IamA 20 year old male with CRPS II (42 out of 50 on the McGill Pain Scale, about equal to the amputation of a finger, except it never goes away). Ketamine saved my life.

When did it start ? How was your childhood ?

It started after I fractured two joints in my left foot. I can't tell you exactly when they broke because I honestly don't remember. What I can tell you is that I ignored it for a couple weeks thinking it'd work itself out and I was just being a pussy, but it eventually got infected (Osteomyelitis - infection of the bone and surrounding soft tissue) and I had to do 3 months of IV antibiotics through a pic line.

After the surgeries to debride and remove the broken off bone fragments in my foot, and 3 months after that when the infection cleared, the pain still remained. That's when my podiatrist recommended me a physiatrist who eventually recommended me a neurologist and he started doing tests to figure out why I was in more pain than I was initially after the incident / surgeries. They did some sort of circulatory test where I ingested a dye and they watched my blood flow under an MRI or something like that (fuzzy on the details) and said I might have something more serious. Then they tested my responses to electrical stimuli and eventually by process of elimination narrowed it down to CRPS based on the type of injury and the type of pain I was describing (neuropathic pain tends to be fairly unique in feeling).

edit: my childhood was alright. I grew up in the south in a fairly religious home (ironically, ended up an atheist). I was intelligent, but not particularly socially adept or athletic. My mom died about a month before all of this happened. I'm not sure why, but I personally feel like the emotional shock from that translated into my physical pain. It was rough dealing with both at the same time. I contemplated and eventually attempted suicide. Glad, I failed. I've had some amazing experiences and met some incredible people since then and I'm very hopeful about my future!

I don't know much about your disorder, but reading wikipedia it seems a possible (and obviously extreme) potential solution is amputation. I'm wondering if there was a point while you had been going through all this where either you or your doctors thought about that as a serious resolution to your problem. Or were you holding out on to the hope that other medication would be able to help without resorting to such extremes? Really what I'm wondering is did it get so bad, that you considered going that far on the chance that it would help?

Amputation was one of my biggest fears. I knew there was the potential for it since I first got the diagnosis. I had thought about it because of the insane amount of pain I was in, but every time I brought it up to either of my two main doctors (neurologist and anesthesiologist), they both said that it likely wouldn't make the pain any better and might increase the risk of it spreading further up my leg. Add to the fact that I've been a type I diabetic for just over 10 years now and it just wasn't a viable option. (Diabetics tend to heal ridiculously slowly and are very prone to infection. For instance, I had a super tiny piece of glass cut my hand fixing someone's iphone like two weeks ago and the cut which is probably less than a centimeter or two in length, still hasn't closed up).

edit: actually, now that I think about it. A surgeon and a podiatrist both brought it up to me after they noticed the infection wasn't going away in a reasonable amount of time. They didn't want it to travel up the bones of my feet and into my legs as recovering from an entire leg amputation is an entirely different ordeal than recovery from just losing a foot. Glad I didn't let them and got a couple more opinions on the issue. My foot looks a little odd. There are musculoskeletal deformities for sure, but it's there and it's mine lol.

With all those medications how did you not sleep your day away from the drowsiness? How do you counter act all the medications side effects? Do people judge you for taking pills so frequently? Can you work? What's your typical day like?

Tolerance. I didn't just start at those doses and with all those meds. They were added on by my neurologists, anesthesiologists, and psychiatrists gradually. When it first started I was mainly taking 15-30mg Hydrocodone daily along with 50-100mg of Tramadol. As tolerance built and my condition worsened, I required more meds to achieve the same analgesic effect, hence the eventual laundry list of meds.

I did sleep most of my days away and I have serious trouble remembering anything but the most critical periods of that time of my life. It wreaked utter havoc on my emotional well being and social life.

I dropped out of college, lost my independence, and moved back in with my dad when all of this happened. I would get tons of glares in public popping pills, but I didn't really care. It was all legit, so what was anyone gonna say to me? If they were in my spot at that time, they'd have probably been doing the same.

During that time of a little more than a year I couldn't work or go to school. I was pretty much bedridden and would just watch netflix and play video games most of the day. I started doing yoga around the same time I started ketamine treatment and found it exceedingly painful at first, but highly beneficial. I still do yoga and have found the activity helps a great deal with my pain levels. I still have trouble walking at anything but a standard pace, but the yoga / ketamine combo has pretty much removed my limp at this point. Walking around with a serious limp at 20 sucks. I'd get more stares because of that than the pills. Oh, and my pupils were constantly pinpoint because of all the opiates so people thought I was always insanely fucked up, but because of tolerance, most of the time I felt 100 percent sober.

edit: Nowadays, I fix phones, tablets, and computers for a living. It's something to help me save till I get back in school and I don't have to be on my feet all day.

What helped you turn your life around?

ketamine. overnight. saved my life.

I can't state that enough. It still to this day seems crazy to me that of all things that was the one that turned everything around. Especially after all of the other crazy shit I had tried to fix it with.

Ended unbearable physical pain, helped me come to terms with everything that had happened in my life since being diagnosed, and ripped me out of the clutches of both addiction and depression.

