A vs AA, inflammation, torn tissues, pain, scarring =permanent pain, NECK PAIN, _ Julie's Pain Techniques _
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00:00Welcome, everyone. Good evening. And thanks for being with us for Season 4, Episode 4 of DocTalks with Dr. Forrest Tennant and friends.
00:10We're happy that you could be with us, and we're so happy that we have a special guest with us tonight, Julie.
00:17And Dr. Tennant, we'll let you go ahead and take it away. It's all yours. Thanks so much.
00:22Okay. Yeah, thank you so much.
00:24Hold on. Okay, there we go.
00:27Okay. All right. Well, thank you, Jamie. First off, for the audience here, I appreciate it.
00:34I'm recording this a little ahead of our usual schedule because of a travel problem I have.
00:40But anyway, we're going to start off with our usual little bit of education,
00:46and then we're going to interview what I think is going to be an exciting guest.
00:51Well, thank you, Jamie. First off, for the audience here, I appreciate it.
00:56I'm recording this a little ahead of our usual schedule because of a travel problem I have.
01:02But anyway, we're going to start off with our usual little bit of education,
01:09and then we're going to interview what I think is going to be an exciting guest this evening.
01:16One of the things that comes up all the time is people develop severe pain,
01:24and they go and they get an MRI.
01:26They go and see one doctor after another, and they never get a diagnosis.
01:31And indeed, years ago, those of us who were internists,
01:37and I just did regular internal medicine practice at one time,
01:40we used to have something called an FUO.
01:43That stood for fever of unknown origin.
01:46Well, when I got into doing pain work, we started using the term PEO,
01:52PEO meaning pain of unknown origin, and that still exists today.
01:58Just yesterday, I was visiting a pain clinic,
02:01and there were all kinds of people there with pain all over, the usual things, but no diagnosis.
02:08Nobody knew what was the matter with them.
02:11They had a little back trouble, fibromyalgia, carpal tunnel, trigeminal neuralgia,
02:17plantar fasciitis, irritable bowel, pudendal neuropathy.
02:22In other words, the doctors were there trying to do their best to treat them,
02:27and the patient had trouble in most cases finding help,
02:31but literally, they didn't have a specific diagnosis.
02:36Now, that's been unfortunate, but we're now at a point of understanding
02:43to where we don't have to have any more of those PEOs.
02:47We can now pin down the cause of pain in practically everyone.
02:52Now, I know a lot of you have heard me talk about this in the past,
02:55and you're going to hear a lot about it in the future,
02:58but the thing that has made it possible to know what's going on with practically everybody else
03:06is the concept of autoimmunity and the development of autoimmune tests
03:12and how the body develops what we call autoimmunity.
03:15Now, real quick, for those of you who don't know what autoimmunity really stands for,
03:22in simple terms, what it means is that there is some element or process in the body
03:29that is turning on the body and attacking the body's own tissues.
03:34Now, when this happens, the first thing that happens is that the autoimmune process causes inflammation.
03:43Okay?
03:44Now, that's the case whether it's in the muscles where the fibromyalgia is
03:49or it's in the carpal covering of your wrist where you get carpal tunnel syndrome
03:55or the nerves in your face where you get trigeminal neuralgia
03:59or in your mouth where you get burning mouth
04:01or your feet where you get burning jeans or worse,
04:03you get it in the groin area for pedendal neuropathy.
04:06In other words, you start off in autoimmunity with inflammation.
04:12Now, once you get inflammation in tissues, the next thing that happens is you get micro tears.
04:17It starts tearing the tissue.
04:19And that's when it really starts to hurt is when you start tearing the tissue.
04:24And then when you tear the tissue and you don't resolve the tears and the inflammation,
04:29then you start getting nerves being destroyed, small ones.
04:34And so you get nerve destruction.
04:36We call that small fiber neuropathy now.
04:39And then after a while, you may get scarring.
04:43Now, all of you are familiar with that because it's the same as a wound.
04:47In other words, if you get a wound on the skin, you start off with inflammation,
04:51then tearing, then pain, then scarring.
04:55And it can be permanent pain after that.
04:58So anyway, that's autoimmunity.
05:01Now, one of the things that causes us a lot of difficulty
05:06and it makes it very difficult to understand particularly pain in the neck.
05:13Okay?
05:14Now, there are two areas of pain that almost are the worst that you see in clinical practice today.
05:21And one is pain in what's called the pudendal or the peroneal area, better known as the crotch.
05:28That's terrible pain.
05:29Rectum, vagina, penis, that area.
05:32And that's terrible pain.
05:34It is rivaled by neck pain.
05:37And neck pain can be extremely terrible, just like the pain in the peroneum.
05:43Now, in the neck, to understand pain in the neck,
05:47you have to understand the difference between adhesive arachnoiditis and plain arachnoiditis.
05:56Okay?
05:57Now, first off, what is arachnoiditis?
06:00What is the arachnoid?
06:02Now, the arachnoid is layers.
06:06And under a microscope, this layer looks like a spider web.
06:10That's where the term arachnoid comes from.
06:12I think the Dutch coined that in the 1600s.
06:15And so you have this arachnoid layer around your brain and all around the spinal cord.
06:22And it's a very delicate membrane.
06:26It can tear easily.
