Meet Lori Verton: Living With Unseen Fire

Imagine a constant, burning, stabbing pain deep in your spine that spreads unpredictably throughout your body—like a wildfire racing along nerves tangled like sticky spaghetti. This is arachnoiditis. The pain is relentless and impossible to escape. It takes hold of your life, challenging your strength and testing your endurance.

Today, I’m honored to speak with Lori Verton, who faced years of uncertainty and misdiagnosis before finally getting the truth about her condition. Through her journey, Lori found strength not only in understanding her illness but also in connecting with others facing similar challenges. Together, they built a research network to provide education, support, and hope for those living with arachnoiditis.

If you or someone you know lives with arachnoiditis, stay tuned—you’ll find both hope and valuable insights in this episode.

Transcript

A Brutal Condition Few Know

SPEAKER_00 0:00

How do you live and manage your pain? This is turning pain into strength with your host, published author, and certified health practitioner, Michelle Eberwein.

SPEAKER_01 0:15

Hi, welcome to the Turning Pain into Strength Podcast. I'm your host, Michelle Eberwein. So today I am bringing you a guest who has arachniditis. Now, what in the world is that? Well, let me tell you, if you can imagine the nerves in your spine and they all start sticking together, that's arachniditis. And I am shocked at what a brutal condition this is. It's caused by inflammation and it traps the nerves, causing constant unrelenting pain. So today I'm speaking with Lori Vurton. She has endured years of this pain. She has had misdiagnoses, she has had unrelenting pain, chronic pain, just all kinds of things. Before she got a name for her condition. And that is arachniditis. But here's something truly remarkable. A group of patients came together and built a research network to help others get educated and feel supportive, and of course, not feel so alone in this process of dealing with chronic pain and chronic illness. If you live with arachniditis or you know somebody that does, stay with me. You will find inspiration and insight into this episode. Thank you so much. And

What Adhesive Arachnoiditis Really Is

SPEAKER_01 2:00

here it is. Okay, so your name is Lori Vurton.

SPEAKER_04 2:03

That's right.

SPEAKER_01 2:04

And you have chronic meningitis, which I'm very interested about. And now I'm gonna try to pronounce this arachnoiditis.

SPEAKER_04 2:15

That's right. Adhesive arachnoiditis.

SPEAKER_01 2:18

Okay.

SPEAKER_04 2:18

Um and I will explain later on how chronic meningitis and adhesive arachnoiditis are essentially the same. Yeah.

SPEAKER_01 2:25

Okay. Now were you diagnosed as a child?

SPEAKER_04 2:29

Uh no, arachniditis and chronic meningitis always starts with a trauma of some sort. Now it can be like it can be an internal trauma, like a discernation, some type of a misline of growth or something to start out with. That you know, a lot of people let me see where I can start. So adhesive arachniditis and aseptic chronic meningitis are the same condition. They're a spinal canal, inflammatory condition.

SPEAKER_02 3:09

Okay.

SPEAKER_04 3:10

Um, and it always starts with a beginning trauma.

SPEAKER_02 3:16

Okay.

SPEAKER_04 3:17

Now we have children that have it, but it's usually a birth trauma or something associated with a repair that they've done from something else in their spine, and then this turns into it later on. So it's a really debilitating disease, it's extremely painful. What happens is when a trauma hits a certain region in this in the spinal canal, which I can talk to you about in a little bit. In some people, for some reason, an inflammatory process goes off the rails. And what starts as a normal inflammatory reaction, which is actually originally a healing reaction, any inflammation at the first site of an acute injury is actually a healing reaction. But it has gone, and we do not know why yet, but it goes into overdrive, and once it starts, it can't stop. And what it typically does, it's found in different regions in the spinal cord. You can find it in the brain, you can find it in the eyes, you can find it in what we call the thoracic, which is the chest, and you can find it lumbar, which is like from the waist down. And typically, because of our current lifestyle with extra weight and extra physical stress and that sort of thing, quite often we're seeing it in lumbar. Okay. What it does is from the spinal cord, there are things called spinal nerve roots. And what they do is they come away from the spinal cord, especially in the lower portion of the body, it's called the colour quina. And they're meant to go from the spinal cord, relay the messages to and from the spinal cord, and be a connector to sort of this other system that then relays to the muscles and to the sensory system. So it's a key connector to relay those muscles. And the problem is there's a covering around all of the actual spinal cord and the spinal nerve roots, those things that are extending out from the spinal cord. Right. And they're called meninges. It's a covering. There's three meninges, and you'll see in a minute why meningitis comes out of this. There's three mening. So if you have your spinal cord in your brain and all the way down, you know, into your bottom region where it closes off, you first off see a sac. And the sac, the outer sac, is called the dura. It's a tough membrous sac that surrounds the entire brain and spinal cord and keeps in the cerebral spinal fluid that you have to have your brain and your spinal cord floating in. Okay. So between that and then the the next, there's an area that called the epidural space and the sub, there's there's a number of areas in there between the dura before it floats through and then gets really close to like a covering around the actual spinal cord tissues themselves. And their other two meninges. One is called the arachnoid meninge, and the other one is called a PIA meninge. Now, the arachnoid meninge is responsible for creating all the cerebral spinal fluid, which is what floats your brain and acts. There's no like up, there's no frank blood in that in any of the spinal cord area like that. It's it's all circulated for waste and everything through the cerebral spinal fluid, and it actually replaces itself one to two times a day in its normal volume and it runs like a river.

SPEAKER_01 7:10

Wow, I don't know about that at all.

SPEAKER_04 7:13

Yeah, and so in in most people, it functions perfectly well. And for some reason, once the damage has been done in this section of people like me, it creates an inflammatory overreaction in the arachnoid membrane, which is the middle of the three membranes. And it's also the arachnoid membrane that's responsible for actually creating the CSF fluid.

SPEAKER_02 7:36

Okay.

SPEAKER_04 7:37

So it can create some major problems. And what happens is for some reason that's yet not known, once the inflammation gets going, rather than stopping, it starts becoming overactive and be laying down an adhesive layer of cells that are almost like a we say they're like akin to a scar tissue. They're not scar tissue, but they're very similar to that. And they lay down over, usually typically over the connections that are coming off the spinal cord. And as I said, moving to the other areas outside the spinal cord, which is covered right into your, say you're going in the lumbar area, right through your nerves that then meet this other area, and then from those nerves, from that area, that junction, that's where we usually find the adhesions. But this problem with the adhesions is that it means that a lot of the nerve signals are now cut off because the scar tissue builds, the adhesions build, and it becomes too uh stiff for it to move. And so it starts essentially killing that nerve root, or either killing it. I mean, so that it's not like dying and decaying, but it's no longer usable. It doesn't get doesn't get perfused well, and so the signals essentially stop going, even though signals is coming down from your brain and into your spinal cord, when it tries to go out to your limbs and get your sensory processes back through your limbs and your skin and all the rest of it, it it's like a bad circuit, it's like a bad connection, and so you get constant drops in it, and that creates a number of symptoms that are typical with it, which is really difficult neuropathy, which is that fiery, hot, burning sensation. A lot of us describe it as lava flowing, that will see from this cerebral as the cerebral spinal fluid hits different areas that it's not supposed to hit in a number of things. So, anyway, we create a lot of neuropathy, it creates weakness, it can go as far as paralysis. And typically, again, the majority of people that we see, although not all of them, have lumbar arachniditis, and I'll tell you how that works in a minute.

How Inflammation Becomes Nerve Glue

SPEAKER_04 10:02

And so they really struggle a lot of us to sit. We have a lot of pain with sitting, most of us can't sit. We have a lot of lot trouble with standing or walking, although, depending on which of the grades, like how severe it is, some people are fine. And I'll just briefly tell you how chronic meningitis and adhesive arachniditis are similar, or at least arachniditis are similar. So the arach, the arachnoid is a meninge. Meningitis is inflammation itis of the meninge.

SPEAKER_03 10:40

Okay.

SPEAKER_04 10:41

Okay. So when you have meningitis, you're having all the either that meninge, the arachnoid meninge, the dural, or the P meninge, and typically all three, becoming really inflamed and and really creating this whole inflammation system. In chronic meningitis, the initiating trauma, which is typically for most people and most is infectious arachnoiditis, is either an uh viral or bacterial infection that starts in that area, or it's a fungal infection, or you can even get like a tuberculosis form in countries that have a lot of tuberculosis. That can create the acute form of arachnoid, sorry, of meningitis, which would be called infectious meningitis or viral meningitis. Some of them are really devastating and can quick kill you quickly. And depending on how you get your treatment, others, you know, you might end up okay. In the end, because essentially arachnoiditis is an inflammation of the second of them, the arachnoid membrane, it is considered a meningitis because it's one of the meninges. And the chronic part is that the infection, the fungal, the parasite, whatever, is gone and it's still remaining there as an inflammation and damage.

SPEAKER_02 12:03

Okay.

