Ep 64: Beyond the Prescription: Kacey’s Journey with Kratom and Chronic Pain

0:00 But if it wasn't for things like kratom on the market right now, I don't know how a lot of us would be here, you know what I mean? Because I know at least five people that are abandoned to that are more affected than me, if that's possible, you know? Welcome to Kratom Stories, a weekly podcast where we share stories of how this amazing plant has changed our lives. I'm your host, Madeleine Sklar. Each week I'll bring you a new episode featuring interviews with experts, advocates, and everyday people who've experienced the benefits of kratom first hand. Join me as we dive deeper into the world of this botanical wonder and discover the amazing stories behind this incredible plant. The Kratom Stories Podcast is presented solely for educational purposes.

0:55 Neither the podcast nor its host promote or endorse the use of kratom, a substance not yet regulated or approved by the FDA. The views and opinions expressed by guests are theirs alone and do not necessarily reflect those of the host or the podcast. The content is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions regarding the use of kratom. Before we dive into today's episode, I want to let you know about Kratom Real Talk. It's a new community for positive, uplifting discussions about the power of whole leaf kratom. If you'd like to be part of the conversation and learn more about this plate or contribute your knowledge, go to kratomrealtalk.com.

1:44 So I'm here with Casey, a lady I found on TikTok with a video about kratom. I'm like Oh my gosh, her story is so similar to mine. So Casey, I'm so glad you said yes to coming on the podcast. I can't wait to hear your story. It's so interesting when I find fellow kratom consumers on TikTok that just post a random video like you did and I was like it stopped me in my tracks. I'm so glad it showed up in my feed. Well, thank you for having me and I appreciate people that talk about this because I know we've mentioned there's a lot of misinformation about it, like different things that we use, and kratom is one of those, so I'm happy to help. Yeah, well, let's start first with you telling us a little bit about yourself and life before kratom. Sure.

2:28 My name is Casey. I am 40 years old. I just turned 40 and I have three boys. I have a lot of health issues so I have hypermobile Ehler Stanley syndrome which is a connective tissue disorder. I have scoliosis. I've had several surgeries and couple failed surgeries, stenosis, degenerative disk disease. I've had a lot of I have POTS. I have a lot of comorbidities with my physical function. I have 3 kids, my oldest is 20 and he's in the military and I have a 14 year old and a nine year old that I homeschool. I'm married and we live in North Carolina. So I, I guess that's really like the best synopsis of me.

3:13 I hate to say that my diagnosis is a really kind of who I am, but honestly right now it's controlling my life. So that's really the best explanation of where I am now in life. Yeah. How long have you been suffering with all these medical conditions? So I was diagnosed with scoliosis at age 11 and they told me when they found it and it was 17° and it wasn't an S curve that it would not curve anymore and I didn't need to be braced and all this other stuff. Well, I started having kids and my back progressively got worse. So it went from 17° and no bottom curve to 30, 2° on top and 41° on bottom. And it's just progressively gotten worse and my hips are off center now I'm twisted in the middle. There's a little bit of rotation with my core and I have a lot of problems with like my joints dislocate or partially dislocate.

4:09 And they didn't know that I had the connective tissue disorder until last year. So I just got that missing piece of the puzzle. But I have been severely affected. It started in 2019, but I've been struggling with pain since I was a child. Wow. So when did you get into pain management? When did that come into the picture? So I've been in and out of pain management since I was 19. When I was pregnant with my first son I had a kidney stone while I was pregnant that got stuck in the ureter and they had to do a stent. The stent broke while it was in my back and they had to go back in and remove it. I had a lot of problems with that pregnancy, but shortly after I had my first child is when my pain kind of vamped up. And that's really common with Eller Sandler's. Like pregnancy seems to really kick things into high gear. So I started in pain management at 20 and I was kind of in and out of it.

5:03 I've always used it as kind of, I would go for like couple months and then you know, stop for a year or go for a year and then stop for a few years because I knew that I didn't want to be on the meds all the time. There's a lot of side effects that I mean you have to go every month. So I've been in and out of pain management for 20 years and I was in pain management steadily from 2017 to 2020. The last year, what started all of it was I had a disc that caved in at L5 S 1, so it was pressing on my sciatic nerve root and I was also having a lot of dystonia. And you know what happens with that? It's not pretty.

5:49 But anyway they had to do surgery. So they started surgery in the summer of 2021 and I was in pain management the whole time, stable. The first surgery they did a micro discectomy, it failed within 72 hours and then I had another surgery within a month is same thing micro discectomy, it failed, held within a week and then they did a fusion. This all happened within four months. So they did an L5S1 fusion in November and it has not helped at all. And this was all with the understanding that they would be doing a very large fusion for it to correct my scoliosis from T10 to S1. They were never set up to do that large fusion and they knew the whole time.

6:32 So they fused L5 S one and we're planning on pushing me off to another hospital. And this happens a lot. So during all that, my pain clinic was shut down, My doctor lost his license and the pain clinic was shut down. And that's how I found the doctor patient for him. But I was using kratom in between when I would have prescriptions during that time, because while you're having surgery, they would only give you a prescription for acute pain for three to five days and you'd have to call in every week to get a refill. And I was doing this for a year and a half during surgeries, and I would end up without a prescription over a holiday weekend or they wouldn't get back to you. And you know this, Madeline, But if you don't make your surgeon write your medicine, pain management will not pick that up, OK, because they're very compartmentalized. So I wasn't going to let the surgeon off the hook. Well, I found kratom kind of during that time and was using it when I didn't have my pain meds. And it helped enough where I wasn't. Not necessarily.

