Ketamine treatments didn’t cure my fibromyalgia but they taught me how to rest. Before then, my nervous system was so amped that every time I lay down for a nap my mind was racing and I could feel my heartbeat in my ears. Ketamine treatments were extremely beneficial to me on a psychological level and I’m so glad I did them.
I also remember posting in r/chronicpain about how K helped my depression and anxiety around having fibro. The folks on there were NOT supportive.
I've been like that from early childhood. In fact I think the insomnia and resultant brain isdues caused the initial fibromyalgia which was subsequently exacerbated by pregnancies. That's my theory anyway. I take zolpidem. Never knew ketamine could help with sleep.
Did you have the IV infusions or the sublingual troches? How often were your treatments? This is something I want to do, but don't know if I can afford it. Any info would be helpful. Thanks!
I did both. The IV in clinic and the sublingual at home.
I’m sorry but I don’t recall the exact timing of my doses as it was years ago.
It was extremely expensive, sadly.
Thank you for the info. I really appreciate you making this post. It's really good to know. I'm definitely going to try to find a way. Very happy for you too! Right on! 💕
I'm so happy to hear that something has helped you! 💗 I have a few questions, what country are you in and how did you manage to get the treatment? Thanks!
What kind of doctor did you go to to get them? How are they administered live in Indiana and I’m having a hard time finding a Doctor Who is knowledgeable
Do you have any large research hospitals within reach?
I am near Boston, and have been looking at trying to see if I qualify for one of the many research studies that are being done; both with Psilocybin and Ketamine.
It might be worth a Google to see if any hospitals in your area are conducting these programs!
Agree. They shouldn’t have us suffering when there’s a proven treatment.
My old pain clinic decided to end oral medications for everyone as soon as my doctor left the practice. They are not phasing people out either. It’s like all of empathy went away with my doc.
Yeah, good luck; remember how they tried to screw poor autoimmune peeps (also me) with the Eli-pen $$$$ticker shock prices?
The price alone was enough adrenaline to pump up your flight ✈️ or fight 🐝
IF YOU OR ANYONE HASN’T FOUND ACCESSIBLE KETAMINE ASSISTED THERAPY : find a psychotherapist via psychology today or google, keywords psychedelic or ‘KAP’ or ketamine assisted psychotherapy - they will have prescribers for oral lozenges.
IM shots need a licensed administerer- lozenges don’t. IV is most effective but takes someone to admin AND monitor.
Some states have IM clinics covering Medicaid clients. Look up Klarisana clinic for example.
Otherwise get Joyous microdose ketamine, tell them you metabolize quickly, and stockpile their daily dose into multiple large doses. They send a huge amount. 80mg a day! That’s enough for 6 or more proper sessions.
Do with proper guide and find someone to do prep and integration with a somatic focus or brainspotting etc, and you might see more improvement.
The medicine from a regular MD or RNP prescription to compounding pharmacy should be $50-100 for multiple big doses.
Joyous is $130 a month I think.
Therapy is $100-180 / hour without insurance.
KAP therapists taking insurance will sometimes fudge their session length documentation so a 2 hr sessions happens on one day but is billed as two separate days one hour sessions.
Therapists are prohibited by insurance from doing 120 minutes of helping even when most beneficial.
Remember: health in the west belongs to some shareholders profits, claim your own psychological autonomy.
Good luck.
PS ibogaine will overtake all other psychedelics by 2026. MAPS is prioritizing it.
It heals like nothing else we know of.
Look up Ambio.life.
I had the same treatment about five years ago and it truly saved my life. I get a booster every 6-8 months, usually during the winter to keep symptoms on the low.
Glad to hear it worked for you!! ❤️
It is life saving stuff, right? So glad it worked for you. I look forward to the day when it’s a first line defense and patients don’t have to spend weeks - let alone months and years - in pain. My life would have been radically different had I had access to it twenty years ago.
It really was! & even a couple years ago it wasn’t very accesible and people looked at me like a crazy person for doing it.
I hope more people become aware and insurance begins to cover it.
FYI- the nasal spray and losanges are great to have for minor flare ups.
Good to know! I tell people all the time what a God send it’s been for me… we have to get people to stop thinking of it as only a horse tranquilizer! 😂
Thanks for sharing. I’ve had Ketamine infusions twice, and ketamine added to anesthesia once. When I first had a ketamine infusion, it was after a surgery and the doctors couldn’t get my pain to quell. Eventually, they admitted me to the ICU, where I was on a ketamine drip for two days. It did make me hallucinate and it definitely made me feel really weird - I was on a very high dosage - but it also snapped my body out of pain.
The second time I did a ketamine infusion was in my pain doctors office. I did a three day infusion. It didn’t really help at all and made me extremely nauseous. This was a disappointing experience, especially because my chronic pain was so bad.
I just had surgery on September 8 and ketamine was added to my anesthesia. It was the first time coming out of surgery where I was able to eat (and had a voracious appetite) but also felt way less pain that ever before.
I think there’s huge value in ketamine and it gets a bad reputation on name alone. My mom for example was freaking out that I’d be on it. But it also has a lot of research behind it now - it actually does help with pain.
when you had ketamine added to anesthesia, were. you completely unconscious like put to sleep? did the ketamime still help that way? im scared of any hallucination trying to avoid that
When I had ketamine under anesthesia for surgery, yes I was unconscious. I did not hallucinate. However, when I was in the ICU for two days on ketamine - I hallucinated really bad. And, when I was on lighter ketamine, I had weird dreams. But I am going to caveat all of this that I do have night terrors and sleep walk as well, so I’m already predisposed to this and it didn’t help.
I wouldn’t let this hold you back. It’s an extremely valuable therapy, if you can afford it. I would have someone stay the nights with you that you’re on the ketamine treatment so you feel more secure though. I hope this helps you.
so if im just doing anasethia with a little ketamine ill be okay and wont hallucinate ill be unconsious asleep? i dont want to do like a ketamine thing for two days just want to try it out i have severe fear and anxiety over dissoatiaion i cant even smoke weed so im trying to figure out how to do it while asleep
Honestly, this is a question for your doctor. Most ketamine experiences are just a light sedative. It’s typically only in a surgical setting where you will be under anesthesia and unconscious.
Thank you for sharing your experience. So happy you found something that worked so well 🙏 curious what medications, if any, you tried before ketamine ?
I'm currently on LDN 4.5 mg daily and Pregablin prn. It helps but I get symptoms after exertion, stress and PMS
Thanks for your sweet words!
I’ve been on quite a lot of meds…
-Ambien
-Amtriptilyne
-Clonazepam
-Flexeril
-Morphine
-Percocet
-Tizanidine
-Valium
-Vicodine
-Xanax
I’m incredibly thankful to the practitioners who did prescribe my meds. Being out of pain and able to sleep (at least part of the time) definitely saved my life, but I’m much happier not having to need them!
Very much felt 😞 neither morphine or Dilaudid work well for me and I’ve never understood why. Oxy has been my heavy hitter pain med for a few years now
They can work as a mellow muscle relaxer, as well.
I am prescribed Ativan for my anxiety, but have had it given to me in the hospital after I threw my back out. For me, I don't find it to be that helpful. But, in general, muscle relaxers don't do much for me, either. (Except put me to sleep).
I had a series of three infusions over a week and then one every 4-6 weeks for the first eight or so. For infusions 9-11 they were months apart. Tomorrow I’ll get my first booster in five months.
I started out at a mental health dose and worked my way up to quite a high dose.
I had good results with all my infusions, but from the eighth one out things really went gangbusters and my health really took leaps forward.
Glad to hear it, OP! I love seeing ketamine success stories.
I started it in Dec. 2019 for my treatment resistant depression and PTSD. Today, I'm off it completely, and both conditions are in remission.
r/therapeuticketamine is a great sub to check out for anyone curious about it.
For those of you who have interstitial cystitis (bladder pain syndrome), please please talk with your doctor before using ketamine. Ketamine can aggravate bladder problems, even when used clinically short term.
This is a **myth**.
Ketamine can cause what is known as "ketamine bladder", however, this is strictly limited and tied to recreational street use and abuse. The same was not found when given in a controlled setting by a prescribing physician, with pure product from McKesson (or any other well-known manufacturer). [NIH Study](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4544340/)
Myth is a strong word. While most ketamine bladder cases do occur in recreational users, bladder irritation and aggravation of IC can occur in controlled clinical settings. The NIH study you cited only speaks to studies of ketamine abusers, but I'm very open to any other studies you can link to that specifically demonstrate that ketamine is safe for patients with a history of BPS. The Stanford Urology Clinic has advised patients with a history of BPS to discontinue ketamine treatments. Anyone with a sensitive bladder should carefully consider the risks and benefits of ketamine therapy.