SPEAKER_04 12:03

So chronic meningitis, we use that term because there's arachnoiditis is the most frequently seen version of that in our pop in our population, in most populations. But people that are diagnosed with it that are starting, it's called like epidural fibrosis, where it starts with from the outer meninge and moves in, can also be have the same series of problems, exactly the same series of problems. So it that's why we when we our our nonprofit is called the arachniditis and chronic meningitis, so that we can capture all of

Surgeries Epidurals And Other Triggers

SPEAKER_04 12:40

that. And it's a collaborative research network. And a collaborative research network is actually a special name for a special research type in rare disease. It's a research program infrastructure in rare disease. So that's how we get the long name. Yeah, so I saw the abbreviation. Yeah, H C M C R N. Um, and we recognize it's not the the best. When we started, though, we are we were primarily focused on research. And so we wanted to be very clear that for the other researchers that that's how we were working.

SPEAKER_01 13:13

Okay, yeah, that's great.

SPEAKER_04 13:15

All right, so that's how that works. And I can tell you the tale if you want, and then I can give you more information about a rocket. Absolutely. So, like I said, as far as we've seen, there's been some insults, whether it is something like disc herniation or like uh viral sometimes spinal surgeries, in fact, oftentimes spinal surgeries, things like epidural pain needles that you can be put into your into your lower back for either for having babies or when people are having these, they're called ESIs, epidural steroid injections, which a lot of people in chronic pain use. It can actually be the cause of arachniditis, which can also turn into adhesive arachniditis. The difference between arachniditis and adhesive arachniditis is arachniditis is the early inflammate inflammatory stage, and we have some success at stopping it if we're found really quickly. But once the adhesions start, there's no way to stop it. So that's why we say arachniditis and then adhesive arachniditis is just a further stage. And so there are so many individual types of spinal interventions that we need, we do. And it's very common now to see people get back surgery, spinal surgery, you know, for getting disc fixed or getting plates put in to try to straighten or all that sort of thing. All of those always pose a risk to getting arachniditis. And unfortunately, we believe that the reason we're seeing so much of it used to be considered a rare disease, but our research team does not believe that anymore. The reason we're seeing so much of it is because every time you do one of those procedures, there's always like a one to two percent risk, they'll tell you. But a one to two percent risk on 400 million people, you know, suddenly becomes 40, you know, 400,000. So it adds up, sort of thing.

SPEAKER_03 15:10

Sure.

SPEAKER_04 15:10

Yeah. So I actually got my arachniditis from two traumas.

A Deer Crash And A Botched Tap

SPEAKER_04 15:16

So when I was just young mother, about I was about 32, and we had five children, and I had a small business, a newspaper, and my husband was still in school, and I was rushing home one night around 11 o'clock to let my babysitter go. And as I got home, she said to me, We don't have any milk for the baby anymore. For tomorrow, I can stay if you want to run to the store. And so our stores were available. We lived out in the country, and there's a small rural village not far. So I rushed out to get it. And because I was rushing, didn't think anything about it, didn't put my seatbelt on. And this is the 1999, late 1990s, 1999, I guess. And on my way, I managed because it's all these rural back roads, to hit a deer, a really big deer. And I got because I didn't have my seatbelt on, I got pretty banged up and pretty damaged, and the front end of the car was ruined and all that sort of thing. And initially the day, the first day, I didn't think I had any problems. And soon after, which happens with a lot of soon people, I ended up with whiplash in the in the following days. And the whiplash did not respond to any treatment. We tried everything, you know, did all the massaging, all the physiotherapy, like everything that we could think of. We brought in like new seats for the chairs, like everything we could do to adapt to this new pain that I could not get out of because it was meningitis or because it was whiplash. And so they eventually, when they were trying to do investigations to figure out like what was wrong that I was having so much pain, they decided to do a lumber puncture, also known as a spinal tap. Excuse me, I'm just gonna get a drink. And just a moment, please.

SPEAKER_03 17:00

Sure.

SPEAKER_04 17:03

And they managed to botch the spinal tap. And how I knew they botched it was while I was on the table, suddenly I got a spreading numbness on my left thigh, and I start to lose some pea. I had a bit of incontinence, and right after my left foot began to start having a bit of a drop foot. So they sent me home. Not that time, they don't think they had any clue about these sorts of things, because especially because it was considered a rare disease back then. And so I was sent home. And I'm actually at the time, I was already trained in healthcare. I was a registered cardiopulmonary technologist, so I understood all of this sort of thing and have a degree in in uh physiology. So I was myself thinking, we should we can't leave this. I need to go back in for an emergency MRI because it wasn't getting better. And so I went back and got the emergency MRI. They came out and they kind of threw up their hands and said, Well, you've bruised some spinal nerves, but they'll heal themselves. Now, bruising spinal nerves is actually not something that you should actually see other than the inflammation, and maybe if there was some still blood blood still in the CSF. And I and I went years I undiagnosed, but I will and I'll go to that in just a second. But what I want to say is that what we now know is that somehow blood, which normally doesn't get entered in a spinal in a spinal puncture like that, lumbar puncture like that, got into the CSF fluid. And it is actually a chemical irritant in this on the spinal colour tissues on those meninges. So real blood is not supposed to be in that area. And neurosurgeons, when they do their surgery and everything, they're very, very, very, very careful about not piercing far enough to tear and let the CSF fluid mix with the blood, because that can cause real problems. And it it's probably what a good 15%, I would say, of the people that I know have had happen typically through surgery, just more often than lumbar punctures. And so that original that original injury just kind of a little bit got better. The whiplash continued, and I started down the path that we all do in chronic pain, trying to find what in the heck was going on.

SPEAKER_01 19:26

Sure.

SPEAKER_04 19:27

And I can tell we in in the rare disease community that's called a diagnostic odyssey. And there are actually like papers that have been written about actually the common phases and the common, what's the word, emotions that go along during the diagnostic odyssey. And anyone that's in chronic pain and is still trying to find their cause for the chronic pain, yeah, probably is in a similar select situation. So you go and you do, you know, all the different studies, and they keep coming back, you know, saying there's nothing wrong with you, and you know there's darn well something wrong with you. Absolutely. And so that happened, it got worse and worse. And eventually I was seen. There's a smaller story there where I had two doctors drop me from the clinic because they did not, they felt that I was lying. They just couldn't, whenever they were looking for tests and stuff, they couldn't find anything. I worked closely with one of the doctors. There was a work relationship between the doctor and his uh her husband and the doctor that I worked for. So it was one of those things, I think. But it turned out that she actually called me a liar and and dumped me from the practice. And it had been done also to me in between when I was, you know, looking for acute care, what people just would not believe. And this is a typical story for arachniditis. And so eventually we I found a rheumatologist who was willing to take me on because there was some indication I have psoriatic arthritis, uh, that I have psoriatic arthritis.

SPEAKER_03 21:05

Okay.

SPEAKER_04 21:06

So it's in my family. I had psoriasis. This was also bothering my joints, especially my feet. My feet had become really, really painful to walk on, felt like a pole still does, was like being pushed up through the bottom of my foot with every step. It was really, really uncomfortable, burning all the time. And so we went through the whole thing and they decided you have psoriatic arthritis, and they called it progressive fibromyalgia. And at the time, because I I've always been, I mean, now I in the end, I might I I worked for many years after being a cardiopulmon cardiopulmonary technologist as a clinical researcher, medical researcher. And so, you know, I know to go and look at all those sort of things, probably like now everybody's on the web, we can all find them. And I was like, there's no such thing as progressive fibromyalgia. Like there is that the pain can get worse, but not that you start to see. Typically, you don't see neurological changes, you know, where you you know can't functionally do something anymore just because that you know you can't your your muscles won't won't listen, or you know, you get really bad shakes and trembles. And typically, if you have fibromyalgia, I would say, and you're seeing a progressive neurology impairment, then you need to go looking further. And if you've ever had an obstetrical epidural as a woman to have a baby, even 30 years back, if you've ever had these ESIs, epidural steroid injections, which are the pain needles in your back, uh, if you have spinal surgeries, a history of uh disc compressions, herniations, you really do want to come and suggest looking into arachniditis because we're finding that a big subset of people that were originally diagnosed with fibromyalgia actually turned out when they have the right testing done to have arachniditis. So, what happened was I was treated that way for a lot of years and I continued to decline. First, I needed a cane, I had to take time off in between, but I was able to change jobs. Like first, I sold the newspaper that we owned because I couldn't sit at the at the thing and do that kind of uh the the deadline night before you have to have it off to the printer. You can work 48 hours straight in front of a computer, and I couldn't pull off six. So, yeah, so we had to sell it off. And I happened to have some serendipity at that point, and a doctor for the cardiopomen technologist position that I had done, I had sent in a resume many years before. It there wasn't many of us in Canada that were registered, and so they would hold on to resumes because we were kind of hard to find. And he called and and asked if I wanted this job, which was just perfect because it required, and I was okay to do this at the time, standing, just standing at a computer with some movements around to help like adjust patients and so on and do tests, but it was lighter work, it didn't, it I could move around, which helped a lot because staying in one place was very painful, all that sort of thing. So I kind of moved into that, and then when things got too bad that way, I was lucky to bump into someone in we we moved to a different city from my husband's job, and I bumped into someone who recognized what my field was, and then I got a call from a professor watching if I wanted to come and do research for him. So I really, really worked out so because that that became the research portion of it, was very much more independent, and then I could have some time flexibility. No one was looking over my head, and as long as I made sure that my cases were done and all that, then I was fine. So that helped a lot too. So I continued on until I eventually had to make it into a wheelchair. And the reason I ended up initially in the wheelchair is this was getting really bad to the point that I couldn't sit at all anymore. If I were sitting, I'd have to sit on one butt cheek and put my like two legs up in a wheelchair kind of thing. It's like the only place that I could sit with any comfort. And one day, finally, I woke up and I was paralyzed from the from the waist down and in extraordinary pain. And so we went by, I was out actually not at my own home. I was out at my in-laws, which was at a different hospital. And so all the naysayer doctors that had always just been part of that whole hospital before weren't around just to just ham and haw and look make my medical records look bad. So when I went in through Emerge, they're like, no, this is something, and we're gonna finally do an MRI. And they did an MRI with contrast, which is what you need. And then about it took a long time for the like a whole day while I was waiting for the results, which I thought was unusual. And then they came back to me and said, Well, I'm gonna tell you you have adhesive arachniditis, it's hard to diagnose. There's not really any specialist, but I've sent this is what they told me. I had the radiologist, I've we've sent the report and the imaging to three hospital, like university, sorry, one neurosurgeon, one orthopedic surgeon, one neurologist, one neurosurgeon, and and a whole group of them. And this is what they've decided that you have. And it was it's so rare that it actually took a while. Now that I've learned what I've learned, and and most any of us can pick out adhesive arachniditis often MRI in two seconds, which is actually kind of interesting because part of the reason it doesn't get diagnosed very often is because the radiologists themselves don't do well at catching it. A recent study showed that I think it was like in 2019, showed they gave about 86, I think it was, different radiology cases to MRI scans and cases to five radiologists and asked them to like diagnose everything that they saw on it. And when it was done, three out of the five missed arachniditis every time. And only the two most senior radiologists caught it. So when you've got a 60% chance that even when you're doing the test that the radiologist is going to miss it, you can see why there's a we're finding this huge unmet need of people that when they finally go and bring the information to their doctors and ask for it to be ruled out, then they're finding it. In fact, they do have it. So what happened was when I ended up finally being unable. So after I was in the hospital, I I had ended up having the arachniditis and I had managed to extrude three discs all at once in the lumbar area. And extrude is like pancakes, herniated is like the bulb bulge. Pancake is like there's no all the internal structure gets sort of exploded onto the nerves that are there.