7:38 It doesn't help as much as, you know, FDA opiates, but it helps enough that when I am in crisis, it knocks the edge just off enough so that I can work through it. You know what I mean? And after that I found another, there was another clinic locally that was accepting that clinic patients and that was a nightmare. They cut my dosage in half immediately and I waited six months to start with them. And then, you know, it starts in with the they'll see you for a year and then suddenly they drop you for no reason. And mine was because I was a complex patient, my age and all this other stuff. There was no behavior issue or anything like that.

8:20 They just dropped me. And then when I tried to go find another clinic, I've called and I've checked with clinics going out four hours one way in almost every direction from my hometown. And I'm in a rural part of North Carolina. And every single clinic that I called wanted to set up epidural steroid injections for the first appointment in order to be seen. Now, I've done those four times. I was hurt really badly with one. I had an injury with an epidural once. And you're not supposed to get injections in your spine if you have other Stamos that increases the risk of ACSF leak or other problems. And so they won't even talk to you if you can't get the epidural steroid injections.

9:02 So I've not found another pain management clinic. And I'll be honest, freedom is the only reason that I have probably not analyzed myself that and my CBDTHC, you know, combination. But it doesn't help as much as our FDA approved opiates, you know, all the time. It does help on the day-to-day. And I'll be honest, Madeline, I feel like kratom could help people that may not be as high on the pain scale to avoid stuff like tramadol with the awful side effects and these like gabapentin and Lyrica because I have horrific allergies to certain medications and reactions. As a matter of fact, when I had my fusion, I had a reaction to meds coming out of anesthesia, tried to pull my inflated catheter out because I was just out of my mind. And they tried to call security on me. They were not trying to help.

9:55 It wasn't anything like that. And it was like 18 hours before they got me under control. So it was a really horrific experience. But I feel like they are trying to mess with our meds too much and they need to get out of our doctor's offices. You know, we just are trying to live. Right. Wow, Casey, you've been through a lot. It. Yeah, a lot, A lot, A lot. It's been a lot. And before that, you know, a lot of people have accused me of not being sympathetic to the opioid epidemic because that's another part of this, right? And I am very sympathetic to the opioid epidemic. My oldest two boys, my first husband died of a drug overdose in 2013 suddenly. And I know all too well the risk of illicit fentanyl coming over the border.

10:43 But trying to control our medicines, including kratom, is not the answer to that. They are making the problem much worse. I agree 100%. Wow so so many questions I don't even know where to begin. I'm. So sorry it's so hard to get all that in. This is this is this is so good. I mean, wow. I mean, good in the sense that like it's a lot of information and I know this is helping people that are listening. So before the disruption in your pain meds, when you're able to get them consistently, how well did it work? I mean how much lower did it bring your pain level? And so when I was in this, thank you for asking that the way that you did when I was adequately medicated, it lowered my pain level from about an 8 to I would say A4, right. So it was all, it was a substantial, I got 50% relief and that was very helpful.

11:40 Now, when they cut my meds in half, we're talking about 10% helpful. You know what I mean? Because you're coming from behind. And when I don't know if a lot of people realize this, but when you were in pain all the time and not sleeping and not able to eat, you are chasing that pain level. And if it gets too far out of control, you will end up in a crisis episode that could last up to a week. And it's horrific. Cyclical vomiting, migraines, seizures, there's, there's a lot of stuff that goes with it and that's part of it, you know? It is, yeah. People that don't suffer from pain I don't think really understand the things that we go through. And you have to always stay ahead of the pain and and be medicating on a schedule so that.

12:25 Yeah, if you get behind. Yeah, it's hard. Yeah, I know. I get it. And I remember those days very well. And it was, it was not pleasant at all. You're painting a picture that that's so easy for all of us to understand because many of us have been through those same things. So it sounds like your pain relief was really well done. When you're getting consistent medication, yes, boy, if you've had a lot of disruption in it, that's, I can't even imagine at your age raising a family. And it's just sounds like it's a constant roller coaster. Yeah, and I think the hardest part of all of this, Madeline, is I have seen 4 specialists, gone to several hospitals and traveling for me is really difficult because walking, moving around is hard, right, Because my back is just so messed up and it causes a lot of leg issues.

13:14 So I can't drive and my husband is the only one working. But what has been the hardest is seeing so many doctors and I've had three hospitals tell me that I need surgery, do the meeting with all of the spine surgeons, tell me that I need to schedule it, and then get ghosted by the hospital. I've had to call or have a virtual appointment set up. There was a Duke set up, I think it was 7 virtual appointments that they didn't show for. And this is happening across the board. Like I've reached out to the Cleveland Clinic, they got back in touch with me, got my records up there, ghosted. Then you get in touch with another doctor, ghosted. I actually have a video call with one of my doctors today, but I do not have out of my specialist that I had starting into this.

13:57 I have at least five more diagnosis is including a nervous system disorder now that I did not start into this with and it didn't start until my pain meds were pulled. So all of that to say that they have not actually treated me for anything. I've gotten all these diagnosis but no help and nobody is actually doing anything. Do you know what I mean? So there's no progress. It's just they've made money the whole time and I am more disabled now than I was at the beginning. Wow. So. Why do you think they're ghosting you? I think it is a systemic problem and I I have found that it is a really big problem and very large hospitals with spine surgeons specifically. I don't know if it's because of their staff, I don't know what it is, but I have found if the front staff, including like the secretary, is not on their game, that is how the doctor is going to be every single time.