06:27But it's got a lot of small nerve fibers, and it just plain hurts.
06:32Okay?
06:33Plain hurts.
06:34Now, so what happens is that we're going to, first off,
06:39we're going to give you a demonstration here.
06:42I have here with me something you're familiar with, a toilet paper roll.
06:46Now, I'm not going to teach you how to use this.
06:49I want you to know that this is looking at the tube as an example, okay?
06:53In other words, the spinal cord is a tube, just like this roll of toilet paper.
06:58Okay?
06:59Now, and this tube is going to be your spinal cord,
07:03so kind of keep that imagining for a moment.
07:06And suffice it to say, this lining in here,
07:13I want you to think of this as the paper being the dura,
07:16and the cardboard is the arachnoid.
07:19It's two layers, fundamentally.
07:21Okay?
07:22So we're going to come back to this in just a moment.
07:25But I've looked it up.
07:28The term arachnoiditis was defined in medical dictionaries as early as 1873.
07:35That's a long time ago.
07:37Okay.
07:38Now, what you need to know, however, is that they came upon this diagnosis not in live people,
07:47but in people who had died.
07:50Okay?
07:51Because we can't biopsy your arachnoid.
07:55We can't go ahead and put a needle in your brain or in your spinal cord and pull out arachnoid.
08:01We would obviously cause your death or something.
08:04So in live people, we have to try and look at the arachnoid on MRIs.
08:11It's a very difficult job, I might add, and I'm going to come to that here in a second.
08:16So the term arachnoiditis has been in the medical dictionaries and not changed a bit since 1873.
08:24Go pick up a medical dictionary, a Tabor's, a Dorland, anybody you want to pick up.
08:28Pick up a Gray's Anatomy, and you will find the definition of arachnoiditis is inflammation of the arachnoid membrane.
08:38Okay?
08:39That's what that is.
08:41Now, if you have inflammation of the arachnoid membrane, you're going to have pain.
08:48It really hurts.
08:50It really hurts.
08:53Now let me get into the message that I want to try to get across.
08:57It's a little complex.
09:01In the spinal cord, you have this tube.
09:05Like I say, the toilet paper is going to be our dura, the outer layer.
09:09That cardboard is going to be our inner layer, the arachnoid.
09:12And inside this, you've got a cord.
09:16Okay?
09:17You've got a spinal cord.
09:20Now, the spinal cord, if you reach around with your hand and touch the middle of your back, the spinal cord ends there.
09:31But it has about two dozen fine nerves that we're going to look at with this wire today.
09:38And they're nice and thin.
09:40They're like threads.
09:41Okay?
09:42These nerves that dangle down from your spinal cord, pretty thin.
09:50There's about two dozen of them, and they're called the cauda equina.
09:54Now, adhesive arachnoiditis is when these fine nerves get glued to the arachnoid.
10:05Okay?
10:08We call that adhesive arachnoiditis because the inflammation has caused inflammation, tearing, adhesion, and gluing.
10:17You've seen scabs before and how sticky it is.
10:20That stickiness sticks the nerves to the arachnoid.
10:25And boy, does that hurt.
10:27And we can see this on an MRI.
10:30We can see where these nerves have clumped up and stuck to the arachnoid.
10:37Okay?
10:38And that's adhesive arachnoiditis.
10:41Now, in the neck, however, we don't have nerves.
10:47We only have the spinal cord.
10:50Okay?
10:51We only have the spinal cord.
10:55However, if the arachnoid gets inflamed in the neck, it's not visible on an MRI.
11:05Okay?
11:06One of the failures of diagnosis, people can have terribly severe pain.
11:12They go down and get an MRI.
11:14They see the neurosurgeon, the orthopedist, the neurologist, and they say,
11:18God, we don't see anything wrong with you.
11:21That's because in a lot of cases, the arachnoid is inflamed,
11:28but it doesn't show up on the MRI.
11:33Okay?
11:34So people need to know that.
11:36And one of the reasons why we're not getting good pain treatment
11:39or nobody wants to talk about pain in the neck
11:41is that we don't have an MRI picture of the arachnoiditis.
11:46And we can see where the discs are flipped and pushing on the canal.
11:50We can see if there's some major tumor there, but we can't see the arachnoiditis.
11:58And so much of terrible neck pain is caused by plain arachnoiditis,
12:03but we don't see it with an MRI.
12:07So that's one of the burdens that we have and that I want everybody to know about.
12:13So how do you diagnose arachnoiditis of the neck?
12:16Well, it's kind of by exclusion.
12:19We look at the neck, and we look at the MRI, and we don't see much.
12:23And so then you kind of have to determine if arachnoiditis is there.
12:29First off, by knowing they've got terrible pain.
12:32That's number one.
12:33And number two, we do have tests now for autoimmunity,
12:38and we're getting better at that at all times.
12:40We now know that viruses activate and cause autoimmunity.
12:46The 16-bar virus is the major one, but we've also got mycoplasma and Lyme,
12:51and we've got Coxsackie, and we've got herpes 6, and now we've got COVID.
12:56All these viruses can activate the autoimmune process.
13:01So we now know that parasitic viruses are the major cause of autoimmunity
13:08that gives us these terrible pains.
13:11So anyway, let me summarize this and get on to talking with Julie.
