chronic illness · chronic pain · crps · ketamine

K is for ketamine: all about ketamine and CRPS/ chronic pain management

K is for ketamine: all about ketamine and CRPS/Chronic Pain Management

Hello there!

I wanted to start off this post by extending a warm welcome to anyone who may be new to my blog as I am assuming that this post about “ketamine for CRPS and other chronic pain conditions” may pull in new readers who are curious and/or desperate for relief from chronic pain.

ketamine, ketamine infusion, crps, ketamine for crps, chronic pain, ketamine for pain, rsd, lyme disease

So before I say anything else, let me first say to you that I am so sorry that you are suffering and I hope that this post may help you learn more about ketamine and it’s current use in pain management.

A little about me:

My name is Genevieve and for the past 5 years I have been dealing 24/7 debilitating chronic pain from Complex Regional Pain Syndrome (CRPS) and Small Fiber Neuropathy from Late Stage Lyme Disease and Bartonella. I live in central Virginia and get all of my treatments through the University of Virginia Hospital.

ketamine, ketamine infusion, crps, ketamine for crps, chronic pain, ketamine for pain, rsd, lyme disease
this is me on my first day of my VERY first ketamine infusion-march 31, 2016

Complex Regional Pain Syndrome aka CRPS is one of the most painful neurological conditions known to man (you can read more about it here).  There is no cure at this moment in time and remission is very hard to achieve once you are past the 6 month mark. (CRPS is also known as RSD -Reflex Sympathetic Dystrophy)

My CRPS started in my left foot after trying to change my running style in September 2011. Since then it has spread from my left foot up to my knee (May 2015), into parts of my right foot (June 2015), then into my entire left leg up to my hip bone (Nov 2015) ,into my entire left arm and hand (Nov 2016) and right bicep (Dec 2016).

The pain became so severe I lost the ability to walk, work, and drive in February 2015, I became fully wheelchair dependent in April 2015.

ketamine, ketamine infusion, crps, ketamine for crps, chronic pain, ketamine for pain, rsd, lyme disease
photo by jewel peach

The Small Fiber Neuropathy, Late Stage Lyme Disease, and Bartonella ALL exacerbated my CRPS symptoms so I am often dealing with multiple kinds of pain at once. After continually getting worse and worse  despite trying several different treatments,  my drs and I agreed that it was time for me to give inpatient ketamine infusions a try to see if they could help give me substantial relief as well as help me begin to relearn how to walk and function normally.

I have done 4 ketamine infusions in 2016 and it has been the most beneficial treatment I have done since getting sick 5 years ago. Thanks to ketamine infusions  I have begun to relearn how to walk, drive, wear different shoes/clothing, and take less pain meds. Ketamine works in two ways for me: it gives me relief while I am in the hospital AND then several weeks after the infusions I hit what I call “the sweet spot” where I start to see “results” in terms of lower pain, more mobility, and the ability to push harder in PT.

Ketamine is NOT a cure and I have had a major CRPS spread since starting ketamine…but its been incredibly helpful over all.

So now that you know a little bit more about me and my story, let’s talk about what ketamine is.

ketamine, ketamine infusion, crps, ketamine for crps, chronic pain, ketamine for pain, rsd, lyme disease

What is ketamine?

Ketamine is a dissociative anesthetic as well as a hallucinogen. Medically ketamine has been used since the 1960’s to put patients to sleep for surgery as well as to prevent pain and discomfort during certain medical tests or procedures. It has become popular in recent years for its beneficial use with certain types of neuropathic pain, migraines, and depression due its ability to block NDMA receptors. It is also known as a “horse tranquilizer” due to its use within veterinarian medicine. Ketamine is also called”special k”, a known street drug that people use for its hallucinogenic properties. I will be mainly focusing on ketamine and it’s use for chronic pain since that has been my only experience with it.

How does ketamine affect chronic pain?

Ketamine is a NMDA receptor antagonist which means that ketamine binds and blocks certain receptors in our brain which then decreases pain. “By blocking NMDA glutamate receptors, ketamine minimizes acute pain and decreases the wind-up pain caused by continual bombardment of the central nervous system. Wind-up amplifies incoming pain signals at the level of second-degree neurons in the spinal cord.”(source) For conditions like CRPS, ketamine is especially helpful since our brains are caught in a feedback loop. Ketamine infusions and comas work to “re-route” that loop not only decreasing the current chronic pain the paitent has BUT also working to slow down and hopefully completely re-write the CRPS feedback loop. “Ketamine’s ability to reduce acute pain and short-circuit the development of chronic pain pathways makes it effective in any perioperative situation or trauma and can reduce post-operative and phantom-limb pain.” (source)

For which conditions is ketamine found to be helpful?