14:57 So if you're first experience with the person that you're talking to is not phenomenal and you don't feel taken care of, leave because that's how it's going to be. And stay away from Duke Hospital right now. They are a crap show. Wow, sounds like you could write a book about all of this. I want to one day if I can ever get a little bit regulation, I would love to so, but we're we're just trying. Yeah, right. Eventually. Yeah, wow. Has the ladies at the Doctor Patient Forum been able to help you? So I so I've done I think 3 podcasts, Bev and I have, I met Bev in 2019 or 2020 online and she has been one of my list and I don't know what I would do without them. They've helped me so much.

15:41 I had Bev on an earbud and a doctor's appointment one time and she's the only reason I didn't have a nervous breakdown in there. You know what I mean? I and I'll be honest now, this whole thing, I didn't go into this knowing to record conversations with my doctors. I didn't know because I would have never thought that I needed proof as to what they said. I have had doctors bold faced lie to me from 1.1 appointment to the other. And I'm not, this is not an exaggeration. I'm talking about you cannot get continuity of information from the insurance company from the doctors. And if you switch to a new specialist, they may tell you something completely different. And so we, and I say, me, it's the other chronic illness people.

16:23 But so for every one of us, there's fifty behind us that we know that are still pushing for the same thing. But we started recording our appointments because we needed proof. And I can't tell you how often that's come in handy. But if it wasn't for things like kratom on the market right now, I don't know how a lot of us would be here. You know what I mean? Because I know at least five people that are abandoned too, that are more effective than me, if that's possible, you know? Yeah. And so let's talk about kratom because it's interesting that you found it and you've been using it when you're not able to get your meds. So how did you first hear about kratom? How did it even get on your radar?

17:03 Do you? Remember. Yeah, a friend of mine was, her husband had Ms. and he was also at a pain clinic and he was having a hard time getting his meds at that. Like we all started experiencing the same thing at the same time. I'm sure you did, too. So when he was desperately sick one night because he didn't have his meds, they found that she got some or her doctor had mentioned it and she found some and tried it and it helped just take the edge off of those worst symptoms, you know, when you don't have your medicine for the 1st 24 hours. And I was like, well, that's great because he'd been on his meds for 20 years, you know what I mean? And I was like if it kept him from crawling up the walls that night. So I got some and it was powder and it was from a gas station and I wasn't crazy about it and it was not the strain that I ended up landing on.

17:53 And I asked Bev with the doctor patient for him and she sent me all kinds of information for safe years, you know, and I found cats in Tennessee and the rest is history. So tried a couple different strains, found the ones that worked for me. And that's, that's the only thing you know, that's what I do now. That's so right now you're currently just using kratom only. Yeah, I get muscle relaxers, which I mean, that's not that great, but they do help a little bit. And then I use kratom, my muscle relaxers, and then I have like a CBDTHC. It's the legal version of the vape that I used. And I have CBD healing salve from a place called Frannie's Pharmacy, and it is a topical balm.

18:37 Let me tell you, that stuff is the best. It helps with aches, pains, joints. It even helps with that time of the month. So and that stuff's really good. But those need to be in my toolbox along with, you know, FDA approved opiates as well. Because I feel like I could use Kratom on the days that was, that weren't as bad or if because I like to stop going to the pain clinic every so often to reset that You're not what's the word? I'm looking for tolerance. OK, 'cause after so long you don't want to keep going up. So I would stop to reset my tolerance. Well, during that time to reset tolerance, it would be really helpful to have kratom, you know what I mean? But pain doctors don't want to hear that pain patients do that themselves, that we control all of that.

19:23 They don't want to hear it. They think that we are all just feeding for medicine and that we can't wait to get in there and take it. And I seriously think that they think that we go through our kratom bottles like in two, two days when we get them. And I'm just like, we don't take it like that. You know what? I don't take it like that. Yeah, so your doctor knows that you use kratom? Yes, my SO I have a PCP that is a Unicorn. He's amazing. And he does know that I use, I tell all my doctors that I'm using that because they ask, let me tell you something else. Every specialist I get to you, Madeline, they say, what are you doing for pain? OK, They all ask me because they know we need pain management, but they can't offer anything for pain, right? And when you say kratom, they just nod because they've heard it.

20:07 They know about kratom, they're all familiar with it. So I have been labeled at an ER once as a drug user because kratom showed up and I used these. Oh, that's crazy. Oh my God, Yeah, so. A plant, a tea leaf, right Well. Here's the other part too I I admit I use CBD and I told you I buy the legal vapes that you can get in all 50 states. OK. They also will label you for those if they pop up any used to get an ER and I just heard a couple people's videos saying that they didn't realize that you were drug tested when you go to the ER. My experiences, I've been been drug tested every single time I've been to the ER since I was 19, you know what I mean? So I don't know if maybe different parts of the country do things differently, but here they are very much going to test you every time you go in and that's OK. But yeah, it's amazing to me that plants that you can buy and you go into the ER and they accuse you of being a drug user and you're like, no, if I was a drug user, it wouldn't be kratom, you know what I mean?