If this ama helps even one person with CRPS seek out Ketamine treatment and it works for them the way it did for me, I will have felt like I had a positive effect on the world in my lifetime. It could very well be the most important thing I ever do. I had never even heard of Ketamine before CRPS; I honestly think this drug has so much more potential than the medical community gives it credit for. I just want to raise some awareness on the monumental impact on one's life that can come out of experimental treatments for rare diseases.

We dealt with many ketamine patients at the hospital I trained at. Our former chair of Neurology was a pioneer in this field but he retired a year ago. The several patients i have met swear by it for their RSD/CRPS.

What was his name? Even though he's not active anymore, I'd love to read some of his literature on the topic some time.

This is more personal, but... Did the patients you talked to who had used Ketamine find it as powerful and life changing as I do? Were you ever able to talk with them about their experiences?

https://www.drexelmed.edu/Home/AboutOurFaculty/RobertSchwartzman.aspx

I was working the ICU so I was only a peripheral part of their management which was mostly done by Neurology residents. The few I have spoke to stated it was as if their debilitating pain was suddenly resolved for up to months at a time. I never really got to dig into the effects it may have had from a mental/psychedelic standpoint however. I would have liked to though but time for that kind of conversation is very scarce as a resident.

Oh, no way! He was my first guess! Now i wish i would've said something lol. Anyway, I think it's really cool I'm talking to someone who studied under someone who as you said, broke ground in the field / treatment protocol. I wish you the best, thanks for saving lives on the daily as a medical professional!

Did you get this ketamine clinically, adminstered by a physician, or did you just get some street K and self-medicate?

this has been answered. I don't really like the term street k, though, I suppose that is what it is. My stuff usually comes in sealed vials. It's the exact same stuff I'd be getting under medical supervision.

If I could've gotten it from doctors, and believe me, I tried, I would have. Instead they preferred me doped up on opiates, benzos, anticonvulsants, muscle relaxers, anti depressants, and anti psychotics. Can you see why I took matters into my own hands? I mean, aside from dosing K every three months or so now, I only take ibuprofen and live a perfectly functional life. I like that version of me better than the heavily sedated / medicated version.

Yeah. I get it.

So on one hand.. I believe in the absolute right of individuals to improve their quality of life - and you've absolutely done that. It's bullshit that you can't get "real" medical support for something that obviously works.

On the other hand - you must recognize that this type of self-medication is a dangerous road for many people. The discussion is somewhat deteriorating into "Yeah man, try some shrooms to fix that" or whatever, and that's misleading at best.

I want you to know I agree with you one hundred percent.

I recognize it is an extremely dangerous road and I'm not advocating the use of powerful drugs to anyone who hasn't thoroughly done their research and weighed their pros and cons as a treatment for their current illness.

I want to make it abundantly clear that my statements regarding 4 aco DMT earlier were not in any way based in experience with either TNG or any perceived "healing" effects of mushrooms or their derivatives. It was merely a stream of thought I decided to write as the poster had already mentioned shrooms as a possible solution to his mother's issue, but also noted her aversion to the actual mushies themselves.

I think a lot of drugs have heavy potential for abuse and caution must always be taken. Psychadelics in my experience have less potential for addiction, but without a doubt they can cause people to do very dangerous things, thus things like a trip sitter are wise.

Ketamine, opiates, and benzos on the otherhand, are all indisputably highly addictive and if someone chooses to use any of these substances they must be aware they are fighting an uphill battle against addiction. Ketamine being primarily psychologically addicting, while opiates and benzos tend to integrate psychological addiction and physical dependence. No doubt about it folks, these drugs are dangerous. They are to be used in dire medical circumstances only and I could not recommend them to anyone for any reason under any other circumstances.

I don't know where you are located but I get nasal and sublingual K for my pain prescribed by a doctor. It is about $120 for a bottle of 1800ml. I take between 3-6ML every 3 hours as needed. My doctor prescribes up to 50 bottles at a time.

I also get inpatient K infusions twice a year.

When you buy it on the street is there anyway for to be sure it has not been cut with anything else?

hey, sorry it took me so long to respond. I saw your message on my phone originally, but couldn't reply at the time.

I'd definitely be interested in any info you have on getting insurance to pay for ketamine because I could never get anyone to take me seriously when I suggested it despite the ridiculous number of drugs I was on. They wanted to try a spinal cord stimulator before ketamine and I just wasn't down for that. Especially, after I tried K and saw how well it worked for me. I don't know how many mg are in a ml in your solution, and I'm used to mg for measurement, but that honestly sounds pretty incredible. My doses tend to be few and far between because of availability, but I notice after effects for pretty long periods of time now.

I'd be down to join your facebook group, link it to me in a message and I'll check it out.

What made you decide to try Ketamine? Was it suggested by your doctor(s), or did you find it on your own? Do you get it via perscription or by "procuring it" on your own?

I read a ton of papers on how it could spontaneously resolve my innermost struggle, chronic nerve pain in the form of CRPS. I had already received the CRPS diagnosis from multiple doctors, had been on an absolutely insane list of drugs, and tried committing suicide because I thought there was no way out at that point. I actively tried seeking Ketamine treatment in the medical community and was repeatedly told it would be ludicrously expensive (couple grand if i could get my insurance to cover it, 10+ if I couldn't). And that was only if I could find a doctor willing to take me in as a patient for either infusions (hard) or a script (harder). I had many doctors tell me that it was the "final solution", only to be tried if everything else failed. Well, everything else did fail and they still weren't helping so I took matters into my own hands.