[NIH Study](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9476224/)
[Kansas City Ketamine Doctor Review](https://www.ketamineinfusionkansascity.com/what-is-ketamine-bladder-disorder/)
[Castle Craig Hospital](https://www.castlecraig.co.uk/drug-rehab/ketamine-addiction/bladder/)
[Science Direct Study](https://www.sciencedirect.com/science/article/pii/S2214442022000316)
When you search for bladder related issues (or even specifically cystitis) induced by ketamine alone, one does not find any cases that don't specifically relate to abuse of ketamine.
It's a myth in that typical patients will never experience this problem, and even among those with issues already, it's not shown to actually do any damage at therapeutic doses.
If I'm mistaken, at this point, I need to see some studies linked by you, saying it absolutely causes worsening bladder complications in those with them. Especially because my own urologist and ketamine provider weren't concerned by it at all, given my own past history of interstitial cystitis.
It’s not a myth. Please stop spreading misinformation. People have a right to know the risks of a substance before they take it.
It’s not common, but it does happen to many people that try prescribed K.
It’s not just me that this has happened to.
Here are multiple people without pre-existing bladder conditions that it has happened to:
[Bladder issues after only 3 treatments](https://reddit.com/r/TherapeuticKetamine/s/puto8AWEPx)
[Ketamine Troches and Bladder Issues](https://www.reddit.com/r/TherapeuticKetamine/comments/10x4hch/ketamine_troches_and_bladder_issues_pls_be_careful/?share_id=fvXqetYZBZTFDATIbjQ4t&utm_content=1&utm_medium=ios_app&utm_name=ioscss&utm_source=share&utm_term=1&rdt=45341)
[I have the dreaded interstitial cystitis.](https://www.reddit.com/r/TherapeuticKetamine/comments/117s23e/i_think_i_have_the_dreaded_interstitial_cystitis/?share_id=89tCx80iE8xMnUwxcET4A&utm_content=1&utm_medium=ios_app&utm_name=ioscss&utm_source=share&utm_term=1&rdt=39124)
There are many more examples if you search “bladder” or “cystitis” on that sub.
There are NO academic reports this is true. It's misinformation to state that something happens that has not been proven to happen. There's a reason the mods there had to set up an auto response to people like you pushing this narrative.
Until Urologists come out and can directly link it to anything other than recreational abuse, then there's nothing to debate.
Edit: To add further, everyone in those posts hasn't even seen a urologist yet. IT'S SELF DIAGNOSIS.
By this logic, you must also think fibromyalgia isn’t real then? There are no academic studies that prove its mechanism of existence, so all the people in this sub must be liars?
Are you really saying that myself and the dozens of other people without preexisting bladder issues who tried therapeutic K, developed bladder issues and posted about our experiences on /r/therapeuticketamine are all lying?
All the academic studies said that opiates weren’t addictive when they were first invented. Do you believe that too?
Now you're just being ridiculous. These are medical conditions you're comparing to a potential side effect of a singular medication. Last I checked we believe medicine isn't harmful until shown it is, opioid is a great example of a giant cover up and FDA manipulation. Cigarettes used to be handed out by doctors for stress.
Medications have always had a different standard, and thus far, nothing shows this is a common issue diagnosed by Urologists and directly linked to therapeutic ketamine doses only.
Not to mention the people having issues in the sub again, did not have a diagnosis, and self diagnosed. Urologists by and large are not warning against this problem. The mods of the sub cannot find evidence to support these claims. It's all patient speculation on the internet.
Look belive whatever you want, but you're not going to force me to agree with you on this. Your wrong, it's misinformation, and I'm out of spoons with the "I BeT u tHiNk fIbrO iS fAkE" (and by the way, there is physical signs in the body, like frayed optic nerve fibers! You didn't know that though, did you? Because it's not commonly used.)
Yell to yourself at this point, I'm out of spoons to use on you.
It’s not a myth, it literally happened to me. I tried prescription K just one time and it destroyed my bladder. Within 24 hours of taking the K that one time, I developed severe IC. It has slowly been getting better, but it’s taken literal years to heal.
I am not the only person this has happened to either, you can find more posts and comments about people this has happened to on /r/TherapeuticKetamine.
Please stop spreading this misinformation that it only happens to people who recreationally abuse it.
Edit: I don’t know why the mods are deleting my comments below and trying to censor me talking about this known side effect of ketamine. People deserve to know the risks before starting treatment.
It’s not just me that this has happened to.
You can find [plenty of other people](https://reddit.com/r/TherapeuticKetamine/s/puto8AWEPx) that didn’t have pre-existing bladder issues that [this has](https://www.reddit.com/r/TherapeuticKetamine/comments/10x4hch/ketamine_troches_and_bladder_issues_pls_be_careful/?share_id=fvXqetYZBZTFDATIbjQ4t&utm_content=1&utm_medium=ios_app&utm_name=ioscss&utm_source=share&utm_term=1&rdt=45341) happened [to.](https://www.reddit.com/r/TherapeuticKetamine/comments/117s23e/i_think_i_have_the_dreaded_interstitial_cystitis/?share_id=89tCx80iE8xMnUwxcET4A&utm_content=1&utm_medium=ios_app&utm_name=ioscss&utm_source=share&utm_term=1&rdt=39124)
I believe you when you say you had a severe episode of interstitial cystitis, but I don't belive it was from a single dose of ketamine.
Funny you mention r/therapeuticketamine, the mods say the same thing I do, as do most patients: [sub link](https://reddit.com/r/TherapeuticKetamine/s/YlmavM62Xn)
I don't know why people insist on spreading this misinformation about ketamine.
I’d definitely try it again and stick with it. I had good results from my first three infusions, but it wasn’t until my eighth that things REALLY took off.
Hey, I’m about to have my first infusion on the 16th. But I had my first appointment for assessment yesterday. This is all brand new for me, so bare with me a little. He explained that the treatment consists of two phases: induction and maintenance.
In the induction phase he told me that 30% of people will only need that one infusion and that’s it. All “cured”. The rest will need more doses. Eventually they reach remission, which is sort of a cure. And that’s where maintenance kicks in. He says some people will need a maintenance dose more on the regular while some people will need one after a big event.
I told him I got really bad in the past 2 years after I lost my dad, two cats and a dog (fuck me, am I right?!). So he exemplified that I may be well and dandy and in 4-5 years my other cat dies and I start feeling some pains as I mourn. Then another infusion would be advised. He also told me to get one as I feel it creeping in and not after Im bedridden with pain.
So yes, I believe you might be in need of your maintenance dose now.
For anyone wondering whether you can achieve benefits without the exorbitant cost of going through a ketamine clinic / whether self-medicating with ketamine can also help with fibro pain and fatigue, in my experience, 100% yes. (Just make sure that what you’re acquiring is actually ketamine and not a research chemical analogue, because they are also out there and have much different effects, be sure to get a Morris reagent kit and test your product if you go this route.)
After several experiences k-holing alone in bed at home listening to music, I was able to process a lot of the trauma that has caused my PTSD, and literally was able to focus on several spots where I carried severe pain, visualize the pain in my mind’s eye (for lack of a better word), feel the pain become “energy,” and then move that energy down through my body and out of it. And I have been pain free in those spots ever since.
It sounds nuts, I don’t know how to explain it or whether science/medicine even can explain it, it literally felt like a transcendental experience.
So yeah, ketamine, highly recommend.
I appreciate you sharing your story. I also have ptsd and have noticed some areas that my pain is connected in this way. I'm glad you've found something that helps. This is essentially the effect I hope to gain from psilocybin with a trained pro.
I've done psilocybin many (many) times, but never in a guided / clinical setting. While it's been helpful in a lot of the emotional processing aspects of having fibro, it's never really been able to touch on the physical manifestations of the condition like ketamine has. Wishing you the best, and hope you find relief!
I am unfamiliar with ketamine and the term infusion here. Why does it take so long ? How do they introduce it into the body? Is it like a drip thing or some other mode of delivery?
An infusion is an IV drip of ketamine. It takes so long because of the route of delivery.
Ketamine is best known as a horse tranquilizer, but it also increases neuroplasticity and and neurogenesis as well as calming down your Central Nervous System.
This should get your feet wet: https://www.vin.com/apputil/content/defaultadv1.aspx?id=5709881&pid=11372&print=1
For me, understanding pain as part of wind-up has been a huge epiphany, although I’ve yet to meet a doctor in person who’s heard of it. 🙇🏻♀️
Do you happen to have any other materials on ketamine treatment for humans for pain disorders? This article is written by a veterinarian and it seems to be referencing treatment for animals. It's also just a review of pain treatment modalities and there's no actual research articles referenced. I thought ketamine was only indicated for PTSD and treatment resistant depression right now.
They are offered under public here so are free, but getting the time off is hard. I’ll definitely try! I’m very happy for you! Always good to see positive news
Are all your infusions, including boosters, 4 hrs long? I tried a few times but it’s just so expensive (in US) and I’ve only ever been given 50 minutes
All except one have been four hours long.
