chronic illness · chronic pain · crps · ketamine

my first ketamine infusion for crps

Hey friends and loved ones!

As promised I am writing all about my first inpatient ketamine infusion in hopes of helping anyone who is interested in getting one along with continually educating people about CRPS and chronic pain.

Its a long one guys so buckle up!

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I wanted to begin by giving a clear picture of how much my CRPS limits me so here is a small video showing the various ways I am am impacted mobility wise. You can also very clearly see how red, stiff, and swollen my left leg and foot are. My pain is always between a 7-9.5 daily  (I never say 10 as someone explained to me that 10 means you are passing out from pain) and I use a wheelchair 90% of the day. This video is important as you can compare how I usually am to the progress I was able to make on the ketamine (video is further down!).

Ketamine is basically my last resort as I have tried NUMEROUS treatments over the years and found no relief and unfortunately had the disease still spread up my leg, into my left hip and into parts of my right foot. (If you are new to my blog/story you can read more here)

DAY ONE:

I woke up so nervous and decided that I would wear something silly to make me laugh and take some of the pressure off the situation. So I did what any 32 year old would do and wore my Totoro onesie to the hospital…it ended up being a big hit!

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Once I got to my room they did an EKG to make sure my heart was good to go and then got my IV ready (I was horribly dehydrated from being nauseous all weekend and it took 20 minutes to get the IV in).

PT is a large part of the UVA ketamine program so before we started the PT dudes stopped by to do their assessment and see where my “baseline” was in terms of what I am no longer able to do and what my foot/leg look normally. They said that I am very textbook CRPS and that the main goal would be to get more mobility, decrease allodynia (extreme sensitivity) and become more able to tolerate weight bearing since the way that I walk isn’t normal and puts A LOT of strain on my body bio-mechanically.

I would be doing PT twice a day while I was in the hospital but did PT stuff on my own a few times a day as well. A lot of PT stuff is all about tricking the brain and nervous system so that it will stop sending the pain signals. (All of these things are also done in PT without ketamine by the way.) I will go into more detail about PT and CRPS a little further down.

After my PT assessment it was go-time!

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I felt the ketamine kick in within seconds of them hooking me up.

It was very intense and the most high I probably have ever been in my life, I say this mainly to warn people if this is something that bothers you or “triggers” you to be prepared for your own infusion that this may happen to you as well. I asked the nurses if everyone feels it so strongly and they said some people feel nothing which seemed crazy to me. I had some anxiety about possible hallucinations and how I would feel on it but thankfully did not have a “bad trip” although I did think I was friends with some of the ladies on Real Housewives of Beverly Hills and because convinced they were coming to see me in the hospital (I know I know haha).

My dad was in the room with me when they hooked me up and laughed at me as I tried to explain how I felt and kept saying over and over “oh geez”.

This slowly wore off but would return as they upped my dose (they slowly titrate you up over a days time to make sure you can tolerate the dosage). It took me awhile to get used to it and sometimes I felt VERY dizzy and nauseous. They give you Ativan to help this and it really made a difference for me as the first night I sat leaning over a barf bag begging my body not to do it.

My pain stayed at 7-8 for most of the day but then something amazing happened that night. My best friend and husband came to visit me and while my best friend was talking I realized that my pain was WAY down. It was so unreal and I couldn’t believe it, I have not had my pain down to a 1-2 in a very very very very long time.

This gave me some real hope that maybe pain-free days were in my future.

DAY TWO:

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I was able to get up to the max dose the next morning around 6 am and once again saw I decrease in pain for moments in time. The PT guys were thrilled and we were able to get me walking a little more normally and bending my toes without my foot spasming. PT for CRPS is a little different than PT for things like a running injury or after surgery so I wanted to explain it in more detail.

CRPS is is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. For whatever reason after an injury, the brain and nervous system continue to send pain signals to an area (usually a limb) but do so LONG AFTER the injury has healed. This pain is very intense (it is ranked the one of the most painful disorders known to man) and things like wearing clothes, running a feather across the skin, or even a light breeze can create TONS of pain despite the fact that these are not normally painful situations. This intense pain then causes the person affected to not want to use the limb which creates more issues as the the brain/nervous system aren no longer getting proper “input” and the fear of doing those things becomes more and more “engrained”. CRPS also can cause swelling, temperature changes, and stiffness which again are exacerbated by the limb/body part not being used. As you can see it is a vicious cycle that can be hard to break.

The PT tools:

*Mirror therapy  involves me putting a mirror between my legs so my foot/leg that hurts are “hidden” and my right foot/leg reflection then” looks like” my actual left leg. I then move my right foot in ways that would hurt if it was my left leg but I only look at my “fake” left leg while doing these. The idea behind it is that my brain thinks the mirror reflection is my actual leg and my brain sees this foot/leg moving normally and without pain thus showing my nervous system it doesn’t need to continually send these crazy sensations anymore. It also tricks my brain to become less “scared” of my foot/leg doing things that would normally cause me pain.

