IamA 21-year-old with fibromyalgia and underwent ketamine infusions for chronic pain. AMA!

What made your experience so traumatic?

I went in with no expectations. It was traumatic because I was forced to feel every extreme emotion with no control over my body, and it was exhausting. I would talk slower and be dopey and weak; I could barely speak for myself.

I also had the experience of a drug addict, where I craved the high of the ketamine even though I was fully aware that it was an artificially induced addiction. That’s a really scary feeling. It’s like being a lab rat and having someone control your body. I would also dread the huge depressive periods which was most of the time, and even though I’d be aware that it’s ketamine-induced, it still felt horrible.

I had crippling hallucinations as well where the room would actually shake and spin, and I could hear the sound of laundry machines. I thought I was drowning.

It was like battling my own emotions for days and days non stop. At one point, I even thought I had died. My body became so weak and I was sick of fighting the ups and downs.

A girl in the room next to me a nurse told me she was 16, and the hallucinations were so much she couldn’t take it and left on day two. That was heartbreaking.

How long were you on a ketamine infusion for? Most protocols I've heard of in the States are outpatient procedures measured in hours, not days.

Do you remember much about the dosing protocol?

I was on it for 7 days. It varied between 3-4mg/hour at the start but I wasn’t feeling any pain relief so it eventually got increased to the maximum for a first timer — 15mg/hour, 24/7.

It would probably explain the increase in side effects although my doctor has said severe side effects aren’t common for inpatient ketamine procedures

You had existing, severe, negative views on drugs that you view as illegal. Those judgments taint your experience.

That’s an interesting way of putting it. I think yes I was opposed to taking illegal drugs but I was aware that the fact a drug is illegal doesn’t mean it can’t be beneficial for medical purposes. I went into these infusions with as open a mind of possible. But yes you’ve made a fair point.

Generally, I don’t take illegal drugs simply because I don’t like uncertainty. But I have friends who do and I don’t judge them for it, and I’m 100% for legalisation

Interesting, I had Ketamine for electroshock therapy, so I was always unconscious and never experienced the waking high. Did that stuff burn like fire in your veins too? Pretty painful honestly, and quite the experience to be under that drug AND wake up from a seizure.

Thank god I didn’t have seizures, I can’t imagine what you went through! Yes, it burnt and it sort of felt like a heat rush in my veins. I honestly wish I’d been unconscious considering how scary it was :(

So help me out. I know nothing about the disease or ketamine other than some people call it special K and use it as a party drug.

So what was the hopeful outcome that ketamine would cure the bad pain associated with the disease permanently? It would be used as a drug to treat the symptoms?

What I was told is that ketamine could effectively reset my pain receptors so I wouldn’t have constant pain signals being sent to my brain. It also has shown promising signs of regenerating neurons that regulate emotions.

I was in a similar boat to you and only really knew about Special K as a party drug, albeit not a popular one in Australia.

The hopeful outcome would be either a reduction in pain or an increase in my receptiveness to other pain treatments — I’ve had a lot of other medications before including opioids which have zero effect on me.

The best possible scenario I was told by my doctor is to have virtually no pain and have it long lasting enough to only need a mild touch up every few months. It’s simultaneously meant to be a cure for some conditions and a treatment for symptoms.

As for fibromyalgia, think of it like this. A normal person only feels pain when something is wrong, right? For a person with fibromyalgia you can feel pain from anything and everything. That’s the easiest way to describe it, like an alarm system going off.

Hi. I have some autistic traits so I’m interested that you mentioned this treatment transformed your own autism. Can you elaborate on that - what were those autistic traits/symptoms like for you before, and what are they like now? Do you think it made it worse/better or just different? Thank you for sharing.

I’m female with autism so bear in mind I might not come off with severe symptoms/traits. I have always had excellent social skills but had huge trouble with my emotional regulation — small things would make me extremely anxious and sad. I wouldn’t be able to rationalise my emotions and see whether my feelings are reasonable or not.

For example, I would get insecure over an offhand comment from a friend and spiral. Now I can reason with myself more easily. I would feel scared of burdening people with my feelings. That guilt is gone.

I used to be very anxious about confrontation, but I became a lot more empathetic after the infusion. I found out a lot of people I thought disliked me didn’t, they just had their own circumstances going on. I got the courage to mend a lot of relationships and set boundaries with people.