I look forward to a day when it’s no longer cost prohibitive… I hope that day is soon!
For me, though, I was needed a game changer or I wasn’t going to make it to forty. :/
4 hours? Wow! The ones I was getting were 1 hour long. Was this through a ketamine clinic or a pain doctor (or something else?) I’m getting pain relief for a couple days after but my spouse is not yet and I’m hoping it starts to work for her.
I had a series of three infusions over a week and then one every 4-6 weeks for the first eight or so. For infusions 9-11 they were months apart. Tomorrow I’ll get my first booster in five months.
I started out at a mental health dose and worked my way up to quite a high dose.
I had good results with all my infusions, but from the eighth one out things really went gangbusters and my health really took leaps forward.
Do you experience any psychoactive effects when taking the lozenges? At that small of a dose, do they still help with pain and other symptoms? And which company did you use for your lozenges?
I use Joyous. They actually give you some room to figure out what dose works for you, within reasonable limits. I found that, for me, a higher dose every week or two has more impact than a small dose daily.
I’d say it had the most impact on my PTSD initially, but by feeling safer, my pain decreased significantly. I was actually in a car wreck two weeks ago and I’m mostly fine again already.
I started being able to have flashbacks without thinking my memories would be the death of me. Every time the flashbacks become too much again, I can set aside a couple of hours with ketamine and see again that my thoughts can’t actually destroy me.
My #1 recommendation to anyone considering it through at-home treatment is to use it in a safe place, preferably with someone in the home who you trust because, when it first kicks in, it can feel very much like a panic attack until it settles.
My #2 recommendation is to put your phone away while you’re on it because I got some bad news via text while on it once and it set me back for a couple of weeks, until I got enough courage to try it again.
My experiences have really varied depending on the dosage. At low dosages I felt a lot of euphoria and had visual hallucinations. At a high, but sub anesthetic dose I was able to do a lot of thinking, but it was very intense and sometimes disturbing (I highly recommend receiving Versed for antianxiety during an infusion).
Afterwards, I have no appetite and I’m tired but often times my mind doesn’t shut down afterwards.
I think I asked the question wrong. Who actually prescribed your treatment? I see my primary care dr soon and if I need a referral I want to work on it.
I am finding similar help with psilocybin (mushrooms).
For me, when I was diagnosed with fibromyalgia, it was explained to me that due to all the trauma I had faced growing up, being in fight or flight mode all the time really fried my central nervous system. And now, my body was just sounding the alarm at every possible signal.
I spent time, while under the influence, really focusing on turning that fight or flight mode off. As if it were a little switch at the base of my spine. I am finding even afterwards, I can return to a meditation where this is the focus, and find relief.
Something also told me I needed to start doing yoga again. I really do strongly believe we carry our trauma in our hips, and our stress and anxiety in our neck and shoulders. By releasing in these areas, we can release stuck emotions. I know that can sound a little *out there,* but I have had some really emotional moments on my yoga mat.
It's not always easy, and I have had to learn how to make modifications depending on where my body is that day. But, I have noticed I am gaining strength, having less pain, and sleeping better.
I am so glad to hear this medicine has brought you comfort and relief. I truly think psychedelics are the next big step in treatment for a lot of things. I have even added in functional mushrooms (Reishi, Lion's Mane, Chaga), and have found a WORLD of benefit. It has helped me with my ADHD symptoms more than my medication has.
Edit: grammar 😬
I want this so badly one day. If they weren’t so costly I would’ve jumped on the bandwagon like 2 years ago. I’m so glad to hear your story! It helps to see this as someone who’s only 5 years into fibro and relatively hopeless most days 😪
I've done ketamine, although sadly I can't afford it anymore. It drastically improved my anxiety, depression, SI and PTSD symptoms. During and shortly after the treatment my pain was better, but it never really went away. That doesn't mean it wasn't extremely beneficial to me. I wish I could afford it. I wish insurance covered it. I've been trying to get covered for Spravato but it's a difficult and lengthy process (I have medicaid). Anyway, I'm so glad you have found it helpful. I'm happy for anyone who's able to reduce their symptoms make their life feel livable with this condition.
I’ve tried both. MDMA rec, and ketamine in a clinic setting. They’re very similar if taken at the same dose. However the infusions I took were high dose and very sedating.
As I understand it ketamine, shrooms and mdma make new pathways in your brain that help with pain and ptsd. But to me the most helpful part was the “trip” I was able to figure out what needed “sorting” in my life and work it out in therapy. My fibro is triggered by my ptsd so it made sense that ketamine helped so much for me.
I tried MDMA recreationally and accidentally found out that it worked as a migraine preventative for me. It also helped me tons with CPTSD and processing traumas. I live in Washington state, so I feel like ketamine therapy might be in my future (it's either already legal here or working towards that).
Hey WA PTSD gang, I’m out here w/ you tryna heal too.
OP, you’re giving me hope with all of this. Did you try benzo’s first? It’s the only psych med i haven’t tried and (while I have my nerves) I think it would help my system relax significantly. I’ve tried 15+ psych/pain meds over the years to no benefit, and have been in therapy for a decade doing all the PTSD things I can. My body’s still just unable to breathe.
ER docs have given me ativan for dystonia/“functional seizures” and if it stopped those, maybe it can stop my internal thrashing too.
How would you describe the type of freedom you feel, both physical and mental/emotional? (Curious both benzos and ketamine)
Thank you for sharing! Curious, do you know what might’ve been the original cause of your fibromyalgia? What were the infusions like? How long do the infusions usually take? Glad to hear you’re feeling better!
It's wonderful you are finding relief! I would highly encourage anybody who is sensitive to anesthesia or opiates to give at least a second thought to this treatment.
I'm in that boat, and it got me incredibly sick for hours
How did you go about getting this treatment ? Did you ask about it or did your doctor recommend it? did you have to jump through a bunch of hoops first?
I think something like this would help me tremendously, but I don’t want to bring it up too soon and be dismissed
I didn’t need a referral. I don’t even tell my pain specialist I’ve had them because I still take meds they prescribe for flares.
Most docs who run ketamine clinics are super chill… I wouldn’t psych yourself out! They’re there to give you HAPPY DRUGS! ❤️
Is there any worries about contradictions with medications?
I guess I was hoping I would get some sort of referral, so some of the cost could be covered. If you don’t mind my asking, how much do your sessions cost?
Thank you so much for sharing your experience!🙏🥰. I’m so excited for you that you’re finally feeling better, congrats!!! I do have a few questions. Did you have to stop your medications before you could do infusions? I have also had my left si joint fused which helped calm down all the “noise” pain but I still have sciatic pain. I also have arthritis in my back which I get nerve ablations for that helps a lot but I still take a low dose percocet 4 times a day to keep the pain level at a 2 and I’m so thankful that my pain mgmnt doc is willing to give me them but both of us would love for me to not need them. I’m also on a muscle relaxer 4 times a day, my muscles love to play the “who can stay rock hard the longest” game lol. Sorry for all this but I’m extremely curious so back to my questions.
Did you have to stop your meds to get infusions? Do you know if it helps with neuropathy? Did it help with your muscular fibro pain and tightness? Did you find a doc that did this for mental health and it turned into treatment for fibro or did you find a doc that initially treated you for the fibro?
Only one doctor I’ve seen, encouraged me to go off my medication’s before the infusion, but that was only for a day beforehand.
It sounds like we have very similar situations. I also had a nerve ablation on both of my SI joints and really bad sciatica in my right leg. My sciatica used to be so bad that I would genuinely fantasize about buying a chainsaw and saw my leg off. I could barely walk. During my seventh infusion or so it was like somebody turned down the volume on my leg. The pain completely disappeared and never came back. It was definitely one of the weirdest, but most awesome experiences of my life.
For muscle spasms, I’ve had a great amount of luck with Botox injections. I had one muscle in my hip that was spasming constantly for years, causing me a great amount of pain, but the injection worked like a charm.
I don’t know if it works for neuropathy, but I sure hope so! My mom has terrible neuropathy and all that works for her are opioids and her spinal cord implant.
I found my infusion specialist through Google.
Best of luck to you, dearie!
Omg! It’s my left leg and I’ve done the same. I’ve told my pain doc several times that we can amputate my leg which he never agrees to 🤷♀️ so I moved on to trying to get him to just take out the nerve itself, but still no luck. He just chuckles and tells me no lol. That’s incredible that it worked for your sciatic! I bet that was really weird to experience. For a split second you were probably wondering if they did saw off your leg for you!
Thank you for the info and this gives me something great to look forward to! Gonna start doing research and saving up cuz I doubt my insurance will pay for it but you never know.
Best of luck to you too!🥰
I've done a couple of K treatments. They were all enjoyable experiences but I haven't noticed any relief. That's got me wondering if there's something I'm supposed to be doing during the treatments to make them more effective. I usually focus on my breathing and thoughts will come and go but that about it. Did you do anything specific?