21:16 I'd be on street corner. Like, right. Exactly. Well, it just shows how misinformed they are. There's so much misinformation and propaganda out there. I mean, that's why I'm a loud, proud advocate, because I'm trying to change that narrative because so much pad information's out there and it just, it's crazy. That was another thing I wanted to bring up, Madeline, is I know that you've seen the parents out there and God love them. I want to say my heart goes out to you. We feel for you. We are so sorry. We hope we are praying and I am so sorry. But as with my first husband that passed, his autopsy had multiple substances. He was not just using one substance.

21:59 He used anything he could get his hands on. He had alcohol in his system. He had benzos in his system, he had heroin in his system, and I don't know what else at this point because I can't remember, but I will tell you that anybody, any story that I see that says kratom killed somebody, I am always so curious. He was also on gabapentin when he died. They had prescribed gabapentin and he had gone to the hospital to try to get in treatment. Six months before he passed, they sent him home with a prescription for Clonidine and gabapentin and he was dead six months later, no rehab, no nothing. So we are missing a huge component of mental health, kids not being able to process trauma. There is no way to control emotions. We're not teaching our kids any way to deal with the horrific things that happen.

22:49 And then whenever we have young adults that are strung out on any substance they can get their hands on, they want to come for any substance that is actually helping people. And they're missing the part that we need mental health. We need to make sure that our kids are emotionally sound and addicts are a symptom of a bigger problem. They are hurting, they need help and it is not the substance that they are using that is the enemy. So well said. Yeah, exactly. And yeah, kratom gets demonized and and you know, I feel for those parents too, but there's always more to these stories. There's so many so-called kratom deaths where it was Poly drug use. And so it seems like so many times it could be that there was heroin and prescription drugs and a whole host of things in somebody's system when they pass. Yet if kratom's in there, many times they just like it is a kratom.

23:42 Yeah. And it just don't get it, Don't get it at all. Well, and the other part too is I would like for them to look into the gabapentin being present in so many of these deaths. Nobody's saying anything about it. And I love how they just give a pass to certain drugs. OK, there's a pass. It doesn't matter if it's in their system and then other ones are completely demonized. And for those of us that have weird allergic reactions to drugs, every non narcotic they have put me on has caused horrific. I've ended up in the hospital's seizures not knowing who I am. OK but there was one they put me on tramadol made me feel like I had bugs crawling all over my skin. There was Lyrica was one of the hardest ones and they forced me on that to in order for me to get my pain meds would not let me come off and then took suddenly took me off. They wanted to suddenly take me off and that was harder to come off of then anything else because it was just so long and it made you feel it messed with my nervous system. Do you know what I mean?

24:45 And they don't want to talk about that, but they keep pushing these non narcotic pain medicines that are so dangerous with the side effects, so dangerous with the long term effects. And they tried me on Belbuca at the pain management clinic. It ate out the lining of my mouth and I couldn't don't eat anything for like 2 weeks. I mean, when I say that they try these meds on me and I have really bad reactions, it's not just that I am having seizures or I'm having hives. It's that it affects me for a month afterward, you know? Wow, but you've been through a lot. I'm so sorry you had to go through so much. Let me ask you this. So with kratom, what does kratom help you with?

25:26 So when you take kratom, is it helping you with a lot of these issues that you have and is it giving you any reactions like with some of these meds? No, so kratom does not make me have reactions. I started out very low and slow because I didn't know how I was going to react to it. The only thing that it does is that I have noticed is if I don't eat right. If I don't eat it makes me sick to my stomach. Or one time I had taken my doses close, I had doubled dosed and not realized it because I'd already taken my meds and I threw up. That was the worst thing that happened. So it helps, I would say as far OK, so if an opiate at the right dose helps me reduce pain by 50%, I would say kratom helps me between 10 to 25% some days, depending on you know, what my pain level is. Now there's other days whenever I'm in really bad pain if I'm already vomiting from that, I can't get the kratom down. And so you're just kind of waiting for it. But if I can stay on top of it and I don't take kratom every single day, I take it on my worst pain days. So that because kind of save it for when I really need it, but it does help and it does not help with like my pot symptoms. So if I'm having like tachycardia or bradycardia or anything like that, it doesn't seem to help with that. But it does help with like my really severe muscular skeletal pain.

26:50 It tends to help a little bit if my stenosis is acting up. I think it helps with inflammation is what I think, because I do believe that my dystonia in my legs starts when my inflammation, the base of my spine starts and that stenosis gets tight and then it'll just mess up the sciatic nerve and all that. And I do think that kratom does help with that. Yeah, that's interesting. And a lot of people do say it helps with their inflammation issues. I feel like it does with mine. Now, what's interesting for me personally, kratom has worked way better than all the opioids I ever took. Now I was in pain management for not. Now I know the plant works differently for everybody. Everybody has a different experience. I wish everybody had the same experience.

27:30 I really do. I know because everybody's completely different right now. I was in pain management for nine years and I remember that roller coaster of having to take tolerance breaks and switching one medication for another. And I pretty much had had at some point used pretty much every pain meds there was and we ended up working best for me was Oxycontin with Percocet for breakthrough and that that was, but I was at very high doses too. My MME was very high, but it's because my body processed the meds quickly than the average person. And, and the most scary thing and all that was when I was taking a tolerance break from one meds and then we put me on the fentanyl patch, that transdermal patch. And I processed that so, so quickly.