SPEAKER_03 27:50

Like a jelly donut.

SPEAKER_04 27:52

Yeah, that's exactly right. And so all the jelly gets on all the spinal nerves and on the spinal cord and those structures, and it's not supposed to be there, and it can actually create a worsening of the arachniditis for people that are prone to it. So at that point, shortly after that point, I was struggling to walk, and they've decided, and and I couldn't sit anywhere. And so they decided that we would they would put me in a tilt and recline wheelchair with a special bracing system, which actually is the only place now that I can still sit unsupported. Like I need somebody to be like holding me up. And my my wheelchair brace comes around and wraps almost to the front of like from my back underneath my arms and almost to the front of me to pull all of that pressure up off the bottom because there's so many adhesions inside the spinal canal that when you sit on them, that creates all this extra pain because the spinal nerves are all being squished and they're being squished in these strange ways because they're all glued together. And a lot of times we say to people, like, imagine, you know how you get spaghetti, you make spaghetti when you first make it, it's great. You sit it in the pot for a while and it gets all that glummy, sort of mucky stuff, and it all kind of sticks together. That's what our nerve roots, nerve root like roots look like after you get arachniditis. Before it would look like great, you know, typical great spaghetti, but afterwards it just gets that whole glummy thing. And so, as you can imagine, those are all nerve signals that are trying to go out, and so your body cannot interpret it. You're it just your brain is saying one thing, your the sensors are saying another thing, and everything just kind of goes hey whack.

SPEAKER_03 29:39

Wow.

SPEAKER_04 29:39

So after a bit, when I was in the wheelchair, I got to a point where I couldn't do research anymore, like not the kind of work research in a hospital because of the risks associated that I couldn't do CPR on someone if I needed to, and that kind of stuff. So I was I had to leave.

Misdiagnosis Disability And Financial Freefall

SPEAKER_04 29:56

And then there was a whole awful period, which a lot of us go through, where because I was diagnosed with such a strange disease that no one understood that my disability insurance, I had private disability insurance, would for three years we had to fight them. And we it was such a horrible time for my kids. I just can't even tell you. We would go with our heat being turned off, we were going to food banks. Like my husband was still working, but we had five kids, and I had a fairly good, like I was actually the bigger income. So for a long period, we we went right to the last minute before losing our house. It was just the typical story, I think, that you hear from pretty much everyone that lives in chronic pain. You know, your life just just devolves around you. It doesn't matter how much you try or how hard you want it, you can't you can't get out of the way. You know what I mean? And and I think so I did go through a period, like most people do when I was first at home, that I was really like, you know, I'm in bed at that point, 24-7 all the time. We lived out in a rural area, so I didn't get very many friends. I did have a caregiver come in once a day. And boy, within like a month, I was so sick of TV and everything, and you know what you do. So I was looking for things to do. So for a while, I was trying to match up missing people with deceased people in other areas. Like there's different, there's different tasks out there in the internet community that you can help in. And so I got started on that, but always thinking that there's like no, like the only research on arachniditis typically has to do from a neurosurgical perspective. So it's of no use to patients. There's no, there was no advice on treatment, there's no advice on on any of it. And even now, we don't, we've just finished the first biggest study done ever in arachniditis with this patient reported. But that's just the probably it's the first ever patient-reported study. Everything else is based on, you know, physicians in the hospitals seeing these types of patients that typically are inpatients because they're really catastrophic. And so nothing comes out that can help sort of everyday people.

Turning Isolation Into A Mission

SPEAKER_04 32:18

And I was watching television one night, and there was a woman that was a comedian that came on, and she mentioned that she was going to do all of this fundraising through her comedy for rare disease research. And like it stopped me right there because I knew research, but I didn't know anything that there was anything that was rare disease research, like that there was any kind of structure or ways to do that. And so I got a hold of her, because you know you can track pretty much down anybody if you want nowadays. So I got a hold of her who suggested the doctor in I'm in Ontario, Canada. So in SHIO, which is one of the highest research hospitals in eastern Ontario. And they, there's a group of them that specialize in rare disease. And so I called the doctor that she had suggested that was part of all of the research studies, and asked him, you know, this is what we have. I have a research background, I'd like to see how this is being done. And can you put me in charge in contact? And sure enough, you know, you just never know these things, but there was there's tons. Well, I'd say there's three major rare disease organizations in the US that teach rare disease groups how to create a nonprofit, how to create a support group, how to create educational materials, and then eventually, if you want, how to create a research system. So I started taking the courses. There were the ones that I use mostly were from Europe, call it their card, their system that they offered is called EuroDeece, E-U-R-O-R-D-I-S. And it's actually a European parliamentary program. They put a ton of money into rare disease and said to this group, now I want you to like train, because there's so there's over 7,000 rare different kinds of rare diseases that have been identified. Less than I think they said 5% have any kind of advocacy support or research going on. And so a lot of people that have been disabled by a rare disease early on, or that have a lot of support from family and that sort of thing, uh begin to look at how they can begin to, you know, fundraise or do something. And so there's a number of courses that you can take. So I took about three years taking a number of free courses, yeah, that showed how you know I could how you could create this vision of going from no research to beginning to produce research with the community. And you first need, of course, with rare disease to be able to find that community. And up until the advent of the internet, and even more especially this ability to do online meetings and that sort of thing, it was really hard to find people. But now that we've got all the social media and all that sort of thing, as soon as we began taking advantage of that and really so we started our social media channels up, we started with Facebook groups, and then we've, you know, we've gone into LinkedIn groups and Discord groups, and what else do we have? We've got Facebook, we've got LinkedIn, we've got Discord, we've got Instagram, we've got TikTok. Yeah, TikTok. And so we sort of started going away on all those channels and bringing people into essentially just a basic membership where we started to share what information was out there. And there is actually a doctor, one doctor, elderly doctor, that he's he's actually in retirement now, but who had actually had a heart because he had been in pain control, and he had a real heart for people with arachniditis. And so he actually was the only one of the very few that had actually tried to do anything. And he had started at least coming up with some basic information about how you could treat inflammation and how you could treat pain. And if you couldn't get opioids, how other ways you could treat pain, everything from like all the types of things that you just kind of want to grab onto to have a place to start. So we started sharing his materials and eventually grew our group out. And now we're we've been uh registered now, so eight years registered, 11 years I've been on this. We just last the year before uh put out our first survey, and 1250 participants came in. Now, previous to that, only 89 were ever studied at one time, so it was a complete turnaround. And we got because of this, it's rare disease research. It's that it's the uh collaborative research network paradigm that you can follow that allows this to happen if you are able to. And so as soon as you get all your people together, then the next step is to create a registry, which is actually a research registry, which we've just completed. And what that does is people that are interested in doing clinical studies for you and participating uh get to go on. And then as we release our studies, which are completely the same level in credibility as anything done at an academic institution. So because I had done clinical research at the institution, I knew what you needed to have with regards to a certain there's a number of like certificates and IRB ethics boards and a number of things that you need to have in order to be considered a real clinical or a real research study that can be published in in medical journals. If you don't have a number of those put things in place, you can't get published. And so that had been prior to me what was going on. Well, I wouldn't say just to me, but to this idea, because people like this doctor were able to do it out in newsletters and that sort of thing, but we weren't getting to the doctors, the doctors. And so our idea is until we get them where they will read the credible stuff that comes out of a medical journal, they're not going to listen to us, which I think people kind of understand. And so we spent the last three years really putting into place everything. We co-developed, we were early, I wonder how we called early adopters, I think they call us, of a number of our peer groups came together under it's called a peer alliance. So a number of rare disease groups under a rare disease alliance umbrella uh came together. And after a false start with a with a commercial registry that it that went under, we all came back, assessed everything that we would need, and actually had a software designer who had previously done all of that start from scratch with us to make sure that we would get everything because rare disease research requires a little bit different things. So that digital platform, it's actually called Digital Cabinet, was just created, and that's the research infrastructure that meets all the HIPAA uh uh compliance DDPRP, all the FDA requirements, everything that you would need. There's an IRB board that pre-approves everything before you go out, and so you are able to submit abstracts to conferences, and also we are in the position right now of just finalizing our first study as a manuscript. And before it was done, we now have people uh from Israel, Australia, New Zealand, Portugal, Canada, the US. I can't even think of all the places that have all come in to each with their own specialty in the different area, uh like CSF fluid dynamic specialists and that sort of thing, chronics pain specialists. They've all come into the manuscript and become part of this big study. And it's going to be submitted. We're we're just in the final peer review right now. So we're hoping to get that published in an open source, highly credible uh medical journal, which will then at least people can take to their doctors, and it has like the whole everything that we know so far about arachniditis, so that they can do it and so on. And then we're just about ready to start our next two two surveys. We're just in the midst of creating them right now. So when I when things were really, I would say the worst for me, I kind of feel like I was saved by my purpose. Because the day that I saw that lady come on and say it was possible, it just seemed to me like, well, there's my project then. Because I just, you know, we struggle. I know everyone does that. I think, first of all, to feel like you're doing something, doing something effective and and you know, whatever, and you know, just not to be feeling all the pain all the time. Like I find distraction for myself.

