December 12, 2023 • 39 mins
Lauren is a professionally trained dancer whose biggest strength has always been finding expression and connection through movement. However, as she pursued her college career, she felt her body slowing down. Simple exercises became challenging, and her flexibility turned into stiffness. Lauren’s condition worsened after having children, and she periodically had to rely on crutches to accommodate her growing immobility. She was desperate for a doctor who could help her. Without a proper diagnosis, she was being torn between maintaining her two passions: dancing and family.
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Speaker 1 (00:04):
My entire foot.
Speaker 2 (00:05):
Around the joints of my toes, they were like red
and inflamed and swollen.
Speaker 3 (00:14):
She reminded me of my grandmother when she lived with us,
and she was ninety and had a walker. But then
I look at her and it's like, you're not my grandma.
You know, you should be dancing down the street as
it used to be.
Speaker 4 (00:26):
There are no tests to make the diagnosis, and where's
it headed. A lot of the time, we also have
no definitive idea, and that's incredibly unsettling.
Speaker 2 (00:36):
I physically took my toe and tried to bend it,
and I could not do it.
Speaker 5 (00:48):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of all Americans suffer from
some chronic illness, and many struggle for an accurate diagnosis.
(01:12):
These are their stories. A Lauren bred Pacheco, and this
is symptomatic. As a formally trained dancer, Lauren's biggest strength
(01:35):
has always been finding connection through movement. Dance was a
place for seeking calm and creativity as well as a
way to push herself physically and mentally. Now a mother
of two sons, Lauren may not dance as much as
she used to, but she's found ways to apply that
same passion to all aspects of her life as a wife, mother,
(01:56):
and business owner.
Speaker 2 (01:59):
I'm a dancer, a former dancer. I love dancing. I
don't do it professionally anymore, but it is something that
I will always have in my heart. I am a mom.
I'm a family oriented person. My favorite thing to do
on the weekends is watch my son play baseball and
basketball and do active things with my kids.
Speaker 1 (02:17):
I'm extremely active.
Speaker 5 (02:20):
And you're a boy mom, so that's a good thing. Yes.
Speaker 1 (02:23):
Yes. My thing is fitness and nutrition. I run a business.
Speaker 2 (02:27):
I'm a full time fitness and nutrition coach and we
help clients all over the United States and Canada.
Speaker 5 (02:35):
Being the dance was such a driving force for most
of her life, it seems only fitting that she met
her now husband, Matt while country line dancing.
Speaker 3 (02:44):
She's very outgoing, very helpful. She loves to help others
when she can, so leave it to me to meet
the line dance instructor at the time, and I'm the
guy with the two left feet that can't soon to
figure it out, but very good at it. And then
there's the fitness side of it, where she's always been
(03:05):
into eating rite and trying to improve herself on a
personal level.
Speaker 2 (03:11):
I mean, I eat, sleep, and breathe dance. You know,
I'd close my eyes at night and do dance routines
in my head.
Speaker 3 (03:18):
And at the beginning of a relationship, she was very
big in the dance industry. She had a lot of
choreographing and she also did a lot of performing. She
was in a bunch of different dance backgrounds. Ballroom to
hip hop is where she started, and she loved it.
Speaker 2 (03:36):
It just gave me a place to go when I
needed it. I'm an only child. I didn't have people
to play with, so it just gave me something to
be able to be my sounding board.
Speaker 1 (03:47):
So it became a lot to me.
Speaker 5 (03:50):
Dance was more than just an outlet for Lauren. It
was a way of life. She cherished the feeling of
freedom and expression that dance provided her. But you know,
an insidious illness would soon begin to erode the ability
she had for the things she loved most. So take
me back to the first time you remember seeing symptoms,
(04:14):
physical symptoms, that anything was a mess, and I think
it was skin correct.
Speaker 2 (04:20):
Yes, I was young when I started having skin rashes.
It was before high school that I started noticing these
patches of skin. And I mean I remember scratching them
until they would bleed. They were so itchy and uncomfortable.
They were my elbows, my shins, my ankles. So it's
(04:41):
not like it was on my face or anything like
that that would really make me super self conscious about it.
