Cannabis, Fibromyalgia and the War Against Invisible Suffering
Beth Dost, RN, the first nurse to stand for the “Humanitarian use of Marijuana” in Massachusetts, has heard it all. While she humbly acknowledges it’s nice to hear; privately, she often breaks down under the weight of chronic pain. Beth grimaces when she takes a step or tries to stand up, or worse, get up in the morning. Looks are deceiving and looking good when feeling so poorly is a devastating reminder that nothing is as it seems and the face of pain can be hidden behind decent genes, lipstick and a good concealer.
In this Podcast John Malanca, a trusted source of wellness and cannabis information, encourages Beth to step up and reveal what it’s like to have a disease described as “devastating” or “life changing”. She complies and discusses how, when, and what happened, recalls when her life changed forever, how pain is stigmatized, and coming to terms with the reality of suffering as a lifestyle. Few know Beth and 17 million Americans, suffer high impact chronic pain, and are now fighting for their lives against a government who doesn’t care and peers who will never understand.
This attack on a vulnerable population makes it difficult to get prescriptions filled, doctors to believe her, and every day pretending she’s fine; because we live in a society which values health, wellness and youth. Yes…Pain is viewed as weakness.
It’s no wonder that Beth has kept silent—until now.
Cannabis, Fibromyalgia and the War Against Invisible Suffering. Beth Dost, RN
John Malanca 0:01
Welcome back, everybody, John Malanca here with United Patients Group – Be Informed. Be Well.
I’m gonna start off here…
Medical cannabis is far more effective at treating symptoms of fibromyalgia than any of the three prescription drugs approved by the FDA to treat this disorder. This is one of the surprising findings in an online survey of over 1300 fibromyalgia patients conducted by the National Pain foundation and National Pain report. The FDA has approved only three drugs Cymbalta, Lyrica and Sevilla, for the treatment of fibromyalgia, although they generate billions of dollars in annual sales for Pfizer, Eli Lilly force laboratory and other drug makers. Most who have tried the medications say they do not work. The National Institutes of Health estimates at 5 million Americans suffer from Fibromyalgia a poorly understood disorder characterized by deep tissue pain. fatigue, headaches as well as depression and lack of sleep. There is no known cure of this disorder and is difficult to treat. Fibromyalgia is devastating for those who must live in its script. There is much we do not understand. We need to innovate out of out of a box solutions that change the face of this disease, says Dan Bennett, MD, an interventional spine and painter, surgical physician in Denver, Colorado, who’s chairman of the National pain foundation.
Those are some pretty incredible findings and stats and so my next guest is actually a dear friend. We’ve worked together for quite some time. Her name is Beth Dost.
Hi, Beth. Hi, john. And I’m going to read your impressive bio now too. So, Beth Dost, also known as Elizabeth DOS, RN, is a senior healthcare consultant who has who is the first nurse to stand for the humanitarian use of medical cannabis in Massachusetts in truth 2012 she’s the clinical director of the Massachusetts patient advocacy Alliance, MPa, Beth advocates publicly for those who suffer and have been marginalized. She has been fully featured locally and on numerous national broadcast mediums. She continues her advocacy work focusing both on cannabis therapeutics and raising awareness of the abandonment of pain patients who rely on prescribe opioids along with the persecution of the doctors who care for them, and chronic pain patients since 2000. Beth joined approximately 50 million Americans who chronically suffer and since 2014, has suffered intractable pain, which also makes her one of only about 17 million chronic pain sufferers. Her experiences of being stigmatized and decriminalized against it in her quest for peace has galvanized her, her resolve to help and she speaks openly about the state of suffering in America. Elizabeth das with the ward Ernst and Young Entrepreneur of the Year. healthcare and as a member of their elite alumni group, so tongue twister great having you Beth, how are you doing today? I’m doing well. We’ve done we’ve done a lot together. We’ve covered some ground back and forth. I’m West Coast, your east coast. We’ve had some great stories, great journeys, and great, great adventures, I should say for another show. Let’s talk about what is fiber miles. First off, and what are your thoughts about those studies on that study that I was reading actually was a bit outdated A few years ago, but it shows that nothing really has changed much in the in the world of, of treating fibromyalgia, with the pharmaceutical drugs and where we are today, and also I wanted to share in that study is that I believe 60% up to actually 6060 to 68% out of those three different In pharmaceutical drugs, not only were they not having success with those pharmaceutical drugs 60 to 68% were having success with cannabis to stop that pain. So can you talk about that? You know what, what is fibromyalgia and if you can share why you become a pain patient why you specialize in pain. You’re also in hospice for years. So we’ve done a lot of a lot of different stories on hospice, recently did one with you and Claudia on pain, and where those laws are where they are today, with doctors included, pharmacists included patients, as well as insurance companies, and so
Beth Dost, RN 4:47
Where do I start? So Well, we can address Why don’t we address some of the observations made by that admittedly older study, yet? You’re accurate when you’re saying I don’t think much has happened in the way of fibromyalgia care. In fact, in some instances, I think we’ve gone backwards and, well, we’ve gone hugely backwards in the treatment of pain. So, Fibromyalgia is about there’s about 5 million people that suffer from fibromyalgia and it is listed as somewhat of a rare disease. And by rare, I think you’ll hear a lot of people talking about Fibromyalgia or thinking that they have fibromyalgia but actually, it’s a pretty narrow diagnosis. And so, I think a lot of chronic pain gets lumped into that fibromyalgia. But to really have fibromyalgia they estimate the
United States which is a small number.
John Malanca 5:48
It’s, let’s let’s talk about it’s invisible disease. I’ve had doctors on the show that lack of sleep, stress Pain. It’s almost like a domino effect. And correct me if I’m wrong, that you treat this to sleep. And it’s a domino effect of what else could have happened. I mean, a lot of patients will, you know, call this over the years and say, I have stress, anxiety, depression, and what do I do, I’d like to treat them all. And you know, a lot of times best, let’s just treat one and see if you can have the domino effect when you mean when we all have lack of sleep, and we’ve all experienced that. You know, you’re kind of whacked out for the next day or two and it’s like, you’re not yourself. Maybe you have a meeting in the morning, you’re stressed out for that. That’s why you didn’t sleep and next thing you know, you know, anxiety comes on. And so I think hitting out with sleep and so one doctor, Dr. Behrman, who’s been on the show and I know you know him as well. He, when he treats he specialized in the pain patients and he’s treated a lot of patients going through this, but he goes and tries to eliminate what they’re lacking is insomnia. So he’s able to do that and Then a lot of times going after the sleep, he’s finding that it’s helping a lot of pain patients. Do you agree with that?
