A Ketamine & Lignocaine Infusion for CRPS Saves the Day

Last week, it finally happened. A break from the pain. It was truly and totally amazing and my wonder was possibly enhanced by the fact that I was kind of tripping out at the time. What ketamine takes away in pain, it likes to give back in sparkly and confusing mind vacations.

My lowest pain level in years.

My lowest pain level in years.



In December, I had a single day ketamine and lignocaine infusion. Unfortunately, the pain relief wore off really quickly and by the week after the infusion, I was flaring back up to levels of pain that are far, far from manageable. I was experiencing a severity of symptoms that hadn’t been that bad since the days when I needed a wheelchair to get more than a few metres. Along with the physical symptoms, my ability to cope took a beating and I found myself cycling back through psychological issues that I’d thought were dealt with.

At the exact same time as my pain was returning, the weather in Melbourne started gusting in on this weird pattern that saw heat and humidity blowing across the desert from the tropical north west. Temperatures went up and temperatures went down, but the high humidity wouldn’t budge. I completely blame this weather pattern for how much pain I was in during December and January, it was the only major variable and I know from experience that humidity is the biggest enemy to my easily inflamed body.

*Shakes fist at the sky*

Realising that I was falling further and further away from coping or being functional, I contacted my pain specialist in the hope that I could go back early for the next infusion and perhaps stay a little longer than a day. He’s a super helpful guy, so I quickly found myself booked in for a three day infusion. Knowing that there was some relief in the near future made it a lot easier to cope with high pain levels for the couple of weeks that I had to wait.

A couple of weeks is nothing, really, nothing at all. I felt very lucky, many people wait years just to have a chance at a ketamine infusion.

I have never before felt as excited to go to hospital as I did last week. A couple of days before the infusion, the weather cooled down and my pain levels dropped substantially, from a constant 8-9/10 to about a 6/10. Pain ratings are a weird and subjective thing, but I knew my pain usually drops about 4-5 points during an infusion. The December infusion started at 8/10 and I think it might have hit a 4/10 before bouncing right back. This time, I was starting out lower and so I had a lot of hope that I’d feel the lowest pain scores I’d had in years.

I tried to keep my focus off of hoping for long term pain relief and just looking forward to lower pain levels while I was plugged into the IV bags.

Once I was hooked up and ready to go, the doctor popped in to tell me that I was going to be getting a higher dose of ketamine than usual. In fact, rather than building up the dosage at all, I was just going to get the highest amount that I’ve had in the past for the entire duration of the infusion.

I was a little nervous, but mostly thrilled. I had a crappy experience with high doses the first time that I had a ketamine infusion, however there were a lot of other crappy things about that infusion and these days I am used to how it feels to be on the drug. Stress and fear can quite easily get in the way of pain relief so being able to cope with them is important.

The drug dripped in and any sort of ability to concentrate drifted away. Within an hour or so, I was already feeling less pain. I plugged in my headphones and snoozed the afternoon away in a loop of Taylor Swift, Damien Rice and Ella Hooper (there might have been a little drugged up splurging on new albums).

By dinnertime, it was all I could do to raise my head and munch on a few hot (lukewarm) chips. I had a serious case of THE NAUSEA. It felt like all I could do was burp up foam. I barely ate anything over the next 24 hours. Feeling nauseous is highly unpleasant, but do you know what it’s better than? Being on fire. It’s much better than that. So I sucked up any urge to stress about my gurgling belly and just enjoyed the way that my pain levels kept dropping.

I usually get a little bit nauseous during an infusion, however I hadn’t felt anything like this since that first high dose infusion years earlier. Why this time and not every time? Your guess is as good as mine, or the doctor’s.

I find it hard to sleep on ketamine, but also hard to be awake. I just drifted along in a dream state, fluctuating between feeling like time passed quickly and very, very slowly.

My pain level was bouncing around between 4/10 and 6/10 on the second day. That’s when the lignocaine infusion was added. In the past, adding the second infusion has brought my pain down further and usually helps with the nausea. It worked a treat this time. Not so much on the nausea, but when I woke in the early hours of the third morning, I could hardly feel the burning at all.

My pain level was a 1/10. A ONE. Just a tiny little one. Barely there at all.

It was heaven. Temporary heaven, things that are that magical can’t be expected to last.

I was unplugged early on the third day as my tummy was getting a bit react-y at the infusion point (I have these infusions subcutaneously because I don’t tolerate needles in my arms well). I was very OK with this, I was still enjoying pain levels below 4/10 and was looking forward to being able to eat food again. I came home, rested up and watched my nervous system putting on a show.

Pain goes up, pain goes down, pain goes round and round and round.

It’s important to remember that ketamine isn’t a cure, I have never achieved remission from infusions (although some people do), I simply get to enjoy lower pain levels that make it easier to function as a person. It’s still Summer (kind of) and I’m still getting inflamed. I’m still needing painkillers at night and sometimes during the day, but the difference is that they are working a lot more effectively at the moment.