But it still didn't look pretty right. So that's when
I went to a dermatologist, and the dermatologist diagnosed me
with what they called at that point, dermatitis. They just said,
here's Cortizon cream. This is what we can give you.
But getting through high school, through college, even through getting married,
(05:06):
I always had patches somewhere. They were always a part
of me.
Speaker 5 (05:12):
Even as Lauren continued to excel at dance at increasingly
advanced levels, her skin patches became unrelenting. Having the dermatitis
diagnosis didn't seem to matter much because none of the
topical treatments provided any real relief. As Lauren pursued her
dreams of becoming a professional dancer, she simply pushed her
(05:32):
symptoms aside, where they remained unresolved into her college years.
So what happens when you got to college? How do
your symptoms morph? How do they evolve?
Speaker 2 (05:41):
You know, I went to college in a very rural area.
I was at Western Illinois University. It was cornfields, and
you know, my environment changed.
Speaker 1 (05:51):
I have bad allergies.
Speaker 2 (05:53):
Those were definitely affected with moving into a different area,
different seasons, and my my skin did actually get worse
when I got to college.
Speaker 5 (06:03):
Her husband, Matt, remembers noticing the inflamed areas of skin
near her ankles.
Speaker 3 (06:09):
She started seeing like skin issues. I used to give
her a hard time. I'm like, stop touching that, stop scratching,
and she's like I'm not, and I'm like, oh, it
looks like you are.
Speaker 2 (06:18):
I did also start having issues where I couldn't do
the things that I like to do as much anymore.
So I started to feel like some stiffness in my legs,
in my feet, the bottoms of my feet would hurt
when i'd go run. I was dancing in college, and
so there were times where I would just have to
(06:39):
take a break from practice because I just my body
didn't feel good.
Speaker 5 (06:44):
A college level competitive dancer starting to see her body
wear down has to be a little unsettling.
Speaker 2 (06:50):
Yeah, So we would practice multiple times a week. This
might be popping up for me, you know, once a month,
where it wasn't at that point in time affecting my
day to day or week to week. But it was
a pattern that maybe as an eighteen year old, nineteen
year old college girl, I just wasn't quite aware of
(07:11):
the frequency of which it was happening, in the patterns
that I was getting quote unquote worse.
Speaker 5 (07:18):
That's so insidious too, because it's so easy to say,
I'm away from home for the first time, I'm eating
different foods, I'm partying a little bit more than I
could with parental supervision.
Speaker 1 (07:30):
Correct.
Speaker 2 (07:31):
I had no idea that anything else was really brewing
or anything else was going on for me. The younger
I was, the less I was really in tune with,
you know, like, oh, I'm fine. You know, that's like
what a teenager says, right, I'm fine, it'll go away,
I'll be better tomorrow.
Speaker 1 (07:46):
And that's kind of where I went with it.
Speaker 5 (07:49):
The stiffening muscles and sensitive skin continued to linger, draining
Lauren of the strength that used to be so readily
available to her. She used to have no problem getting
up the energy to juggle studying and dancing, but now
everything was beginning to feel more and more like a chore.
Speaker 2 (08:07):
It's like if you have a really bad head cold
and you just feel completely bogged down by it.
Speaker 1 (08:12):
It was this fatigue that just wouldn't go away.
Speaker 2 (08:16):
I came home from college at one point and got
cat scans of my sinuses to see and yeah, my
sinuses were extremely inflamed. They told me that it was
I had the option of getting sinus surgery, or I
could get put on different allergy medication or use nasal
sprays like that was the extent of what they thought.
Speaker 5 (08:36):
And that must have been difficult psychologically for you too,
because you've already said that dance in particular, was this outlet,
this escape, and now it's getting more difficult to really
enjoy that outlet and escape.
Speaker 2 (08:52):
Yes, But I think also with that athlete mentality, my
heart was you need to push harder, you need to
try harder, you need to show up, you need to
do the things. You need to keep working. So it
wasn't even like, oh, I'm not really enjoying it.
Speaker 1 (09:06):
Anymore. It's that addiction.