Unknown Speaker 7:10
I do. I think that sleep is essential to overall wellness and health. And I think that sleep is really important feeling to find or to feel well, I think it’s important. And I think as far as also aging and aging populations, if you notice, and I noticed in my career that as patients get older, a lot of times their sleep needs either are less or they’re sleeping more radically. And then I think that also enhances or promotes cognitive decline, lack of sleep. And so I think sleep is probably one of the basic elements that we need in order to maintain a healthful or at least, feeling better. You know, most people that don’t feel well if you ask them how well they sleep, a lot of them will say they don’t sleep well. So we you know, we have a whole group of people that ucpath in order to for the exam have sleep apnea. So, there’s a whole host and I think originally, way back when. And I still, arguably, it’s a concern that Fibromyalgia does originate from a sleep disorder. So probably everyone that has Fibromyalgia also has a sleep disorder, and the sleep disorders that you don’t get into stage work for REM restorative sleep. So you may feel if you’re lucky enough to sleep six, seven hours, you might feel like you’ve got a lot of sleep, but you’re not waking up rested and you’re not waking up. Most people and including me, most people wake up feeling wrecked. When they that’s the worst part of the day for me is the mornings. So I think that yes, sleep is important. It’s important and it’s and it’s a hallmark of fibromyalgia, that there’s a sleep disturbance within that cascade of what is fibromyalgia. And I just read a study or comment not too long ago, a week or two ago that said, there are over 300 associated symptoms with fibromyalgia.
John Malanca 9:19
So how do you how do you It sounds like it’s difficult to to diagnose Fibromyalgia or chronic pain to be talking about. I mean, especially if there’s 300 studies that you’re mentioning,
Unknown Speaker 9:31
well, you know what I can go, I can tell people that, for me, my passion for patients that suffer came not only from working with patients who are suffering, whether that was end of life and not everybody suffers at their end of their life, but there are a subset of patients that take advantage of comfort medications and for pain control as they’re ending their life. right up until their death Then I also worked in the ICU, where I think there’s clearly a lot of quote, and a lot of concern about covid patients have been intubated for a long period of time and what their experiences with pain are going to be. And then I worked in oncology. So I was able to sort of see the whole gamut. And then with kind of rare diseases in home care, and primarily in children. So I come from a background that I have great empathy for patients just in general because I think that we don’t do suffering very well in the United States. And then I also have a personal interest because I have suffered from chronic pain. I was diagnosed 20 years ago, but I can trace probably my first experience with fibromyalgia when I was thinking, and in nursing school, and I read in that same study, many Fibromyalgia sufferers can say their first experience with pain Wasn’t there tools or they can trace it back that far?
John Malanca 11:05
And why does it come? First off? You know, I’ve had these topics, topic discussion for quite some time, and you’ve never publicly stated that you have never mouska I never had a show. So I applaud you. For our listeners. I’ve been asking Beth to share this information. I think to the public because it is an invisible illness and I hate to say illness, but it’s invisible illness that a lot of people were looking at, you’re like, Oh, come on, pick up your step. You know, Beth, I was like that. Next round, would you hurry up?
Unknown Speaker 11:42
You know, we’re watching that
John Malanca 11:44
conference conference, speaker to the next and we’re like, come on, Beth. You know, and then I learned what you go through on a daily basis and this is something I applaud you for, for one. Trusting in me Which you have for years, but also trusting, you know, United pace group in the podcast to share your personal story because a lot of people in this industry that you’ve worked with, don’t know this. What you go through, you speak about it all the time, but they don’t know that you’re actually I mean, I’ve had you on the show numerous times. And we always use best as a third person, you know. And so, thanks for sharing, sharing, and I think, I truly believe this will help others that are going to this, that you can function because there’s days I’ve spoken to you and you’re just in excruciating pain. Or you say, I woke up today at 333 30 in the morning to be out of bed by six, you know, and I can’t imagine that type of pain going through your body. Can you explain exactly what a fibromyalgia patients are actually most fibro patient go through on what that begins? We’ve had this talk with Chris Recently and you know, and he didn’t know what what Fibromyalgia was, can you share with our listeners who may or may not know what Fibromyalgia is.
Beth Dost, RN 13:10
So Fibromyalgia is a chronic pain disorder of unknown thoughts. They don’t really know. There’s, I’ve read numerous studies about all sorts of different things. They think that the part of the brain that received pain is hyper perfused with blood vessels and nerves and neurons, and that the part of the brain that mitigates or offsets the painful receptors is under perfused. So I’ve heard that study that was a avails a Dutch study, that I’ve heard that there are people that think the epstein barr virus or some other virus pie in the marrow, and then it leeches out into the body. Some people think it’s toxins or Mercury, that have either resided in your teeth For in vaccines, so they’re really don’t know exactly what causes fibromyalgia. I think just recently they came out with a blood marker. And as soon as that happened, it kind of elevated it so, so into the disease category, but for many years, of course, it was just considered a complaint. And because most of the people that complain that suffer from it are women, but anyone, at any age, any gender can suffer from Fibromyalgia is not exclusively, any person’s disease. It’s not typically a middle aged woman’s disease. It may be diagnosed at that time, because people have time to finally think about how they’re feeling and why are they feeling so lousy? Yeah, but it’s not anything predictable. And so for me 20 years ago, I was raising my children and I had a nine month period of time, right? Had overwhelming fatigue. I mean, anyone that has chronic fatigue knows what I mean by that. It’s almost it’s paralyzing. It’s paralyzing, literally paralyzing. And I had some neurologists, I had some like numbness on the side of my face felt like it was a breeze and the car in the back my back there was no window open or anything. I had some numbness under and then I had diffused body aches, and it just went on. And I had other strange things too, like some visual changes, some wavy vision. And so I made a plan with my physician and it was so far out, but I just figured if I improved, I would just cancel it. Because as a nurse, I just don’t really like going to the doctor so much. But anyway, it didn’t, it didn’t. So I wrote all my symptoms down, I gave it to my physician and I have to hand it to him because he was pretty spot on. And when I told him everything I had, he did my exam and you said I think you have fibromyalgia, which I already kind of thought I did. But then you have to rule out Other mimickers so things like Ms. rheumatoid arthritis, lying lupus, ALS, all those diseases sjogrens or other diseases that have to be ruled out. And sometimes those other diseases actually do go hand in hand. So typical do a blood panel, they typically do a blood panel with an array factor or they’ll do on a set rate and they’ll do I had a head and neck, CAT scan, MRI, and just other various tests and they all came back negative. So it’s actually a disease of exclusion. So they exclude all these other things and then fibromyalgia. Yeah, and a lot of doctors don’t really like that type of scenario where they don’t get to drop you
John Malanca 16:47
off everything is she with left?