13:15I want everybody to know that there's a difference between adhesive arachnoiditis.
13:19That's in the lumbar area, the lower back, because we can see it on an MRI,
13:24and we've got plain arachnoiditis, which we really can't see on an MRI,
13:29and we have to kind of diagnose that with blood tests,
13:32and we're just kind of eliminating anything else that causes that.
13:37And then the next educational point, I know some of you have heard me say this before,
13:43and you're probably going to hear me say it 20 more times.
13:46Most intractable pain patients today have some degree of autoimmunity
13:53usually caused by either a genetic rheumatic disease or one of the viruses,
13:59mainly Epstein-Barr, has reactivated
14:02and caused some autoimmune processes inside the body.
14:07Okay, again, everybody who hears this, I know this is new.
14:12These are medical breakthroughs. It's new science.
14:15So spread the word and teach everybody you can.
14:19And anyway, it's my pleasure today to move forward,
14:22and as we normally do on this show,
14:26interview somebody who's having to live the problem.
14:31And Julie, welcome.
14:34We appreciate your past comments on shows.
14:36Julie, let me start off with a couple of basics.
14:38Where are you from? Where's your home?
14:40Minneapolis, Minnesota.
14:42In Minnesota?
14:43Yep, the Midwest, Minneapolis.
14:45In Minneapolis.
14:46Well, Minnesota's getting a lot of publicity today with your help of the vice presidential candidate.
14:53Yeah, Tim Walz, he stole our good, he's been a great governor,
14:56and he's been taken from us for hopefully a different cause.
15:00So Minnesota's going to float away because the governor's gone? Is that it?
15:05We hope not. We hope not.
15:09Okay. Is that your home where you were born and raised?
15:13No, I was born in Wisconsin, so the Midwest, but I was born in Wisconsin.
15:18One of the things that comes up all the time is people develop severe pain,
15:28and they go and they get an MRI, they go and see one doctor after another,
15:33and they never get a diagnosis.
15:35And indeed, years ago, those of us who were internists,
15:41and I just did regular internal medicine practice at one time,
15:44we used to have something called an F.U.O.
15:47That stood for fever of unknown origin.
15:50When I got into doing pain work, we started using the term P.E.O., P.U.O.,
15:57meaning pain of unknown origin, and that still exists today.
16:02Just yesterday, I was visiting a pain clinic,
16:05and there were all kinds of people there with pain all over the usual things,
16:10but no diagnosis.
16:12Nobody knew what was the matter with them.
16:15They had a little back trouble, fibromyalgia, carpal tunnel,
16:20trigeminal neuralgia, plantar fasciitis, irritable bowel, pudendal neuropathy.
16:26In other words, the doctors were there trying to do their best to treat them,
16:31and the patient had trouble in most cases finding help,
16:35but literally they didn't have a specific diagnosis.
16:40Now, that's been unfortunate,
16:43but we're now at a point of understanding to where we don't have to have any more of those P.U.O.s.
16:50We can now pin down the cause of pain in practically everyone.
16:55Now, I know a lot of you have heard me talk about this in the past,
16:59and you're going to hear a lot about it in the future,
17:01and that is the thing that has made it possible to know what's going on with practically everybody else
17:10is the concept of autoimmunity and the development of autoimmune tests
17:16and how the body develops what we call autoimmunity.
17:19Now, real quick, for those of you who don't know what autoimmunity really stands for,
17:26in simple terms, what it means is that there is some element or process in the body
17:33that is turning on the body and attacking the body's own tissues.
17:38Now, when this happens, the first thing that happens is that the autoimmune process causes inflammation.
17:47Okay?
17:48Now, that's the case whether it's in the muscles where the fibromyalgia is
17:53or it's in the carpal covering of your wrist where you get carpal tunnel syndrome
17:59or the nerves in your face where you get trigeminal neuralgia
18:03or in your mouth where you get burning mouth or your feet where you get burning teeth
18:06or worse, you get it in the groin area for pedendal neuropathy.
18:10In other words, you start off in autoimmunity with inflammation.
18:16Now, once you get inflammation in tissues, the next thing that happens is you get micro tears.
18:21It starts tearing the tissue.
18:23And that's when it really starts to hurt is when you start tearing the tissue.
18:28And then when you tear the tissue and you don't resolve the tears and the inflammation,
18:33then you start getting nerves being destroyed, small ones.
18:38And so you get nerve destruction.
18:40We call that small fiber neuropathy now.
18:43And then after a while, you may get scarring.
18:47Now, all of you are familiar with that because it's the same as a wound.
18:51In other words, if you get a wound on the skin, you start off with inflammation,
18:55then tearing, then pain, then scarring.
18:59And it can be permanent pain after that.
19:02So anyway, that's autoimmunity.
19:05Now, one of the things that causes us a lot of difficulty
19:10and it makes it very difficult to understand particularly pain in the neck.
19:16Okay?
19:18Now, there are two areas of pain that almost are the worst that you see in clinical practice today.
19:25And one is pain in what's called the pudendal or the peroneal area, better known as the crotch.
19:31That's terrible pain.
19:33Rectum, vagina, penis, that area.
19:36And that's terrible pain.
19:38It is rivaled by neck pain.
19:41And neck pain can be extremely terrible, just like the pain in the peroneum.