Speaker 2 (09:07):
It's at hunger where you want to get better, you
want to keep working harder, And that's where all of
my energy was focused on, which sometimes meant ignoring the
things that I probably shouldn't have ignored at that time.
Speaker 5 (09:22):
During her last year of college, Lauren ended up contracting
MRSA and a serious staff infection, which required multiple procedures
to clear out of her system. This health setback forced
Lauren to stop dancing and to move back home to
properly recuperate. This abrupt transition from a vibrant dance field
routine to a more sedentary lifestyle took its toll on
(09:45):
her body, but after she'd recovered, she was determined to
get back into a fitness routine. And what better workout
partner than her future husband.
Speaker 2 (09:54):
I said to him, my foot feels funny moving through
these workouts. He says, maybe you should take a step back,
and I'm like no, I'm like, I'm really getting results.
Speaker 1 (10:02):
I can work through it.
Speaker 2 (10:04):
And there comes my elite athlete mentality, right, I can
work through it.
Speaker 1 (10:09):
I can work through it.
Speaker 5 (10:10):
What did you initially attribute to that to? I mean,
were you ever on point? Did you do ballet. Were
you thinking that it was just like a leftover injury.
I figured that it was just too much wear and tear.
I'd rest for a few days, A month would go
by and it would come back. A month or two
would go by and it would come back. But I
(10:30):
always knew that if it came back, I'm like, that's
my warning sign that I just need to take a
few days off and I'll be fine in no time.
So I did let that go for years. Lauren and
Matt married and soon after started their own family, welcoming
two beautiful sons, but the journey through pregnancy and childbirth
two times over exasperated Lauren's symptoms. With her focus on
(10:52):
all the ups and downs of being a new parent,
she continued to push her pain aside, not realizing a
larger picture was starting to take shape. It wasn't until
the signs became obviously beyond the postpartum norm that Lauren
and Matt knew they had to take action.
Speaker 2 (11:09):
Finally, it got to a point where I was doing
laundry and like He's like, you are limping to the
laundry machine, Like there is no.
Speaker 1 (11:17):
Way that you are actually okay.
Speaker 3 (11:19):
She starts limping, and it's like it's just weird. All
of a sudden, you're in your mid twenties and then
you start limping and you're like, what's going on here?
Did you twist your ankle? Did you do anything? And
it just kept seeing a trend of like different body
aches and pains, and sometimes it switched from one side
of her body to the other. It was really hard
(11:40):
to understand.
Speaker 2 (11:42):
My entire foot around the joints of my toes they
were like red and inflamed and swollen, and he's like,
you need to put your feet up. Something is not right,
And I thought, well, maybe I hurt myself. Normally, when
you hurt yourself, you could like pinpoint the time where you,
(12:02):
you know, broke your foot or broke a toe.
Speaker 3 (12:06):
We weren't sure what it was. We just thought maybe
it was after having a child. Certain things happened to
you that I don't know, either change or take a
long time to go back to the way they were.
Speaker 2 (12:17):
We had kids, and right around the time I had
my second son, I was still avidly working out and training,
and I got to a point where I could not
do a lunge because my toes would not flex that
was where I was, and I got to a point
where I physically took my toe.
Speaker 1 (12:40):
And tried to bend it, and I could not do it.
Speaker 5 (12:45):
So it was like it was a fused, solid bone
as opposed to small bones that move in conjunction with
one another.
Speaker 1 (12:52):
Correct.
Speaker 2 (12:54):
It was like imagine something like completely rusted and you
trying to move it like there was no give there.
Speaker 1 (13:01):
It was stuck.
Speaker 5 (13:02):
You must have felt so betrayed by your own body.
Speaker 1 (13:06):
Broken, completely broken.
Speaker 5 (13:10):
Until now her body had been her instrument, her outlet,
her means of expression, but that was being quickly ripped
away from her by these unexplained symptoms. Balancing the demands
of her two greatest loves, dance and family, became an
ongoing struggle.