Beth Dost, RN 16:49
That’s right for rheumatologists. I see that all the time. So my position then it was confirmed by a rule at rheumatologists and then I went to see a world Now we were fortunate Boston to have a specialist. And he confirmed that by doing pressure points, so people hear the 18 pressure points and if you have 11, they will and what he’s just basically started by doing with me Was it just worked for my feet up, and he just put his thumb you know, just kind of like this. And he just like this. And he just wherever he was testing the, the trigger points, and he just said, I just want to know pressure, pain, and everyone pain, pain, pain, pain. So by the time you got to my hips, he’s like you’re in and he finished, he was done. And so then he went on to explain that Fibromyalgia is created, the pain is created because the body does not get into REM sleep. And when you’re in REM sleep, all your muscles relax, they go to have, you know, very deep relaxation, the lactic acid that has built up from the exercise and all the activities You’ve been doing, which is an irritant is everybody knows a lactic acid is if they run, they get the burn, they get the aches. The next day, everybody knows lactic acid is it’s excreted into your bloodstream at night, and then it’s excreted in your urine. And so what happens is, it does that because the muscles relax, deeply relax. But in fibromyalgia, if you can imagine that you were constantly cleaning, your muscles are always in contraction, so they never really relaxed so you always have that irritant that you’re dealing with, which is the lactic acid. And then other things, I think, contribute to it. And so I went it’s typically kind of an on again off again thing, so you have exacerbations and then you have remissions. And then at some point, and I think stress is enormously and doesn’t
John Malanca 18:53
ask you if stress was a major,
Beth Dost, RN 18:57
major impact If you think about it, a lot of women, and we’re going to talk about women having Fibromyalgia meant to. But those years when you’re in your 30s 40s, early 50s, you’re really working. Like if you work, you’re also you have children, you’re also working and your children are going to college. And those are very, those are very busy, busy years. They’re very stressful. And so I’m having a very high stress job. And I think that I kept saying to myself, on a daily basis, I had pain and I kept saying to myself, when I leave this job, then I’ll feel better. But what I didn’t really realize that all during that time, too, I was also getting older, and I just was going on a ladder up on it’s like, say the top rung was extreme pain, and I just thought I would step down off that ladder once the stress lifted. But now, as you get older, once you get to a certain it’s hard to reverse it, especially in something where they know stuff. Little about how to treat
John Malanca 20:03
each speaker with how to treat it. How did you treat it? I mean,
Beth Dost, RN 20:07
all those except for so I wouldn’t do sybella because I had such a bad experience with.
Unknown Speaker 20:14
So I was allergic. So
Beth Dost, RN 20:17
I pretty much gave everything a college drive, because I didn’t feel that I could complain about an illness you couldn’t see and not try to feel better. When my doctors asked me various things. So initially, I went on an antidepressant and we talked about antidepressants for pain before and I went on lfl interplaying. And that was used because it was it was given for patients in California early on in the AIDS crisis, that were having a lot of depression because of the AIDS and they found that their body is seem to improve. So they seem to have a lifting of their pain. And they attribute it to an unexpected side effect of the elbow. So that was us first and that was only I can only really tolerate that for under a year. Because it makes it made me very flat. And it will also typically gain weight on these things. And so I think like a fasci apples, which for me is more or less so to get that off, was terrible. And
John Malanca 21:28
everybody is five foot two on a good day.
Beth Dost, RN 21:32
Sorry when I tried not sure. I was fine. Perfect, but anyway, I’m not. So then I went to them for a while I just really kind of muscle through because I was still having some periods of wellness and, and so it was sort of able to tolerate it. And then I just got intolerable. So I tried Cymbalta next And that just very I had a very bad reaction just Cymbalta. You take it at night. And it just really amped me up. It was unacceptable. I try it for two nights. I told my doctor Forget it, throw it away. I’ll never use it again. And because the last thing you want after a day of a very busy day with a lot of stress, and then you have pain, and you’re trying to get to bed to get some sleep is to feel like you’re wigging out on some drug that’s supposed to help you and that’s what I felt like on Cymbalta.
John Malanca 22:35
You know, I think I think the stress too, is that you know, you don’t look like anything. So it’s invisible, you know, and so your friends and family are really supporting you saying, okay, she looks great. We’re not going to take it seriously. And so I know a lot of doctors patients that we’ve worked with over the years have even had this conversation with a doctor and they because a doctor really doesn’t know much your Fibromyalgia doesn’t take the patient seriously. So you know it. I you know, you What it has to be something else? And like you said, they’re going through the whole list of all these other other elements and crossing them out crossing crossing off. And with laughter, like, who maybe it is fibromyalgia. And so that that must be frustrating. Because we’ve had these talks about family and friends. You go, come on back, you look great. You know what you look like, you know, pick out.
Beth Dost, RN 23:22
Well, and that’s, that’s kind of the good news. Bad news. Yeah, on the one hand, you can find it so you never have to tell anybody about it. So you can be whatever you want to be just that person. But then on the other hand, when you really feel lousy, you don’t really look like you feel really lousy. But believe me when I tell you on a bad day, I can’t think of any really anything worse than a bad day as far as I feel. And then I tried Lyrica because my doctor insisted that I really urge me to try it and I had already heard things about America that we’re not positive people gaining a lot of weight a newly diagnosed fibromyalgia patients going on Lyrica because they’re just blown away by the fact that they’re in chronic daily pain. they’re new to the diagnosis, trying Lyrica. And next thing, you know, they spin around, they’re 40 pounds heavier. So I was very concerned about trying there. But what happened with me was immediately I was short of breath. And so I went
Unknown Speaker 24:31
and so that’s not completely
Beth Dost, RN 24:36
without merit within just the fibromyalgia, I call it the cascade of symptoms, you can feel short of breath. I also big reveal. I also have a second chronic pain condition. That’s often goes hand in hand, but not not all the time. And I have something called mild factual things which can be actually more troublesome than my fibromyalgia. But it kind of comes and goes. And as I’ve had them both together now for quite a while, I can almost tell the difference between the two and Li feel. Yeah, it’s sort of like a different kind of experience of pain. But pain is pain is not a good thing. And so the Lyrica was disastrous because I was short of breath. So like I said, Sometimes if I’m really tight, I can be short of breath anyway because all those all those ligaments and everything that holds your ribcage together, they get tight. You’re not really expanding. So you can see you can have that feeling. So I went on Lyrica short of breath, I went to the pharmacist that only happens in like, two out of 1000 people so she thought it was highly unlikely. And I also told her I was having a feeling of impending doom like all of a sudden, if I was lucky enough to even close my eyes, I would wake up and feel like, like really weird feeling of him.
John Malanca 26:00
You know, in that in that article, it showed that most of the patients that took those pharmaceuticals and I’m not saying poverty, kudos, cuticles are bad, we’ll get into the benefits of opioids in a bit. But a lot of a lot of the pay issue the majority of the patients that were taking those three drugs, we’re seeing more of the negative side effects than the positive. I know Chris and I did a beautiful article and hopefully in this podcast, I’ll edited splice it in here but we did an add a side by side comparison of fibromyalgia versus cannabis and the benefits as well as a side effect with excuse me with Lyrica with that and so I’m here. Can you talk about Okay, am I going a little fast forward on this? Could you want to did I cut you off on that? Just want
Beth Dost, RN 26:57
to say that so So what happened was that I was getting these feelings of impending doom, which she said was part of the Lyrica. And she said, you get used to that, like you want to spend your time getting used to yet another miserable symptom, right? And then I started having suicidal ideation. And that was directly tied to Lyrica. And because when I came off the layer that I started itching, so then the allergy was confirmed. I came off the Lyrica and then this then those ideations just went away almost instantly, so they stopped taking it. So I can understand that for people that are walking a tight line. When you start having those suicidal ideations, they can be pretty appealing. If your life is pretty miserable, and you can go down a pretty rocky road. I would encourage anybody that’s having any of those side effects. let your doctor know. You need to come off that medication ASAP.
Unknown Speaker 27:58
You really do.