My arms and legs feel like arms and legs, rather than uncontrollable burning blobs attached to my torso. I am able to move and cook and exercise. These things still hurt, but I can do them – that’s the difference that the ketamine makes for me. It’s the difference between being useless and being functional, not the difference between pain and no pain.

My immediate goals are the same as always. I’ll keep doing what I can do, try not to overdo things, try to keep my pain levels manageable and build my strength as much as possible. The best thing to do with low pain levels is to simply enjoy them while they last.

Love & Relief,
Caf

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  • 9 thoughts on “A Ketamine & Lignocaine Infusion for CRPS Saves the Day

    1. Lori Joksch

      Hello I have followed your Story and amazing writing for a while. Have commented before. I am also a Full Body RSD. I started this journey 5 years ago. Tried everything. 2 SCSs. Lots of meds. Doing Ketamine high dose. Nov 10day and last week 5 day. It’s been so hard on my body. Except when on Ketamine I hurt badly everyday. I have not understand the word flare as some say I started to flare today. Mine always the same pain smaller in the morning and much worse as day goes on. 10 day ketamine took me out of wheelchair to walk into and out of a small building. That was very good. Depend on everyone to drive me because pain and all meds. Trying now to decrease opiates. Dr says need to go off but I can’t do the pain anymore. Also get very very sick from Ketamine. Love less pain but can’t get so sick anymore. What for sure helps is good long sleep and not doing too much. I am not really good about knowing what is too much. I was a very hard working nurse and mom of 4 boys. Trying to limit all activities for now as I understand ketamine will work better and longer if I am very careful for two weeks. I truly appreciate your writing. Saying many things I feel. I wish to support all your work. You do help to make a difference. Hang in there! God Bless :)!

      1. Hayley Cafarella Post author

        Hi Lori, thanks so much for sharing your experience! It’s so hard to know when we’re doing too much, especially when feeling better after a long period of feeling extra awful. I get so tired of trying to figure it out, I’m just not sure how to know what is too much when the limits are changing all the time. Managing this monster takes constant learning. Thanks so much for your kind words and for sharing this journey with me :)

    2. Lynne

      i have had crps for 20 years along with Fibromyalgua , Chronic Fatigue and sleep apnea. I had my first infusion last Nivember and experience and experienced my first psi. Free experience in 20 years. It was awesome. I am anxiously awaiting my next infusion. I understand how excited you were to get it done. Some patients are given Ativan and versed to help with side effects such as nausea and hallucinations. Hope it continues to work for you.

      1. Hayley Cafarella Post author

        Hi Lynne, thanks so much for sharing your experience! I’m am so glad to hear that you’re having success with ketamine infusions! They do give me some anti-nausea pills and relaxants during the infusions, sometimes even extra painkillers if it’s a longer infusion and I start to flare up during it. It’s wonderful to be able to have a little break from the pain, even though the effects have not lasted long after the last couple. Summer and humidity are just too powerful for ketamine to beat them in my body! Wishing you all the best for the next infusion! :)

    3. louise carbonneau vermeiren

      Hello Caf,
      I have been receiving lidocaine infusion for over 3 years. I also take ketamine pills, 5mg for two years. This is part of my health plan. It has allowed me to swim, bicycle, etc. I encourage you to stay with it and to find the right combination for you. Wishing you painless days.

      1. Hayley Cafarella Post author

        Hi Louise, thanks for sharing the treatment that has been helping you! I will ask my doctor about whether or not I can access ketamine in pills as my last few infusions have worn off quickly and I’m wondering whether continuing to take a small amount after the infusions would be helpful. The breaks in pain are nice, but it’d be even nicer if I could keep functioning for more than a couple of weeks. Thanks so much for your support, I’m so happy to hear about your success! :)

    4. Jasmine

      Hi Hayley,
      I have chronic widespread pain and I’m considering going down the Ketamine path. I live in Melbourne and I’m looking for a good pain specialist. I was wondering if you could pass on the details of yours to me if possible?

      Thanks,

      Jasmine

    5. Beatriz Robles

      Hi Haylley
      It’s been awhile since I wrote you. My CRPS has been so much bad since I tried whatever doctors way recognized by their professions.
      I really eould like to have your doctors name and if posible his email. I would like my doctor ask him what and how is working with ketamine and the other substance. Right now I’m at the hospital first getting the neuroestimulator out of my body and second having a radiofrecuency expecting it will help.
      Sending my love from Mexico you are invited whenever you want and can. Weather down here will help you a lot.

    6. Dr Ghulam Nabi Memon

      Dear all, Thanks for sharing their stories. I am consultant anaesthetist, recently I received a patient with severe pain after trauma. which is not responding to conventional analgesic and sever in nature, I diagnosed him as CRPS I tried ketamine infusion on him after studying literature. today is fourth day to his high dose infusion, his pain is relieved by 100% with ketamine infusions, we referred him to pain clinic, unfortunately waiting for bed.

      I will all the best to patients who suffer the pain of CRPS

      REGARDS

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