28:12 That number one, I had to normally is for three days, 72 hours. I could barely get to two days. I was more than 1/2 days. And we started the lowest and there's three different dosing levels of those patches. And this, this is probably about 12 or 14 years ago. I so quickly had to go the next level up through it so fast and my body's processing it ultra fast. And that's also with having meds for breakthroughs. So I'm also taking, you know, codons for my breakthrough or Percocets. So when I got to that second one, knowing there's only one more higher level than that, I same thing. I very quickly it's like it wasn't enough. And the doctor's like, well, I can prescribe that next. I'm like, yeah, but that's the highest. Where do you go from here?

28:56 Where you know when? It's one thing if you're like elderly or like, you know, you're later in life, but we still have a lot of years like where that go from there. That's it. And. Here's the hard part for me. OK? I have been sick and gaslit this whole time, OK? Mind you, a lot of doctors said that scoliosis wasn't painful. I have been sick since I was 11. I've been in pain, serious pain since I was like 25. But I think the hardest part is we as patients, we're logical, We know this. We don't want to go up to the highest. We are trying to find a solution from the bottom to alleviate some of the pain so that our feeling is where it needs to be when our pain is at crisis level.

29:39 And I feel like the doctors think that we are running in there every single time we have a twinge and like, I need meds. I need meds now. And that's not what's happening. We are trying to ration care at this point and thank God for kratom, but I just get really frustrated because there's so many accounts that are set up to demonize this plant and they're just like, it's the worst. It's a drug, it's just like an opiate. And that's not my experience with it. You know what I mean? Yeah, most of us. Have a very good experience, not a -1 but we're also not overusing it. I was going to say taking addictive behaviors from other things and doing well and we're. Also not abusing our pain meds when we have them. Do you know what I mean?

30:25 Like, I think that's the difference. And I feel like the general public cannot fathom that there are people that don't take too much. I did find out last week and I'm going to talk to my doctor about this. They are labeling people that have ever been in pain management, right, for a legitimate reason, like us with non dependent opioid use disorder. And I was like, so they're giving everybody else substance use disorder and then the ones of us that are legit patient, they're saying non dependent opioid use disorder. How is that any better? They're just going to stigmatize it further, you know?

31:07 Wow. That's terrible. It is. I will. Say one thing, Madeline, what they've tried me on so many drugs. I will say I think the worst drug that I've ever been put on, and this was during the time that they were trying different drugs and tried me on Belviqa was when I was in pain management and they had me on methadone for a while. They tried me on methadone because they were like you need something around the clock. That was the worst medicine I've ever been on. It was so hard on me. It was hard on my heart and it did not help my pain. It helped like the first week and then after that it was like it shut off any receptors.

31:47 It was like no matter. It was just weird. I've never experienced that and I had a lot of like side effects from it. So I feel like freedom should be treated more like the legitimate drug that it is. I feel that it is much more legitimate than tramadol. I feel it is much more legitimate than gabapentin. And I, I am a big proponent of SSRISI feel like those are, they give that to us so much. And I feel like those are dangerous as well, you know? Oh, absolutely. Wow, it's such an interesting conversation. Now you know, I got dropped from pain management like you did through no fault of my own. It happens for me.

32:29 This was six years ago and my first thought was, well, I couldn't find another doctor to take over. So my first thought from that was, do I have to go to the streets and go buy the meds that work for me, that I know work doctor knows that works, but buy him illegally. Like I don't think the medical community understands what they're doing to us legitimate pain patients when we're dropped like that. And I was so scared. Like, first of all, I'm like, how do I find a drug dealer? I don't even know how to do this. You know, it's like, but also it was just a scary thought. And that was when that fentanyl was coming in. I just remember it was on the news all the time back when this was happening to me. And I remember one time on the news, on the local news, they showed the pills.

33:13 They looked exactly like my Percocets. Exactly. But they were the fentanyl ones. Yeah. He wouldn't know the. Difference, right and. And I was like, Oh my God, I don't know how I'm going to do this because every time I take a pill, like I hadn't done anything yet, but I was like, I was about to run out of meds. I'm like, Oh my gosh. So every time I take a pill for my pain, I might stop breathing. Oh my gosh, it's. So scary and it's like it's. Such a scary thought. So thank God a documentary about kratom popped up in my Netflix six years ago. It was exactly 6 years ago because my memories on Facebook it just showed the other day. It was like 6 years ago because I had done a post because the documentary was on my Netflix and I watched it. I'm like there's a plant.

33:56 So I posted to my Facebook friends. I was just curious if anybody had ever heard of it because I had never heard of it. And that was the start of my journey. I started doing a bunch of research. But what's so interesting, Casey, is that kratom works way better for me than all the opiates I took. And I know everybody's different. I just wish people would get the same experience I do because like you taking the pain meds, it would give me some quality of life. It would bring the pain level down, but it wouldn't bring it way down. Now for me it was more like I would be at A6 or A7 on a good day Now a bad day be like 8-8 or nine. But on a good day I would get enough relief so I could still work and function and do things.

34:37 But it was always still there. It's always top of mind. Everything you do is a struggle. But then I lose access. Tried kratom and took a little trial and error to figure out dose and color and all that. But once I figured it out, my pain level for my degenerative disc disease goes to a 0 now. Mind blowing to me SO and this. Is why OK? Because this part is hard for me because I feel like if I had a relatively normal spine and it was just the disc, right? Or if it was just a little bit of stenosis, maybe it would be a little bit different. But, and especially because it's fused at the bottom, I feel like I am one of those people that is at a I'm just at a Max level, you know what I mean?