John Malanca 27:59
Yeah. Have that’s what your doctor is there for, you know, that’s what your pharmacist, you know, have these discussions and don’t don’t be embarrassed that you are having these thoughts, you know, you know, because a lot of these ads are on there, they play this beautiful music. As you’re reading you’re like I’m not taking it in, you know, of what, what the side effects are, you know, cut the music guy. Yeah. And so, can you talk about, I guess the ramifications of treatment including opioids, when you’re when you’re dealing with with pain, not only pain of fibromyalgia, but just pain in general.
Beth Dost, RN 28:41
Well, so. Okay, so if you just look at what we’re talking about right now, the top three drugs when compared to cannabis are not as effective as cannabis. Right? That’s what the whole article is about. Cannabis remains federally illegal. So if you’re just if you’re in one of the 33 states are washington dc where you’re lucky enough to be able to get cannabis. Then you can start experiment with cannabis. But otherwise it goes back to the conversation we’ve had so many times about, do you become a cannabis refugee? But now you’re not moving your family for a child. You’re talking about moving a group of people that might be adults or yourself to someplace where you can get cannabis to try it to see if it works for you. And then what are you going to do with it does it’s going to be you’re gonna have to make decisions
John Malanca 29:34
in just so everyone knows best was not a case not always proponent. I mean, if you want to share your background about your father in law enforcement in cannabis was was not your lifestyle.
Beth Dost, RN 29:47
Yes. So all my my family were friends and my father had two brothers and a sister and all three boys. Were your typical Irish crops and they were all placed my father would stay please my uncle and my other uncles towneplace and then all my, many of my cousins were all in the police, my brother, my brother in law, and I had a cousin who died in the line of duty in the DEA. So we are a police family, law enforcement family. And when I was in high school, my father just said that I should be would prefer that. Well, number one, it was unlawful. So he didn’t like us doing anything lawful. And but they had a really cool way of talking to us. They just talked to us like we were adults. And they said that my father basically said, you don’t you’re you don’t know what’s in the cannabis. But you’re in the marijuana because it has been tested. So you don’t know. Back in those. This is going back quite a while now. He was smart enough to say we just don’t know. You just don’t know what’s in that. Tobacco So,
John Malanca 30:58
Beth Dost, RN 30:59
yeah. That’s being rolled That joint. And so when he said that, I thought, well, he’s right. So I’m not I won’t smoke it when I didn’t bother. And so the drinking age was 18. Anyway when I, when I was young, so, and I was alright, I didn’t need it. But so I never use cannabis. And but I was not against the use of cannabis. In fact I’m not against the use of anything a physician feels will quell suffering in a patient, nothing, anything that they want. And so, and I came to that conclusion, when I worked oncology, and I we could give. I had a hospital attorney come up because we increased morphine on a young patient who was dying so high that they want to counsel to make sure that everything was okay with that. This was really kind of before hospice, and he still wasn’t comfortable. And so I saw A lot of people just never been able to get comfortable. And it was extremely frustrating as a nurse to not be able to get your patient the most basic thing, you’re in a hospital, you cannot get your patient comfortable. I mean, that was it’s distressing for paid for nurses and physicians do. And so. So that’s how I came about. We would use cannabis at night, we allow young people to come and the joints would come in or the brownies would come in from our own college patients for getting chemotherapy, and they weren’t. So we just pull the curtain and close the door. And that would be that. And so I never had a problem with somebody using cannabis. And then when the law came out, it came up on the ballot. I voted for it. Because I was, you know, I was advocating for some other initiatives that were on the ballot. And so I thought the medicinal use humanitarian use of medical marijuana. I mean, I could not say no To that, so I was all for it. And then I learned the truth about cannabis because I went to a patient out of time local conference, and I could not. I still will say of my entire career. That was the most jaw dropping conference I’ve ever been to when I heard the truth about the endocannabinoid system. And I thought, holy cow, we’ve all been lied to, you know, lied to for years. They’ve known this for a long time now. And it was distressing to me.
John Malanca 33:34
It’s funny you say that because I earlier today I had Brian center on the on, who’s a pharmacist who you introduced me to. And he and I met at a patient at a time conference in in New Jersey. And he had the exact same reaction. He said, I showed up and he said, Oh my god, mouth drop. What Where have I been? Where’s all this information from? I forgot that happened with you. Because I mentioned Don, being you know, going to her first event in Arizona, that’s where Chris and I went to in 2001 2011. And just seeing all these doctors from around the world, sharing their knowledge of the cannabis plant and the benefits, it has on many ailments, many diseases, and I share with everybody to this is not the golden pill, the golden plant the golden ticket, but it really is it really does have a million in one uses, like, like duct tape, which I’ve spoken about on the show numerous times. But But I remember that that you were blown away the first time you went because they they didn’t teach you that in in, in nursing school, or hospice.
Beth Dost, RN 34:52
No, no, I was I was really angry. And then I was angry at our government and therefore I got I got Clinical because I was invited to participate as the clinical director for the mass patient advocacy Alliance. And they are a advocacy group that lobbies for the safe use of cannabis for medical patients. And they’ve been they’ve worked very hard to keep our programs separate adult use and medical patients and to keep special perks, so to speak, for patients that rely on it for medicine. And so and I’ve heard a lot of stories about cannabis and it’s the only thing that will help some patients. And so I became all for cannabis. In fact, I am a proponent of everybody taking 2.5 to five milligrams of a one to one every day just for health maintenance, just like vitamin D or B 12, or vitamin C or zinc. Any of those other things that you consider almost daily staples. I think cannabis should be part of that. But it won’t be part of that until it’s federally legal. So Anyway, to talk about it being relevant in the treatment of fibromyalgia, we have to realize that not everybody is fortunate enough to live in a state. And I find too with cannabis, and all the conversations that we’ve had and all your, you know, all of the education that you’ve provided john and your guests, it’s not a one size fits all. And just by the time you really think you have yourself on a good program of cannabis, you can change. So say you’re feeling better. So you have fibromyalgia, you’re feeling better and you lose a little weight. Well, then now your cannabis needs might change. So it’s an ongoing journey. As you journey through life. It’s almost like your cannabis journey follows your journey. And that’s probably the way it should be, you know, the way it was designed. And so when I found out that the endocannabinoid system from Dr. Stein, who you had as a guest interviewed before Dr. Janice Knox that is the largest modulating systems largest system in the body, and that the skin has its own endocannabinoid system. You start thinking like what are people learning in school, especially in the Health Sciences
John Malanca 37:17
