympathetic blocks work transiently, neuromodulators maybe a bit. These patients don't seem to want to get better, don't follow-up on psych referrals, and I don't want enough ownership of them to put a stim in them.

Maybe though I am being overly pessimistic and missing out on the great rewards of healing CRPS? Maybe there are great treatments I am ignorant of?
I am open to re-education.

The reason that none of the patients you described get better is that none of them have CRPS. Neither category of patient above remotely fits Budapest criteria.

Those are patients with a physical injury coupled with catastrophization, not CRPS.

I’d send them to pain psych. And I wouldn’t see them past the first visit as you’re just spinning your wheels.

Actual (budapest) CRPS does very well with blocks and SCS.

 

[Dr. Ice]

As an aside, most surgeons will send for crps management and the patient has no evidence of crps whatsoever.

Kind of like when their knee patients used to fail (before genicular and pns) and they said “it’s coming from you back” and yet even after years of that being recognized as not the case, those same surgeons are being recognized as the best in the biz….🤦🏽‍♂️

Like, they are the “best” for dumping **** and not knowing the answer to that their failed surgeries, and yet for years we treated their failed patients in whatever way we could

 

[powermd]

Low-dose naltrexone trial. 4.5 mg x 7 days, 9 mg x 7 days if no better.

I have way more success than I deserve with this strategy. A few days ago I did a follow up with a patient who started this 8 months ago. Ortho PA with wrist CRPS x 2 yrs after falling on outstretched hands and spraining the wrists. Pain gone within 3 days of starting LDN. Slight flare at 3 months, doubled the dose. Pain settled, and she dropped her dose back down. I told her if she could make it 3 months with no pain, she could try stopping the med- and she did. Now pain free and no LDN for 3 months. WC case too!

I haven't found ketamine for pain to move the needle much. I do the same protocol as for depression. 5-6 infusions over two weeks, then maintenance. It's rare to see pain relief go more than a week out from an infusion, although patients feel great in the chair.

 

[dozitgetchahi]

The reason that none of the patients you described get better is that none of them have CRPS. Neither category of patient above remotely fits Budapest criteria.

Those are patients with a physical injury coupled with catastrophization, not CRPS.

I’d send them to pain psych. And I wouldn’t see them past the first visit as you’re just spinning your wheels.

Actual (budapest) CRPS does very well with blocks and SCS.

Rheum here.

And then there is the patient who ended up in my office after being told she had b/l type 1 CRPS for years, despite the fact that she had diffusely warm/swollen MCPs, PIPs and wrists, and obvious rheumatoid nodules…work her up and she’s CCP and RF positive…

She had RA…

 

[TIVAndy]

Low-dose naltrexone trial. 4.5 mg x 7 days, 9 mg x 7 days if no better.

I have way more success than I deserve with this strategy. A few days ago I did a follow up with a patient who started this 8 months ago. Ortho PA with wrist CRPS x 2 yrs after falling on outstretched hands and spraining the wrists. Pain gone within 3 days of starting LDN. Slight flare at 3 months, doubled the dose. Pain settled, and she dropped her dose back down. I told her if she could make it 3 months with no pain, she could try stopping the med- and she did. Now pain free and no LDN for 3 months. WC case too!

I haven't found ketamine for pain to move the needle much. I do the same protocol as for depression. 5-6 infusions over two weeks, then maintenance. It's rare to see pain relief go more than a week out from an infusion, although patients feel great in the chair.

Hey do u have a reference /paper on this?

 

[callmeanesthesia]

My best so far was the few weeks postop foot surgery patient from the surgeon’s NP. Hot, red, swollen and painful foot. She said she was put on antibiotics in the hospital but then discharged without antibiotics or follow up labs or imaging. Also had type 2 DM that wasn’t all that well controlled. Sent her right back to them, and didn’t hear from her again.

 

[CleanUp]

It is challenging to get results with those patients with this type of neuropathic pain and don’t want to take meds, state the SGB/LSB doesn’t “fix” the problem, decline a SCS, and yet still come in frequently.

 

[willabeast]

Rheum here.

And then there is the patient who ended up in my office after being told she had b/l type 1 CRPS for years, despite the fact that she had diffusely warm/swollen MCPs, PIPs and wrists, and obvious rheumatoid nodules…work her up and she’s CCP and RF positive…

She had RA…

I was referred a CRPS (from a neurologist) who tested positive and had classical presentation for skin/hand/wrist sporotrichosis (antibody tested +).