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Graded Motor Imagery : “Research shows people in pain often lose the ability to identify left or right images of their painful body part(s) (i.e. when viewing pictures of body parts they are slower and/or less accurate than somebody without pain at determining whether the image is a Left or Right). This ability appears to be important for normal recovery from pain. The good news is that the brain is plastic and changeable, if given the right training for long enough. So with the appropriate tools, a bit of work, patience and persistence, it is possible to improve the ability (speed and accuracy) to discriminate between Left and Right body parts and movements.”  {source}

The main way that I work on this  is a super awesome app called Recognise that has a number of “tools” that get your brain figuring left from right. There’s flashcards, memory games, and pictures of left feet and right feet that you have to quickly choose. It was pretty crazy when I first got the app a few years ago and I was SO slow in figuring out a left foot vs a right foot. I am now really fast at figuring it out 🙂 You can then take it a step further by doing explicit motor imagery were you imagine your body doing things like walking, running, and other activities you cannot do.

*Weight-bearing: I obviously want to be able to walk again and not use my wheelchair. Thus when my pain is down I need to practice small movements that get my foot/leg ready to tolerate my body weight. We mainly had me sit with my feet on the floor and then lift my heels up as I couldn’t tolerate standing on my left feet yet. This REALLY flared me up however so we decided to not worry about that while I was in the hospital since the goal isn’t to push your body so far that you can’t tolerate doing any PT at all.

*Desensitization :  ” involves application of “unpleasant” stimuli to the hypersensitive area. These stimuli are the one that the body is routinely exposed to and do not elicit a painful response when presented to non-affected areas of the body, thus they are not harmful or damaging. The items used for desensitization vary, depending on what the affected area interprets as painful. Stimuli may consist of different textures/fabrics, light or deep pressure, vibration, tapping, heat or cold.” {source

One of the hardest things for me is doing desensitization. It HURTS and I have become very avoidant in doing anything that involves touching my foot/leg. Due to how freaking sensitize these areas are, we start off slowwwwwwly. I was given this very soft sponge to rub on the areas when my pain was down. Unfortunately this was something I really struggled with.

It set my pain off very quickly.

We discontinued doing it after my 2nd day because once I did it it was difficult to get my pain back down. As you can see I was able to do it some which was pretty cool. I will work on this at a later date along with weight bearing.

Day two was a really amazing day.

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I felt incredibly happy to have some pain relief.

I also had the honor of having some of my writing featured on The Mighty. This was so special to me and to have it happen during this process made it even more so. Honestly it was one of the nicest days of my life and while I’m sure the ketamine may have made me more happy, it was still a great day filled with happy stuff. I even felt well enough to have Sean lay in bed with me and “cuddle”, sadly this is something we rarely are able to do and I miss it.

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I love you my brave and handsome human.

DAY THREE – SIX:

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Things were very up and down the next few days.

My pain would sometimes rise up to a 7-8 but then would also settle back down into lower numbers. There was no real consistency with how it ebbed and flowed which is typical for me but doing some PT stuff definitely would flare me back up.

Sometimes I could tolerate doing all of my PT but as the week went by it became harder for me to do desensitization along with the weight bearing exercises.

When my pain was down I did work on bending my toes, circle my ankles and even was able to rub lotion on my foot very lightly one night which was unreal. I couldn’t tell you the last time I touched my foot like that. I also made myself walk even if it was my “weird heel walk” to the bathroom as much as I could, I do this at home even if it means I am crawling because I am so afraid of losing muscle mass in my legs.

ACHIEVEMENTS WHILE ON KETAMINE:

All of these things are things I have been unable to do with my CRPS.

It’s funny, I overall don’t enjoy how ketamine makes me feel (I am now using a daily nasal spray with ketamine and it just makes me feel weird/dizzy/nauseous). I did however have some very spiritual moments in the hospital. I don’t know if it was the drug (as the infusion did make me feel “happy”/good at times) or also the experience of finally feeling some very real tangible relief.

Maybe some of both.

At times I asked to be left alone and just sat in my body both in pain and when the pain subsided.  I felt stronger than I have in a long time. I also felt these very wonderful tinges of hope.

Things since early December have been so challenging and so defeating. Getting off a lot of my pain meds to prepare for the ketamine only added to the struggles I was going through. I think in some ways maybe it was best for me to go into the ketamine in such bad physical shape between the intense 24/7 chronic pain and the continual nausea and vomiting from my gastroparesis.

Maybe it sometimes is best to go into a new treatment when you are down on you knees stripped of almost all hope.

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Apparently I can feel very creative on ketamine which was fun as it gave me something to do besides trying to discern what was happening on the tv and PT. I tried to take a fair amount of photos both to document this process for you guys but also to make sure I remembered it as ketamine can make people not remember parts of their hospital stay.

 

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my wonderful parents who have supported me through this entire journey to get my health back

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Some friends came to visit…
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Some family came too

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Thank you to Anne, Pat, Jackson, Kristin and John who came to spend time with me <3 A HUGE thank you to my BFF Amber who made dinner for my husband, visited me several times, and also helped take care of the dogs. I love you bb.

It truly was a transformative experience on so many levels. I would recommend it to anyone with CRPS. I would especially recommend UVA. They truly went above and beyond for me. I was so impressed with the entire staff. I felt very cared for and that my health mattered, almost everyone knew that I used to be a runner which means they all had read my medical chart. One of the nurses even  allowed me to put these signs all over to make sure no one accidentally touched my legs 🙂

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Next blog I will share about what has happened since my infusion.

Lovelovelove to you all.

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2 thoughts on “my first ketamine infusion for crps

  1. Wow! So much! So glad to know that you are getting some relief, and the information about the different therapies is amazing. Thank you for sharing your journey Gen.

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