19:47Now, in the neck, to understand pain in the neck,
19:51you have to understand the difference between adhesive arachnoiditis and plain arachnoiditis.
19:59Okay?
20:01Now, first off, what is arachnoiditis?
20:04What is the arachnoid?
20:06Now, the arachnoid is layers.
20:09And under a microscope, this layer looks like a spider web.
20:13That's where the term arachnoid comes from.
20:15I think the Dutch coined that in the 1600s.
20:18And so you have this arachnoid layer around your brain and all around the spinal cord.
20:25And it's a very delicate membrane.
20:29It can tear easily, but it's got a lot of small nerve fibers and it just plain hurts.
20:35Okay?
20:37Plain hurts.
20:38Now, so what happens is that we're going to, first off, we're going to give you a demonstration here.
20:46I have here with me something you're familiar with, a toilet paper roll.
20:50Now, I'm not going to teach you how to use this.
20:53I want you to know that this is looking at the tube as an example.
20:56Okay?
20:57In other words, the spinal cord is a tube, just like this roll of toilet paper.
21:02Okay?
21:03Now, and this tube is going to be your spinal cord, so kind of keep that imagining for a moment.
21:10And suffice it to say, this lining in here, I want you to think of this as the paper being the dura,
21:20and the cardboard is the arachnoid.
21:22It's two layers, fundamentally.
21:24Okay?
21:25So we're going to come back to this in just a moment.
21:28But I've looked it up.
21:31The term arachnoiditis was defined in medical dictionaries as early as 1873.
21:38Now, that's a long time ago.
21:40Okay.
21:41Now, what you need to know, however, is that they came upon this diagnosis not in live people,
21:50but in people who had died.
21:53Okay?
21:54Because we can't biopsy your arachnoid.
21:58We can't go ahead and put a needle in your brain or in your spinal cord and pull out arachnoid.
22:04We would obviously cause your death or something.
22:07So in live people, we have to try and look at the arachnoid on MRIs.
22:14It's a very difficult job, I might add, and I'm going to come to that here in a second.
22:19So the term arachnoiditis has been in the medical dictionaries and not changed a bit since 1873.
22:27Go pick up a medical dictionary, a Tabor's, a Dorland, anybody you want to pick up.
22:31Pick up a Gray's Anatomy, and you will find the definition of arachnoiditis is inflammation of the arachnoid membrane.
22:41Okay?
22:42That's what that is.
22:44Now, if you have inflammation of the arachnoid membrane, you're going to have pain.
22:52It really hurts.
22:54It really hurts.
22:56Now let me get into the message that I want to try to get across.
23:00It's a little complex.
23:04In the spinal cord, you have this tube.
23:08Like I say, the toilet paper is going to be our dura, the outer layer.
23:12That cardboard is going to be our inner layer, the arachnoid.
23:16And inside this, you've got a cord.
23:19Okay?
23:20You've got a spinal cord.
23:22All right?
23:24Now, the spinal cord, if you reach around with your hand and touch the middle of your back, the spinal cord ends there.
23:34But it has about two dozen fine nerves that we're going to look at with this wire today.
23:42And they're nice and thin.
23:43They're like threads.
23:45Okay?
23:46These nerves that dangle down from your spinal cord, pretty thin.
23:54There's about two dozen of them, and they're called the cauda equina.
23:58Now, adhesive arachnoiditis is when these fine nerves get glued to the arachnoid.
24:10Okay?
24:11We call that adhesive arachnoiditis because the inflammation has caused inflammation, tearing, adhesion, and gluing.
24:20You've seen scabs before and how sticky it is.
24:23That stickiness sticks the nerves to the arachnoid.
24:28And boy, does that hurt.
24:30And we can see this on an MRI.
24:33We can see where these nerves have clumped up and stuck to the arachnoid.
24:40Okay?
24:41And that's adhesive arachnoiditis.
24:44Now, in the neck, however, we don't have nerves.
24:50We only have the spinal cord.
24:53Okay?
24:54We only have the spinal cord.
24:58However, if the arachnoid gets inflamed in the neck, it's not visible on an MRI.
25:08Okay?
25:10One of the failures of diagnosis, people can have terribly severe pain.
25:15They go down and get an MRI.
25:17They see the neurosurgeon, the orthopedist, the neurologist, and they say,
25:21God, we don't see a thing wrong with you.
25:24That's because in a lot of cases, the arachnoid is inflamed, but it doesn't show up on the MRI.
25:36Okay?
25:37So people need to know that.
25:39And one of the reasons why we're not getting good pain treatment,
25:42or nobody wants to talk about pain in the neck,
25:44is that we don't have an MRI picture of the arachnoiditis.
25:49Now, we can see where the discs are slipped and pushing on the canal.
25:53We can see if there's some major tumor there, but we can't see the arachnoiditis.
26:01And so much of terrible neck pain is caused by plain arachnoiditis.
26:06But we don't see it with an MRI.
26:10So that's one of the burdens that we have and that I want everybody to know about.
26:16So how do you diagnose arachnoiditis of the neck?
26:19Well, it's kind of by exclusion.
26:22We look at the neck and we look at the MRI.
26:24We don't see much.
26:26And so then you kind of have to determine if arachnoiditis is there.
26:32First off, by knowing they've got terrible pain.