One day, while I was at a new friends, he casually mentioned he had some ketamine. I told him about my condition and how I'd been trying to get into treatment with that specific drug for months at that point to no avail. We tested it to verify it was ketamine with a reagent test kit and that was when we set up a trip safe room in his house, got comfortable, and I did my first 80mg's. From that point on, significant breakthrough in my condition (like, from 8 or 9 constantly to about 1 or 2 regularly with peaks to a 4 maybe). Odd story, I know, but sometimes the truth is like that. I credit him with saving my life, and I've told him that before. He found it odd at first, but has come to realize it as true, this was a huge obstacle in my life that he haphazardly helped me overcome.

This was my question because I work with a lot of acute/chronic/palliative pain cancer patients and ketamine, though not one of the first drugs introduced for our patients, is often added as an adjunct when we can't seem to control severe pain. I work in a Canadian hospital so there's never an issue of procuring the drug, only if it is the right thing for the patient.

I'm so sorry that it wasn't that easy for you. Your AMA is so thorough and interesting and reading it will make me advocate ketamine more for my patients that suffer nerve pain. So thank you.

It seems that through your research you've found that ketamine has worked for others with your condition. Why do you think it's not considered for therapy in your medical community? Simply cost? If doctors are suggesting marijuana why not suggest finding ketamine outside of a medical facility as something a patient could seek out on their own?

Also another question I had was are you still taking things like pregabalin or amytriptaline? Or have you been able to wean off your other meds (non opiates) as well.

And reading further down I noticed a debate about the safety of using illegal drugs to treat illnesses. I understand the view point of being educated about it and weighing the pros and cons of addiction but when it comes to serious medical issues I can't help but be pretty much 100% behind using whatever the hell works in order for someone to have some sort of quality of life.

I don't think anyone in these situations takes something like ketamine as a first line "hm let's see if this works" type of solution. These people have been to hell and back trying to fix a problem, have tried everything they can think of or their doctors can think of and finally as a last resort decide to try something unconventional. And the risk of "addiction" or "abuse" probably doesn't even come close to the shit they're dealing with already.

So that debate seems a little irrelevant imo. But I guess it's good to bring it up in a mass forum just as an aside.

Anyway thanks for the AMA!

CRPS is kind of rare around here. Out of all the doctors I was treated by only my anesthesiologists and neurologists were familiar with it right off the bat without me having to explain anything. Thus, treatment options are sort of limited as they have little to no experience with treating the disease. I suspect this is why Ketamine is so hard to source medically even with a confirmed diagnosis of CRPS and all the medical literature backing it up as a valid treatment option.

Cost is another factor. For a while I was considering flying to mexico city or germany to do a ketamine "coma." Where they give you high dose ketamine, 80mg/hr IV, for about a week in an attempt to reboot your central nervous system. The procedure has a remarkable efficacy rate, however, flights and stays included, it comes out to about 50 grand. Infusions are around 10g's per 4 hours at 40-80mg/hr according to the last time I checked with my insurance, but the doctor's visits before and after end up putting it more around 12-14.

I am not taking pregabalin or amitryptaline or anything other than ibuprofen nowadays. I came off of every single drug on the list in the OP within a month of first experiencing the relief Ketamine offered me and have had no trouble remaining free of them. I feel vastly better. Much more like myself than I ever did under the influence of all of those medications. I've held onto some lidocaine patches and lidocaine cream for days where I'm on my feet a lot, but I rarely if ever have to use them. In fact, I can't remember the last time I did use one.

On the topic of Marijuana, I'd been a daily smoker since I was about 15 years old so I used MJ before I had chronic pain. My use just increased when I was dealing with chronic pain. My doctors were okay with it (they drug tested me every month because of the opiates I was being prescribed) as long as I was up front about it with them, so I was. It really would help me get through those stretches where I'd be 2-3 hours into an instant release opioid and still in pain, already wanting to reach for that next IR. I'd smoke a bit and it'd bring me down to a bearable level where I could wait it out till my next dose.

I agree with what you said in your last paragraph a lot. I didn't hop into this thinking ketamine or opioids or anything else I was on was going to be a solution, I was just going down a progressively more serious list until I finally found something that worked. It was either continue going down that list or kill myself. Plain and simple. I've mentioned in this thread that I had already tried once and I'm convinced had it not been for my miraculous recovery with ketamine, it would have only been a matter of time until I tried again.

Living with something like this was complete and utter agony. You're constantly exhausted, yet you can't sleep. When you do sleep, you wake up in withdrawal and in worse pain than you went to sleep in because your medication has worn off (you may sleep for an hour or 18, its always kind of a gamble). You're never hungry, but you have to eat because otherwise you won't be able to stomach the pills they're giving you. You're constantly sedated and barely cognizant of what's going on around you and yet expected to maintain a relatively normal life and remember the 20 some odd pills you have to take at various points throughout the day. Everyday is the same and you see no hope for a better future because you relive the same hell over and over again. You've got physical and psychological pressure slamming you in every direction.