It’s a combination I think of the emotional autistic traits being improved, and the fact my depression has been virtually wiped makes it much easier to empathise with people.

I’m not sure if it’s approved as a treatment wherever you are, but I hope this helps.

I know someone who recently experimented with self-administered psilocybin to manage PTSD-based depression and anxiety, and undiagnosed but strongly suspected mild autism, with great success. There's promising research being done in the USA with MDMA in helping manage or even correct various mental health issues, which again anecdotally I can add some weight to.

Have you tried any kind of cannabis therapy? Cannabinoids and their effect on chronic pain is well-documented, and can also help mitigate the debilitating side effects of other medication.

When I was younger and more reckless/foolish I experimented with Ketamine recreationally a couple of times. I found the whole experience utterly dreadful and vowed to never repeat.

I am not condoning or recommending using illegal drugs illegally, I'm just saying there is information available that might be of interest to you. Australia has at least a rudimentary medical marijuana programme, might be worth talking to your GP?

However you do it, I wish you the best of luck. Good health!

I appreciate your good intentions, however, I have tried CBD before in various forms. I’m actively subscribed to r/CBD and 1) it’s only approved for epilepsy in Australia 2) it had no effect on my chronic pain, only a mild anxiety effect. I’ve even tried CBG, full spectrum, broad spectrum you name it — no effect.

In all honesty, after my experience with ketamine I’m a bit scarred off the idea of any illegal drugs. I’m even scared to take paracetamol because of the trauma.

I have seen MDMA clinical trials and before the ketamine I considered signing up to a bunch of clinical trials as well. Typically the criteria are very strict for those kinds of trials so I was rejected from a lot and gave up after a while.

I actually applied for a clinical trial to use ketamine for the treatment of depression and I was rejected on the basis my depression was not severe enough. At the time I was disappointed, but I’m starting to see why the threshold was so high for ketamine.

I feel as though you should know that ketamine is an NMDA receptor antagonist, this slows down neural signals from the rest of your body to your brain - leading to disconnection and dissociation. Only NMDA receptor antagonists do this and most drugs are not NMDA receptors antagonists. Many people who try ketamine do not like it and most drugs are not as "intense" feeling and disorienting as ketamine is. I will not tell you to try illegal drugs but I will advise that you don't use your ketamine experience as a reason not to.

The brain is complex and a drug that doesn't impact the sites that ketamine does will feel 0% similar. As in it is an entirely different feeling, experience etc. It's not that other drugs will feel like ketamine but different, there's literally no overlap in what you feel because the part of your brain being affected by ketamine is not affected by the other drugs.

Comparing weed with ketamine is pretty similar to comparing caffeine to ketamine. Obviously weed is a more intense drug than caffeine but it has about as much in common with ketamine as caffeine does

Thank you, and no I’m not going to be advocating against illegal drugs! I am just personally very uncomfortable with the idea of any kind of drug at the moment as I’m still going through a lot of trauma — I’m even afraid of coffee.

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No, I haven’t. I just took a look and feel kind of sick :( that’s so awful

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Your daughter is admirable and so are you for being able to stay strong for her :) thank you for your sentiment. I am fighting a lot, live independently and it’s pretty hard. The past few weeks I’ve had to choose between hallucinating and being drugged — having no control over my body.

It’s a really scary experience because I was put on diazepam for the hallucinations, and they went on for long enough I started to develop tolerance. Now I’m back in hospital and have to fight both addictive urges and my side effects.

It did not occur to me how much difference mental health makes until I underwent the procedure. Depression and anxiety are crippling. I can now taste and smell better, see more colours, feel more empathy towards others now that the weight is gone.

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God, I can’t imagine what she went through. I have regular SSRI medication I take which is ok but because my doctor got forced to isolate for COVID-19, I had to be on benzodiazepines for seven days round the clock. The withdrawal is awful and I can’t believe I’m in hospital again over it

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Yeah I’ve seen that happen with a lot of chronic pain patients in the US. I’m not saying I’m enthused to be on benzos but it’s better than being treated like a junkie and forced to suffer at home :(

I’m grateful to be in a country that covered the bulk of my medical expenses, strong welfare because I couldn’t work these past few weeks, and a really efficient psychiatric system. I’ve heard horror stories of people going into debt in the US for going into hospitals

I have never taken illegal drugs and it was like being put into the body of a person addicted for years and years

So based on your complete inexperience with something, you identify with people who habitually abuse that thing?