SPEAKER_01 41:25

Yeah, it gave you purpose and hope.

SPEAKER_04 41:28

Yeah, it did. And it also, and knowing that others were coming to me, and I'd been on this track probably 10 or 15 years, a lot longer than a lot of the other ones. And I knew what how I had managed my way, and we started all that period. That that really gave a lot of impetus too, because you know that it's there's a lot of suffering with this, and if you can help skip someone the first five steps, you know, you it does, it makes it and you get a real community family out of it in the end, yeah. So, yeah, so that's how I've turned my pain into purpose or strength. Yeah, that's for sure.

SPEAKER_01 42:04

Yeah, wow, that's that's a lot, and you have been busy. You have been busy now. What does it look like on an MRI? Is it like white lumps or growth over the same light?

SPEAKER_04 42:21

The thing about MRI, of course, is that each type of cut, so this way, sagittal, or this way, or or this way, like across and everything, all of those cuts will show different things. But typically, what you would see in a contrast MRI of the lumbar, okay, um, is actually you can see where there's you see where the vertebrates are around it of the spinal cord, and then you see it's the cutter coinus, so the spinal cord itself, the big thick part of the spinal cord, is up further from where it this is affected. This is affected at the end of the spinal cord. The end of the spinal cord kind of comes into all of these spaghetti strands because it's it's branching out from the main source and branching out into all these different segments. So some of them is going to go to your you know, arms, some of them, you know, someone's gonna do your legs, you know, all that sort of thing. So that's the area that it is in. And in the the cut that goes across, like straight across, if you cut your body in half, there's in the center, you can see this should be just these black, freely floating spinal nerves. And what you'll see is either no spinal nerves because they've glued themselves to the side of the canal rather than being there, or they've clumped up into like one big ball or a bunch of big balls. And everyone's different because it depends. And then there's different things, it's different for what they'd see for like a thoracic arachniditis and brain and eye arachniditis, but essentially they would see this thickening. And inflammation in the roots that are transferring from the brain or to the optic nerve or of or from the thoracic part from the spinal cord into the out like the thoracic outlet and all that. That's the kind of stuff that they would see. On our website, if anyone wants to go, there are images. I have, and if you're interested, I thought I would share it with you. I have a small reel that actually we share for awareness that tells you what to what to look for. So we have some some stuff there so that people can see, you know, there's very specific one thing that came out. So when we did the first survey, it was done on this is sort of a side note, it's kind of cool. So there was a free platform that came out called Stuff That Works, and it's still available. And the idea it's a commercial data platform, health platform. And I think they make their money by selling the data to different A's. And what they do is they put all the different diseases, you know, heart disease, uh, Parkinson's, you know, breast cancer, all of them together and made a bunch of communities, and people would go in and they could, if they wanted, fill out surveys or just make support groups or whatever. And when it first came out, I was like really early adopter of this one too. I went to them and said, Well, can we open one for this rare disease, this adhesive arachniditis? And so they said yes, we could. And it was opened at that time so that all the data would still be available and owned by our nonprofit organization. They could use it, but it would be owned by ourselves, which is really important because we want our patients to own their data and not not having a pharmaceutical company own it or some kind of a university or any. We want our patient group, the nonprofit patient group, which is patients run by patients, all volunteer run. Uh, we want to own that data so that we can right. So that was this this platform was called Stuff That Works, and it was originally created by one of the developers of the Waze, W-A-Z-E app that was like the original Google Maps, and it was all over Europe, wasn't so much in in in North America, but way all over Europe. And she's from Israel, and she so she, with her part of her earnings, started this up, and there's an AI combination in this along with your data. So they have a proprietary AI that will go through and help look for things. And so when we started out, uh, we knew we were going to own everything, and that was gonna be great. But as they began to change their business model, it began suddenly that they were gonna have to own it all. So we had to stop it, and that's when we went out and looked for this other platform that I was talking about

Building A Registry And Owning Patient Data

SPEAKER_04 46:43

earlier. We first started another platform called Luna, but they went under, and so then we just decided to heck with it. We'll create our own for the rare disease community, and then we, you know, we have some control over it. As all of we have, I think maybe 30 or 40 alliance groups in the alliance. So we yeah, so we it's not us that owns it, it's the creator that owns it, but we are we get special data authorities and things you wouldn't get in other places for it. Yeah, so anyway, when we did our first study on the stuff that works platform, we got a really interesting new insight that AI had come up with that we wouldn't have seen in in probably years of studying. And it what they did is they, as part of their like sort of typical analysis for each group, they put all the different disease groups together and then looked at what things were unusual in each group. Like if there was something that was like highly correlated in one group but nothing else.

SPEAKER_02 47:44

Okay.

SPEAKER_04 47:44

And the strange thing was that the term of a complaint that we're having difficulty sitting. Pain was sitting, unable to sit, pain, you know, can only sit for a few minutes. That came out as being correlated most often with Tarlo cyst, which is an extension of adhesive arachniditis, and adhesive arachniditis was second. So suddenly we now have a new possibility for a clinical marker for diagnosis, is that it looks like, and we're gonna in our future studies, we're gonna be teasing this out more, but it looks like if your one of your primary symptoms is that you cannot tolerate sitting, then you really need to look at having arachniditis or adhesive arachniditis. And that came out from their AI. And because this was uh such an unusual study, uh, we needed to, when we got into doing our poster abstracts and our methodology and so on, we needed to have their input because we had to understand like exactly how things were being calculated behind the scenes. Yeah, and so we started working with the stuff that works, executive and so on. And in the end, this woman, Yale, and I I always get the last name wrong, and I won't even bother right now. Uh Elish, Yale Elish, I believe is her name. She's actually been out talking about our first our first study on podcasts and everything as an indication of their success. But it's actually because it's so unusual in the first one out, we're getting a lot of awareness from it. And because she's a well-known individual, in especially she's from Israel in the Israeli community for AI and health science and all that sort of stuff, we've had an influx of with great helpers suddenly because of just just serendipitous things that have come along. So, yeah, I kind of think that we're I kind of think that we're lucky in that way that that this was kind of meant to be.

SPEAKER_01 49:41

Yeah, yeah, absolutely. Absolutely. Is does it get worse over the years or does it stop at one certain point and then just makes you have all this problem?

What Can Slow Progression

SPEAKER_04 49:56

Well, typically it's progressive. Okay. Um, okay, we it we only have one sort of treatment that we can do, and it probably would have fixed me if we had done it the day that we found the issues that I found.

SPEAKER_02 50:11

Okay.