I wouldn't wish it on my worst enemy. You seem like you get it though, seeing people in similar states daily, so thank you for the support and good luck with your patients!

I'm glad you finally found something that works for you!

Do you know why prescription Ketamine so expensive, but it's available on the street for so much cheaper?

Thanks =]

I have no idea, but it's not exactly cheap or easily available on the street either, honestly.

It's just easier and cheaper than within the medical community lol.

It shouldn't be considering the patent on the drug ran out like 40 years ago and it's used commonly in veterinary medicine, but for some reason that's just the way it is.

I will say one thing. Racemic ketamine and S-isomer ketamine are unique beasts. Kind of like sativa vs indica when it comes to weed. S-isomer, of which there's only one brand to my knowledge, Ketaset, is more potent, much cleaner, and with less hallucinations. Racemic on the otherhand tends to have a higher bodyload with more hallucinogenic like effects and less painkilling / anti depressant ability in my experience.

It's 20 euros a gram here, available on every third corner. Big Ketamine enthusiast myself, saved my life as well (treating the depressive side of Bipolar-II disorder).

I'm sorry to hear it's so hard/expensive to come by. More people I know owe their quality of life to Ketamine than I can count.

haha, its significantly more expensive here. at least 2-3x what you're paying. Luckily, I can make a gram last me a couple months if its used strictly medicinally.

What motivates you to keep going? Pain and supressants all the time sounds utterly unbearable. and you are a superhuman to have continued living as normally as possible through it all. What is your motivation.

P.S: If you have freetime, you should watch Naruto/One Piece if you dont already. It'll fill your freetime with tears, on the edge of your seat, ear to ear grins, rolling on the floor laughing moments :)

I'm not really sure. I guess the fact that I literally thought I was going to die and then randomly, one day, my life went back to normal. It gives you such an appreciation of the little things that I don't think people who haven't been there can truly understand it.

During all of this, I was a very different person. Downright miserable and very noxious to be around. I won't lie, I felt like a newborn child, like I was either constantly crying or screaming. I had trouble deriving happiness out of anything. I had no hope and I was angry with everyone and everything. I felt like the world owed me something because I had to go through this and no one else did.

I was diagnosed with major depressive disorder during all of this, but I don't ever think I "really" had it. I think the constant physical pain (plus, like you said, all the drugs) were the catalysts to my mental state. After my first dose of Ketamine I came off of everything else within about a month. Since then I haven't looked back and I feel a million times better. I'm content with myself for the first time in a long while, I've got positive relationships in my life, and I'm working toward a better future for myself. Oh, yeah, and I have my health back, lol.

For me, it was almost as if Ketamine solved a two-fold problem.

1. CRPS. Once the pain was gone, I had no reason to be upset or angry any more; it felt like I was given a second chance at life. I actually remember the day after my first dose sitting out by my pool with my feet dangling in the water laughing and crying at the same time because I just knew it was all over. I just knew that I had finally found a solution to my problem. Normally, I would have been writhing in pain with my foot in water, but that day it felt just like I remembered it feeling before all of this happened. Like nothing. It was cacophonous. Probably the happiest moment of my life, ever, hands down.

2. Ketamine has medical uses for major depressive disorder as a glutamate regulator and NMDA receptor antagonist. I believe both of these factors also helped push me out of the depression I was in.

edit: my friend keeps telling me about Naruto but for some reason I haven't gotten into it yet! Maybe I'll watch an episode or two on your recommendation x]

Although a hero to me, was originally someone who could help others, you seem as heroic as any Superman. You are truly an inspiration. We have heard of Prisoners of War who come back with a few fingers chopped off in interrogations and that's their breaking point. Of course, I don't mean it shows they are weak, but it shows you are even stronger than that. Honestly, if this ever happened to me I think I would do a bunch of YOLO things while on meds and then just jump...

The world has a dark side and a bright side, and this is a reflection of our souls. Your soul is too brilliant for me to see a speck of darkness. Sure you needed drugs to get back into the game, but we ALL need help so you shouldn't credit just the drugs. Give yourself some credit that you made sure there was a game to get back into despite all that, and keep shining my friend :D

Completely off topic: Naruto is a story about a boy who is severely discriminated and who never stops believing in his only friends so that one day he can prove to everyone that he is worth something in this world. He has great charisma, brutal honesty and a comical love life. It's really quite an inspiring show/manga, and that said, don't visit the /r/naruto quite yet. You'll be put off by all the unknown references and possible spoilers. Enjoy the show :)

Thank you so much, you can't possibly imagine what it means to me to hear someone say that.

Oh! and I will watch my first episode tonight since I can't sleep anyway. I have trouble getting into anime / manga, but I really liked your description so who knows!

I had crps/rsd in my right foot that started from no reason a few years ago. It was the most miserable I have ever been. I could not, walk the pain was beyond 10 and I was very depressed. It took 4 months to get back to my normal self luckily 6 sessions of lower lumbar worked and has stayed away so far. My next step was ketamine, I am glad you have brought this subject up! Thank you for your honesty.....

I'm happy to hear the nerve blocks worked for you! That's great!

Sometimes I feel like CRPS patients are like the never-nudes from arrested development. Like one day we should all meet up so we can all go, "There are dozens of us!"