is pretty amazing. When you really dive deep into this, like you said, it blew your mind. And, you know, a lot of there’s some great doctors in our industry, and I’ve been very fortunate to meet a lot of them. As colleagues, they’ve spoken in our conferences. I’ve had him on the show, and still continue to do a lot of work with them and refer patients to them because we get calls every day. Does it help with this? You know, somebody and so that’s people come. You know, that’s the whole reason we designed the United patient group is as that helping, helping hand you know, no patients or families avoid the tangled web in this industry, what to look out for work, what questions to ask You know, don’t be afraid to talk to your doctor about about, you know your ailment and what you would like to try, you know, like to try cannabis. You know, again, cannabis is not for everybody. You know, when Clinton was battling cancer, that’s one thing she said to me. She’s like, and she was someone who never used cannabis recreationally. She would just do it as a recreational, you know, she would do it at night for sleep. She thought, Oh, you know, I’ll just I’ll use tcaa for inflammation. I have a you know, she wouldn’t have it. You know, there would be like, there’s some great almost like compound pharmacists are not pharmacists, but compound pharmacies being able to make different formulations, adding terpenes in there and so she had had that plus cancer was in her family. So she thought, why am I sitting duck if I don’t do something and, you know, I remember being in an interview and doing doing one of our live Q and A’s. And someone asked, Can you take cannabis for health and wellness for event prevention? I said Chris is a perfect example. Question for you. And she said, Actually, yes, she is, you know, I’m doing this because it’s in my family and and, you know, I’m a sitting duck if I don’t do something here, you know, 10 days later is when she was diagnosed with cancer, and we didn’t even know that, you know, she just knew she had a back pain, stomachache and she just thought ulcer or something like that. And it was for our guests. It was crin. Malanca is in my wife who passed away from pancreatic cancer. And, you know, but one thing we she said Beth is, you know, she was so disappointed that it did not help her pain subside her pain, what helped her pain was putting her in her bathtub, the negative buoyancy or putting her in the hot tub. And so she spent a lot of time in the water in water just to relieve that pain. So you know, so I don’t want to give anybody false hope. That, oh, I found something. Let me take it. You know, because man, but I do want to give people hope. And again what Beth was talking about being a cannabis refugee moving, if you don’t, if you unfortunately live in an illegal state right now, your options are to buy it illegally. Like, best father says you don’t know what’s in it. Just because you know, the grower, the friend of their friend of the friend doesn’t mean that they’re doing everything you know, by the book when you live in legal states. Nowadays, there are regulations for testing the test for mold, pesticides, toxins, fecal matter what’s in it ratios, the cat contaminate profiles, and so it’s important to do that, but if you’re gonna become a recanvass refugee, my advice and I think Beth would would mirror me on this is, first off, see if this plan works. You know, make take take a long extended stay go two days, two weeks, a month, if you’re able to do it, and go to legal state and see if it works, then maybe That decision. I mean, we worked with a lot of patients who made that decision for their children. But when you do uproot your life as a canvas refugee, you’re leaving your friends, your family, your jobs, your church, but your doctors, the doctors have been that have been treating you for 510 20 years now you’re leaving all of this all your support system in the medical side and going to another state. And so you know, so before you move is what I’m getting at, see, see if this works and you’re able to incorporate that with any any other doctors that are maybe in that state as well. I mean, I’m a big fan of always making sure of medical professionals involved because as you said, Beth, it’s not a one size fits all what works for me, may not work for you. I were another female going through fibromyalgia, you might have success. Two milligrams for another person and a half success at 25 milligrams, talking about milligrams and pharmaceuticals. Can you talk about
the benefits of combining? Dr. Sue lac has spoken about this numerous times about having a pharmaceutical and the goal is if you’re going to titrate off something, make sure medical professionals involved. But what you’re able to do is instead of taking I’ll say 25 milligrams of this pill every day, every day every day and include cannabis, you may be able to drop your pharmaceutical pill, again with the help of a doctor, you know, five milligrams or 10 milligrams and use cannabis. And when use cannabis, you’re getting the same effects as if you were using the higher dose of the pharmaceutical so it’s almost the sweet spot so can you talk about that because I know you. I’m gonna say you’ve mastered that.
Beth Dost, RN 42:48
Well, I’ve mastered it and that there’s it’s such a complex life when you have something that’s chronic like this. I just want to tell everybody that experiences chronic pain. There are a lot of people out there that actually really do care about your suffering. Although right now, the United States is not a friendly The world is not a friendly place to be if you’re a pain patient. And there are things that are happening at the federal level, the Senate and an individual state levels that were kind of going backwards in our treatment of pain. And there are people that actually believe that pain doesn’t exist. And of course, we know that being exists. Pain was built in as a protective mechanism for humans and animals so that you don’t leave your hand on a burning stove. You know, we’ve all seen these very rare diseases. Children don’t feel pain, and it’s very scary because they don’t know when they broke their bones. They don’t know If they’ve had a head injury, they don’t know if they’re sick, they just feel good all the time. Oh, they don’t feel pain. And that’s very dangerous. So we know that pain exists. It’s the treatment of pain that causes a lot of aches right now. And I think that’s because there are forces at play, where there’s money to be made. We are we are a country that’s in pain.
John Malanca 44:24
Beth Dost, RN 44:26
so there are multiple modalities and how to treat pain. But they’re they’re kind of narrowing it down. And behind all this is the influx of money, insurances, pharmaceutical ization of medications. And I think there are a subset of patients that have been that want to return maybe to plant based treatment. But what I’ll tell you is that cannabis has really never created a pain free existence for me. What I find I have, Arish, I have a very specific ritual that I take my cannabis. And that doesn’t mean that I can’t take additional cannabis, if I want to experience some that’s a little higher in THC and maybe get a little long feeling of wellness or euphoria. I’m not there’s nothing wrong with that. But what I’m saying for myself, I have a pretty specific routine that I’ve developed and a lot of experimentation over a number of years. And I’m kind of just what I do. But what I tell people is, I don’t think if I have pain, that I should go and smoke a joint, because if I get by, I’ll just die. And then I’ll still have pain. I won’t care as much about it the pain, but I’ll still experience it. Much like perenne you know, I don’t There’s an isolate that really addresses like, pretty severe, intense, long lasting thing. So what I think I get is I get a lifting, overall lifting of my symptoms so that they don’t seem as significant to me as if I don’t take them. But I also and I actually checked this with Raphael mature. I emailed him Dr. Matura. I do find though, if I come off my regime for any reason, saying was to go on vacation, and I didn’t have my cannabis with me, within about four, four days, my pain will be ratcheted up and I just, I just call it electric. You know, I just become electric. And everything is causes pain. It’s a it’s an experience unlike any other it’s hard to describe.
John Malanca 46:50
Well, then that originally happened with you, you didn’t you take a family trip. You didn’t even bring your medicine with you. And then you realize like, Oh my gosh,
Beth Dost, RN 46:56
yes, yes. When I got full. I was in That was the first time it happened to me. I did brandy with me. And after about four days, oh my goodness, my pain just was like, amplified up. And that’s what prompted my email to Dr. Shawn. And I asked him if he saw a rebound in patients that come off cannabis, which actually makes sense. And for certain symptoms, and he said, Yes, this is what we are starting to see in patients, we need more data to understand it. So it was very interesting that he actually confirmed what I see. And that’s very consistent like I can, I can see it’s happened more than once. If I come off this regime that I take that I tell you doesn’t really seem to like, attack my pain, but you know that it does something because for days without it at all be it will ratchet up and it will be everything will be like on fire. You know.
John Malanca 47:54
Can you share how and why cannabis works on the pain receptors. I mean, it’s been an analgesic Music is really one of the you know, that has been one of the, I guess number one qualified conditions that people call us out. No, and it’s fortunate. Allstate you mentioned 33 states in the District of Columbia, you know, have legalized medical cannabis in some form. Right. But not in all of those states. Pain is not a qualified condition. Right. He could Brian today, you know, pain was just added just added to Connecticut’s qualified condition. You know, they started off in 2012 with 11 qualifying condition. I think now they’re 35 or 36. And he said just in the last few months, just in the last few months pain was added to that. And that is that has happened in other states where pain is accepted as a qualifying condition. But cancer is not I mean, it just blows my mind. And so a lot of the doctors are saying, okay, Bill. I know your dad’s billing your grandson’s bill, so I’ll change names. Okay.