SPEAKER_04 50:12

If I had been treated with high dose steroids, intravenous steroids, for uh one to two weeks in hospital and with the right rehabilitation, I probably would have been able to stop the process. We've seen it happen, but it you must get it diagnosed right at the trauma. Like you can't be more than three or four months out from it beginning. And then once it happens, we we slow the process of how fast it progresses by reducing inflammation, neural inflammation, using items that cross the blood brain barrier and get into where it's going to actually work to be an anti-inflammatory. And so we use anti-inflammatories, we use light exercise because we're talking like water walking, because we need to keep the CSF fluid moving, it bogs down. So what happens is because you've got all these like adhesions, which are all these like globs on the bottom, the water is just like a river trying to pour through it. It's like a bunch of boulders. And because of that, sometimes it kind of gets like swampy and it actually gets too much of that water CSF fluid in the system. And when that happens, the body eventually has to release the pressure and it will actually create a spontaneous uh leak, which is called a cerebral spinal fluid leak. And those ones are really hard to repair, especially spontaneous ones. So we work to try to keep those worst-case scenarios from happening. That's all we can do. And so we've said, you know, we've got suggestions uh specifically about diet. We have a number of supplements that we know work specifically in either an anti-inflammatory way or anti-glial. There's been some recent association, not straight one-on-one research, but association with Epson Barr virus, also known as EBV or mononucleosis, you know, if you get the full-blown thing, which is interesting because I had it first when I was three years old, and then again when I was 12. So I definitely could have been an initiator. They've been able to show that in lupus and in MS, there's a correlation. Again, correlation is not cause, a correlation.

SPEAKER_01 52:28

There's a connection somewhere, yeah, somewhere.

SPEAKER_04 52:31

And but you but you don't know if it's actually a real thing or not until you tease it out. But there is a correlation that they found with EBV in MS. And MS people get that get worse when the EBV is active. And so there's some suggestion, especially by this doctor that I told you about that's been in the series for a long time. He's really on to that right now. But this we are not in a position yet to test that theory because it's going to require a lot of resources. And that's the only thing stopping us now. We have the research team, we have the epidemiologists, we have the participants, we have the ability to create studies. It's just the money. And that is always, you know, there's not a lot of benefit for big pharma. It's not like we can go to big pharma and say, hey, let's create something, because they don't see a market for it. And in rare disease, that's the way it is.

SPEAKER_03 53:23

Right.

SPEAKER_04 53:24

So there's a there's something. In fact, I'm taking a new course right now at Capst University regarding this as part of this research pathway for rare diseases. Once you get past the registry and start into clinical trials, you work towards getting a drug repurposing, which means you work towards finding a target somewhere in the system that you can say, well, we could target this with this drug. And you go through the types of drugs that can target. And sometimes you can drug repurpose and then get it approved as a treatment within that. So that's our long-term goal is to try to find that treatment. But because you know, it's all done by just patients, helping patients, fundraising with patients. You know, there's not a lot of there's not a lot of money out there to help, unfortunately.

SPEAKER_01 54:10

No, but the power and community, my goodness.

SPEAKER_04 54:14

It is. We've had over 30 volunteers during our eight years with us. There's my the original board is largely still still with us. I've got and and we've got some really like full out dedicated, it doesn't matter how sick they are, they're still working. You know, we're at our board meetings looking like this, laying in our beds, flat out. But we just take in the idea, and this is how I kind of say no one else is doing this. No one. So it doesn't matter how fast we get it done, we just do it as fast as we can do it. So it just happens that, like last year, one of our patient uh engagement managers who does all the website and all that, she was off for a full year because of of the issues surrounding this. And so a lot of things that we wanted to get going just had to wait. Like we brought in new people, but she really had that knowledge, and it constantly goes like this. Like, you know, we just get one person up and then all go down, and then another person will go up, and but we just kind of all keep moving forward until we we can't anymore, and then we all pick up again and keep going.

SPEAKER_01 55:22

Yeah, that is wonderful that everybody supports like that.

SPEAKER_04 55:27

I think that um I'm I mean, I haven't been in other support communities for other diseases, but I really feel like we call ourselves the Araq ARACH family. We're all Iraq A-R-A-C-H warriors.

SPEAKER_01 55:42

That's what I saw on your website.

SPEAKER_04 55:44

Yeah, yeah. And and I think there is a real sense of commodity. Everyone tries to help everyone. The ones that have had this longer tend to spend like a lot of us spend a lot of time in these support groups trying to help the new people. I mean, I think the hardest thing is the chronic pain because it's like everybody else. This is high-intensity chronic pain. LDN is working a little bit for it now, but people typically needed the opioids, which of course we all struggle with the idea, especially in the US, with the whole, you know, worse, the what are they calling, tapering and removal and all that. It's the kind of pain, intractable pain that really only something that strong works with. And so a lot of people uh find the grief and the anger and the frustration and all those stages that you go through, especially feeling, yeah, feeling hopeless. And you know, your life you've gone, and especially because this typically hits between 30 and 40.

SPEAKER_02 56:51

Yeah.

SPEAKER_04 56:52

And so it's hitting that you're kind of you just made it into your prime, you know, you've got your house set, you've got your career just off the way, and maybe the kids have gone, you know, come and it's just right then, and everything, you know. So many, many people were, you know, travelers. We had what we have one lady who used to be a skydiver and for the movies, and actually was getting her certification for night diving for a movie. Um, and actually the parachute didn't work right, and she slammed into the concrete, and all of the damage that done create created this really bad arachniditis for her. So she lost this, she even knew Prince. Like she was in with all of the big wigs and all the celebrities as part of her life, and now you know, back to isolation and everything. So there's so many of us that kind of felt we had our lives where we kind of wanted them or were feeling good about. And then it's how do you, you know, we really struggle. I find a lot of people really struggle. I'm sure you do with most of the chronic pain community. Is this not a story that you hear often?

SPEAKER_01 57:58

Chronic pain is something that seems to affect everybody.

SPEAKER_04 58:03

I got some really amazing occupational therapists at the beginning that back before there was like all these pain apps and everything where you could track things, actually had me write out like every hour for two weeks what my pain was, what I was doing. Okay. She put it into spreadsheets and she figured it all out, and she came up with my top five triggers. And once I remove those triggers, one of the biggest triggers was driving a car. Because with sitting, first of all, you're I'm sitting, number one, and then my legs are extended, and I'm trying to move small movements with my feet, which again is one of the worst things that I can do. It's also not really very safe because you can get like these big spasms and things. Um, but once I started to remove that, the triggers, and this is what I try to tell people if you can find your triggers, use them, then you have to know how to pace, like you're saying. So you're like me, if you know that something's gonna happen, it's a big deal, I suspect. You lay low for a day or two before, and then get up and do your thing, and then lay low for a day or two after. Yeah, and I think it's I think that learning how to do that takes a lot of time. And I think it's one of the things that we're always, and I think it's probably across the board the same with chronic pain that we're trying to help people with learning how to do that.

SPEAKER_01 59:24

Absolutely. Now, do you have this burning nerve pain every day? Yes, it does anything help.

SPEAKER_04 59:32

Well, as long as I'm not as long as I'm not activating, so I can still get it. I can wake up in the morning and my legs from my hips to my feet will be bright red and burning, just burning, burning. But I'm like there it feels also like I'm um, I always say I'm a marionette, one of those puppets with strings, and I feel like my strings are too tight. So when I make the extension movements of anything, even if I like I'm always kind of like bunched up, if I move my legs long or out, then I feel that nerve come pull all the way down. And that if I if that part, if I've like, I don't know, gone out and be in the wheelchair for a few hours, and that part starts, that will turn into the really fiery, the really fiery, like I honestly, we have pictures showing lava. When we ask people what it looks like, everybody says it's lava, it's lava running through, it's lava running through. Then once I got to the best I could be, which expectations is a big thing to have to get around, right? And once I got there, then my family and I really began looking at how we could use accessibility devices to remove the strain and the fatigue so that I could do things. So I really encourage people to always look for ways to remain as involved as they can. And I think usually if you're pretty creative, you can find something. Like if you've got some hobby, you know, there's usually an adaptable version that you can come up with or something. That's how I've handled it.

SPEAKER_01 1:01:07

Yeah, me too. You know, it's just trying to keep your mind busy. And when you're not thinking about yourself and your pain, it's distracted by helping someone else or doing something, it just gives you that break, a little bit of a break.