Ketamine has been found helpful for neuropathic pain conditions like CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy), Phantom Limb Syndrome, Post-Herpatic Neuralgia, Small Fiber Neuropathy, Fibromyalgia as well as Migraines and Depression. You can find studies and more articles at the bottom of this page about how Ketamine affects different conditions.

Different ways to take ketamine:

There’s MANY different ways to use ketamine! I have found that ketamine infusions work best for me but for whatever reason, ketamine isn’t something that works as well for me in other forms. That being said I have tried using ketamine a few different ways and I think its important to see how your body responds to as many forms of ketamine as you can try! Just because taking it one way isn’t very helpful doesn’t mean ketamine may not help you in a different form.

**ALL of these options are compounded by a pharmacy and require a dr’s prescription, you cannot buy ketamine over the counter**

These are the main ways Ketamine is being offered outside of infusions:

-ketamine internasal spray: 

The nasal spray is something you use a few times a day, it works similarly to pain meds in terms of taking it around the clock can help decrease flare ups. You can also JUST use it for flare ups. This was the first way I ever used ketamine. I found that using it 3x a day gave me migraines and the nasal spray drip REALLY affects my nausea. I don’t use it very much unless I hurt myself and then I will use the spray to try and calm my body down if I have hurt myself by accident. The ketamine spray affects me almost immediately in terms of “feeling” the ketamine.

-ketamine oral troches

You hold these under your tongue until ketamine is dissolved. Ketamine doesn’t work well when you take it orally so this is the best way to take it by mouth since you are by passing the ketamine being digested by your stomach. The taste isn’t terrible but it is bitter. I found that it started to kick in pretty quickly. I didn’t find any relief with the troches unfortunately.

-ketamine compound creams

These cremes are compounded by a pharmacy and usually contain many different medications like Neurontin, Baclofen, and Lidocaine. There’s usually some DMSO in the lotion which allows the ketamine to penetrate deeper into the skin.

What’s the difference between outpatient ketamine infusions, inpatient ketamine infusions, & ketamine comas: 

So there’s three types of ketamine infusions currently being offered but only two are legal within the United States. Ketamine comas are illegal here in the US and currently only offered in a few countries like Mexico and Germany. (I currently get inpatient ketamine infusions-mine are usually 5-6 days long)

-outpatient aka OP ketamine infusions: These infusions are done at a dr’s office or a ketamine clinic. You are only there for the day, generally for one hour to 8 hours. You are checked on by a nurse through your infusion and your dr may check in on you as well. Some people just go in for the day, some people will go each day for a week. I’ve heard of some drs having people do an OP infusion for 10 days back to back. Different dr’s use different protocols with outpatient infusions, some do nerve blocks as well. **Your insurance may cover these infusions but its important to talk about payment ahead of time with your dr since ketamine infusions aren’t being covered by all insurance companies.

-inpatient aka IP ketamine infusions: IP infusions are usually done within a hospital. You will be admitted for 2-7 days and have an infusion of ketamine going the entire time.  The benefit to this is that you are getting a much larger dose of ketamine than what you would receive during an OP ketamine infusion. For people with really severe neuropathic pain, it can be better to hit your brain with larger amounts of ketamine. I get IP infusions, I am generally in the hospital for 5-6 days.  **Your insurance may cover IP infusions but its important to talk about payment ahead of time with your dr since ketamine infusions aren’t being covered by all insurance companies.

-ketamine coma: As I said above, ketamine comas are currently illegal in the US. During a ketamine coma, you are put literally into a comatose state and then have VERY high doses of ketamine run through you for several days. These infusions are much more risky but for those with VERY severe CRPS, doing the highest dose of ketamine combined with a comatose state can work together to “reset” the nervous system. This is not covered by insurance and VERY expensive. For some the risk is worth it and I have read of some people with very severe CRPS finding significant relief with ketamine comas.

Does insurance cover ketamine infusions?

This is a big question that I get a lot and the answer is YES! 

Some insurance companies ARE  beginning to cover ketamine infusions even though they are still considered “experimental”. I have Anthem Blue Cross Blue Shielf and so far have had 4 ketamine infusions through University of Virginia Hospital. All of my infusions thus far has been mostly covered by insurace (thank you universe). Some ketamine clinics do not take insurance so its REALLY important to talk about insurance with your dr so you go into the infusions understanding what you will be expected to cover. (I don’t know what insurances are currently covering ketamine so Im afraid I will not be able to answer any questions about that) My insurance DOES NOT cover other things like nasal ketamine and compound cream, I have to pay for those items out of pocket.