35:23 A lot of the time. And I'm not trying to say anybody else is not as in as much pain. I just feel like there's a lot of pressure coming from my spine, OK. And it moves. And I don't know if, and I'll say this too, I haven't increased my dosage to try to see if it helps more because I don't feel like that it would necessary I would get any more benefit from increasing the dosage. I feel like that I've come to a good place and it's where I'm happy. But I'm always curious, you know, and they say not to use kratom in conjunction with opiates, but I'm always curious, like, is there some person out there that their body works a little bit differently and it would work well together? You know what I mean?

36:05 There are so. I've interviewed several people in the podcast and just also talked to other people on social media. Where is a couple of things. Some people just kind of do like the pain management when they're able to have their meds and if they run out early or the doctors reducing, then they kind of compensate with kratom, almost like kratom for breakthrough. So some people seem to do fine. I'm like really, because they, they always tell us like one or the other that they hit the same receptors and that they'll cancel each other out. But I've talked to people where it doesn't cancel them out. Let me tell you this. So, and this is really weird, whenever they had me on methadone and they were trying out Belbuca, which is insane to me, I went into precipitative withdrawal and I did not know what that was at the time.

36:47 I did not know that you could do that, OK? The only reason that I found it out was because the pharmacist at the pharmacy told me and was like, you cannot take these meds together. They will cancel each other out. OK, so I've always wondered is, but see, I didn't know that at the time and I know that I have taken kratom like for a breakthrough when I had pain meds at the very end, you know, because I wasn't medicated enough, they cut me down from 120 milligrams to like 50 right off the bat. So I know I was taking it for a breakthrough before I knew that it was supposed to do that. And I don't remember having a problem at all. I don't remember.

37:27 I think it worked fine for me, but I I didn't know that at the time and I haven't been able to test it out, so I didn't want to mention it. How many? Hours in between, like between a pain Med, one of your pain meds, and then the kratom. Yeah, it was, at least. Three at least before and like now that's another thing is I don't take like whenever I take my kratom, I take my kratom. I don't sleep. So I take it first thing in the morning and like I think it's 4 tablets is 1g. So I normally take them four at a time. So I'll start with four and then if I'm still hurting in an hour, I will wait one more hour and take four more. But I only dose until about 1:00 PM, and then I don't take any more the rest of the day. And I don't know if I should be taking it overnight, but I've tried it before and I didn't really notice the difference, you know, I just felt like the first dosage of the day got me pretty good and I was good until the next day. So yeah, I mean.

38:25 It's trial and error and figuring it out, you know, and everybody's different with the amount they take and what works for their pain. And some people do stop earlier in the day because they don't want to take it in the evening. You know, there's so many variables with this. So many times people will see me on social media and say, oh, I have degenerative this disease too. Tell me what you take how much a kind and they you're like no, no. No, when I do I. Will and it not. The thing you gotta experiment. But that's it. It's just. Trial and error and figuring out what works for you, Well, that was the thing. Is I started with the white strain 1st and it was not what I needed. It was not where I needed to go. And I can't remember, I think it was, I can't remember which one it was.

39:08 But there whichever strain I started with was on the opposite end of the spectrum that I needed to be on. So once I found one, and I'll say this, if you think you find one, always get two more because you don't know if maybe that was just the beginning of the one that works. I thought I found a really good one and two months later they were out of it and I had to order something else. And that one worked better. And I, I switch up between 3:00 every month. You know, I'll get 2 one month and then get the third one and then kind of rotate between those to keep it different. So and you have to just try. You have to just try. And when people are new and they're asking me, you know, I always, you know, like I'm not a medical professional. I can just share my personal experience and what people advise me to do in the beginning, which is what I did. And what I tell others is get the three main colors, the red, the white and the green, and try them one at a time and see how you do.

40:02 And you don't know until you try. And everybody's affected differently. And I found for me, the white, the white makes me too jittery, is too energetic for me. That was me. The Reds don't do much. For my pain, but the greens for me have been magic. It's like it helps my pain. It gives me a little boost of energy. It's like it's the one that works best for me. So I stick with those and I'm always rotating different vendors. But the key is to get really good quality kratom from a good online vendor. It's best to not buy them at smoke shops because they not always but they typically have lower quality and they're not always lab tested and it's going to cost more as a smoke shop too. Well and it's so much more. Expensive there and we need to mention too, because a lot of people come in my comments talking about 70 H That is not the same thing. It is so dangerous.

40:49 And when they start getting into that type crap, you are getting into dangerous stuff because there are additives and other things in there that's not safe. Yeah, the researchers. Have been sounding the alarm on this they're saying it's not truly kratom. What's interesting is you got the whole leaf powder, which is what we take, right, which is just, it's the plan. Then you have the X tracks where I mean, you manufacturer will take the one alkaloid out of out of the plant and synthesize it to make it more potent. And so that's your extract. So they're stronger and and you got to be a lot more careful with those and I stay away from those. Then you got the seven, OH, where they take the extract from, you know, they take an extract of an extract and then synthesize it again.