26:35That's number one.
26:36And number two, we do have tests now for autoimmunity,
26:41and we're getting better at that at all times.
26:43We now know that viruses activate and cause autoimmunity.
26:49Epstein-Barr virus is the major one, but we've also got mycoplasma and Lyme,
26:54and we've got Coxsackie, and we've got herpes 6, and now we've got COVID.
26:59All these viruses can activate the autoimmune process.
27:04So we now know that parasitic viruses are the major cause of autoimmunity
27:11that gives us these terrible pains.
27:14So anyway, let me summarize this and get on to talking with Julia.
27:18I want everybody to know that there's a difference between adhesive arachnoiditis.
27:23That's in the lumbar area, the lower back, because we can see it on an MRI,
27:27and we've got plain arachnoiditis, which we really can't see on an MRI,
27:32and we have to kind of diagnose that with blood tests
27:35and with just kind of eliminating anything else that causes that.
27:40But in the next educational point, I know some of you have heard me say this before,
27:46and you're probably going to hear me say it 20 more times.
27:49Most intractable pain patients today have some degree of autoimmunity
27:56usually caused by either a genetic rheumatic disease or one of the viruses,
28:02mainly Epstein-Barr, has reactivated and caused some autoimmune processes inside the body.
28:10Okay. Again, everybody who hears this, I know this is new.
28:15These are medical breakthroughs. It's new science.
28:19So spread the word and teach everybody you can.
28:22Anyway, it's my pleasure today to move forward and, as we normally do on this show,
28:29interview somebody who's having to live the problem.
28:34Julie, welcome. We appreciate your past comments on shows.
28:39Julie, let me start off with a couple of basics.
28:41Where are you from? Where's your home?
28:43Minneapolis, Minnesota.
28:45In Minnesota?
28:46Yep, the Midwest, Minneapolis.
28:48In Minneapolis. Well, Minnesota's getting a lot of publicity today with the help of the vice presidential candidate.
28:55Yeah, Tim Walz. He's been a great governor, and he's been taken from us for hopefully a different cause.
29:03Minnesota's going to float away because the governor's gone? Is that it?
29:07We hope not. We hope not.
29:10Okay. Is that your home where you were born and raised, or are you from somewhere else?
29:16No, I was born in Wisconsin, so the Midwest, but I was born in Wisconsin.
29:21Born where?
29:22In Wisconsin.
29:23In Wisconsin. Okay. Well, another good cold Midwest state. All right.
29:28Now, when did you first get sick? How many years ago?
29:32About, I'd say, 30 years ago when I was in my 40s.
29:39I started having issues with pain, first in my knees.
29:43And then I got parvo, and then I started developing all over pain.
29:49And I was diagnosed in the 1990s with laceration.
29:53And I had a cyst that was in my arm, and it took a while to heal, but,
29:58I was in a critical condition, and I wasn't taking any medicine for 30 years.
30:03I was only on medication for a year.
30:05Why?
30:06And then I started developing all over pain and I was diagnosed
30:11In the 1990s with fibromyalgia at the sister Kenny Institute
30:16Okay
30:19You started off with knee pain
30:22From there to fibromyalgia
30:25Where did you go from there? I
30:28developed breast cancer in
30:292000 and I ended up with severe radiation burns third and fourth degree radiation burns
30:36And ended up in the hospital for a while and that pain lasted about five years
30:41But during that time I developed and I believe it might have been latent
30:46But there was a rare condition called delayed pressure urticaria or delayed pressure angioedema. I
30:54Would get anything pressed on my on my skin very hard a waistband a shoe
30:59I would get gigantic hives and they would burn and they would itch and
31:04I'd also get flu-like symptoms with them and these
31:08These urticaria they would last sometimes seven to ten days. It was excruciating
31:13I I ended up living my life in nightgowns mostly
31:16Where did you where did the urticaria break out mostly on your chest?
31:21Any place that I something pressed on me?
31:23So like it was a bra strap or a waistband and it would appear hours later. So it was delayed pressure
31:28So if I had carried a bag on my shoulder a few hours later
31:33I'd develop huge welts on my shoulder
31:36So it's kind of a class of like a sun urticaria. It's some it's a rare. It's a rare disease. I
31:42Believe it's autoimmune. I believe the radiation therapy triggered it the radiation burns
31:47I can't prove that but that's the time that I had the severe burns was a time that this condition arose
31:54All right. No, did
31:56Have you did you get rid of this urticaria? I
31:59In about a few years ago, which I've read about after about 18 years it went into a
32:06Semi remission. I don't I don't get them very often. I only get them rarely now
32:10So it went into remission on its own
32:13However in a group on Facebook, there are some people who are taking one of the biologics for it now
32:19So there is one of the biologics that helps this condition, but I started going into remission before I had to take that
32:25What you sort of on your own now?
32:29Did you how did you?