I've talked with other patients online, but I've never had the opportunity to meet one in person.

ever tried marijuana? Pure indica CBD prominent strains?

Serious Question.

http://www.braatah.com/refractory-crps-patients-discontinue-opiates-with-cannabinoid-treatment/

read OP. Smoked 2-3 grams daily throughout all of this.

My favorite strain is girlscout cookies because of its high CBD content.

Oil tends to be better in my experience (more potent, easier to dose, takes less time to dose, less smell, more portable, etc) so I aim for that, but I'm not in a medical state so it can be tricky obtaining it.

edit: I actually tried getting nabilone a while ago but none of my doctors were bout it because they already knew I smoked weed and was on a whole bunch of other stuff too. thanks FDA!

i was curious about your strain preference. you seem knowledgeable lol. but use leafly my brother. you can find what you need.

i know im the one doing the ama, but uhhh, its 4:20am over here on the east coast and you've got me kinda curious, what's your favorite strain? x]

Ever consider amputation? Sorry, I know it's super extreme, but a fake foot might be an upgrade to what you are going through...

has been asked and answered earlier in the thread.

TLDR: It's been brought up, but nah, glad I still have my foot.

I read through all of your posts and surprised no one has asked if you have ever K-holed?

(Certainly not fun and overall wouldn't recommend to anyway to go to that point)

Yes, I have k holed before. Twice actually. One I can remember vividly, the other is just a faint blur. The first time I am quite fond of. I have never, in my entire life, felt so connected with the universe.

The second time was a disaster and I realized I should never chase the experience ever again because its a dark path that leads to nowhere.

K holes are simultaneously pure good and pure evil to me. Good in that they offer a momentary glimpse of what appears to be the universe at large. A window to greater understanding in a way. However, they can be evil in that, nothing will ever match that first one. All of your wonder and understanding peaks on the first one and each time after leaves you more frustrated and asking more questions than you originally came in with. Ketamine is a cruel seductress to quote the words of the wise wife of John Lily.

You mentioned Zofran as being one of the best drugs. Can you say how you arrived at that conclusion?

I meant its one of the best anti emetics. It doesn't taste like anything, doesn't cause any side effects, and does its job remarkably well.

Thanks for doing this AMA, it's crazy you have this and are only 20 :(

My question being is your condition similar to Trigeminal neuralgia ? or 'the suicide disease' ? Just wondering since you said it is nerve damage. My mom has very bad MS and for a while she was getting insane amounts of pain like the ones you describe and this is what the doctors around here (ontario canada) thought she had.

Like you they gave her lots of opiates among other things. She still has pain all the time, just the past couple months she hasn't had the unbearable pain you've been describing. Her pain was in her face apparently where the brain sends signals through nerves around the jaw? anyway the way I understood it was anytime she had to think about doing something the thought process transmits from her brain to nerves causing pain to even think.....

Do you think Ketamine is a possibility I should suggest?

I'm only knowledgeable about CRPS, so any advice I give is merely the advice of a twenty year old who's seen a lot of doctors, not that of an actual medical professional.

Ketamine worked wonders for me, but I believe mainly because it is a fairly well-documented, yet under performed treatment for two things I was diagnosed with. CRPS and MDD. I read a lot about it's effects on both before I tried it (for months before, actually, since it was pretty hard to get a hold of). I'm not sure if it would work for Trigeminal Neualgia or MS, however, I will say that she has my best regards as far as getting through her pain and that she should bring up any and all possible solutions she can find to her doctors because she's the one who's got to be actively seeking them, as they will just throw pills at patients and see what sticks.

I noticed that when I came off of opiates I had significant rebound pain for a couple weeks after (worse than usual pain scores + withdrawal symptoms). Depending on her dosages / dosing regimen this could be a factor. To people who like to stay on opiates to manage their pain, I'd suggest cycling your tolerance a bit by not only switching opioids, but also by taking breaks. Even if she has to take more of her other meds, taking her IR or ER medication out of the equation for a couple of days (under doctor supervision of course), might do wonders for her pain scores. DXM, Tums, and Cimetidine were all crucial to getting the most out of my opioids to me by keeping my tolerance low and potentiating them.

My heart really goes out to your mum. TGN was one thing my doctor's always told me I should be grateful not to have. It was bad enough having constant severe pain in my foot, I certainly wouldn't want it in my face.

Thanks for the reply and the advice. And you're right all they did was throw more pills at her and send her to various other specialists over a wide period of time.

It is hard to see her go through the pain - especially when I try to suggest almost anything I think could help. I have even suggested medicinal marijuana ( and so did her team of doctors at one point ) but shes very old fashioned and against it (also mushrooms, since at one point I wondered if it was cluster headaches). I have told her about potentiation as well, also reading that some diphenhydramine (benadryll) helps it too, Unfortunately that would not react well with another medication. It gets frustrating as I'm sure you're well aware.

Anyway thanks for the kind words, I am very happy to hear you have found something that works for you. It is a great thing.

medicinal marijuana is a wonderful option. If you can convince her to try it a couple times, I'm almost positive she'd find it useful. I certainly did. and yes, I liked to use diphenhydramine as well, but I found it too sedating in combination with my other meds and seroquel took adequate care of my opioid histamine response (the itching).