41:33 And they're putting compounds into it that the researchers can't even identify. So there's things in this of no H products. The researchers have no idea what these compounds are. But anyway, they're way too strong. And it's not technically kratom at this point. And the smoke shops are selling them and they're making the killing and people are talking about how they're, they're addictive. And I'm not surprised. But it's not kratom. No, it's not. And listen, that is the stuff that they should be sounding the alarm about because I could see that stuff being much more addictive, much more dangerous. And if we're talking about kids experimenting, that's the stuff that you want to keep them away from. And I think that it speaks volumes though, that we as kratom users are like, wait, this is not the kind that you need. Go low and slow.

42:20 Make sure you take a tolerance break. Like, we all have these behaviors that we have adapted good because we know that they work and they still want to label us as users. You know what I mean? And I wish that we could just stop with the labels and realize that everyone needs something different to survive. And let's not even talk about this, Madeline. I am neurodivergent, I have ADHD, and I'm also on the spectrum. Kratom also helps a little bit with those symptoms. It helps with my anxiety just a little bit. It helps especially because I don't sleep my cognitive function, I feel like sometimes it helps me focus a little bit more.

43:01 And we don't even talk about the neurodivergent symptoms because we can't even think about getting those treated. We can't get our pain treated, you know what I mean? So. I feel like a lot of. People don't realize that we are not only not getting pain management, we're not getting mental management, we're not getting anything treated. So it's frustrating when people want to label us and label the few tiny little things. It's like saying that ibuprofen is killing people and ibuprofen is killing people. Let's be honest, ibuprofen and Tylenol are, and they're not saying a word about it. No, because. It's big business and you know anything that's big business and or big pharma always swept under the rug, which is said. Let's be honest, they are not providing treatment and they're lining their pockets with our money right now. You know, of course they don't want that revenue stream to stop.

43:55 So I'm so glad that you're getting the word out that the ones of us that are suffering that have been abandoned because there's so many of us, freedom is our last lifeline. And if they remove that brick from our lives, I don't know what we're going to do. You know what I mean? Yeah, and as. A matter of fact, you know, you said you're in North Carolina recently, there was a county commissioner that wanted to bring a band bill not just to the county, but to the whole state. So many of us, many of us advocates reached out and we contacted him and the other commissioners and he responded back and gave out his phone number to all of us and said, call me if you'd like, let's talk. So some of us got on a conference call with him and talked to him. Other advocates in North Carolina talked with him. He was very receptive to hearing our stories about freedom. He was only hearing negative stuff. He got to hear us share our personal positive experience and it completely changed his perspective. So it doesn't, it doesn't look like it's going to be as much of an issue now in North Carolina, but listen. If that happens again and you need anybody, because I didn't hear about this one, let me know because it that's what happens. And listen in their defense, in these people's defense, of course they're going to want to do something if people are talking about a drug being sold at the gas stations, OK, Because that's the only side that they're getting. But I am so appreciative that he was willing to listen and like the guy that Claudia had that had Claudia on his podcast, the one that was the attorney that was suing the opiate manufacturers, that was great

45:28 too. And I feel like they're finally starting to be like, oh, wait, the pendulum might have swung a little too far the other way. We may need to start thinking about this. But yeah, I have family that I have several family members that are fighting cancer. My grandmother just had a hip replacement. They are having to ration what tiny bit of pain meds they get. And when I tell you, watching your elderly family recuperate from major surgery and not want to take their pain meds until they're at crisis level because they know they can't get anymore. We need change. And these people were medical professionals in their prime. They helped people. They can't believe what's happening. And every single thing that we have to help us, Graham included, they're trying to take off the market. You know, and I just what's next? I'm hoping RMK will listen to us. I hope so, I hope.

46:19 So because it's gotten so bad over the years and it just keeps getting worse. And I feel so bad for everybody that's still in the pain management community because they're just not prescribing the way they used to and people are just analyzing themselves because they just feel so hopeless and it's, it's just terrible. It's like, well, there's a plant that might help. That's why I'm always putting the word out because in my 9 years of pain management, Casey, I never heard about kratom. Never, never. Like I wish, I wish I had somehow heard about it because I would have loved to learn about it. Empower myself and fired my pain management doctor. That's what I would have liked. And so people are, yeah, that's, that's what, that's what needs to happen. And like, people are finding my podcasts, they're finding my Tik Toks and learning about it in the pain community. And I, I've already helped several different people that have gone on to fire their pain management doctor because they discovered Kratos.

47:15 Yeah. And we need more of that. That's why we need to like, share our stories and help spread the word so more people know. Here's an alternative. It might help, it might not. Yes. Well, and the. Other thing is it's very what she said there, fire my pain management doctor. I want everyone that listens to this to realize we do not want to go to pain management. It is you are stripped of your dignity and I don't care if we're talking about pain management now versus pain management 20 years ago. I've been the whole time. They've never been great. They've always treated you like you're a criminal and they're looking for something to find. It's much worse now to the point that I won't step foot in there because I don't want to be treated like I'm a felon. But we don't want to go there. If we can find something that will work outside of that, we will not go.

48:02 We don't want to go. You know, it's not fun. What do I take charge of? Our health care ourselves. And that's, you know, me being dropped from pain management, while it was a scary thing to go through and I hate for anybody to have to go through what I went through, it became this blessing in disguise. Didn't realize it at the time, but like, I have spent almost 6, basically six years now where I don't have to go the doctor all the time. I don't have to pee in a couple all the time. I don't have to go to the pharmacy to fill it for them to profile me and be like, no, you know, like people don't believe that this this happens. I've I've been like so many times where the pharmacy would say, oh, we're out or when you going to get it? We don't know.