32:31Did you start seeing a doctor just for your pain at some point along the way? Um, so after that
32:38Let's see. I also
32:42Let's see, I also do but have osteoarthritis which runs in my family
32:46so I have pain in all my joints and then I had a head injury and
32:50I fell and hurt my head
32:53It took me about a year to recuperate from that and I started going to a pain management doctor
32:58I went to it. I was getting some pain management in Duluth from a primary doctor and she stopped of course
33:04and then they sent me to a course and they
33:07Forced tapered me, but they let me have some medication and I took up all these classes on you know
33:13how to do things to help pain and
33:15Eventually I came back to Minneapolis and I am in a we have pain clinics here
33:21Where if you you know get drug tests and use the counter pills, but I do get some pain management
33:27From that I also
33:29developed
33:30Lyme's disease which was treated right away
33:33And then I also buy one of my main things now is I have had a chronic sinus infection for about nine years
33:41which I
33:42chronic
33:43Infection so for about nine years
33:45I've had so it's constant inflammation constant low-grade fevers
33:49I've had all kinds of antibiotics and two surgeries and it's intractable sinus infection
33:56So which can cause bodily pain also, so I have a bunch of things not a deheaser erected
34:01I just fortunately but a lot of that is for sure. Yeah. Yeah, but unfortunately I do have it, you know constant intractable pain
34:09Where is your?
34:11No, mainly. Um, I say it's all over pain
34:15Sometimes I kind of feel like I'm on fire like, you know, it's like I'm just got a blowtorch just and then also my joints
34:22my you know neck my
34:24Hips my knees I can't have any more surgeries because the sinusitis would cause sepsis
34:29So I can't have my like I need a knee replacement. I can't have that because it's sinusitis would cause sepsis. So
34:37But yeah, so I'd say all over kind of a burning pain and then my joints
34:42Are in pain, you know in pain
34:44All right. No, you've got all over burning pain and knee pain. So have you been given a medical diagnosis?
34:52No, just the fibromyalgia, but if you could get Nick if you could get a Nobel Prize
34:58I'd give you one because I do believe it's probably
35:02Immunologic as you mentioned to me in a letter
35:06If I had to say it, that's that's what I think. It's probably you know
35:13And you go to a pain clinic now have they
35:17mystified by your situation
35:19They don't you know, I tried to get both my primary doctor who's
35:23who teaches at a medical hospital and my pain clinic interested in any of your protocols and they just
35:30They're just you know, they have their standard thing. They ask the questions
35:35They give you the pills so they do they're not interested in diagnosing me or I can't do injections because I get reactions to cortisol
35:43So there they just are not interested at all in the cause
35:46In my I try to get my medical doctor
35:49I'm going to try again with this new information on the viruses, but they just don't seem interested at all
35:54I do I have thank you so much. I have gotten a lot of help from your protocols
36:00CBD oil whole
36:01Full spectrum CBD oil some of the supplements and I'm going to try some more things. They really have have helped
36:12In other words
36:13Yeah, I was gonna say you're it sounds like you're pretty typical about one thing
36:20If I think most people who probably watching this
36:24Probably never got too interested in pain or pain problems until this century
36:31Okay. Now in the last century there was I was a big part of it her back in the 70s and 80s and 90s
36:39We were very interested in the cause of these pain now once we had the fifth vital sign
36:45And the scale of one to ten
36:48The country and here's what I wanted. I'm getting ready to ask you're asking you
36:54Because you can vouch for this
36:56they
36:57Realized that so many people had pain that they that's what the country did
37:03Fundamentally was to and see if you agree with it
37:06They stopped trying to figure out the cause of the pain and figure out a way to treat the pain
37:13so at least people could get some symptomatic and some humanitarian relief and
37:19And so now and you agree that they did try to do that because I sound like you've been well, yeah
37:26Well, yeah
37:29So, but you don't have any doctors today who are interested in what's causing your pain
37:34No, and even when I try to you know, get them interested, you know, it's like
37:40They don't have the time or whatever. So yeah, in other words, you're getting a symptomatic pain relief
37:45But nobody's interested in what caused your pain or how you're gonna get better now
37:50You know
37:52Minimal symptomatic pain relief, right? I used to be on a long acting in a short acting. They don't do that anymore
37:57I used to be on a Benzo. They don't do that anymore. So, you know minimal pain relief. You're on minimal pain relief
38:06Yeah
38:09You talk to a lot of people who are in your same boat I can get minimal symptomatic pain relief
38:15But no no diagnosis and no help for the basic disease
38:19Yes, and I feel fortunate that I'm getting some because I talked to a lot of people who can't get any
38:24But I and I at the end I do want to share some things that do help me though. So
38:39No, I think that let me just ask you another question
38:46For the people watching this
38:49I mean we have thousands of people who are in your same boat
38:53They can get a little
38:55symptomatic pain relief medication
38:58But there's not much interest in
39:01Anything else and so you're pretty much on your own, right?
39:05Yeah, I mean and you're on your own to figure out what you've got and what you're gonna do about it, right?
39:12Okay. All right now
39:14Have you figured out how you've gotten this mess in the first place
39:19No, well, I believe it's probably I based on what you say, I believe it's probably a reactivation of a virus
39:26You probably know that's what I'm thinking. Have you been able to get the test for it?
39:31No, I'm gonna bug my doctor again
39:33But I can't she hasn't been interested in giving me the test nor can I convince her to give me?