What does ketamine feel like?

When I do ketamine infusions, I generally feel REALLY high but not super out of it. I can also feel a little dizzy, a little groggy/weird, and very emotional. I struggle with chronic nausea day to day and ketamine definitely exacerbates my nausea. I have found that my treatment team has to slowlyyyyy titrate my ketamine, it generally takes me about a full day to get up to the therapeutic dosage and sometimes takes two days. Right now I get .6 milligrams per kilogram per hour during my infusions, (ketamine dosages are all based on weight).

The best part of ketamine for me is the relief, NOTHING else has given me the kind of relief ketamine has given me. I don’t always have consistent “pain at a zero” relief with the ketamine but in the past 4 infusions I have done, I am ALWAYS in less pain than I would be at home even if I do occasionally have some breakthrough pain in the hospital. Some infusions have been more successful than others in terms of the relief that I get while I am in the hospital.

I actually had THREE DAYS of no pain with my 3rd infusion.

Its hard to explain how amazing it was to go from my usual day to day pain where Im in a wheelchair 60% of the day and use a walker to walk properly…to this:

During this infusion I walked without ANY mobility devices,  did standing yoga, showered without a shower chair, AND massaged my leg and foot. ALL things I couldn’t do normally.

I have had some hallucinations with ketamine but nothing too crazy. In the hospital they will give you a shot of Ativan if you start to feel anxious or having any weird hallucinations. You do not feel high once you are unhooked from the ketamine. I do experience a post-ketamine flare up, you can find more about that in this post farther down.

Ketamine affects everyone differently, Ive been told that some people don’t feel ANYTHING when they take ketamine so how YOU respond to ketamine may be different.

Side effects of ketamine?

Vivid dreams or nightmares

Hallucinations

Anxiety/panic attacks

Nausea/vomiting

Loss of appetite

Abdominal pain

Drowsiness

Elevated liver enzymes/liver damage

Headache

High blood pressure

Swelling of the cornea of the eye

Irregular heartbeat

Slowed breathing

Dizziness

Fainting

Difficulty urinating (source)

For me personally I generally always have increased nausea/vomiting, loss of appetite, some dizziness, some hallucinations, and occasionally difficulty urinating/bladder pain. Ive also developed gastritis twice after doing a 6 day ketamine infusion. Thankfully none of these side effects besides the gastritis last beyond the actual infusion and the benefit of the ketamine FAR outweighs any side effects.

How do you feel AFTER ketamine infusions?

This is something I REALLY wanted to focus on because post-ketamine infusion flareups/rebound pain is something that I experience with EVERY infusion.

I see post ketamine flare ups being talked about on ketamine groups and it is in some literature but… some drs seem to be clueless about it. Some lucky people do one IP infusion and go into remission. Some people have to get booster infusions (like me). MANY of us do experience some flare up of symptoms after the infusion, even if the infusion was successful in giving you relief. I think its important to talk about because I had NO idea and my dr didn’t tell me it was a possiblity so you can imagine how devastated I was when I had a GREAT first ketamine infusion  and then came home and had a HUGE flare up. I thought that ketamine wasn’t “right for me” and was absolutely crushed until some people in a ketamine group ASSURED me it was normal. Sure enough after 9 days of flaring things started to calm down and I then started to notice that my pain was lower and my feet and leg weren’t bright purple.

Soooo please go into your infusions aware that you may have some rebound pain BUT that doesn’t mean the ketamine didn’t work. I think the rebound pain happens for a few different reasons. UVA has you do PT and OT once/twice a day during your infusions and because you are in less pain you may do more physically than your body is used to doing. You also may cut down on your pain meds while you are doing the infusion because you are in less pain and that can be stressful for your nervous system and cause some rebound pain. Ketamine infusions are pretty intense so it makes sense that your body may throw a temper tantrum once it is hit with this HEAVY DUTY chemical for several days and then it’s removed.

Go into your infusions with some understanding that you may get flared up after. Its ok! Just hang tight, do what you know helps support your body during a flare up and don’t decide the ketamine didn’t work without waiting to see if you are just in a bit of a post-ketamine rebound flareup. Its totally normal!

How long does ketamine last?

Just like ketamine can vary in how it makes you feel, it can also vary in how long it lasts for you. I find that after 4 months I start to have my pain get higher and using my CRPS limbs gets a bit more difficult. Whats AWESOME is that even when the infusion starts to “wear off”, I NEVER have gone back to how I was before ketamine SO I have experienced some permanent changes it seems.