 

[powermd]

Hey do u have a reference /paper on this?

This is the paper that got me started on LDN for CRPS:

Treatment of Complex Regional Pain Syndrome (CRPS) Using Low Dose Naltrexone (LDN)

Complex Regional Pain Syndrome (CRPS) is a neuropathic pain syndrome, which involves glial activation and central sensitization in the central nervous system. Here, we describe positive outcomes of two CRPS patients, after they were treated with low-dose ...

www.ncbi.nlm.nih.gov

 

[dozitgetchahi]

I was referred a CRPS (from a neurologist) who tested positive and had classical presentation for skin/hand/wrist sporotrichosis (antibody tested +).

Yeah there’s a ton of crazy examples like this out there.

One of my attendings in fellowship had a patient like this who had been told he had CRPS involving the left foot/ankle. Red, hot, swollen joint. Eventually someone realized that it was responding well to prednisone, which he was being given for years. He gets sent to rheumatology and the joint gets tapped…boom, it’s gout.

 

[TIVAndy]

Yeah there’s a ton of crazy examples like this out there.

One of my attendings in fellowship had a patient like this who had been told he had CRPS involving the left foot/ankle. Red, hot, swollen joint. Eventually someone realized that it was responding well to prednisone, which he was being given for years. He gets sent to rheumatology and the joint gets tapped…boom, it’s gout.

Agreed.

Thats why the Budapest criteria states - no other diagnosis can better explain the signs and symptoms

 

[kstarm]

If patients meet criteria for CRPS I find that I usually can help them with all the various multimodal treatments. Most still have pain, or sensitivity but they are in a better place, and some homeruns.

You need to address the elephants in the room e.g. If there was something traumatic that caused the problem or a trauma history with unaddressed PTSD that needs to be addressed if they want to move forward. If there is an active SUD that needs to be addressed for the person to move forward. If there is some complicating work or legal issue, that needs to be addressed to move forward, and in particular the guarding of the injured area needs to be addressed etc.

It can be easy to forget how far away we are from struggling with understanding what is going on. Most people find a lot of relief by having an explanation for why they hurt, That it's "not all in their head", validating that their situation sucks, and having a plan to address it.

Why Do I hurt
How anxious do I need to be about this
What can I do to make myself better
What are you going to do to help me feel better.

Some people lose too much by feeling better. When I was just out of fellowship I had a patient with what was being called CRPS of her arm/shoulder. I tried everything I could to help her feel better. My mentor asked why I was trying so hard when the patient wasn't putting in the same effort. Next visit I said I'm sorry I don't have the skill to help you feel better, and can't think of any further treatments. She got a huge smile and thanked me profusely that she didn't have to try anymore. It turned out that her daughter who was taking care of her was pregnant and she didn't want her to move out so that she could still get cared for and have full access to the grandbaby.

 

[ziggyziggy]

This is the paper that got me started on LDN for CRPS:

Treatment of Complex Regional Pain Syndrome (CRPS) Using Low Dose Naltrexone (LDN)

Complex Regional Pain Syndrome (CRPS) is a neuropathic pain syndrome, which involves glial activation and central sensitization in the central nervous system. Here, we describe positive outcomes of two CRPS patients, after they were treated with low-dose ...

www.ncbi.nlm.nih.gov

Thanks for the reference. Have you also used LDN for dystonia in post stroke and how are the outcomes?

 

[Ducttape]

that article and one other case report are really the only 2 "research" papers out there on naltrexone.

fortunately, naltrexone is pretty darn safe, but this article was essentially 2 patient case report. it would be problematic to base a change in treatment paradigm based solely on that.

 

[MitchLevi]

We did LDN in fellowship and I was never impressed. Solution looking for a problem IMO.

 

[BobBarker]

The two Stanford articles are very positive though…

 

[cowboydoc]

that article and one other case report are really the only 2 "research" papers out there on naltrexone.

fortunately, naltrexone is pretty darn safe, but this article was essentially 2 patient case report. it would be problematic to base a change in treatment paradigm based solely on that.

Have you looked at the data behind anything done for CRPS? It's almost comical.

 

[MitchLevi]

Have you looked at the data behind anything done for CRPS? It's almost comical.

In my experience, if caught and managed early it does well for a lot of ppl, especially the hand and arm. Stellates seem to be very effective in my hands, while lumbar sympathetics are not. Work comp CRPS will not improve under any situation, so do NOT stim them.