39:38I'm gonna keep trying though. Okay. All right. No, let's go back to what you've got pain all over
39:46You've got knee pain
39:48Thank goodness. Your early carriers pain is pretty well gone
39:53And you probably got some autoimmunity
39:56Either your Lyme or a virus or both
40:00And you say you've got some things that have been helping you
40:03This is why we're paying you the big bucks to be here
40:11What's working for you
40:15You'll get your check next week
40:20The first thing I wanted to say thank you to everybody because this group helps and I imagine sometimes I'm holding your hands
40:26But I'm glad that you're here. I'm glad that you're here. I'm glad that you're here
40:30And I imagine sometimes I'm holding your hands
40:32But one of the things and some of the people have heard I'm going to mention four things
40:37The first thing a lot of people have no the first two things people probably know about and maybe they haven't heard them call this
40:45but the first thing that really helps me is called radical acceptance and
40:49That means that I accept that I am in chronic intractable pain. It doesn't mean that I like it
40:55It doesn't mean that I don't try and help it. It just means that I don't fight against it
40:59I don't swear at it. I don't curse at it. I accept it and
41:04That acceptance has given me a ground then to go on to other things
41:09So radical acceptance has helped me in my life. The second thing is the practice of gratitude
41:16Now I want to tell you and someone introduced me to this. I was not happy because I was not feeling grateful
41:22And so I was like, no, I'm not grateful. Well, they said you don't have to be grateful
41:27Practice gratitude and I started doing a gratitude alphabet every day. I'm grateful for air. I'm grateful for
41:35Babies, I'm grateful for my cats and I want to tell you I became grateful
41:41and there are some powerful endorphins that come with being grateful, but if people want to just
41:48Experiment with the practice of gratitude. I guarantee you it will give you some good feelings, you know if you stick with it
41:55How do you start tell me what how do you how do you start being grateful I
42:02Would say do a gratitude alphabet
42:04I'd say, you know when you're walking or when you're laying down in pain
42:08Just say think of something that you're grateful for that starts with an A an apple. I'm grateful for air
42:13The sample that starts with the B. I'm grateful for my breath
42:17That starts with the C. I'm grateful for my cats, you know, and for Z I use zany and for X I use
42:24I forget what I use x-ray, but you know, just so I just I would just say start with a gratitude alphabet every day
42:30You don't have to feel grateful. But if you practice you will become grateful
42:34Okay. All right
42:39The third one is something I know other people may know about but I
42:43It's something that I call toning
42:46but basically I
42:48Use my voice to express my pain to the universe to God. I
42:54It's made it may be a long drawn-out tone that changes in pitch it may be a
43:00Moaning I start with moaning and I get loud
43:03And sometimes I'll sing heaven's hymns or hymns work really well sing something really loud, but I tried to have it be like a prayer
43:11But I'll tell you that after about 15 to 20 minutes I get endorphins
43:16And I'm sure that there are studies that say that, you know singing helps with endorphins
43:20But you can just I mean, I don't know why we're suffering in silence
43:23I would say make noise sing out pain patients and I in sometime if you want out we can film me
43:30I'll do it. It's embarrassing, but I will show you how I do it. I I'm not embarrassed to do it
43:34I told my neighbors upstairs. I'm a little bit of duplex if you hear me
43:39I'm not that happy. I'm just expressing, you know, my pain. So that's the that's the third thing
43:45And
43:48That I think it's kind of unique but you know
43:50I know I used to belong to a choir and that would help but it's hard to get to a choir
43:54And then the fourth thing the fourth and final thing is and I think dr. Ibsen would be especially interested in this
44:00I stumbled upon a 12-step group for chronic pain patients
44:07That's there it's called see chronic pain anonymous CPA
44:11org a
44:13whole website
44:15It's based on the 12 steps
44:16But it's a gentle 12 steps and like one of their suggestions is do half of the things that you think you want to do today
44:23But they have they also they have meetings that are phone meetings. They have online meetings
44:29They have some face-to-face meetings people show up in their pajamas laying down and it's just a great source of support
44:36They don't focus on medicine or in doctors
44:39They focus on how to have you know emotional how to have a meaningful life with chronic pain and illness
44:45they focus on the emotional and psychological aspects of being a chronic pain patient or a person with a chronic disease and
44:53It's a spiritual. It's a you know, it's a practice, but it's powerful
44:58They also do have a book a daily reader. It is I found it on Amazon. It's called daily. Peace joy and comfort
45:06Inspiration for a meaningful life while living with chronic pain and chronic illness
45:11And it's a daily reader for people with chronic pain 1499. So I just put it in my basket
45:18So people who are interested, how do they get in touch or get started? Um, I'd go online and look up CPA
45:26chronic pain anonymous dot o RG and they have a beautiful website who are about you know
45:34They have brochures they have a meeting list and and
45:39Most of the meetings also have a contact person so you could always but I just sat in on a couple meetings quietly
45:45you know that you don't have to
45:47You know, there's no requirement except that you're you know, have a chronic pain or a chronic illness
45:52so I
45:53Was just astounded when I found that I was like how long I think it's they've been around since I think
45:59late
46:001990s early 2000 so not that long but yeah, it's a wonderful organization wonderful concept
46:06I highly encourage everybody to join in. Okay
46:11You've been delightful
46:13Keep up the good work and let's extend your list of four to five or six maybe and have you back
46:20Because I'm sure that you're going to help a lot of people with that