I’m superstitious. I don’t want to I don’t want to put anybody on note or you know, with that, but anyway, but it’s so hey patient, you have cancer, but it’s not approved condition here. You know, so I cannot recommend cannabis to you. But you have pain, right? Yes. Great. Wait, I’m gonna I’m gonna prescribe or recommend I should say. In in Connecticut, they call it certifying, you know, so it’s here. It’s recommending they’re certified in and you know, Brian told me today that cannabis in the state of Connecticut is a schedule two classification. I mean, I learned a lot today on that on that call. And so yeah, Anyway, listen to this crazy
Beth Dost, RN 50:01
and how different the states are.
John Malanca 50:06
Yeah, that’s the thing. Each state has their own rules and regulations. And so anybody that listen to this, go to your Department of Health website, you know, Department of Health, you know, California Department of Health, Alabama Department of Health, Colorado Department of Health, Massachusetts, and you will see there’s a medical cannabis division and all the Department of Health’s out there and you can find out what the laws are, what the rules are, what the qualify conditions are, and ask questions if you’re not in a legal state. You know, don’t be afraid to to write to your congressman or your senator and try to get this plant approved for you. I mean, it you know, chronic pain, cancer, all these diseases might not affect you personally, but I guarantee it’s gonna it’s somebody in your circle if it’s a member, a loved one Go work colleague. You know, so, you know, it’s it’s it’s sad that this is how life is, you know, why can’t we just be born and have a full life? Right? No, I mean I that’s the thing that’s the one part I’m struggling on right now after losing Curran I don’t understand someone who took care of her health, you know. So this is real life for me of continuing on and helping being a health advocate and the patient advocate of, of what’s going on and doing a show like this and I think that that’s why you trusted me to come on and share you know, your invisible illness with with me and all of our listeners too. And so I thank you for that too. Can you share? I know you’re doing a lot in the pain world. Can you share what it’s like to be a pain patient of fibromyalgia patient and not having access, full access sometimes when you really need it because sometimes you go in there They said up sorry, Miss dosti, you’ve already had this prescription
Unknown Speaker 52:06
John Malanca 52:08
28 days ago, you know, you need to wait two more days. He’s like, how do you know what I felt like in the middle of all of my last 28 days, I could have been on a level one to 10 I could have been a 15 and pain and I needed to take. So now you come in there looking like a criminal looking like an attic looking like you’re abusing this. It’s like, I’m in pain, please help. And, you know, that happened with criminai when she we came back from a doctor and they wouldn’t fill it because they gave her a small amount. And it wasn’t and we came back from Stanford oncology. And they said, No, we’re gonna up your amount. And we went back to our local CVS and they said, No, no, your insurance won’t cover this week and we can’t fill it because you’ve already we’re, I said, Look at the difference. This is we’re, you know, my wife has pancreatic cancer, she’s in pain. And so it’s frustrating. That’s what what Brian was talking about being a farmer Because we deal with the doctors getting mad at us, the patients getting mad at us, we’re getting mad at the at the, at the insurance companies, we’re getting mad at our headquarters. And he goes, and that was just after, you know, 17 years of working, you know, in a big box organization and he worked for Walgreens and he goes, it happens in all all of them. You know, he was that’s where I had to sit back and say, okay, is this really my better serve? My better being served being able to serve patients otherwise, and so you know, so he’s doing out there. So can you talk about a day in the life of a pain patient of because you have been denied before?
Unknown Speaker 53:38
Oh, yeah. Oh, yeah. I’ve been through the gamut. I mean, so probably about
Beth Dost, RN 53:48
five years ago, I probably I had a weekend was in my pain was unmanageable, when I mean, unmanageable. I was jumping Up and down in my drive race, crying because I was in so much pain, and I ended up taking an opiate. And I can only take a few I have a lot of allergies, which is also kind of a hallmark of fibromyalgia. And of course at that point, I haven’t been diagnosed with my additional pain condition, which is myofascial pain syndrome, which causes tremendous ringing in my ears like constant tinnitus constant as they’re screaming right now. And so I was really suffering and so we have gone through everything. And so I started taking opiate and it was amazing. When you’re in a lot of pain and you take the right dose of an opiate, there’s not really anything quite like it in mitigating or decreasing pain because it acts right on the pain side. receptors, it doesn’t act on the CB one or CB two cannabinoid receptors, it acts on the pain centers in the brain the pain receptors. And, and of course, opiates originally were derived from natural from plants, right. So we have credo we have Bobby, you know, we have cannabis, I mean, God gave us quite a bit of quite a bit of plants that help us in our end. There are many other ones that that herbalist far smarter than I in that world know about. And so, when I have really bad day, if I take the right Joe and I take my cannabis, and I’m still miserable, I take the right dose of an opiate. It’s almost like once it starts taking effect, like someone’s like a racing, like with an eraser, your Polo it’s I can’t describe it. It’s It can be pretty profound. I can remember once I was looking at my stairs and I was thinking, you really need to vacuum those stairs. They’re all pretty ratty and frozen, so much pain, and I just didn’t feel like doing it. So I took some medication, so my medication, and within an hour, I felt good. I got up and I blacked out. And I just remember, it being really a profound thought that all I did was I just took two pills. And within an hour I get back in those stairs and an hour and a half ago that seemed impossible. And so what’s happening now really briefly, is that because of the addiction crisis and addiction is drugs seeking without me without a physiological, so you don’t have a pain condition you don’t Cancer, you don’t have fibromyalgia, you don’t have ankle aces by all sorts. There are many, many painful conditions. And so you don’t have that. And you just drugs. And you’ve either gone gotten there because you started maybe with alcohol and you progressed upwards. Or what the government says is that a lot of people started by a prescription drug. And that’s just not true. That’s just like an urban legend. That’s not true. Only about 17 out of 100 people started their interest in our products or opiates, with a prescription of opiates, and they exceeded the use then we use, a person that does not have an addictive personality will self regulate. So they’ll forget to take a dose even if it’s prescribed if they’re feeling good, which which can be problematic because then their pain can ratchet up if that’s what they want, which is usually is taking a course with being right and so on. That’s kind of like my little pain story but to live a life of
Unknown Speaker 58:08
it’s challenging. It’s challenging.
John Malanca 58:12
I’ve seen firsthand with you on, you know, you’re traveling when we when we filmed or recent show out here, you had to come in town a couple days ahead of time just to get your body acclimated after being airplane, you know, for five, six hours and then situated and getting your body Okay. And then even wanting you know, to be at the location to to, to film. You know, it was, you know, we all got out of bed an hour earlier you had been out for three, four hours going, okay? You know, I’m going to be there on time. You talk about taking your pill and you know that it’s going to that it’s gonna you’ll feel something or you’ll feel better, you know, the erasing part. On a good day. Can’t emission nonsense Sometimes Did you ever have your experience you know, ingesting, you know via vaporization or smoking and having that instant instant and then and then having a catch up or having the opioid catch up an hour and a half later.