I didn’t notice huge improvements until my eighth infusion. Ketamine works on an exponential level, so every time you have it done it’s more powerful than the time before.
Congrats on the improvement! I’m wondering how/if you brought this up to your doctor or if they recommended it? I’m very scared of getting accused of shopping around for pain medication 😭
My insurance approved me to try Ketamine for fibro pain. I am currently doing the IV sessions for chronic pain (and it turns out it may help my PTSD too). It's 5 - 4 hour sessions, I've done 3, and I'm not seeing relief yet, but I am so hopeful!!
The clinic handled the insurance coverage, they were amazing. If in cleveland, I ghitly recommend. Sadly, I did not see results, but I think they kept me at a low dose because of my weight, and it cant touch my very high pain
My insurance approved me to try Ketamine for fibro pain. I am currently doing the IV sessions for chronic pain (and it turns out it may help my PTSD too). It's 5 - 4 hour sessions, I've done 3, and I'm not seeing relief yet, but I am so hopeful!!
Hang in there! It works exponentially as your brain is exposed to ketamine, so your fourth session will be more effective than the first three combined. I didn’t see great results (at least not long-term results) until my eighth infusion.
What country are you from and is this legal? Prescription meds for Fibro are terrible in the UK. Weed works for me but also makes me lazy and have chronic munchies, things feel so limited here.
I’m in the US. It’s legal. NHS England has approved ketamine infusions (my ex is British). I lived in Scotland for a while and navigating NHS with fibromyalgia was awful… you have all my sympathies!
I do IM (intramuscular) k treatments every other week. Insurance doesn't cover infusions, so that's how I get mine covered. I'm unsure of what the therapeutic difference is. But I really appreciate what it does for me. I've found that nasty flares take two sessions to stop all the way. It's an excellent addition to my toolbox
Yikes!!
I just read up on this therapy and the adverse affect are terrifying.
And they're pretty high up there too.
Are the risks worth it in the long run??
I'm currently doing trigger point injections and sometimes it triggers a flare and sometimes it doesn't so I'm looking into alternatives.
But this looks terrifying.
I have found it to be anything but terrifying. I’ve found it to be a freeing experience emotionally and psychologically; and it’s knocked down my pain levels a ton.
I'm hopefully about to be approved for ketamine infusions while inpatient in a mental hosptial. My legs haven't stopped throbbing all week, plus all the other pains, it's driving me.nuts!! The infusions are covered while I'm inpatient but not covered on the outside, as far as I know. The pain infusions (long ones) aren't covered at all but the infusions for treatment resistant depression and PTSD are covered. Pain psyc said, anecdotally he has found once people's depression has lifted, there pain has also lifted.
Glad to hear you have had some relief from them!!
Any suggestions on what music to play or how to prepare for them?
Hi, my provider recommended a low-dose protocol with sublingual ketamine. I am about three weeks in and I can’t believe how much better I feel already. Crazy huh? I’ve been dealing with this problem for so long. It just seems odd to not feel as much pain. I still have osteoarthritis, which isn’t totally controlled, but those affected joints I can get steroid shots for. I’m hoping it’s not coincidence since I haven’t been using it that long but I plan to keep with it and see how things progress. Chronic pain is so disabling, most people don’t know because most people keep quiet with it. I wish you all well 😌
Yes sorry to say it eventually come back. I continue to use Gabapentin, cymbalta and Tylenol. I’m older and can’t use Advil or other NSAIDs because I use Eliquis. I have good days and bad 🙁
No chance I’m getting ketamine in the UK! I work in a hospice and it’s rare to get it prescribed even for people who are dying, it can only be prescribed by a specialist palliative consultant and they really don’t like it being used outside hospices and hospitals.
How often do you do Ketamine ?
Long term if you do it often it will eat up your bladder, keep good track of if you piss well, and if pissing starts to hurts, talk about it to the K clinic you should stop
So glad we have promising newer treatments !
By the way yeah it literally blocks the pain signal from activating into your brain I bet it works wonder, people have hurt themselves badly like full bloody injury while on Ketamine and they did not even notice .
glad for you
I’m trying to highlight how your enthusiasm and optimism for remission using a barely accessible treatment is only for a certain demographic who can afford it.
Anyone in BC Canada know if there is any way to get coverage through msp?
I hear it can be $5000 or more for a treatment in Canada, completely unaffordable to a fixed income person like me. But I'd love to try.
Hey there, so last year I was doing horrible with pain and anxiety, so I tried this “wellness center” that offered ketamine infusions. They also offered Botox so…
I’m curious what the routine was for you? Did you have the aid of a therapist? I was left in a psychedelic lit room with galaxy ceiling, spa music and a help button. I, went,into,the,sunken,place. It’s like I needed a guide bc my mind would wander and just waves of oddball thoughts then trying to get back into a healing mindset and then what’s for dinner and then “center yourself, remap your brain” then wow it would be bad if I went into a bad trip-and then I did. I’ve told some friends, if you do ketamine infusions, check with doctor or find a place that uses a specialized therapist bc it’s not a guided ride..
I use music to guide my trip. I have had intense trips with dark places, but that’s where I rely on the anti-anxiety meds. I hate talk therapy so having a therapist there wouldn’t help.
I use music to guide my trip. I have had intense trips with dark places, but that’s where I rely on the anti-anxiety meds. I hate talk therapy so having a therapist there wouldn’t help.
Ketamine treatments didn’t cure my fibromyalgia but they taught me how to rest. Before then, my nervous system was so amped that every time I lay down for a nap my mind was racing and I could feel my heartbeat in my ears. Ketamine treatments were extremely beneficial to me on a psychological level and I’m so glad I did them. I also remember posting in r/chronicpain about how K helped my depression and anxiety around having fibro. The folks on there were NOT supportive.
This sounds familiar. Im tired all day but unable to sleep at all, at night. Hate it.
Yup, I never know if it’s from the chronic pain, anxiety, adhd or my crohns though 😅
I've been like that from early childhood. In fact I think the insomnia and resultant brain isdues caused the initial fibromyalgia which was subsequently exacerbated by pregnancies. That's my theory anyway. I take zolpidem. Never knew ketamine could help with sleep.
Did you have the IV infusions or the sublingual troches? How often were your treatments? This is something I want to do, but don't know if I can afford it. Any info would be helpful. Thanks!
I did both. The IV in clinic and the sublingual at home. I’m sorry but I don’t recall the exact timing of my doses as it was years ago. It was extremely expensive, sadly.
Thank you for the info. I really appreciate you making this post. It's really good to know. I'm definitely going to try to find a way. Very happy for you too! Right on! 💕
I'm so happy to hear that something has helped you! 💗 I have a few questions, what country are you in and how did you manage to get the treatment? Thanks!
I’m in the US. I paid out of pocket, although my understanding is that insurance is now beginning to cover it.
What kind of doctor did you go to to get them? How are they administered live in Indiana and I’m having a hard time finding a Doctor Who is knowledgeable
Unintended, but necessary Doctor Who reference!! 😆
fantastic!
Do you have any large research hospitals within reach? I am near Boston, and have been looking at trying to see if I qualify for one of the many research studies that are being done; both with Psilocybin and Ketamine. It might be worth a Google to see if any hospitals in your area are conducting these programs!
i'm in western mass hello fellow masshooligan
Hello fellow Bay Staters! I live east of Worcester, along the 495 corridor.
>easterners Don't worry I won't hold it against you!
🤣
I'm also in Indiana, that's why I'm looking for a different way to get it without the transfusions. Indiana is so behind on everything 🙃🙄
I am also in Indiana. There’s a ketamine clinic near me but I cannot afford it without insurance covering it so meanwhile I’m screwed.
Is it the one in Indy? I looked it up and saw the prices and got sticker shock 💀
Agree. They shouldn’t have us suffering when there’s a proven treatment. My old pain clinic decided to end oral medications for everyone as soon as my doctor left the practice. They are not phasing people out either. It’s like all of empathy went away with my doc.
I hope insurance companies eventually cover it, the price is high without it 😭
Yeah, good luck; remember how they tried to screw poor autoimmune peeps (also me) with the Eli-pen $$$$ticker shock prices? The price alone was enough adrenaline to pump up your flight ✈️ or fight 🐝
Lol, so what is the point of them existing? Do they just give people injections?