No, I’m sorry I didn’t mean to come across as judgmental in my posts. I’m hazarding the best description I could come up with for the sheer scale of addictiveness I felt while on it, and the highs and lows. Sorry, I was struggling to come up with another way to describe it :(

Are you able to tell me what your pain feels like? Do you have chronically sore muscles to squeeze/touch?

Without going into too much context, I was going to be 'tested' for fibro, I was never able to complete the appointment with any rheumatologist because I have a TAC claim open.

I'd love to know what kind of or if any pain is felt particularly in your muscles. The only part of my body that isn't tight/sore all the time is the bottom of my feet.

I have pain all over my body, like aches. The worst part of my body is the area where my lower trapezius is (left shoulder blade) which is swollen, basically “numb” on the surface sensation, and constantly spasming. It’s excruciating.

Sorry to hear about your pains and the TAC claim delaying your appointment. Hopefully they can get you in soon for a proper diagnosis :)

Are you okay?

Thank you for checking up on me. I was discharged too early with nurses not noticing I had massive withdrawal symptoms. So my doctor prescribed diazepam over a 7 day period to see if my trauma would resolve enough I’d be able to sleep/function normally.

This resulted in me ending up back in another hospital — not for drug dependence, but I had started to build tolerance to diazepam and needed to be weaned off it.

Emotionally, it’s a rollercoaster. I’ve lost a lot of independence. Psychiatric hospitals are terrifying when you’re young and don’t know what to expect. Everyday it feels like I’m fighting between being controlled by drugs or suffering the fear of reliving my trauma again.

Did you find any way to combat your pain? Or mental techniques to manage it?

I think it’s easier to manage the pain in the sense the pain/depression cycle has been broken, at least temporarily. I have a new perspective on my life and all my relationships. So the fact I’m less depressed does mean I don’t feel as burdened by pain anymore, even if the physical sensation is still there.

I still do mindfulness regularly using Headspace the app, which is a small thing but has been really helpful for me. I see a psychologist every couple of weeks as well who practises CBT.

Holy shit.

They put you into a medically induced K hole essentially? I was interested in this treatment but now, not so much.

I mean, you’re not supposed to go through the k-hole, it’s more like an unintended side effect. My doctor has stipulated my experience was very one-of-a-kind and no one else he has seen had debilitating side effects while on a safe dose of ketamine.

Any idea about what happened to others on the study?

Hi, it was not a clinical trial. It cost about $2k AUD with my insurance covering 75% of it. From what my pain specialist told me, most of his patients got some relief from it but I have no clue how true that is unfortunately :(

I have no clue how true that is unfortunately

Why would your specialist lie? Would seem like an odd thing to do.

I've not read the studies on ketamine and fibromyalgia, but the studies on depression seem quite promising (especially the ones on treatment resistant depression).

True isn’t the best word to use perhaps. I guess he’s saying to the best of his knowledge, most of his patients find some pain relief. Because it’s such a new procedure in Australia it’s super hard to find lots of research into ketamine and chronic pain, hence why I stated I have no way of verifying its efficacy. Thanks for picking up on that :)

Have you ever explored the possibility of Lyme disease? I know Australia barely even recognizes that Lyme exists, but not only does it exist, but it's much more common than people (and doctors) realize. It took me seeing more than a dozen doctors, all of whom refused to even test me for it, before I got a diagnosis, and that was after spending $$$ for a Lyme specialist. Even if they did test me, the CDC approved test is only 50% accurate (by their own admission) and only 30% accurate according to a John's Hopkins study. So the test can be negative, and there's a better chance than not that you still have it. My doc did the same blood test with a different lab, and it lit up like a Christmas tree. A year of taking a shit ton of antibiotics and I went from bedridden to 100% well. My Lyme doc said he has never had someone diagnosed with fibromyalgia who didn't test positive for Lyme.

No I hadn’t considered that actually, thanks for your suggestion. I am still in recovery at this stage so will be exploring what my other options are once I’m feeling a bit better. I’m glad you had improvements though :)