SPEAKER_04 1:01:23

It's interesting because we have a new peer support program that's called Um Hack Your Brain to Hack Your Pain. And it's put on by one of the people with arachniditis who went through an innovative chronic pain management program that was just trialing in New Zealand. Um, and what they did, oh man, it sounds wonderful. What they did is they actually gave him one-on-one multidisciplinary care for a year. So he had a pain psychologist, he had a personal fitness trainer, he had an occupational therapist, he had a pain management doctor who was not afraid to give him in the Andes and all the educational understanding to know which, like, for example, he where he is, he can use marijuana. So he actually learned, they taught him about which receptors are where in the brain, which compounds will affect which which receptor, like all that kind of information. And eventually he's he went from being like where I am to being able to cope with the pain. And he said the pain's still there, but just by distraction and techniques, which, for example, one's called Sims and DIMMS. I don't know if people have heard of that before. So there's I'll put a book that we recommend, or that these that he recommends that was the original behavioral tools that were being taught by this, I guess is a physiatrist, Lauramar Epsley, I think is his name, but I'll send it up. And they're actually neuroscience-based tricks to get your brain to be overwhelmed with things so that the pain stimulus has to move back. So, yeah, so for example, this is what the story he tells. So, in order for him to understand that he could actually not have to perceive the pain if he didn't want to, okay, he went out with this pain psychologist. And they went out to a noisy sort of festival area where it was out in the summertime where people were having like treats and like it was by the water, like everything was fun, and and it was, you know, like a really fun sort of place that he was absorbed in. And so she had him close his eyes and she had him describe everything that she could that he heard, like in minute detail, and then everything that he could smell in minute detail. And then as she's talking, she put a piece of chocolate cake in his mouth, and he said, At that instant, I didn't feel any pain. And that's this Sims versus Dims idea. It's a matter of overloading your sensory over, overloading the pain sensors by by positive sensors from your body, positive sensations, very much like uh so that your pain doesn't go away, but it just falls, you know, when you watch a TV program, you might not be as it's still there, but it kind of dims away. It's you know, you're distracted, yeah, yeah. And that's that's what uh so there's a bunch of tips anyway. People are all welcome

Pacing Distraction Water And Grounding

SPEAKER_04 1:04:13

to come. It's on our website, it's every Friday, it's free. We've got some other peer support programs that we're that we've got going to. People with anyone with chronic pain is welcome to come. They don't have to have arachniditis. Okay, yeah, and it's and it's on our website. I'll give you all of that.

SPEAKER_03 1:04:26

Yeah, yeah.

SPEAKER_04 1:04:28

So and I find it like you said, from for me, I'm the same way. When I'm working, I don't I'm so concentrating that nothing is around me. I don't feel my body, I don't feel I don't notice the stuff around me, like I'm just in my own world. Yes, you know, and do you find that too?

SPEAKER_01 1:04:46

That when you're really concentrating, absolutely, and also I tell people like get in the swimming pool. It gives you that break that your body needs and your mind. And if I float like on a noodle, I have no pain. Like all the discs are off of each other, like I just float, you know. So I tell people just take 10 minutes and float on a noodle, and it'll it'll give you 10 minutes at least to help.

SPEAKER_04 1:05:17

In fact, water exercises are one of ours. We actually recommend water walking, which is to get into deep water so it's at your chest, so that you're getting a full buoyancy, and then just essentially what you do these like cross steps across one way and then cross steps the other way, and it it tends to give the same kind of response. And for us, it helps to move the CSF fluid that's all boggy in our in our bottom area. The only thing is, I have if you have time, I've got a kind of funny story. We did decide my husband and I, we we got a I don't know, I think that's a YMCA damage. Yeah, we have a song too, right? So we have the YMCA up here, and we had gone there for fitness like our whole lives until I got ill and then we had moved away, so it wasn't right. So when we came back, we decided we were going to go to the one that we knew. And it had just two special pools in it. One has a floor that goes down and up. So they also had patient lips to take you out of the wheelchair and put you over into the pool. So we were all excited about it. We went and we did our tour and we talked to everyone and made sure that we thought that everybody knew what was going on and they would be able to help us and all the rest. So then, of course, we get there, and everything that's supposed to be accessible, like really isn't. Like they've got a change table, but there's no way to get me out of my wheelchair onto the change table. You know, when I wanted to try to change, you know, my brief and stuff. I couldn't possibly be moved into my, into the chair, into the you know, the toilet or anything. So anyway, there's a lot of it. But anyway, we got all over it. I was still excited. I'm gonna go swimming. So we get up to the the the pool that I'm gonna go into and we get me all hooked up in a sling. I think you guys have probably seen them before. They're they come from the ceiling, and you have this like sling underneath you, and it goes underneath your legs and underneath your arms, and it just like you're in a bag, and you get picked up. And the slings that go into there's slings that go into the water. That's how I pick my own shower, is by that. And so we got up and we got me across the pool, and then we couldn't get it to let me down. So I was literally hanging over the pool for at least 15 minutes, and then we're like, they someone was like, Okay, yeah, I can get it down. So they put me down because I just needed to get like let me out of this. The rest of my body was just too much. I just wanted to get in the water even just to get the release. So we did that, and we were able to get me up again, but then we couldn't bring me back in. So they eventually people came in, and it was a whole pool was there trying to help me and pushing me across. These lifeguards were pushing me across. They got me over to the wheelchair and they tried to hang put me down into the wheelchair, and it ended up about four feet above the wheelchair hanging. Oh no, and we couldn't get me out, and nobody, it was a Sunday, which we thought would work well because there wasn't very many people there, but that kind of backfired because all the staff, there was no management on that knew how to fix this thing, and so 45 minutes of hanging later, my husband said, That's it, I'm calling the fire department. We're cutting you out of this, like you go doing this. So, just as about we were about to call, like literally, he was going to get a cell phone, and one of the someone had been called in from home, and they knew that there was some way to jury rig this thing because it occasionally did this, and eventually I was back in my chair. Yeah, but I have to say I haven't been back swimming since because it's not that I'm worried about it, it's just so much. It's just that that's the only pool that I knew that had the right lift, even though we've got a lot of different hands, we've got lots of new ones, but they just keep putting in the slider chairs. So if you can't self-transfer onto a chair, which I can't, then well, I can sometimes I I can, but it depends on the day. And if I go on swimming, I could come back out with spasms and not be able to transfer myself again. I have a big girl, like I'm a pretty big girl, and I don't want to be embarrassed by having like six guys trying to lift me up.

SPEAKER_03 1:09:08

Of course, yeah.

SPEAKER_04 1:09:09

Yeah, so I haven't been back. I just go, like I said, at the trailer now. We have floaties, and I've got a we adopted a wheelchair, an old wheelchair that we found at some place that had big wheels, and we changed the thing, put big wheels on it, and now I get pushed into the lake, and then I can kind of float around my chair a bit.

SPEAKER_01 1:09:27

Yeah, that is so nice.

SPEAKER_04 1:09:29

Yeah, it is, and I I just think you know, if you with chronic pain, if you can find a way not to give up hope. If you because once you lose the motivation and the spark, it takes so much more. And I've been there to get back up and get yourself motivated to try again. So I think if you ever get to even a day when you feel like, oh, I could do something today, then that's the day to figure out something. Like, you know, anything. Go sit on your balcony if you haven't been on your balcony. Right. Right, yeah, just taking advantage of stuff.

SPEAKER_01 1:10:04

And one of the things, because you said that you go up to the lake and everything. One of the helping things is grounding. Have you ever heard of that? Ground, where you you kind of connect with nature, but you take you have your bare feet and you you know lay on the grass with your feet and the ground and everything, and you just start thinking like how the earth is helping you.

SPEAKER_04 1:10:30

I know it sounds kind of kooky for no, I believe the mind and consciousness has a lot of a lot of power in it. So I'm with you there.

SPEAKER_01 1:10:38

I don't you know, some people find stuff kooky. I listen to all of it and I bring all of it in, and then some things I'm like, it's not for me, but a year later it's for me. Yeah, I agree. But the grounding is connecting with nature and just getting your mind off of what's going on with you. You listen to the birds, you feel your feet in the grass, and a lot of people said that it really helps for a little bit of time.

SPEAKER_04 1:11:07

You know, so we work with one of our researchers. He is a pain at a retired pain physician, also. Um, but he has a real interest and has actually created an electrical gate theory of pain. Right now, there's the the chemical gate theory of pain with the different phases and open. I don't really remember that, but he's created an actual one because he has recognized with and other people have recognized that the CSF fluid actually is current, it carries current in it. And when you have these nerves that aren't going anywhere, we we believe, and uh we just haven't had it tested, but we believe that the extra current that you know is flowing down, it's a real current, it's a real electrical current, and it gets sort of shorted out down in our bottom area because everything's touching everything and there's not any straight line for it to go, and so it jumps everywhere. And so from the very beginning, Dr. Tenet has always said you should try to release that energy. And he suggests things like petting fur. Do you know how stalic electricity works? Like he's he's trying to discharge what the external always suggested that. And then this new doctor that I said has this electrical gate here, he's gonna do a presentation soon for us. So if anyone wants to come, I'll give you the event page you can keep an eye on. And he's actually even presenting at the scientist at one of the big scientific conferences in neurology, his theory and his of essentially how there is this electric current that can get messed up, and that grounding is actually a thing, it's a real thing, it's not just in our heads, it's a real physical property. So it may be one of these things where we know it works, but we didn't know how, and now we're kind of catching up with the how.

SPEAKER_02 1:12:54

Yeah.

SPEAKER_04 1:12:55

Yeah. So I I think it's a great idea to try to ground. I didn't know to ground with my feet like that on the soil, but I've certainly done the other stuff that he suggested, like you know, the cat and that sort of thing. There's a couple other things that he's oh, so he suggested Epsom bass because there's magnesium, and apparently you can get rid of some energy that way too.

SPEAKER_01 1:13:17

And inflammation, it helps with inflammation.

SPEAKER_04 1:13:20

And then, of course, everyone has different meds up here in Canada. It's all marijuana is regulated now and available. Literally, I can order it and have it delivered to me. But the thing is, it's all like tested and regulated, and you know what strains are which, and so you can actually begin to pick and choose which ones that work for you. And I've actually reduced a lot of the opioid, extra opioid breakthrough opioids that I used to use by a particular strain of marijuana, and I just find that it has less side effects. So I would suggest we're doing actually a deep dive into marijuana, its properties, its receptors, its strains, its formats. I'm going to be doing a rec a video for it. July is our uh arachniditis awareness month every year.