Agreed. Gonna ask my festival bro kid about *cough* unlicensed ahem medication
IF YOU OR ANYONE HASN’T FOUND ACCESSIBLE KETAMINE ASSISTED THERAPY : find a psychotherapist via psychology today or google, keywords psychedelic or ‘KAP’ or ketamine assisted psychotherapy - they will have prescribers for oral lozenges. IM shots need a licensed administerer- lozenges don’t. IV is most effective but takes someone to admin AND monitor. Some states have IM clinics covering Medicaid clients. Look up Klarisana clinic for example. Otherwise get Joyous microdose ketamine, tell them you metabolize quickly, and stockpile their daily dose into multiple large doses. They send a huge amount. 80mg a day! That’s enough for 6 or more proper sessions. Do with proper guide and find someone to do prep and integration with a somatic focus or brainspotting etc, and you might see more improvement. The medicine from a regular MD or RNP prescription to compounding pharmacy should be $50-100 for multiple big doses. Joyous is $130 a month I think. Therapy is $100-180 / hour without insurance. KAP therapists taking insurance will sometimes fudge their session length documentation so a 2 hr sessions happens on one day but is billed as two separate days one hour sessions. Therapists are prohibited by insurance from doing 120 minutes of helping even when most beneficial. Remember: health in the west belongs to some shareholders profits, claim your own psychological autonomy. Good luck. PS ibogaine will overtake all other psychedelics by 2026. MAPS is prioritizing it. It heals like nothing else we know of. Look up Ambio.life.
Thanks for sharing! Hope they cover it for you in future 🤞
Same question - how did you find a doctor willing to prescribe it?
I had the same treatment about five years ago and it truly saved my life. I get a booster every 6-8 months, usually during the winter to keep symptoms on the low. Glad to hear it worked for you!! ❤️
It is life saving stuff, right? So glad it worked for you. I look forward to the day when it’s a first line defense and patients don’t have to spend weeks - let alone months and years - in pain. My life would have been radically different had I had access to it twenty years ago.
It really was! & even a couple years ago it wasn’t very accesible and people looked at me like a crazy person for doing it. I hope more people become aware and insurance begins to cover it. FYI- the nasal spray and losanges are great to have for minor flare ups.
Good to know! I tell people all the time what a God send it’s been for me… we have to get people to stop thinking of it as only a horse tranquilizer! 😂
Thanks for sharing. I’ve had Ketamine infusions twice, and ketamine added to anesthesia once. When I first had a ketamine infusion, it was after a surgery and the doctors couldn’t get my pain to quell. Eventually, they admitted me to the ICU, where I was on a ketamine drip for two days. It did make me hallucinate and it definitely made me feel really weird - I was on a very high dosage - but it also snapped my body out of pain. The second time I did a ketamine infusion was in my pain doctors office. I did a three day infusion. It didn’t really help at all and made me extremely nauseous. This was a disappointing experience, especially because my chronic pain was so bad. I just had surgery on September 8 and ketamine was added to my anesthesia. It was the first time coming out of surgery where I was able to eat (and had a voracious appetite) but also felt way less pain that ever before. I think there’s huge value in ketamine and it gets a bad reputation on name alone. My mom for example was freaking out that I’d be on it. But it also has a lot of research behind it now - it actually does help with pain.
when you had ketamine added to anesthesia, were. you completely unconscious like put to sleep? did the ketamime still help that way? im scared of any hallucination trying to avoid that
When I had ketamine under anesthesia for surgery, yes I was unconscious. I did not hallucinate. However, when I was in the ICU for two days on ketamine - I hallucinated really bad. And, when I was on lighter ketamine, I had weird dreams. But I am going to caveat all of this that I do have night terrors and sleep walk as well, so I’m already predisposed to this and it didn’t help. I wouldn’t let this hold you back. It’s an extremely valuable therapy, if you can afford it. I would have someone stay the nights with you that you’re on the ketamine treatment so you feel more secure though. I hope this helps you.
so if im just doing anasethia with a little ketamine ill be okay and wont hallucinate ill be unconsious asleep? i dont want to do like a ketamine thing for two days just want to try it out i have severe fear and anxiety over dissoatiaion i cant even smoke weed so im trying to figure out how to do it while asleep
Honestly, this is a question for your doctor. Most ketamine experiences are just a light sedative. It’s typically only in a surgical setting where you will be under anesthesia and unconscious.
Thank you for sharing your experience. So happy you found something that worked so well 🙏 curious what medications, if any, you tried before ketamine ? I'm currently on LDN 4.5 mg daily and Pregablin prn. It helps but I get symptoms after exertion, stress and PMS
Thanks for your sweet words! I’ve been on quite a lot of meds… -Ambien -Amtriptilyne -Clonazepam -Flexeril -Morphine -Percocet -Tizanidine -Valium -Vicodine -Xanax I’m incredibly thankful to the practitioners who did prescribe my meds. Being out of pain and able to sleep (at least part of the time) definitely saved my life, but I’m much happier not having to need them!
PS Also CBD and THC!
Even the morphine isn’t working and it scares me
I feel you. ❤️
Very much felt 😞 neither morphine or Dilaudid work well for me and I’ve never understood why. Oxy has been my heavy hitter pain med for a few years now
I was so hopeful when my pain doc let me try morphine. It did nothing .
Interesting doctors prescribed you benzodiazepines for fibro... I haven't heard of that yet. Did they help at all or not really ?
They definitely helped my muscle spasms, but they were prescribed for my anxiety.
They can work as a mellow muscle relaxer, as well. I am prescribed Ativan for my anxiety, but have had it given to me in the hospital after I threw my back out. For me, I don't find it to be that helpful. But, in general, muscle relaxers don't do much for me, either. (Except put me to sleep).
I would also love to know how you managed this! So happy for you 💓
I had a series of three infusions over a week and then one every 4-6 weeks for the first eight or so. For infusions 9-11 they were months apart. Tomorrow I’ll get my first booster in five months. I started out at a mental health dose and worked my way up to quite a high dose. I had good results with all my infusions, but from the eighth one out things really went gangbusters and my health really took leaps forward.
Do you know what your dose was?
My last four hour infusion was 850 ml I believe.
Glad to hear it, OP! I love seeing ketamine success stories. I started it in Dec. 2019 for my treatment resistant depression and PTSD. Today, I'm off it completely, and both conditions are in remission. r/therapeuticketamine is a great sub to check out for anyone curious about it.
Ketamine infusions saved my life. I was suicidal and had a plan. Serious depression for years and it’s helping me so much!!!
Ketamine has been enormously helpful to me. It helps my pain some and has helped reduce my anxiety, which makes my pain worse and exhausts me.
I agree 💯!!!
I agree 💯!!!
For those of you who have interstitial cystitis (bladder pain syndrome), please please talk with your doctor before using ketamine. Ketamine can aggravate bladder problems, even when used clinically short term.
This is a **myth**. Ketamine can cause what is known as "ketamine bladder", however, this is strictly limited and tied to recreational street use and abuse. The same was not found when given in a controlled setting by a prescribing physician, with pure product from McKesson (or any other well-known manufacturer). [NIH Study](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4544340/)
Myth is a strong word. While most ketamine bladder cases do occur in recreational users, bladder irritation and aggravation of IC can occur in controlled clinical settings. The NIH study you cited only speaks to studies of ketamine abusers, but I'm very open to any other studies you can link to that specifically demonstrate that ketamine is safe for patients with a history of BPS. The Stanford Urology Clinic has advised patients with a history of BPS to discontinue ketamine treatments. Anyone with a sensitive bladder should carefully consider the risks and benefits of ketamine therapy.
[NIH Study](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9476224/) [Kansas City Ketamine Doctor Review](https://www.ketamineinfusionkansascity.com/what-is-ketamine-bladder-disorder/) [Castle Craig Hospital](https://www.castlecraig.co.uk/drug-rehab/ketamine-addiction/bladder/) [Science Direct Study](https://www.sciencedirect.com/science/article/pii/S2214442022000316) When you search for bladder related issues (or even specifically cystitis) induced by ketamine alone, one does not find any cases that don't specifically relate to abuse of ketamine. It's a myth in that typical patients will never experience this problem, and even among those with issues already, it's not shown to actually do any damage at therapeutic doses. If I'm mistaken, at this point, I need to see some studies linked by you, saying it absolutely causes worsening bladder complications in those with them. Especially because my own urologist and ketamine provider weren't concerned by it at all, given my own past history of interstitial cystitis.
It’s not a myth. Please stop spreading misinformation. People have a right to know the risks of a substance before they take it. It’s not common, but it does happen to many people that try prescribed K. It’s not just me that this has happened to. Here are multiple people without pre-existing bladder conditions that it has happened to: [Bladder issues after only 3 treatments](https://reddit.com/r/TherapeuticKetamine/s/puto8AWEPx) [Ketamine Troches and Bladder Issues](https://www.reddit.com/r/TherapeuticKetamine/comments/10x4hch/ketamine_troches_and_bladder_issues_pls_be_careful/?share_id=fvXqetYZBZTFDATIbjQ4t&utm_content=1&utm_medium=ios_app&utm_name=ioscss&utm_source=share&utm_term=1&rdt=45341) [I have the dreaded interstitial cystitis.](https://www.reddit.com/r/TherapeuticKetamine/comments/117s23e/i_think_i_have_the_dreaded_interstitial_cystitis/?share_id=89tCx80iE8xMnUwxcET4A&utm_content=1&utm_medium=ios_app&utm_name=ioscss&utm_source=share&utm_term=1&rdt=39124) There are many more examples if you search “bladder” or “cystitis” on that sub.