48:42 But I'm like, what do you mean you don't know? How about if? You notice a difference between brands because you've been getting a certain brand every month. God forbid you mentioned that I've had a pharmacy blacklist me and won't let me come back because they said that I was. They basically thought I was a drug seeking because I was requesting a specific brand of medicine. It just so happened it worked better. OK. And the other part too, is I don't think people realize that when we're talking about pain management, there is no part in any of that process that is pleasant. We have to think about our medicine 24/7, and they make you think about your medicine 24/7. How many hours?

49:23 How many pills do I have? Did I take my medicine on time? And then they're like, you're thinking about your medicine too much. You know what I mean? And I just always felt like it was like a catch 22. You were wrong no matter what you did. Damned if you do, damned if you don't, you know? And we don't want to go to pain management and they don't want you there. Let's be honest. Pain management doesn't want you there either. So no, I mean you're lining. Their pockets, but they just don't treat you very well. Wow, this is such a great conversation. One thing I want to go back to real quick, going back to when you're trying kratom and you're, you know, working on your dose and stuff. What I find not to say specifically with your situation, what I find with a lot of people that tell me they're using kratom and it is, it's okay.

50:07 It helps her pain, but not as well as her opioids. Many times people I talk to, it just turns out they just weren't taking enough of it, that sometimes it's like, oh, they take a little bit more. There's a a friend of mine in our community who had been using kratom I think for a year or so, maybe longer, I don't remember exactly how long. And it worked OK. And then he just felt like, oh, I shouldn't take too much. But then he'd hear us talk about keep going until you find where you get that. For me personally, if I like, I know when I can't take any more. Like for me right now is 2 teaspoons. 2 teaspoons every six hours is magic for me. I don't have any. I mean, I have other pains, of course, I'm not young. I'm pretty old now. So I get but my main pains, my degenerative disc disease that if it wasn't for some intervention, I'd be laid up in bed and not be able to function in life at all. It brings my pain level down to a 0. But it was for for me personally to figure out that how much can I take?

51:03 So you know that it's not too much where I get nauseous and throw up because that's when you know, you've taken too much. Yes, but enough where I'm getting some relief. And I don't know if it's like this for everybody, but some people it seems like they're under dosing for whatever reason. This, it's been a variety of reasons, I've heard people say. But once they just try a little bit more, it's like, Oh, well, I'll tell you this. I'll experiment over the next couple weeks and see because I haven't, I'll be honest with you, I haven't really messed with my dose over the past couple months because I just, you know how it is, you think it works and you just stay with it. You know what I mean? But I've, I've been on a tolerance break for a week now, so I will try and play around with it and see if I notice a difference.

51:46 I tried green one time and I wasn't impressed. It might have been the specific type of green that I tried, so I will try that one too and see if I notice any kind of a difference just because I've tried all three of them and I had the same reaction that you did with the white. I was not. It gave me the jitters almost. It was like, yeah, I don't describe it. It can take some. Trial and error for sure. And what's helpful is to keep a journal. Yeah, it's helpful to keep a journal so you can kind of keep track of what you're taking and how much and, and just being able to see like what's working and what's not. Yeah. I use an app called human and it keeps up with like it has symptoms and stuff in there but you can also put your dosage in time and because I'm so ADHD if it's paper I'll lose it you know so.

52:35 Where it doesn't exist. But and I may be messaging you with some questions here that I have just about personal experience so also. Be sure to join my Kratom Real Talk community because it's also a great place to connect further with me, separate from social media, but also to ask questions to our community as well. It's really a great place. Like it's kind of like a Facebook group, but I think better. So kratomrealtalk.com. So it's something I started a year ago after TikTok deleted my account one day because, you know, they don't like us talking about kratom and Oh my gosh, yes. It happens. To many of us kratom advocates and I was warned by other advocates, oh, you'll, you know don't be surprised if one day TikTok deletes your account and and you'll have to start over so not only do I start over and that's my current account, but that same day it's like I'm going to start an online community, a separate place that's not driven by social media without the algorithm where I can control it and I've been in digital marketing for 29 years so I know a lot about these things So I, I started I started kratom realtalk.com and it's like it's just a nice little place where we can have conversations and not worry about censorship or and all that negativity we see on social media. So it's in addition to our social media, but just a nice little place where we can also talk with other fellow kratom consumers, But you might, you know, also connect with some other fellow pain patients in there. That for sure as well.

54:01 This has been such a great conversation. Casey, I have one last question for you. Yeah, Knowing everything you know now about kratom, if you were helping somebody just get started, what kind of advice would you get them? I would definitely. Say make sure that you go low and slow, make sure that you eat and do self-care. Make sure that you're doing yourself care during and you're also incorporating your regular tools and your toolbox that you are already using in addition to so that you can get a really good reading of how it's working for you. Because a lot of people that I know stop like other therapies while they try kratom to see how it works. In my experience, you need to make sure that you're doing everything that you can to keep your pain level down in addition to it, but low and slow and don't get frustrated. Yeah, that's.

54:50 Such great advice. This has been such an awesome conversation. I'm so glad you came on the podcast today. Thank you so much for. Having me and thank you so much for all you're doing. If if you need anybody to give their story for something in the future, please reach out. Thank you so much, Madeline. Thank you. Thank you for listening. You can get more information at kratomstoriespodcast.com, including show notes from this episode.