SPEAKER_02 1:14:13

Okay.

SPEAKER_04 1:14:14

And yeah, and so we like to have extra projects done like that every year where we take a deep dive into something. And so, yeah, that's one of the things. And we're hoping that recently I've heard that in the States there's some hemp where they're taking CBD from and other things, which my understanding is will still work. It's just a lot weaker, but will still work for people without giving. If you don't have to like if you titrate it right and you get the right the right one, you don't necessarily have to have any like stoned feeling or anything like that. It's just the pain just kind of goes right.

SPEAKER_01 1:14:50

It like dullens the nerves a little bit. It's funny that you say that about the research because I did so much research on medical marijuana because I didn't want that. It's kind of hard that when you have that stigma, you know. I was raised, my father was a police officer. Like think about drugs, you know.

SPEAKER_04 1:15:11

I know. Well, it's funny because I would say I'm a bit older than you are, I'm 58. So when I'm but you look so much younger, lucky you. So when I so we were raised in that generation, though, weren't we? Where everything was like, this is your mind on drugs. And I mean, the idea of having even a puff of marijuana, I never even tried it for fear that something no, you know. But now it was actually my my own son who is actually he's really he's a he's really into nutrition and all that kind of stuff. And he says, you know, mom, I you really need to look at this because I'm telling you, there are some anti-inflammatory properties of certain ones that that will work. And so I was literally like, okay, how do I do this? I don't smoke it, I use a vape when I need instant, and then I use lozenges if I'm out and about. It's and I just use it for breakthrough pain. So I do recommend that if people haven't looked into it, that especially as the stigma is coming off, it's just our age group, I think.

SPEAKER_01 1:16:09

Yeah, because I go into the dispensary, I'm like, I feel like I shouldn't be there, you know, and everybody else is normal. And I'm just like the anxiety of it, you know.

SPEAKER_04 1:16:23

I know it does. There's a certain, I mean, once you get it planted, that it's illegal, that it in cases, some cases it was looked at as immoral. I mean, you're it's you're brought up that way, and it's really hard to turn your mind towards it. But when you have this amount of chronic pain and it's affecting your life to this extent, yeah, I honestly think you should do your research and try it and try it under the supervision of someone that knows, like the gentleman that does our Friday ones that I was telling about, he has used it as part of his pain program too. And he's got a way that he suggests on titrating it up from start. It's a longer program. I think it takes about two weeks. But in doing that, like people quite often will take it the first time and they'll get like a head rush because they're taking too much the very first time, and so then they don't want it, like they're no, it's not gonna work for me. But he's actually got like this titration plan. Oh, yeah, yeah, that that's helping people so that you get sort of eased into it without feeling like overwhelmed by it all.

SPEAKER_01 1:17:21

So yeah, I think it's something it is, and I I do the research, like I'll look at the dispensary online and then I'll see what strains they have. And I research what they have, like the all the terpenes and everything. Some of them I don't want because they're not going to help me. And then I look for those strains that have what I need for inflammation.

SPEAKER_03 1:17:45

Yep.

SPEAKER_01 1:17:46

And by that time, two hours have gone by.

SPEAKER_04 1:17:50

I agree. It takes a long time, but when you find the right one, you can stick with it after that.

SPEAKER_01 1:17:56

Well, here they have a constant rotation. We have we have a lot of dispensaries here in Florida, but it they have different strains, all of them, and it changes week to week. So it's a little difficult, which is why it takes so much research. But it's not good.

SPEAKER_04 1:18:14

I guess if you know, I think they're called the isolates, aren't they? The things like L-I-M-O-N-E-S. I remember I it's funny that I and the terpenes and all that, like once you realize which group, like you said, are effective for you, then I guess it would be easier to filter that out in your search, looking for those ones. I'm not the one doing the deep dive into it. Actually, one of our admin assistants is, and so she's the one that would be able to talk about this. I'm just the one that said, please do it for us, and then we're gonna bring it back. So I'll know about more about it once I see the video that we that she's brought back.

SPEAKER_01 1:18:48

But yeah, I would I definitely am so interested in that, especially because you're in another country. I'm I'm very curious about all of that.

SPEAKER_04 1:18:57

Yeah. Now it's interesting. We are we are in Canada, but it's an international organization that we have. We have people literally from South Africa, New Zealand, Oceania, India, like the only place I don't think we have from right now is Asia. Like I don't think we have any Chinese or Koreans or anything yet, but pretty much all over. And so everything is different from place to place. But but we do find, just like anyone does in the chronic pain community, that there are some universal things that wherever you are can help. So yeah, we try to try to do that. And I was gonna say, so for us, and I'm gonna make sure we look into the part of US, about 70% of our members are from the US. Because of course, we started there and we're using US social media apps. So of course, that's how it, you know, that's how it goes. And so actually, I'm I'm gonna make sure I think about that. About you know, the extra obstacles that you guys have. We have things changing every week and we have different dispensaries, but there is a government dispensary that you don't go into a store, they have a catalog and you can buy it. It's from like the the official Ontario government site that's gonna be. Yeah, and so they have some basic ones that are always there. And for example, what I did learn is there is some you want full spectrum if you can get it, which means you don't want the isolates if you can get it. That's actually called usually, and I didn't know this was just a few weeks ago, either rosin or resin, if you can find it. Yes, yeah, and you'll see you should have rose in okay. Yeah, rose in or resin because it's the full bud. The other ones extract just certain parts by different chemical processes, so you don't get the full, and they actually work synergistically. So if you can get the full spectrum, it's actually really good. And then the one that was suggested to me, and and I and it's actually available in New Zealand and in Canada, so it might be available in the US. I just have to think what the the make is red can, I think. And it the one that I use is actually an oil, and it's 15, a 15-15 ratio, so 15 THC, 15 CBD on a full spectrum. And I find that personally works the best. And for me, um, if I'm gonna treat, and I only use like that heavy stuff when I'm really bad, like the days that you know you wake up and oh, you just can't get out of your head even. It's so bad. Then I just put it under my tongue and leave it there. It's just only a milliliter. So I wouldn't know what a milliliter would be down there. I don't know, uh just something little, just a little tiny, tiny bit. And you just put it under your tongue and leave it, and then after a little while, you just take a drink or whatever. And I found that that has the best, like overall, like some of them hit one pain and not the other, but I find this full spectrum 1515 or 3030, like half and half THC and CBD, really is is helpful, and a lot of people are saying that too.

SPEAKER_01 1:22:01

So yes, have you tried the creams?

SPEAKER_04 1:22:04

I haven't no, because I'm not really localized, like if I had the pain like all in one hip, or you know, my shoulders can get bad. So sometimes I've like I'll use a local like a pain robotarian or something, but I've never especially done it because I would have to like essentially coat my body in it.

SPEAKER_01 1:22:26

You have to take a bath in the Voltairan.

SPEAKER_04 1:22:28

Oh, yes, yeah, yeah, or the yeah, THC cream or whatever. Yeah, that's okay.

SPEAKER_01 1:22:32

Right. Wow.

LDN Cannabis Opioids And Closing

SPEAKER_01 1:22:34

Wow, I have a lot of information, and that was just incredible. I mean, I learned so much. I thought I knew what it was, you know. I was like, you know, adhesions on the spinal cord, but that was just a tiny piece of it all.

SPEAKER_04 1:22:51

Yeah, it's um it is kind of difficult to understand, and we're only now starting to get investigators that are looking at like the actual tissue level to try to understand what processes are going on that are being broken and that sort of thing. We've identified some specific protein folding issues that might be something, but it's so far away. I mean, yeah, that kind of stuff can take years to develop. But I think uh the one good thing about our community, and maybe it's a little easier in rare disease because it's one specific thing, is that everybody shares the knowledge and is so intense on finding the knowledge that we become pretty much everyone becomes very well educated and how this all works and you know, and understands what they're fighting. You know, now, of course, people that come in new, I would say three years it takes before they can sort of get to a point where they're living a decent life again.

SPEAKER_01 1:23:50

I don't know, maybe you felt that way after all your surgeries, that it just takes this time to heal and adjust and accommodate and pace and and all of that before you get to a spot where you can kind of it was a lot, it was ups and downs and a roller coaster, just like everybody else goes through, you know, diagnosis and then treatment and then you know, result of that, yeah, the whole process for everyone.

SPEAKER_04 1:24:19

Yeah, it's it's uh it's such a shame that there isn't more specific research specifically into chronic pain. But then as one of my researchers, because we're just trying to discuss how we were going to survey the pain states of people, and like she said, you know, pain isn't all pain, and that's true. Like there's muscle pain that's different than neuropathic pain, that's different from like the pain of like I've got numb feet, but there's pain in those numbers, which is a different sensation. And so I guess when the chronic pain, you know, researchers are trying to do it, it's such a broad category because so many things can cause it that I'm not sure. I mean, I suppose at least that's why we had the opioids, at least they work for most people. And it's really a shame that we've that we've lost it. Not that everyone had to be on them, and some people couldn't be on them, but but some people like myself have never I've never had a problem. I've never become I've on the same dose for years and years. I've never run it, like I never, I just never have any problems. I'm not asking for more, I'm not looking for more or anything like that. And it there's I think a fairly good percentage of people that can handle them if they have the right supervision. But in the States, I know it's a big deal right now.