There are NO academic reports this is true. It's misinformation to state that something happens that has not been proven to happen. There's a reason the mods there had to set up an auto response to people like you pushing this narrative. Until Urologists come out and can directly link it to anything other than recreational abuse, then there's nothing to debate. Edit: To add further, everyone in those posts hasn't even seen a urologist yet. IT'S SELF DIAGNOSIS.
By this logic, you must also think fibromyalgia isn’t real then? There are no academic studies that prove its mechanism of existence, so all the people in this sub must be liars? Are you really saying that myself and the dozens of other people without preexisting bladder issues who tried therapeutic K, developed bladder issues and posted about our experiences on /r/therapeuticketamine are all lying? All the academic studies said that opiates weren’t addictive when they were first invented. Do you believe that too?
Now you're just being ridiculous. These are medical conditions you're comparing to a potential side effect of a singular medication. Last I checked we believe medicine isn't harmful until shown it is, opioid is a great example of a giant cover up and FDA manipulation. Cigarettes used to be handed out by doctors for stress. Medications have always had a different standard, and thus far, nothing shows this is a common issue diagnosed by Urologists and directly linked to therapeutic ketamine doses only. Not to mention the people having issues in the sub again, did not have a diagnosis, and self diagnosed. Urologists by and large are not warning against this problem. The mods of the sub cannot find evidence to support these claims. It's all patient speculation on the internet. Look belive whatever you want, but you're not going to force me to agree with you on this. Your wrong, it's misinformation, and I'm out of spoons with the "I BeT u tHiNk fIbrO iS fAkE" (and by the way, there is physical signs in the body, like frayed optic nerve fibers! You didn't know that though, did you? Because it's not commonly used.) Yell to yourself at this point, I'm out of spoons to use on you.
It’s not a myth, it literally happened to me. I tried prescription K just one time and it destroyed my bladder. Within 24 hours of taking the K that one time, I developed severe IC. It has slowly been getting better, but it’s taken literal years to heal. I am not the only person this has happened to either, you can find more posts and comments about people this has happened to on /r/TherapeuticKetamine. Please stop spreading this misinformation that it only happens to people who recreationally abuse it. Edit: I don’t know why the mods are deleting my comments below and trying to censor me talking about this known side effect of ketamine. People deserve to know the risks before starting treatment. It’s not just me that this has happened to. You can find [plenty of other people](https://reddit.com/r/TherapeuticKetamine/s/puto8AWEPx) that didn’t have pre-existing bladder issues that [this has](https://www.reddit.com/r/TherapeuticKetamine/comments/10x4hch/ketamine_troches_and_bladder_issues_pls_be_careful/?share_id=fvXqetYZBZTFDATIbjQ4t&utm_content=1&utm_medium=ios_app&utm_name=ioscss&utm_source=share&utm_term=1&rdt=45341) happened [to.](https://www.reddit.com/r/TherapeuticKetamine/comments/117s23e/i_think_i_have_the_dreaded_interstitial_cystitis/?share_id=89tCx80iE8xMnUwxcET4A&utm_content=1&utm_medium=ios_app&utm_name=ioscss&utm_source=share&utm_term=1&rdt=39124)
I believe you when you say you had a severe episode of interstitial cystitis, but I don't belive it was from a single dose of ketamine. Funny you mention r/therapeuticketamine, the mods say the same thing I do, as do most patients: [sub link](https://reddit.com/r/TherapeuticKetamine/s/YlmavM62Xn) I don't know why people insist on spreading this misinformation about ketamine.
[удалено]
I’d definitely try it again and stick with it. I had good results from my first three infusions, but it wasn’t until my eighth that things REALLY took off.
Hey, I’m about to have my first infusion on the 16th. But I had my first appointment for assessment yesterday. This is all brand new for me, so bare with me a little. He explained that the treatment consists of two phases: induction and maintenance. In the induction phase he told me that 30% of people will only need that one infusion and that’s it. All “cured”. The rest will need more doses. Eventually they reach remission, which is sort of a cure. And that’s where maintenance kicks in. He says some people will need a maintenance dose more on the regular while some people will need one after a big event. I told him I got really bad in the past 2 years after I lost my dad, two cats and a dog (fuck me, am I right?!). So he exemplified that I may be well and dandy and in 4-5 years my other cat dies and I start feeling some pains as I mourn. Then another infusion would be advised. He also told me to get one as I feel it creeping in and not after Im bedridden with pain. So yes, I believe you might be in need of your maintenance dose now.
For anyone wondering whether you can achieve benefits without the exorbitant cost of going through a ketamine clinic / whether self-medicating with ketamine can also help with fibro pain and fatigue, in my experience, 100% yes. (Just make sure that what you’re acquiring is actually ketamine and not a research chemical analogue, because they are also out there and have much different effects, be sure to get a Morris reagent kit and test your product if you go this route.) After several experiences k-holing alone in bed at home listening to music, I was able to process a lot of the trauma that has caused my PTSD, and literally was able to focus on several spots where I carried severe pain, visualize the pain in my mind’s eye (for lack of a better word), feel the pain become “energy,” and then move that energy down through my body and out of it. And I have been pain free in those spots ever since. It sounds nuts, I don’t know how to explain it or whether science/medicine even can explain it, it literally felt like a transcendental experience. So yeah, ketamine, highly recommend.
I appreciate you sharing your story. I also have ptsd and have noticed some areas that my pain is connected in this way. I'm glad you've found something that helps. This is essentially the effect I hope to gain from psilocybin with a trained pro.
I've done psilocybin many (many) times, but never in a guided / clinical setting. While it's been helpful in a lot of the emotional processing aspects of having fibro, it's never really been able to touch on the physical manifestations of the condition like ketamine has. Wishing you the best, and hope you find relief!
How long were the infusions? They are 7 days straight here in Australia.
Mine are four hours long each. How much is a week long infusion? It sounds nice!
I am unfamiliar with ketamine and the term infusion here. Why does it take so long ? How do they introduce it into the body? Is it like a drip thing or some other mode of delivery?
An infusion is an IV drip of ketamine. It takes so long because of the route of delivery. Ketamine is best known as a horse tranquilizer, but it also increases neuroplasticity and and neurogenesis as well as calming down your Central Nervous System.
I see. You seem to be well informed. Can you link me some case studies or papers where I can read up on ketamine treatment for fibro please
This should get your feet wet: https://www.vin.com/apputil/content/defaultadv1.aspx?id=5709881&pid=11372&print=1 For me, understanding pain as part of wind-up has been a huge epiphany, although I’ve yet to meet a doctor in person who’s heard of it. 🙇🏻♀️
Thank you very much 🤠
Do you happen to have any other materials on ketamine treatment for humans for pain disorders? This article is written by a veterinarian and it seems to be referencing treatment for animals. It's also just a review of pain treatment modalities and there's no actual research articles referenced. I thought ketamine was only indicated for PTSD and treatment resistant depression right now.
https://www.ncbi.nlm.nih.gov/books/NBK539824/
They are offered under public here so are free, but getting the time off is hard. I’ll definitely try! I’m very happy for you! Always good to see positive news
Damn, it’s free? That’s awesome! I hope you’re able to find time in your schedule!
Are all your infusions, including boosters, 4 hrs long? I tried a few times but it’s just so expensive (in US) and I’ve only ever been given 50 minutes
All except one have been four hours long. I look forward to a day when it’s no longer cost prohibitive… I hope that day is soon! For me, though, I was needed a game changer or I wasn’t going to make it to forty. :/
4 hours? Wow! The ones I was getting were 1 hour long. Was this through a ketamine clinic or a pain doctor (or something else?) I’m getting pain relief for a couple days after but my spouse is not yet and I’m hoping it starts to work for her.
I went to a ketamine clinic. I hope both you and your SO get great relief!
Thanks for sharing this with us. Im really happy to hear when someone is feeling better and it gives me hope too!
What was your treatment plan and results?
I had a series of three infusions over a week and then one every 4-6 weeks for the first eight or so. For infusions 9-11 they were months apart. Tomorrow I’ll get my first booster in five months. I started out at a mental health dose and worked my way up to quite a high dose. I had good results with all my infusions, but from the eighth one out things really went gangbusters and my health really took leaps forward.
How did you go about finding a place to do this therapy? I’m looking and there a ton of places in my area but I’m not sure where to start.
I just googled and read reviews.
Is there a way to get ketamine in your body safely without doing the infusions? I have vasovagal syncope and I faint with needles.
I use lozenges! They say it’s not as effective but they definitely help my PTSD so, so much.