Before I started ketamine, my pain was at a 7-9.5 every day and I was on 125 mcg Fentanyl patch AND also would take 2-3 doses of immediate release pain meds as well for breakthrough pain. I couldn’t shave my leg, couldn’t wear leggings, sock, underwear, couldn’t walk normally at all and was in REALLY BAD SHAPE.
This is me 2 weeks after my first ketamine infusion, you can see a BIG difference in my walking even though I am still not walking normally.

Since starting ketamine I have gotten off Fentanyl patches completely, only take one to two doses of immediate release opiates for my breakthrough pain (this is HUGE for me), and have been able to do almost 9 months of aggressive PT to relearn how to walk. I can now shave my legs (usually still have to take pain meds to shave) and I can now wear underwear, I am currently working on wearing leggings, tight pants, and socks.

This me practicing my walking a few weeks after my 3rd ketamine infusion October 29, 2016 (I should be using a walker but I was being lazy- I want to add, I CANNOT walk this very often)

I have to be honest, I still am in a good bit of pain and I am still in my wheelchair 50% of the day most days. When I do walk its not very far, I still have to do a lot of work to build my strength and endurance with walking. I have a LONG way to go before I will ever walk completely normal without any mobility device or able to tolerate wearing leggings or socks for more than 10 minutes

BUT

this is the most progress I have ever made since becoming sick.  Besides becoming more mobile doing ketamine infusions also has REALLY affected the color and swelling of my CRPS places.

ketamine, ketamine infusion, crps, ketamine for crps, chronic pain, ketamine for pain, rsd, lyme disease
CRPS- before ketamine and after ketamine

Where can I get ketamine infusions?

Ketamine is being offered more and more places so there may be a dr or ketamine clinic in your state! I definitely would suggest joining this Fb Group “SCS Ketamine Nerve Blocks, Oh My” its been a GODSEND for me AND there’s tons of great resources including lists of what drs are currently offering ketamine. You can find these in the “files” part of the group.

 Ketamine Advocacy Network also has a list of ketamine providers (I noticed they don’t include UVA so it is not a FULL List)

This is another list by RSDSA

***

ketamine, ketamine infusion, crps, ketamine for crps, chronic pain, ketamine for pain, rsd, lyme disease
during my 2nd ketamine infusion

Ketamine has been SUCH a huge game changer. I have tried SO many things and really was losing hope by the time I FINALLY got to try ketamine March 2016. It isn’t a cure and it doesn’t prevent CRPS spreads (I have had a BIG CRPS spread to my entire left arm and hand November 2016) but its helped more than ANYTHING else I have trued.

You can read about ALL of my ketamine infusions here

If there’s a question I haven’t answered, let me know! I hope this post helps answers any questions you may have as well as explain what ketamine infusions are like from a paitent perspective. Ketamine has been such a game changer and I hope that it may help you too!!!

Ketamine & CRPS/chronic pain:

Ketamine for Chronic Pain

Ketamine: Reinventing Chronic Pain Management

Multi-day low dose ketamine infusion for the treatment of complex regional pain syndrome

Outpatient intravenous ketamine for the treatment of complex regional pain syndrome

Multi-day low dose ketamine infusion as adjuvant to oral gabapentin in spinal cord injury related chronic pain

Ketamine Resets System for Normal Pain Processing in Complex Syndrome Patients
A Systematic Review of Ketamine for Complex Regional Pain Syndrome

Ketamine Treatment for Intractable Pain in a Patient with Severe Refractory Complex Regional Pain Syndrome: A Case Report

Special K is Tough on Pain

Ketamine & Fibromyalgia:

Intravenous Ketamine Produces Long-Term Pain Relief in a Patient with Fibromyalgia

IV Ketamine for Fibromyalgia 

Treating Fibro with Ketamine

A reconsideration of the relevance of systemic low-dose ketamine to the pathophysiology of fibromyalgia

Ketamine & depression:

Ketamine: the Future of Depression Treatment?

Rapid Antidepressant Effects of Ketamine in Major Depression

Fighting Depression: Ketamine Metabolite May Offer Benefits Without the Risks

Onetime party drug hailed as miracle for treating severe depression

3 thoughts on “K is for ketamine: all about ketamine and CRPS/ chronic pain management

  1. I’ve got the RSD version of CRPS, at a much more mild state than yours, but it’s not going away (going on twenty years now) so I am on the lookout for treatments, always. Right now my ‘next move’ after a couple more increases in drug dosages is a spinal implant. Since the RSD was caused (in my opinion) by an implant (pins and plate to fix a fracture), it filled me with dread and I was calling it ‘the nuclear option’.

    Thank you, thank you, for this information. Even if I never need it, I feel like I can breathe easier, just having another option.

    Love and non-hurty, not creepy internet hugs. <3

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