Beth Dost, RN 59:12
So what I, what I typically do is I take the majority of my cannabis at night, so I’ll take I’ll usually
John Malanca 59:24
like before bed or
Beth Dost, RN 59:28
so what I’ll typically do is I’ll take cannabis in the morning when I wake up, and I can repeat that and I tweak a three to one with thca So three part CBD it’s very important to know this free part CBD to one part THC with thca in a capsule and it looks just like a vitamin E capsule. And then I can repeat that because I have no psychoactive effects with that three to one preparation and that That’s really something to be taken long term and I have been taking it for quite a while now. I mean, quite a while. And I do well with that, and then at night, and what I recommend to a lot of my patients is, I take an edible, that’s THC and strain or no strain, it has to be indico meaning because if it’s achievable, meaning it will make me wakeful, and CBD will make me wakeful in lower doses during the day, like I’m talking 42 milligrams, 80 milligrams that will wake me up. So I can’t take that just like coffee, like I can’t take it out for free. So if I missed that window and I want to take CBD, sometimes CBD will just do the trick for me, CBD and sometimes aspirin will do the trick for me to a couple aspirins. I can’t do that all time because you know, with aspirin I have to offer but anyway, and then I’ll so in our before I want to kind of close my eyes all take My animal,
Unknown Speaker 1:01:01
Beth Dost, RN 1:01:02
15 minutes before I want to really go to sleep, I will smoke off high THC in the coal hybrid. And I take four bucks and that’s it for me.
John Malanca 1:01:14
You know all this in preparation of your next day and that in that that’s that’s tough, you know for you.
Beth Dost, RN 1:01:20
First of all, it’s to the day I’m in.
Prep me for the next day. That’s right, exactly right.
John Malanca 1:01:28
Yeah. In Dr. Behrman has has mentioned this quite a bit that he recommends, you know, having something by your bedside table. do that so you go back to sleep and so allows you What’s that?
Beth Dost, RN 1:01:44
I keep to it about five milligrams on my chocolate two pieces right next to my bed and if I wake up, depending on when I took it, if it’s been three hours, I’ll take another. Yeah, just lay a meta profit in my mouth and just go to sleep. Sure, it’s out You know,
John Malanca 1:02:01
your husband must just shake his head with you. Okay?
Beth Dost, RN 1:02:07
He doesn’t even know it. You know, I keep it. So on the down low. Yeah. It took me I’ve been in the industry now since 2013. So the cell phone, it’s taken me to have this conversation. So
John Malanca 1:02:22
to come out of the closet Well, welcome glad you’re here. You tell you tell your husband Well, the phone starts ringing and this is why would you do up there? So you know, and I know your your your your your kids support you. And so everybody she Beth is a not only a wife, but a mom of two boys and a girl and a grandmother one time, which is about to be two times.
Beth Dost, RN 1:02:51
John Malanca 1:02:53
A lot of boys. Yeah, we’re in the midst of COVID everyone’s locked in. And so we’re in the midst of COVID right now. Her getaway is
Beth Dost, RN 1:03:04
behind me is because I have no place to go in my house
John Malanca 1:03:07
they take they’ve taken over here to
Beth Dost, RN 1:03:11
their own apartment and decided this was a better deal.
John Malanca 1:03:15
Hey, who doesn’t want to go back? Mom take care of take care of you. Let’s talk about, you know, federal laws, not only with cannabis, but with the opioid crisis. You’re talking about, you know, being denied. I know you and Claudia Miranda or Randy right. Yeah, sorry. Sorry, Claudia. I knew that. You know, I recently had you both on the show of what you’re doing, not only for fibromyalgia patients, but for pain patients. Nationwide, not just not just in your your part of the world to talk about what you see the federal government how they’re, you know, hurting or helping patients. Patients,
Beth Dost, RN 1:04:00
they’re hurting pain patients. They’re doing nothing to help patients. I think that was very interesting. I was watching, and I don’t typically but I just happened to be sitting there in the today show came on. And it was interesting because they said they had a marijuana, somebody that was going to talk about marijuana and the impact it has on the drug market, the illegal drug market. And I thought, Oh, here we go again with the entry to illegal drugs. I couldn’t have been more wrong when he was basically saying was that with the incarceration or I believe it’s El Chapo, who was a drug war down in South America. He was sort of a stabilizing force in that unstable world, with his incarceration and the decrease of the trash. I’ve never said this on one of your programs, but this is what they reported on The Daily Show. And the decrease in the in the supply me for cannabis. They were moving into other drugs. Okay, you know, the call for marijuana or cannabis was totally decreased by so many states going legal now we’re growing it here ourselves. They had a destabilizing force with one of their leaders. And then you had more aggressive people that were in this in the business of moving illicit drugs, and they had moved into harder drugs. And I think that’s part of what we’ve seen. fentanyl, synthetic fentanyl that’s being produced. The heroin that’s being produced. It’s very cheap, and it’s on our streets. And that’s the big problem. But what was easy was just to target the doctors that and I’m not saying if there’s a bad doctor, he needs to be called in But what is a bad doctor? And how would you really define what is a bad doctor? If it’s a quote unquote, pill mill will show me the pill mill, you know, shows the DEA the pill mill, but what people don’t realize is that the DEA determines the number of opiates that they’re going to allow into our system in the United States. And so what happened with COVID, which is a perfect example is because
of the illegal
so somehow, the illegal
business that caused so many deaths and destruction and overdose and it was so tragic, and young people, somehow that morphed into an unintended consequence, which was patients that were maintained on opiates for long periods of time, doing very well and having some semblance of a life because they don’t experience drugs the same way somebody that is addicted to drugs experience that way. You have thing, the drugs tend to work on the pain and block the receptors. And so most, if not all, of patients I’ve talked to that use opiates, never experienced the euphoria. They just experienced that if they’re lucky, that sort of erasing of the
bane allows him to function. So somehow that got all mixed up.
And they started going after doctors, they persecuted arrested in prison physicians.
Unknown Speaker 1:07:32
Beth Dost, RN 1:07:34
the Medical Board has unqualified immunity. And we’re calling for a change to that. And so doctors don’t really have a way unless they find it. And then they’re fighting hundreds of thousands of dollars, when in fact, it used to be that there was just a relationship between the fake patient and the physician. And now you have long lawmakers and legislators who have agendas that a lot of us don’t know about. What their agendas are that are dictating what happens between the physician and the patient. And I find that it’s very, almost laughable that we look to doctors who are some of the finest thought leaders in the world for answers for COVID. And what are we going to do to control this virus, and yet the government will come and just cut them off at the knees because they recommend opiates for their patients who have intractable pain,
Unknown Speaker 1:08:29
or chronic pain, or short term
John Malanca 1:08:31
pain. Makes a doctor kind of like clam up and is afraid. happens. I mean that’s happening in the cannabis injury. It has happened in the cannabis industry where a lot of doctors like I can’t, I can’t recommend this, you know, because I’m afraid of that. Even in the international, integrative oncology world, you know, you know, using other forms of, of treatment, you know, stem cells Being one, you know, different different, you know, ozone being another, you know, a lot of these doctors have been forced to leave, leave us move down to Mexico go overseas where they’re not going to be, I guess, live in fear or spent spent. I mean, if doctor down in Mexico, an American doctor has been now there for about 1819 years, but he said, john, I spent all my time in court defending myself coming to my clinic, they embarrassed me in, you know, with all my patients. And not only did I win every case, but it cost me a lot of money to defend myself. I said, You know what, okay, I’ll go treat my patients. And now, Americans go down there, South Americans go down there, agents go down there Europeans go see him, you know, for different treatments. And I just think, you know, health and I talked about this your friend of mine is a chiropractor in his office. He has a big scientists pain is not a way of life. You know, I mean, in that well said pain is not a way of Because a lot of pain patients go it’s just part of getting older. You know, I can’t you know, we were talking about Brian are talking about today you can’t roll around with your grandkids You can’t do this. You can’t vacuum those those steps you’re talking about, you know, and liquid liquid and so and, and just for our listeners too. I know Beth, and I know after this podcast from sitting down, she’s going to be in pain. Can you talk about that? I know, right now.