46:24Thank you, you bet appreciate your help and support here Jamie, I'm going to turn it back to you and
46:31Let you continue on with the rest of the program. Thanks again, Julia. We'll see you next
46:38We have a great rest of our show to look forward to of part two and we've got dr. Ibsen with us
46:46So I asked Brandi
46:48To come to this part and she's here
46:52Thank you, so let me introduce to everybody
46:57and he's
46:59like all of you one of my favorite people and
47:03Brandi and I have been affiliated with each other for
47:07Like 15 months now, I think something like that
47:11and
47:13I'm gonna tell a little bit of background about you
47:16And interrupt me if I if I say too much
47:21So so Brandi reached out to me
47:27To Steve Arians pharmacist Steve last year after
47:34Essentially
47:39Well, let me just let me just tell Brandi story she she tripped over her dog and broke her leg
47:43They had heart they put hardware in
47:46It got infected. She complained bitterly of pain for about four months until they actually looked and found out that this hardware was infected
47:54This led to a year of osteomyelitis or bone infection requires intravenous antibiotics for a long period of time
48:02So she was placed on a PICC line, which is a line that goes in your arm and streaks up around your heart
48:08So that the antibiotics can get into your main bloodstream
48:12The PICC line got infected also ceded
48:17Bacteria to the tricuspid valve and she developed endocarditis and the tricuspid valve was destroyed
48:24So she had a tricuspid replacement. She had her hardware taken out and new hardware put in and it was a
48:31Show she was able to get her heart out. She was able to get her heart out
48:35It was a
48:36Show she was in Boston where the smart doctors are
48:41And what those doctors noticed is that they couldn't control her pain
48:46And they kept on adding pain medication. This was almost 10 years ago now
48:50So so they kept on adding pain medication to get her covered
48:53And she ended up on this massive amount of pain medication and they assumed back then
48:58That it was because of Crohn's disease and it may be she does have some
49:04Positive tests and biopsy results for Crohn's disease in addition to everything else. She's got she developed complex regional pain syndrome
49:11Which is in both lower extremities now
49:14And so for about nine years her doctor in Maine
49:19Inherited her and took care of her at the level of pain that she was having and at the level of pain medication that she
49:25Had been placed on and so I've determined I think that Brandy has
49:29Is an ultra rapid metabolizer of opiates and everybody on this call knows what that means it just means that you're not average
49:39Beyond the average in terms of how much medication you need
49:43the people to deal with these kinds of things
49:45Think that well if you're taking huge doses of medicine way more than most other people take you must be diverting it or selling it
49:51and and they investigated her multiple times pill counts all that stuff and she was
49:56Right on every time drug screen pill counts everything legal
50:03Somewhere and and you'll have to correct my dates on this her her doctor. Dr.
50:09Laumler in Maine took care of her for about nine years with these high doses
50:15and
50:18Obviously when you when you work with somebody for nine years you get to know them really well and dr. Laumler
50:22Believed accurately that Brandy was not selling or diverting these medications. So
50:29Ultimately the Board of Medicine in Maine went after dr. Laumler because of Brandy's high doses
50:36So they drove him out of practice
50:40And he decided to retire rather than battle the Board of Medicine
50:44So then dr. Adams took over her kit her care and he
50:49Had her for about a year and the Board of Medicine came to dr. Adams
50:53Kind of an offer he couldn't refuse, you know, they basically said you can't treat Brandy anymore
50:58You can keep your license, but you can't treat this patient anymore. And then they can't do that
51:03But they did and he he
51:06Was intimidated out of treating her
51:09So then he couldn't treat her anymore. Then she got a nurse practitioner and I won't mention her name
51:14And she treated Brandy for about a year and then she was harassed by her board
51:21So Brandy finally went to the st. John's
51:25hospital in Bangor and
51:28Went to their internal medicine department and she was assigned to a nurse practitioner named Eva query on Eva put her on a forced tapering
51:35thing for her own good
51:38And we know that when someone's doing something for your own good
51:41And we know that when someone's doing something for your own good it must be not for your own good and
51:47So she was undergoing a forced taper
51:50had basically
51:54Went back to went to bed
51:56Couldn't function and and she was still on you're like 60% of what she'd been on before but she was she was in agony and
52:03That's how she got in touch with me and I started treating her and when I took over the medic the prescribing
52:09essentially
52:10It was clear that no one else in Maine would treat her pain and Brandy has
52:15during this time
52:17Taken on her own
52:20self advocacy in in
52:23inspiring ways
52:24And please don't compare yourself to Brandy because she's she's not only an ultra rapid metabolizer
52:31but she's a brilliant thinker and
52:33strategist and activist
52:35and
52:38Future attorney or whatever. She ends up being doing and I'll let you be the judge of that when you hear her speak, but but essentially
52:47Together we have been keeping Brandy going
52:54Moment by moment with the
52:57Anticipation that these prescriptions could be interrupted at any time. He's having trouble getting a full prescription
53:02I think she's only gotten one full prescription and that we've been working together
53:06So so there's always a shortage and there's always struggling and going to find where it's a full-time job
53:12just to maintain her
53:15Well-being and stay alive
53:18So I'm very proud to know this lady and
53:23She's inspiring to me every day
53:25she is
53:32Relentless in her
53:36Commitment to self-care and for justice from the standpoint of a civil rights human rights
53:45Medical freedom kind of way