 

[Baron Samedi]

There's been multiple RCTs showing benefits of Vit C supplementation in CRPS prevention but I have yet to see Ortho actually use it.

 

[Ducttape]

Have you looked at the data behind anything done for CRPS? It's almost comical.

comical is still considerably different than 3 case reports.

there is as much evidence for injecting IV ozone as there is naltrexone. are we going to go down that rabbit hole?

Ozone Therapy for Complex Regional Pain Syndrome: Review and Case Report - PubMed

This manuscript presents ozone therapy as a novel, safe, and inexpensive approach for RSD/CRPS, and an alternative to drugs. It is practiced worldwide and has abundant literature on its biochemical mechanisms, effectiveness for pain (and other conditions), and overall healing usefulness, yet...

pubmed.ncbi.nlm.nih.gov

 

[MitchLevi]

Is medical ozone why there was that huge hole in the ozone layer in the late 90s that everyone freaked out about? Someone went up there and stole it, marketed it for use in healthcare and it eventually didn’t work?

 

[cowboydoc]

Is medical ozone why there was that huge hole in the ozone layer in the late 90s that everyone freaked out about? Someone went up there and stole it, marketed it for use in healthcare and it eventually didn’t work?

The capeless superheroes injecting ozone into discs actually saved the world by subtlely patching that hole in the ozone layer. Truly unsung heroes!

 

[Ducttape]

the ozone hole is still out there but we have done a great job healing it. it may be completely healed by 2040.

the reason is that we have stopped using CFCs.


trivia question - who is the "scientist" who discovered CFCs, and what other horrendous environmental toxin is he known for?

He "had more adverse impact on the atmosphere than any other single organism in Earth's history."

 

[MitchLevi]

the ozone hole is still out there but we have done a great job healing it. it may be completely healed by 2040.

the reason is that we have stopped using CFCs.


trivia question - who is the "scientist" who discovered CFCs, and what other horrendous environmental toxin is he known for?

He "had more adverse impact on the atmosphere than any other single organism in Earth's history."

Prob that German dude Fritz Hobber or whatever. Zyclon B or something.

 

[lobelsteve]

the ozone hole is still out there but we have done a great job healing it. it may be completely healed by 2040.

the reason is that we have stopped using CFCs.


trivia question - who is the "scientist" who discovered CFCs, and what other horrendous environmental toxin is he known for?

He "had more adverse impact on the atmosphere than any other single organism in Earth's history."

In 1940, Midgley contracted polio and became paralysed and bedridden. Being a keen inventor, he devised a system of ropes and pullies that allowed others to lift and manoeuvre his body. On 2 November 1944, he became entangled in the ropes and died of strangulation at the age of 55.

 

[Ducttape]

Midgeley not only invented CFCs, he introduced unleaded gasoline.

 

[cowboydoc]

Midgeley not only invented CFCs, he introduced unleaded gasoline.

Leaded.

 

[Ducttape]

oops yes leaded. thanks

 

[oreosandsake]

it's NOT all sympathetically mediated. also consider mimickers like erythromelalgia

CRPS is an abused diagnosis by people who don't know what is really CRPS. it's abused by PI/work comp docs and sometimes when ortho/podiatry wants the patient out of their practice. the disease also evolves after time and patients can have some of the signs and symptoms early/late and not have them at other times. fwiw, I trained with Harden (lead author on the budapest criteria) and stanton hicks.

lot of patients have swollen painful edematous feet/ankles after foot injury, foot surgery. they dont all have the neuropathic signs/sx, allodynia etc
the same with people with charcot feet but you CAN treat them the same way sans sympathetic blocks

peripheral blocks do really well and often better than stellates and LSBs IMO. enough volume and proximity you end up blocking the nerves around the blood vessels (nervi vasorum), which causes localized sympathetic block as well as the sensory/motor nerve and the nervi nervorum around the large nerves.

I have seen countless patients get 4-8 weeks of pain relief and progressive benefit from peripheral nerve blocks to the point that their pain is marginal/manageable. I dont have access to ketamine infusions.

Charles Oliviera from Brazil gave a great talk once suggesting that it was really all CRPS type II. just that the docs did not have a diagnostic way to identify the cases that had direct nerve injury. we can find a lot of nerve entrapments with ultrasound now that i'm sure 5-10+ years ago everyone just called crps type I.