Complex Regional Pain Syndrome

calivianya, BSN, RN · Aug 31, 2015

We have a pain management MD who admits to us for 5 day ketamine infusions for CRPS, so we see a fair amount of them at my ICU. They aren't ICU patients in any way. It makes for an easy night.

They come in and immediately get a PICC placed and we start the drip. We start at 10mg/hr of ketamine and increase by 10mg q6h until we hit goal (usually 100mg/hr, but occasionally I've seen 120mg/hr), or until the patient develops pretty bad nystagmus, whichever happens first. They sit at that dose for a bit, we turn the drip off at the midnight before they are supposed to go home, they get a nerve block in the morning and they leave.

We require family members to be with them 24/7. They hallucinate pretty good on the ketamine. We have PRN Ativan we give like it's scheduled because it tamps down the crazy by a bit. Most recently, I had a ketamine patient ask me where the fish circling above my head came from. I had another who spent the whole five days being petrified of the dark man in the corner. She said his skin and his eyes were black and she could see him reaching for her out of the corner of her eyes. Creeped me the heck out every time I walked in the room!

Some of the patients experience complete, lasting relief from their CRPS pain, which is unbelievably awesome. We give those people their lives back. Others are repeat consumers and need another treatment after a while, but still - it is pretty cool stuff. I love it when the patient is up to goal and I ask them how their pain is, and they say they're not hurting, that the pain they have dealt with for years isn't there right now. Score! :)

OCNRN63, RN · Aug 31, 2015

Some of the patients who would come in for ESI would get ketamine...wow. They were full on crazy. I felt sorry for some of them; they were so tormented by their hallux.

Cricket183, BSN, RN · Sep 1, 2015

Complex Regional Pain Syndrome (previously called RSD or Reflex Sympathetic Dystrophy) is a fascinating condition from a scientific standpoint. The RN in me finds it intriguing. However, as someone who suffers from it can I just say it absolutely sucks! It is without a doubt the most painful thing I have ever experienced in my life and I would not wish it on any one! It's a neuro-inflammatory condition that is really poorly understood. There are a lot of theories about what causes it--auto immune response, misfiring of the sympathetic nervous system, glial cell activation, a combination of all the above....

I have struggled with it now for over 8 years. I had to leave nursing because of it 6 years ago and have been on disability ever since. I started ketamine infusions just shy of two years ago and am making tremendous progress--or I was until I fractured my tibial plateau in May, but that's a whole other story. My infusion protocol is a bit different than what is described in calvianya's post. I do outpatient infusions. I go for 4 hours 4 days in a row every 4-6 weeks. My doctor's office has an infusion center on site. I receive high dose ketamine mixed with lidocaine. I am pre-medicated with Versed & Ativan for hallucinations & receive Clonidine to counteract the side effects. I also receive Zofran and Toradol prn for nausea and headaches respectively. I am on continuous monitoring during infusions and there is a RN present at all times. The infusion room can hold up to 3 patients.

For the most part the ketamine infusions have been keeping my CRPS under really good control. That's not to say I don't still have pain because I do but instead of it being a constant 8-9/10 or feeling like someone poured gasoline in my veins and set me on fire, it feels more like a 3-4/10 on a daily basis and an annoying sunburn.

I still have flares where my pain gets severe but it's nothing like it was. Two years ago, I could barely move, get out of bed, or participate in life. My CRPS primarily affects my upper body. It started in my right arm & shoulder. Then it spread to my left arm, my chest wall, rib cage, upper & mid back. It affects my heart causing sinus tachycardia and periods of SVT. It affects my stomach causing gastroparesis. I was on heavy narcotics that didn't actually help the pain--just made me not care about it (or much of anything else). I had tried everything at that point--nerve blocks, stellate ganglion blocks, spinal cord stimulation, physical therapy, massage therapy, etc. Nothing worked.

For me ketamine has been the answer. (Not everyone with CRPS has such a good response or has this treatment option available. Many insurance providers will not cover ketamine and there are limited providers who offer ketamine infusions.). I've been lucky. I'm getting my life back--albeit slowly. I have regained almost complete range of motion and all function of both arms. It has taken a lot of Aqua therapy and physical therapy and lots of support from my family. My goal is still to return to nursing in the next 1-2 years. (Gotta recover from this tpf first!) I'm in my 40's and I still have a lot to offer--a lot to give back.

Hoozdo, ADN · Sep 1, 2015

I was a CRPS patient and I shudder to even think about my past with it. Luckily, it was caught early and I responded well to Stellate Ganglion nerve blocks. I had six of them in total and each one brought more relief. My original injury was from a fall at work resulting in a herniation in C4-C5. I was out of work for almost a year and almost had to file bankruptcy due to the pittance of pay my state awards for a Workmen's Comp injury. I have a deep empathy for anyone that suffers from chronic pain.