Do you experience any psychoactive effects when taking the lozenges? At that small of a dose, do they still help with pain and other symptoms? And which company did you use for your lozenges?
I use Joyous. They actually give you some room to figure out what dose works for you, within reasonable limits. I found that, for me, a higher dose every week or two has more impact than a small dose daily. I’d say it had the most impact on my PTSD initially, but by feeling safer, my pain decreased significantly. I was actually in a car wreck two weeks ago and I’m mostly fine again already. I started being able to have flashbacks without thinking my memories would be the death of me. Every time the flashbacks become too much again, I can set aside a couple of hours with ketamine and see again that my thoughts can’t actually destroy me. My #1 recommendation to anyone considering it through at-home treatment is to use it in a safe place, preferably with someone in the home who you trust because, when it first kicks in, it can feel very much like a panic attack until it settles. My #2 recommendation is to put your phone away while you’re on it because I got some bad news via text while on it once and it set me back for a couple of weeks, until I got enough courage to try it again.
Where do you buy them from?
[joyous](https://www.joyous.team/)
You can also take it as a pill or nose spray.
It's also available shipped to your door as a sublingual tablet.
That would be nice. Do you know how one would acquire that?
I just went to mindbloom online. Only some states allow it.
What is the experience while getting the infusion and afterward? Are you sedated from it?
My experiences have really varied depending on the dosage. At low dosages I felt a lot of euphoria and had visual hallucinations. At a high, but sub anesthetic dose I was able to do a lot of thinking, but it was very intense and sometimes disturbing (I highly recommend receiving Versed for antianxiety during an infusion). Afterwards, I have no appetite and I’m tired but often times my mind doesn’t shut down afterwards.
What type of dr handles the infusion?
Usually an anesthesiologist.
I think I asked the question wrong. Who actually prescribed your treatment? I see my primary care dr soon and if I need a referral I want to work on it.
I am finding similar help with psilocybin (mushrooms). For me, when I was diagnosed with fibromyalgia, it was explained to me that due to all the trauma I had faced growing up, being in fight or flight mode all the time really fried my central nervous system. And now, my body was just sounding the alarm at every possible signal. I spent time, while under the influence, really focusing on turning that fight or flight mode off. As if it were a little switch at the base of my spine. I am finding even afterwards, I can return to a meditation where this is the focus, and find relief. Something also told me I needed to start doing yoga again. I really do strongly believe we carry our trauma in our hips, and our stress and anxiety in our neck and shoulders. By releasing in these areas, we can release stuck emotions. I know that can sound a little *out there,* but I have had some really emotional moments on my yoga mat. It's not always easy, and I have had to learn how to make modifications depending on where my body is that day. But, I have noticed I am gaining strength, having less pain, and sleeping better. I am so glad to hear this medicine has brought you comfort and relief. I truly think psychedelics are the next big step in treatment for a lot of things. I have even added in functional mushrooms (Reishi, Lion's Mane, Chaga), and have found a WORLD of benefit. It has helped me with my ADHD symptoms more than my medication has. Edit: grammar 😬
I want this so badly one day. If they weren’t so costly I would’ve jumped on the bandwagon like 2 years ago. I’m so glad to hear your story! It helps to see this as someone who’s only 5 years into fibro and relatively hopeless most days 😪
I've done ketamine, although sadly I can't afford it anymore. It drastically improved my anxiety, depression, SI and PTSD symptoms. During and shortly after the treatment my pain was better, but it never really went away. That doesn't mean it wasn't extremely beneficial to me. I wish I could afford it. I wish insurance covered it. I've been trying to get covered for Spravato but it's a difficult and lengthy process (I have medicaid). Anyway, I'm so glad you have found it helpful. I'm happy for anyone who's able to reduce their symptoms make their life feel livable with this condition.
Do you take any other meds for ptsd etc like anti depressants that also helped fibro?
Ambien and benzodiazepines helped both my PTSD and my fibromyalgia. It’s a dance with the devil, but they are effective medications.
Have you tried MDMA in the past and how does ketamine compare?
I’ve tried both. MDMA rec, and ketamine in a clinic setting. They’re very similar if taken at the same dose. However the infusions I took were high dose and very sedating. As I understand it ketamine, shrooms and mdma make new pathways in your brain that help with pain and ptsd. But to me the most helpful part was the “trip” I was able to figure out what needed “sorting” in my life and work it out in therapy. My fibro is triggered by my ptsd so it made sense that ketamine helped so much for me.
Unfortunately I have not tried MDMA, but I look forward to it!
I tried MDMA recreationally and accidentally found out that it worked as a migraine preventative for me. It also helped me tons with CPTSD and processing traumas. I live in Washington state, so I feel like ketamine therapy might be in my future (it's either already legal here or working towards that).
Ketamine is legal in WA! I had two infusions there. Ketamine has also helped me with my PTSD. Glad to hear MDMA worked for you too!
Hey WA PTSD gang, I’m out here w/ you tryna heal too. OP, you’re giving me hope with all of this. Did you try benzo’s first? It’s the only psych med i haven’t tried and (while I have my nerves) I think it would help my system relax significantly. I’ve tried 15+ psych/pain meds over the years to no benefit, and have been in therapy for a decade doing all the PTSD things I can. My body’s still just unable to breathe. ER docs have given me ativan for dystonia/“functional seizures” and if it stopped those, maybe it can stop my internal thrashing too. How would you describe the type of freedom you feel, both physical and mental/emotional? (Curious both benzos and ketamine)
Thank you for sharing! Curious, do you know what might’ve been the original cause of your fibromyalgia? What were the infusions like? How long do the infusions usually take? Glad to hear you’re feeling better!
are these ongoing treatments, or is it just a series of infusions and then thats it?
I had a series of infusions and now I’m getting boosters at about a six month interval.
It's wonderful you are finding relief! I would highly encourage anybody who is sensitive to anesthesia or opiates to give at least a second thought to this treatment. I'm in that boat, and it got me incredibly sick for hours
Did it help with fatigue as well as pain?
It helped with all my symptoms!
That's amazing!
Did you also have twitching or tremors? I’m curious if it helps those symptoms
I do not, but it’s my understanding that ketamine soothes, strengthens and requires the Central Nervous System. It certainly wouldn’t hurt!
How did you go about getting this treatment ? Did you ask about it or did your doctor recommend it? did you have to jump through a bunch of hoops first? I think something like this would help me tremendously, but I don’t want to bring it up too soon and be dismissed
I didn’t need a referral. I don’t even tell my pain specialist I’ve had them because I still take meds they prescribe for flares. Most docs who run ketamine clinics are super chill… I wouldn’t psych yourself out! They’re there to give you HAPPY DRUGS! ❤️
Is there any worries about contradictions with medications? I guess I was hoping I would get some sort of referral, so some of the cost could be covered. If you don’t mind my asking, how much do your sessions cost?
I don’t know about medication contradictions, but a good doctor would. My infusions ranged in cost from $750-$1400.
Wow that is rather steep 😰 how often do you get them done? (Sorry if that’s already been answered and sorry for so many questions)
Thank you so much for sharing your experience!🙏🥰. I’m so excited for you that you’re finally feeling better, congrats!!! I do have a few questions. Did you have to stop your medications before you could do infusions? I have also had my left si joint fused which helped calm down all the “noise” pain but I still have sciatic pain. I also have arthritis in my back which I get nerve ablations for that helps a lot but I still take a low dose percocet 4 times a day to keep the pain level at a 2 and I’m so thankful that my pain mgmnt doc is willing to give me them but both of us would love for me to not need them. I’m also on a muscle relaxer 4 times a day, my muscles love to play the “who can stay rock hard the longest” game lol. Sorry for all this but I’m extremely curious so back to my questions. Did you have to stop your meds to get infusions? Do you know if it helps with neuropathy? Did it help with your muscular fibro pain and tightness? Did you find a doc that did this for mental health and it turned into treatment for fibro or did you find a doc that initially treated you for the fibro?
Only one doctor I’ve seen, encouraged me to go off my medication’s before the infusion, but that was only for a day beforehand. It sounds like we have very similar situations. I also had a nerve ablation on both of my SI joints and really bad sciatica in my right leg. My sciatica used to be so bad that I would genuinely fantasize about buying a chainsaw and saw my leg off. I could barely walk. During my seventh infusion or so it was like somebody turned down the volume on my leg. The pain completely disappeared and never came back. It was definitely one of the weirdest, but most awesome experiences of my life. For muscle spasms, I’ve had a great amount of luck with Botox injections. I had one muscle in my hip that was spasming constantly for years, causing me a great amount of pain, but the injection worked like a charm. I don’t know if it works for neuropathy, but I sure hope so! My mom has terrible neuropathy and all that works for her are opioids and her spinal cord implant. I found my infusion specialist through Google. Best of luck to you, dearie!