SPEAKER_01 1:25:34

It is a big deal because people abused it. And for chronic pain patients, it it's just a lot of hoops that you have to jump through. And yeah, as you know, with these invisible illnesses, you you know, if the doctor can't see it, yeah, you know, and you want pain meds, they get a little crazy. Now, back in 2008, nine, you could get pain meds anywhere from any doctor here. I mean, I have a pain management doctor that was prescribing me. You're gonna you're gonna twitch 240 dilaud a month. With wait, we're not done. With 60 morphine.

SPEAKER_04 1:26:22

Oh, yeah. See, that's yeah, that's a month or a day.

SPEAKER_01 1:26:26

One month.

SPEAKER_04 1:26:27

Oh, okay.

SPEAKER_01 1:26:28

Oh no, no, no, I have 240 dilauded for the month, and then 60 morphine pills, so like one in the morning at night, and then they are like 10 milligrams or five milligrams or 30 milligrams of those. Oh, they were like 30, they were the biggest. Yes, I walked around like a zombie.

SPEAKER_04 1:26:46

Yeah, they did. I know for a while, I they're they're starting to move away from it. Honestly, I that I know for a while that they were doing the a big deal about let's do the long-lasting opioids and then add this short breakthrough through. And I think that's actually how I've still maintained it. But honestly, if I were to do this all again, uh, it's too hard now. I've weaned off twice. We've we've tried testing to see whether I can function and I just can't, and there's no replacement. The gabapentin doesn't work, and actually I find the gabic benton side effects are really bad for me anyway. And so we a lot of our patients are now coming in trying LDN, low dose naltroxone, yes, and having some fairly good effects.

SPEAKER_01 1:27:28

Now that might be specific to our disease because it it works on a some kind of a pathway, I can't remember which one that attaches to one of the receptors, a different receptor.

SPEAKER_04 1:27:43

Yeah, and it's it it tends to be, I I think it seems to be I've had more positive from about LDN from arachnidis patients than I've ever heard. But we also have now changed our our suggestions for treatment to start that first. And then if that doesn't work, then see if the doctor will move into it. So I'm you know, I might suggest that for people if they're really struggling and still haven't got any pain control, is to see if your doctor will start you on LDN. And then when they see you fail, if you really do, if it doesn't work for you, then they're more likely to be willing to go up a little bit and try a small opioid or something, as opposed to just keep handing out the gabapentin. I have a friend that couldn't walk, he began to not or couldn't uh see, could barely talk. He was at 3,900 milligrams of gabapentin a day. Huly because the pain is really bad, and that's like, oh, we're not giving you anything else, so we'll just keep hopping the gabapentin until they fight like finally he got a new doctor, and that was taken away and you know, weaned back down. Yeah, but he needed a small opioid to do that. Sure. So it's it is it's a it's a really hard thing because everybody's different and every jurisdiction is different about what people and doctors and believe in the area.

SPEAKER_01 1:29:01

So what they don't understand though is chronic pain patients. We're not looking for that high from skin medication. We're looking for something that's gonna get us out of bed and get in the shower. Yeah, that's just to be a functional human.

SPEAKER_04 1:29:19

Right, you know, I agree, and I'm surprised that more of them don't don't don't recognize that because I don't think I've ever had a head result from any of the opioids that I've taken. I I really don't. I've never I maybe become a little bit sleepier, but like nothing. I don't think that I'm less more fuzzy or anything, but it takes time, right? To know to get that exactly right for everybody. Um I I know they just said that there was gonna be a new a new pain pill that they had just suggested, and it was going around the groups, but then they said it was for acute pain. So I don't think we're any further along.

SPEAKER_01 1:29:59

Okay, yeah. Wow, Lori, I could sit here and talk to you for another hour. Well, it's probably because our lives are so similar. Yeah, you know, it yeah, I I really appreciate you coming on my podcast, especially because it's a little newer, and this was such good information. Like I said, I thought I knew a lot about it, and I realized I just knew I only knew a tiny part of it. So I'm really excited to go over this again and and take notes and you know, and share it with other people because I work with the chronic illness community, I even design awareness bracelets. That's how I thought I knew all this, but if I didn't know, there's gonna be other people. So I'm really excited about this.

SPEAKER_04 1:30:47

The doctors don't know. That's the thing. I mean, don't feel bad because even the doctors, and this is I think primarily the reason that our community is is so tight, is because nobody else understands it or has any anything to try to make it better. I mean, it's not necessarily medication, but it's you know, just like you said, facing, triggering, getting through the emotions, understanding motivation, and like all of those sort of and accommodation and accessibility changes and and all of that. And it takes a long time. The doctors don't know. So I think really it's just the support groups.

SPEAKER_01 1:31:23

It's it is, it's the community. It's like I mean, you learn so much from other people and other patients, more so than what you would learn from the doctor, because they don't have time, they don't have time to look in. I worked for a doctor for a long time and they don't have time.

SPEAKER_04 1:31:41

No, they don't, and what we often hear, and I don't know how many of you guys do, but we often hear, oh, you're too complex for me. See you later.

SPEAKER_03 1:31:48

Right.

SPEAKER_04 1:31:49

Like not, you know, well, oh no, you've got yes, it's very complex pie. Like, how do you know?

SPEAKER_01 1:31:54

Oh, see someone else.

SPEAKER_04 1:31:56

Someone else to see, and then you know, then where are you? And I think that's where a lot of people are, especially with arachniditis, is like my life just went from you know thriving to bed ridden in a matter of months. I mean, you can you can have this hit depending, it can hit immediately after the trauma, it can hit, it can develop 20 years after the trauma. We don't know why, and but we have noticed that in the people that have developed it, like may have had fibromyalgia for a while and then has have another trauma, like they slipped and you know, hurt their back or had a surgery or something of that nature, then that's when it starts to really expose itself. It comes in big. And then when they look back, they're like, Yeah, I did have that trauma, and I've always had chronic pain in my back since then, but I just thought it was lower back pain. Right. And then I had the slip, and then now I'm in real trouble, I can't get out of bed. Yeah. So just so people know to keep it. And I we always say if you're gonna take an epidural steroid needle, which you're talking about in your back, ask for guidance. You can either get fluorescence, fluoroscopy, or in some cases can get it's it's expensive, but you can get CT guidance because all they have to do, and you you'll see it on my website, I'll I'll try to bring you a picture, is first pass that first space. So they have to go through the through the dura. I mean, sorry, if they hit if they go, if they go just a little bit too far and get into passage or into the CSF fluid, like just even at the littlest bit, then you're you're at risk. It's and I mean we don't even know what predisposes like predispososis word, but it makes people more uh more tempted more losing it, tempted to get it than others. Sorry, my yes.

SPEAKER_03 1:33:45

No, that's okay.

SPEAKER_04 1:33:46

It's very quiet here. My husband's gone all day, you know, and you're just working quietly. And when I get a chance to talk to people, I'm like oh.

SPEAKER_01 1:33:57

I know I don't get out much either. And it's funny, we had gone to the store the other day and I didn't know how to use the debit card because now we just tap it on the thing, and I'm like, sorry, I don't get out much.

SPEAKER_04 1:34:13

And I'm just trying to stick it at me and she's like, just tap it. And I'm like, how?

SPEAKER_01 1:34:17

I know, and I'm like so embarrassed. I know the things we go through.

SPEAKER_04 1:34:25

Yeah. Well, it's really nice to meet you. It's Michelle, right?

SPEAKER_01 1:34:27

Yes, yes. Yeah, it's really nice to meet you. It is so nice to meet you.

SPEAKER_04 1:34:32

Yeah, and if you can, if we can ever work on anything together, if you ever need anything, any help with I don't know, graphic creation, anything. We've got a team and we'll be willing to help.

SPEAKER_01 1:34:41

Yeah, same with you. And I would love to follow up and check in with you in like six to eight months, see where you're at with your research and what you're doing in your projects. Is that okay?

SPEAKER_04 1:34:51

Yeah, that'd be great. Hopefully, our manuscript will be published then and I can share it.

SPEAKER_01 1:34:54

Yes, that would be wonderful.

SPEAKER_04 1:34:56

Yeah, Lori.

SPEAKER_01 1:34:58

It was a pleasure, and thank you so much for coming on my podcast and take care of yourself, okay?

SPEAKER_04 1:35:04

I appreciate the opportunity and good luck with your podcast. I I'm sure it's gonna go well.

SPEAKER_01 1:35:09

Thank you so much. Take care. So, what did you think of Lori's story? I think it was a powerful reminder that even in the face of constant pain and uncertainty, people will come together and find answers, support, and some hope. Thanks for listening. Stay strong. And if you like my podcast, please hit subscribe. And if you know somebody that needs a little hope and inspiration, please send them my way. Thank you. And don't forget, you're never alone.