Beth Dost, RN 1:10:34
Yeah, I get dragged on my collarbone. Right. said if, you know, I just reached over to get a pill. I was like, what I mean? I mean, I’m just always in pain. It’s just
Unknown Speaker 1:10:46
always my reality. And
Beth Dost, RN 1:10:51
you’re kind of like a pretender, you know, you don’t want to tell people like I don’t like I don’t I think people that are in pain,
Beth Dost, RN 1:10:57
either want to talk about it
Beth Dost, RN 1:10:59
or they just want Find out don’t want to talk about it.
Beth Dost, RN 1:11:01
I don’t like to talk about it because I don’t know.
John Malanca 1:11:06
But I think it’s I think it’s good for you because you’ve been holding on to this for a long time and we’ve had talks you know with with your cousin, Dr. Meg, you know where you’re like I should you have to have these conversations you know, get this off for patients.
John Malanca 1:11:25
But I think that’s what this is for is to share because I know you know, I know that a lot of our listeners are probably going through this and going god I’m not alone. I’m not alone this year. I hear what’s going on here. So so you’re not going to be in more pain. I appreciate your time. I’m coming out here and you’ve done so much. For me. So much for United patient group you’ve done so much for the mission of education not only in the in the pain world, but also in the in the pain and pharmaceutical prescription world but also in the pain with the cannabis world and I commend you on coming on the show and sharing your story. But you are a thought leader, you worked with your local government, your state government, and you’re involved in so I appreciate you not being invisible, like Fibromyalgia isn’t visible.
Unknown Speaker 1:12:24
John Malanca 1:12:26
Thank you. Do you have any closing words or closing thoughts you want to share with our listeners?
Beth Dost, RN 1:12:32
Well, I think the one thing about fibromyalgia, you know, it’s kind of an interesting thing I mentioned to a gym owner, he was a gym owner. And I said to him, he had a lot of different programs for different mallets so he had like a balance program. He had a you know, for elderly patients to come in and so he had all sorts of things going on. They said, you should do something for fibromyalgia patients. And you’ve responded to me by saying that remember, of course, he doesn’t know. So responded to me by saying, oh, fibromyalgia patients, they’re the most difficult patients to deal with. They’re also down and out. And I’m thinking to myself, I don’t even know, buddy. What? What you’re saying because you had no idea. And so that’s why it’s kind of nice to be incognito too because you kind of get the real deal when people think that Oh, wink wink. They’re really I mean,
Unknown Speaker 1:13:32
I’m not I’m kind of in you can be upbeat, active and have fibromyalgia you which you are. Yeah,
John Malanca 1:13:43
I think so. Yeah. Trust me, you can’t get hurt that
Beth Dost, RN 1:13:59
you know, when You were talking about that your struggle with understanding
Unknown Speaker 1:14:05
Beth Dost, RN 1:14:07
for my new and was such a lovely person. And so like you said full of life healthy looking wonderful. And as a nursey I’ve known so many people that have just touched me and had like the worst situations that they were facing and, and, and they’ve made a lasting impression on me. And you try and wrap your brain around that. And there are just some things you can’t and I think having chronic pain
Unknown Speaker 1:14:38
is the type of thing that
Beth Dost, RN 1:14:41
it’s a very hard thing to articulate, which maybe is part of the reason why I don’t like to talk too much about it, because for a long time, I tried to find if there was any reduction in suffering.
Unknown Speaker 1:14:57
So I had my own internal struggle of
Unknown Speaker 1:15:01
Kinda kind of the Why me or why pain or why
Beth Dost, RN 1:15:08
such such disregard for the reality of how debilitating chronic pain can be, and how much I, you know, struggle in, you know how you struggle to just do the average daily thing sometimes. I mean, I can remember once I was just kind of in a flare and I picked up a glass of water and I think I handed it to my son I said, this is just like, so happy to you, like lots of glass of water, but the glass of water just felt like the weak pipe was I just, it just I was tired. You know, there’s a fatigue piece that goes along with it. So I guess my whole thing is that it gets you searching in a different way for what is the meaning of life when these things that fall upon you these conditions of being Human fall upon you, and you didn’t do anything really, that you can think of the tool is today. And so for a long time, I was trying to find redemption and suffering. But I decided that there’s really not a lot of redemption and suffering after all of this. And so I guess the thing is that, you know, every day I just try and get up now and say, you know, to myself and to God, you know, thank you for this beautiful day, and I’ll make the money to try and make the most out of it. And I think that that’s kind of, if people can, it’s hard, it’s hard to feel that way. When you’re miserable. It’s kind of mind bending, you know, so, you’re always searching for meaning.
Unknown Speaker 1:16:48
We should often
John Malanca 1:16:49
Unknown Speaker 1:16:51
That’s why we should also
Beth Dost, RN 1:16:52
search for meaning in a beautiful sunset, right? Well just search for meaning on a day you feel great and everything clicked. You know? We take that for granted. It’s only when you’re faced with adversity, that you start looking inward and the y’s come up and, and that type of thing. And as you know, they’re so hard to understand the why. And so I would just encourage anybody that’s
Unknown Speaker 1:17:15
going through it.
Beth Dost, RN 1:17:18
There are a lot of people that care about you. There are a lot of people that really want you to feel better. And there are a lot of people that understand how you feel. And maybe they’re not your family. And we could spend an hour on the effects it has on relationships because an invisible illness as unexpected
Unknown Speaker 1:17:41
effects on relationships.
Beth Dost, RN 1:17:42
And so but I just would encourage everybody to know that there are people that are fighting and if you want to, you know, there are multiple Facebook groups that address
John Malanca 1:17:53
if there’s any support group is
Beth Dost, RN 1:17:56
fibromyalgia and if you have a weird accent You can generally look it up and you’ll find it that that’s usually what it is. And the symptoms are, like I said they are, they can be purpose. So that’s I guess that’s my thoughts on that.
John Malanca 1:18:15
Thank you, Beth. Appreciate you coming on and sharing and Beth is a regular here with what we do here, United pace group, so you’ll see her again, but thank you, Beth. I appreciate you doing it and, and one step forward, you know, stay positive. So, everybody, thanks again for being with us. This is John Malanca, with United patients group being formed and be well we’ll see you soon. Bye bye.