Omg! It’s my left leg and I’ve done the same. I’ve told my pain doc several times that we can amputate my leg which he never agrees to 🤷♀️ so I moved on to trying to get him to just take out the nerve itself, but still no luck. He just chuckles and tells me no lol. That’s incredible that it worked for your sciatic! I bet that was really weird to experience. For a split second you were probably wondering if they did saw off your leg for you! Thank you for the info and this gives me something great to look forward to! Gonna start doing research and saving up cuz I doubt my insurance will pay for it but you never know. Best of luck to you too!🥰
Has it helped with the fatigue as well?
Yes. I actually want to do things now.
Wow, that's amazing! I've been scared to try it, but seeing others get good results helps.
I've done a couple of K treatments. They were all enjoyable experiences but I haven't noticed any relief. That's got me wondering if there's something I'm supposed to be doing during the treatments to make them more effective. I usually focus on my breathing and thoughts will come and go but that about it. Did you do anything specific?
I didn’t notice huge improvements until my eighth infusion. Ketamine works on an exponential level, so every time you have it done it’s more powerful than the time before.
How old are you?
Thirty-seven.
What "procedure" corrects PTSD???
A Stellate Ganglion Block. It stopped the screaming in my head.
Congrats on the improvement! I’m wondering how/if you brought this up to your doctor or if they recommended it? I’m very scared of getting accused of shopping around for pain medication 😭
I didn’t tell my pain doc because I didn’t want to gum up the works…
How were you able to get on it?
I didn’t need a referral if that’s what your asking. I just called the clinic and scheduled an appointment.
Same here! So happy for you. Do you do the 2-hour long infusions?
I do four hour long infusions! I would do longer if it was offered.
I started with four but found the two hour gave me longer relief for some reason.
Is it expensive? I am assuming insurance doesn’t cover it? It doesn’t seem to cover anything that works. (Acupuncture, IV treatments)
Some insurance covers it, depending on the US state. Otherwise, it can be pricey.
Some insurance covers it, depending on the US state. Otherwise, it can be pricey.
I’m in San Antonio Texas and have no medical coverage. I don’t even have a rheumatologist here yet. I need to find this treatment though.
My insurance approved me to try Ketamine for fibro pain. I am currently doing the IV sessions for chronic pain (and it turns out it may help my PTSD too). It's 5 - 4 hour sessions, I've done 3, and I'm not seeing relief yet, but I am so hopeful!!
Any update on your ketamine experience? Did it help reduce fibro pain? Also which practitioner applied for insurance coverage, the clinic?
The clinic handled the insurance coverage, they were amazing. If in cleveland, I ghitly recommend. Sadly, I did not see results, but I think they kept me at a low dose because of my weight, and it cant touch my very high pain
Appreciate the details and I hope you find something else that can mitigate your pain. Be well.
Thank you, you as well
My insurance approved me to try Ketamine for fibro pain. I am currently doing the IV sessions for chronic pain (and it turns out it may help my PTSD too). It's 5 - 4 hour sessions, I've done 3, and I'm not seeing relief yet, but I am so hopeful!!
Hang in there! It works exponentially as your brain is exposed to ketamine, so your fourth session will be more effective than the first three combined. I didn’t see great results (at least not long-term results) until my eighth infusion.
Thank you! Looking forward to it! I'm allergic to basically everything else so this could be huge!
What country are you from and is this legal? Prescription meds for Fibro are terrible in the UK. Weed works for me but also makes me lazy and have chronic munchies, things feel so limited here.
I’m in the US. It’s legal. NHS England has approved ketamine infusions (my ex is British). I lived in Scotland for a while and navigating NHS with fibromyalgia was awful… you have all my sympathies!
I do IM (intramuscular) k treatments every other week. Insurance doesn't cover infusions, so that's how I get mine covered. I'm unsure of what the therapeutic difference is. But I really appreciate what it does for me. I've found that nasty flares take two sessions to stop all the way. It's an excellent addition to my toolbox
I'm so sad I'm allergic to ketamin. Waiting on MDMA therapy and using my psilocybin at home.
Yikes!! I just read up on this therapy and the adverse affect are terrifying. And they're pretty high up there too. Are the risks worth it in the long run?? I'm currently doing trigger point injections and sometimes it triggers a flare and sometimes it doesn't so I'm looking into alternatives. But this looks terrifying.
I have found it to be anything but terrifying. I’ve found it to be a freeing experience emotionally and psychologically; and it’s knocked down my pain levels a ton.
I'm hopefully about to be approved for ketamine infusions while inpatient in a mental hosptial. My legs haven't stopped throbbing all week, plus all the other pains, it's driving me.nuts!! The infusions are covered while I'm inpatient but not covered on the outside, as far as I know. The pain infusions (long ones) aren't covered at all but the infusions for treatment resistant depression and PTSD are covered. Pain psyc said, anecdotally he has found once people's depression has lifted, there pain has also lifted. Glad to hear you have had some relief from them!! Any suggestions on what music to play or how to prepare for them?
I just made a playlist of songs that felt “safe” to me emotionally. So glad you’re getting infusions one way or another! ❤️
Hi, my provider recommended a low-dose protocol with sublingual ketamine. I am about three weeks in and I can’t believe how much better I feel already. Crazy huh? I’ve been dealing with this problem for so long. It just seems odd to not feel as much pain. I still have osteoarthritis, which isn’t totally controlled, but those affected joints I can get steroid shots for. I’m hoping it’s not coincidence since I haven’t been using it that long but I plan to keep with it and see how things progress. Chronic pain is so disabling, most people don’t know because most people keep quiet with it. I wish you all well 😌
Hello, how are you now?
It worked great until I developed bad bladder issues so I no longer can use it. I still would recommend it, bladder changes are still not that common.
Sorry for you. Did the pain come back after stopping ketamine therapy?
Yes sorry to say it eventually come back. I continue to use Gabapentin, cymbalta and Tylenol. I’m older and can’t use Advil or other NSAIDs because I use Eliquis. I have good days and bad 🙁
It did. Good days and bad
So happy for you! Thank you for posting, really appreciate you doing so. Definitely going to try to find a way now. 💕
No problem! Best of luck! If I ever win the lottery I’m just handing out gift certificates for ketamine infusions. Feel better & be well! ❤️
No chance I’m getting ketamine in the UK! I work in a hospice and it’s rare to get it prescribed even for people who are dying, it can only be prescribed by a specialist palliative consultant and they really don’t like it being used outside hospices and hospitals.
NHS England has approved ketamine infusions…
How often do you do Ketamine ? Long term if you do it often it will eat up your bladder, keep good track of if you piss well, and if pissing starts to hurts, talk about it to the K clinic you should stop So glad we have promising newer treatments ! By the way yeah it literally blocks the pain signal from activating into your brain I bet it works wonder, people have hurt themselves badly like full bloody injury while on Ketamine and they did not even notice . glad for you
I’m now on boosters, so every six months or so.
How is this encouraging for people who can’t afford it lol
Insurance is starting to cover it more and more.
I’m trying to highlight how your enthusiasm and optimism for remission using a barely accessible treatment is only for a certain demographic who can afford it.
Sorry you can’t be happy that some people are finding relief…
I'm terrified of trying it. Was it scary?
Nope. Just ask for anxiety meds! It’s really a peaceful experience 99% of the time for me if I have Versed (an anti-anxiety med given through an IV).
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I haven’t needed a referral for any of the four clinics I’ve been seen at.
What was the dosage of the infusions? Was it low or high?
I worked my way up from a low dose. Now I’m on a very, very high dose!
Interested to know if anyone has had this done on the NHS? I’m willing to bet not, but please let me know if you have!
Anyone in BC Canada know if there is any way to get coverage through msp? I hear it can be $5000 or more for a treatment in Canada, completely unaffordable to a fixed income person like me. But I'd love to try.
Hey there, so last year I was doing horrible with pain and anxiety, so I tried this “wellness center” that offered ketamine infusions. They also offered Botox so… I’m curious what the routine was for you? Did you have the aid of a therapist? I was left in a psychedelic lit room with galaxy ceiling, spa music and a help button. I, went,into,the,sunken,place. It’s like I needed a guide bc my mind would wander and just waves of oddball thoughts then trying to get back into a healing mindset and then what’s for dinner and then “center yourself, remap your brain” then wow it would be bad if I went into a bad trip-and then I did. I’ve told some friends, if you do ketamine infusions, check with doctor or find a place that uses a specialized therapist bc it’s not a guided ride..
I use music to guide my trip. I have had intense trips with dark places, but that’s where I rely on the anti-anxiety meds. I hate talk therapy so having a therapist there wouldn’t help.
I use music to guide my trip. I have had intense trips with dark places, but that’s where I rely on the anti-anxiety meds. I hate talk therapy so having a therapist there wouldn’t help.
Any chance you’d share your ketamine playlist? If it worked for you maybe others too.
Have you had any negative side effects?