This is definitely outside of my realm of expertise so imagine the cheshire cat is telling you this, but try researching 4 aco DMT. Its a psilocin pro drug if I remember correctly that can be ingested in capsules (thus not technically shrooms), but should have the same desired effect (in this case, pain relief). She will trip on a full dose, however, so I'm not sure if a full dose is the answer, perhaps microdosing? a full dose is around 25-30mg, so maybe 5-10 percent of that administered once or twice daily may be a good place to start.

Wow never thought of that as an option, I have thought about trying it myself when years ago I was into the n-bomes and 2-C series but it had never crossed my mind :|

I'll definitely be looking into it for any medical potential, she would be much more open to a capsule than eating a big ol' bag o shrooms. Not sure how much she'll agree with the idea but it can't hurt to ask. Thanks again buddy

np, glad I could offer a fresh perspective. I obviously believe in hallucinogenic medicine. Would've laughed about it a year or two ago, but now, nothing could convince me otherwise. =]

My wife's grandmother was diagnosed with Trigeminal Neuralgia and it was hard on her. She was in her 80's. After about a year of her "jolts" and being referred to doctors all over she saw a specialist in California that did an intensive radiation therapy on the nerve. She had a lot of numbness in the side of her face, but she said it was worth it to have relief from the pain. The nerve re-generated after about a year, though, so it wasn't a permanent solution. Hope she gets some relief.

oh the jolts. Yep my mom gets those but she calls them attacks, all she can do is lay on her side and wait it out as anything else causes pain. Sad to hear the nerve regenerated, We have looked into that and if money wasn't an issue I'm sure we(she)would have tried it already. edit, can't imagine how hard it would be on an 80 year old :( she must be a strong woman

I hate how in the U.S. (and everywhere else I've seen really) its your wealth that dictates the amount of health care and compassion you're given.

Why do rich people deserve to live more than anyone else? :<

I feel you on that one believe me. I know Canadians like to boast about 'free healthcare' but it really doesn't cover things like that (surgery on the nerves in her face) or else she would have already done it. I mean we would have had to spend over $500 on 1 appointment to see if the doctor thought she should do it (obviously unless she didnt have it he'd say yes) but when we wouldn't have the rediculously high amount for the actual procedure.

It really sucks. Luckily as of lately she's been doing better and been able to even go out and do things like go to the beach (even though she shouldn't because of her MS) and take the dogs out now and then.

If you haven't , I suggest watching the first few episodes of the anime called "Monster" . The subject matter is basically just what you described about richer people deserving to live more, the show almost brought me to tears at one point but it's great........been meaning to watch the whole series

I'm sorry to hear that. That's a very rough spot to be in, and I can relate. Just remember that hope is always out there and you never know what tomorrow will bring. I've always liked the saying "it's always darkest just before the dawn."

I remember when I was trying to get ketamine prescribed to me or a spot for infusions I once waited two months for the appointment with the doctor (one of the only ones in my area who has a couple patients for this exact type of thing). I paid 750 dollars out of pocket to see him and after about 45 minutes of looking over my charts and speaking with me, he wasn't convinced my case was "severe enough" to warrant such an "invasive" treatment and sent me on my way.

After that, I pretty much gave up hope until the solution came and slapped me in the face one day by sheer dumb luck.

I'll check out Monster sometime. thanks for the suggestion, x]

Sorry I am late to the party and I apologize if these questions are repeats (the comments are very long and I don't have time to read them!).

Can you ever drive or are you stuck with public transit and getting rides? (due to all the medication)

Also, are you or have you developed and ulcers or stomach issues from the amount/constant ibuprofen?

They aren't! No worries! Better late than never, right? lol.

Anyway, yeah, actually. I'd drive on that list of meds to and from doctor's appointments all of the time. Sometimes 45 minutes each way on highways with heavy traffic. I never had problems driving on opiates. Ironically, about 4 months after I got clean, I got into my first car accident, lol.

I have developed stomach bleeding because of the amounts of NSAID's I am required to take. Ibuprofen does it noticeably less than Aceteminophen, Naproxen, or Aspirin, though. I mainly noticed it when I was taking IR opioids as hydrocodone / oxycodone are typically packaged with aceteminophen. Even though, I typically got the 10/325 formulations (highest opioid concentration, lowest tylenol amount), I would still notice stomach bleeding. Omeprazole sort of helped, but yeah, it'd happen every couple of days. Now that I don't take opioids, it still happens, but not as frequently, maybe once every week or two as opposed to 2-3x a week.

Is there anything you can do to help prevent your stomach bleeding? such a sad thing about constant medications :c

omeprazole is an over the counter proton pump inhibitor that my doctor made me take while I was on opioids for that very purpose. I take it on days I notice bleeding, but other than that don't use it regularly anymore.

and nah, man. Trust me, after you've experienced constant nerve pain for months on end, a little stomach bleeding here and there is cake. I'm very happy with things the way they are now. x]

Given that it was a neurological disorder/damage, have the doctors considered nerve blocks/RF ablation?

4 lumbar sympathetic blocks were done. No results.

Never had RF ablation done. Was hooked up to a TEMS unit a couple times though, didn't put a dent in it even when they cranked it up way past what they were expecting would work.

I had neuropathic facial pain (like trigemnial neuralgia only worse, both sides) and the nerve blocks have been my saving grace. Of course, I'm blessed to live within an hour of Stanford, so it took some of the top docs to figure this out.

The RF ablation might be interesting as the first level "stuns" the nerve thus putting the pain to sleep.

Glad you found a path to relief! Stay strong, even when the pain gets you down.

Thanks for the support!
Same to you, though it looks like we've both found our solutions =]

Have you ever tried MXE the ketamine analog?

nope, I'd love to some day though. This was asked already and I answered a bit more in depth then.

edit: This was apparently asked in a PM so I'm editing this now that I've realized it so anyone else reading this can see my answer.

I've read about it extensively, but never tried it. I'm highly interested in exploring its longer half life, double potency, more noticeable microdose effects, and better safety profile than ket in regards to the urinary tract.

What kind of dosage are you talking about?

You mention that you can definitely get high off it, which is absolutely true. One can hit hallucinatory and almost spiritual experiences with ketamine.

microdosing I've gone as low as 10-20mg every 2-3 hours

therapeutic dosing - 80-120mg over a span of about 30 minutes.

Initial / heavy dosing - 60-100mg per hour for 3-4 hours straight.

What were you studying at uni? Was it of any help in knowing what was going on at physical or chemical level? Have you changed your mind about what you want to study?

I started as Computer Science and switched to Digital Media with a specialization in Game Design when I was a junior.

Nowadays, if/when I go back to school, I want to study something that involves neuroscience, chemistry, or pharmacology, but I'm not sure exactly what or what sort of degree I'd even seek to help me along that path.

Nice man! Sounds good as, I myself am currently doing a major in chemistry, and mainly med-prereq units, it's pretty good. Any idea in what type of chemistry you'd like you pursue potentially?

This is gonna sound pretty typical considering what I've talked about here, but... I wanna help develop better drugs for palliative care and chronic pain patients that actually take their needs into account. i.e. minimally addicting / minimally tolerance building.

Having had first hand experience with a lot of the drugs on the market today, I find a lot of them lacking and if there was anything I could do to ease someone's passing on or make their current stay on planet earth more bearable, I'd absolutely love to do that.

What about you? Planning on being a doctor of some sort, I'm assuming?

I have been extolling the virtues of ketamine for therapeutic reasons for quite a while now. Unfortunately, it does not seem to be available in non-metropolitan areas. I would love it if this treatment were more readily available, but from what I understand even asking about it in a lot of cases gets a patient marked as "drug seeking," and turned down with a flat no. How did you get started with ketamine treatment? Did you start off using it recreationally then mention it to your doctors? I am afraid to ever mention "Hey, such and such "street drug" helps more than these prescriptions" because of that drug seeking stigma I've had attached to me for pretty much my entire adult life. :(

I apologize if this has been answered.

I'm glad there are other people out there who recognize the benefits of this wonder drug. Unfortunately, I've had much the same experience as you in dealing with the medical community. It doesn't help that I've got like every opiate under the sun and mental health issues in my chart either. I've pretty much given up on getting it legally, but if my pain ever goes back to how it was, I will give it another shot.

How long were you in pain before getting diagnosed with CRPS? What specialist determines that you have this condition?
I've had pain in my right ankle/foot since I got into a car accident in 2011 that tore a bunch of tendons and ligaments in my right ankle. Had arthroscopic surgery seven months later to clear out excess scar tissue, it's been over two years since the surgery and I'm still in pain day to day. The orthopedic surgeon who did my surgery has nothing but PT prescriptions for me and going back on pain killers is something I'm reluctant to do. I just want to pop my foot out and replace it with a new one :(

Well, the initial incident occurred in September of 2012. I had my surgeries about a month apart in January and February of 2013. I was on a pic line to clear the osteomyelitis till about May of that year. I received the diagnosis for the first time in April (so 6 months post inciting incident) when I got a c-reactive protein test back stating that the infection had cleared from my infectious disease specialist, however, my pain was worse than ever. That was when I was referred to a pain management clinic and the anesthesiologist there consulted with both my podiatrist and the neurologist I was seeing and gave me the CRPS diagnosis. After that they did further testing and imagery to narrow it down to type II.

I don't recommend opioids for chronic pain, but I feel like a bit of a hypocrite saying that because I used them for roughly a year to combat chronic pain and I couldn't have imagined life without them. I will say that, in general, I feel better without them, however, I also had the added benefit of ketamine removing the original problem, thus my ability to objectively state whether or not I would've been able to handle the pain without the opioids is compromised.

edit: I get the dissociation you feel toward your foot and I sincerely hope you find some resolution. I used to have dreams of cutting off my foot a lot. at least 2-3x a month.

I am an Acupuncturist, I am curious as to how your acupuncturist treated you. What was your response to it? I'm currently trying to get into medical school to be a neurologist as well and I wonder as to what drew you towards acupuncture. Thanks

Acupuncture surprised me. It is remarkable how simple things like needles and pressure points can provide such enormous benefits in such a short time. I would have liked to continue it, however, at 60 dollars a session and with relief generally lasting only 3-4 days after the session, it became cost prohibitive rather quickly.

Have you tried hypnotherapy?

yes, once. I found it very relaxing and I came out of it feeling like I just popped a benzo, but it didn't provide any lasting benefit. I've also tried biofeedback and found that to be more effective than hypnosis, but still generally lacking. It did teach me to control my breathing and heart rate remarkably well though which comes in handy in pretty much all situations.

Very interesting, too bad it didn't give you a lasting effect. How about Neurofeedback? Its a technique were you learn to regulate your brain activity much like you learn to control your heart rate during biofeedback. I remember at Uni they told us it was brand new stuff to treat pain patients.

I really commend your strength and openness! May you live long and prosper!

I have not tried neurofeedback. I was not aware that it even existed. I feel like my biofeedback psychologist may have attempted to integrate elements of it into his biofeedback curriculum though, as that sounds similar to what we would do in our "training" sessions. I did biofeedback for an hour a session twice weekly for 8 months or so.

A friend has the same thing and is treating it with Crystal Meth and possibly heroin. They have been rehabbed for these drug addictions in the past. My question to you is would these help or are they using the RSD/CRPS as an excuse to fall back into these old habits?

While I'm not familiar with your friends case, Methamphetamine is most certainly not an avenue you want to take for the treatment of CRPS. CRPS sufferers typically have circulatory problems as it is and meth would only make that much, much worse. It would probably aggravate both her pain levels and her mental state by inducing fits of mania and insomnia.

Heroin on the otherhand, while dangerous and unpure when bought on the street is for all intents and purposes an opiate. It most definitely has pain killing properties and COULD help her pain, however, I doubt without dr supervision she's dosing it regularly or appropriately or that its a high enough grade that it is safe to use consistently. I'd suggest she go see a doctor and quit making her own situation worse as soon as humanly possible. She's playing with fire here.

Yeah, and alienating all her friends and family. Thanks for your opinion. She is wanting the ketamine treatment but can't afford the $8,000 a pop price. Is that what you paid? Did insurance cover it? I do not think she has insurance either.

I was quoted a couple grand more than that. Insurance wasn't going to cover it. Didn't see it as "necessary" lol. But all the painkillers, those were totally necessary to them, so much so they paid to get me addicted to them! Thanks healthcare / insurance system!

My heart goes out to her. Its a rough spot to be in, just try to be there for her no matter what, even if she pushes you away. I wish I had someone who was there for me throughout it all, but sadly, I can't think of a single person. Not even the people I'd consider closest to me. CRPS can really effect even the most stable of relationships. I would have never thought my dad and I could have ever argued so much had it not been for this. Or that my sisters would both stop talking to me for months at a time because they considered me a "hypochondriac drug seeker." Stuff is all fine between me and my family now, but during the whole process, shit got really, really weird.

Thanks again, glad you are feeling better. It is tough on her and tough on everyone around her. we will do our best but the meth is destroying her and she is spiraling into that world hard. I guess we are kinda in that state that your family was in then. Having known so many users in the past it is difficult to differentiate between the two. On one hand we know the destructive abilities of these really bad drugs but the other side is the basic and core fight for survival and at times, to us outsiders, we really can't tell the difference. We had all but written her off but we will give it a little longer.

amphs were never my thing so I might not be able to relate to that portion of her story, but if she ever wants to talk addiction or CRPS, I certainly would be open to discussing it with her, if you think she'd be open to it. Even just as an extra support system for her. Someone outside her immediate circle who she can confide in and who somewhat understands her situation. I know I wish I had that while I was going through all of this. If she's a redditor tell her to PM me and we can exchange numbers or something.

Is this another name for Reflex Sympathetic Dystrophy Syndrome? I've been diagnosed with it, but I don't think I have nearly such as severe case as yours. Mine is in my right arm and makes writing very difficult. I have been told to try acupuncture. Do you have any experiences with it?

yes, I've tried acupuncture. It helps, but its expensive and the relief doesn't last as long as one would hope for. Still worth a shot. This seems to be a very "personal" disease with varying levels of severity and efficacy of treatment options. Mine was too severe for acupuncture to have its intended effect, but maybe yours will be different.

and yes, reflex sympathetic dystrophy is an older name for CRPS.

I really hope it works. I'm allowed to use my tablet in my high school since writing notes is painful, and all of my classmates always say they wish they could use they're devices. Honestly, I'd rather have no RSD and not be able to use my tablet, than to have RSD.

dude, that hits home. Don't stop searching for solutions. They're out there and you have to keep hope that you're gonna find them. I've put out a lot of what's worked for me in this thread. Talk to your doctor about it and make sure you're seeing him on the regular and that you like him and he understands you and all of that good jazz.

All of my friends used to tell me that they would kill for my painkiller scripts. Well, I wished I didn't need them. So I know the feeling, sort of.

I'm curious to how you were recommended Ketamine? I ask because my girl friend has very severe headaches after getting a concussion a few years ago. She has tried everything under the sun, but really only Advil gives her relief. I know you aren't a doctor, but I wonder if she should try ketamine.

super late, but... to me Ketamine for a headache (even a debilitating migraine) is like hitting a nail with a comet. complete overkill. It's gonna make her pass out or at the very least not be functional enough to continue on with whatever she was doing prior to taking the ketamine.