Speaker 3 (13:26):
I mean, Lauren's always been really good at pushing through
and fighting for what she wants. It definitely gotten a
way of her day to day activities, and like there's
certain things like we didn't go to the zoo with
the kids or go to certain things that you're going
to have to be on your feet a lot, because
she knew she wouldn't be able to handle it or
she'd be paying for it for days afterwards.
Speaker 1 (13:49):
So I left my dance career. It was an impossible
choice for me to make.
Speaker 2 (13:55):
I think, you know, to be a professional dancer takes
an extreme amount of work and perseverance and dedication and
sacrifice to get to that level, which is where I
was at.
Speaker 1 (14:08):
It was like crashing into a brick wall.
Speaker 5 (14:11):
Lauren explained, dances almost her happy place, a safe place
where she could just lose herself. What was it like
to see her mobility challenged, to go from forget about dancing,
not being able to walk? What was that like to witness?
Speaker 3 (14:30):
It was hard to watch. She struggled with it a lot,
just because she had so much creativity that didn't feel
like work, because she loved what she was doing. Was
hard to see. You know, she had multiple occasions where
she would get down on herself because she just couldn't
do it, and she couldn't understand why.
Speaker 1 (14:49):
You have all of this momentum driving you forward.
Speaker 2 (14:52):
You're like, you're driven to get to where you're going,
and then you come to this halting stop and you
can only push through it so much before it just
starts to break you down. Than if you know, boys
when they're toddlers, you are doing nothing but trying to
chase them down as soon as they get they get
move in. It is just a constant hustle and it
(15:13):
was tough. It was really tough. So I had nothing
other to say than I can't play with my kid
on the playground, but I can show up to work
and dance with my dance partner. There's something that didn't
seem right to me about that picture, and I had
to at that point give or take something.
Speaker 1 (15:28):
And it was always going to be family over everything.
Speaker 5 (15:32):
Despite setting dance aside, Lauren didn't lose her passion for
improving lives through fitness. She redirected that enthusiasm into a
career in personal training, providing empowerment in a much less
taxing way. But with the tightness in her feet worsening
and none of her at home treatments working, she decided
to go to a pediatrist in search of more effective solutions.
Speaker 1 (15:57):
I thought I broke my toe.
Speaker 2 (15:58):
It was on one foot specifically at that point, and
I said to my husband, I said, something's wrong. I
don't remember breaking my foot, but it is bad to
the point where I cannot move.
Speaker 1 (16:11):
We went into the pediatrist. I got X rays.
Speaker 2 (16:13):
He's like, well, your to's not broken, but you're not
even thirty years old, and we're seeing like advanced arthritis
patterns in your joints. So that was kind of the
first time. I was like, what do you mean I
have arthritis in my feet?
Speaker 3 (16:31):
And we're like, well, she was a dancer, so I
guess that could be possibility. That also puts another curveball
in the situation of like, when we're looking at her feet,
is this like a byproduct of all the years of
dance or is this something new?
Speaker 5 (16:46):
Wow, I'm trying to wrap my head around that. So
you are a young mother, very active, very health oriented,
and suddenly you're in a position where you're losing mobility
entirely of one foot.
Speaker 1 (17:04):
Correct.
Speaker 2 (17:05):
What was going through my head was he's wrong, Like,
there's no way I eat healthy, I am active, I exercise,
I do all the things that you're supposed to do,
and I'm only twenty six. There's just no way that
it's a possibility that I have arthritis.
Speaker 5 (17:22):
While the arthritis diagnosis didn't sit well with Lauren, it
would lead to another clue. The pediatrist was examining her
feet and noticed the rough skin patches on her ankles
and knees. Though Lauren had been previously diagnosed with dermatitis,
this looked different.
Speaker 2 (17:39):
He said, I highly recommend that you go to you
back to your dermatologists and ask them to buyopsy these
skin patches to see if it is psoriasis. And he said,
and if it is, your next visit is going to
be to a rheumatologist. So the dermatologist they did find
that it is psoriasis.
Speaker 5 (18:01):
That must have been for both of you, like, who
cares about the psariasis? Right, We've got bigger fish to fry.
Speaker 3 (18:07):
Yes, the skin issues were definitely not on like the
top of the list to deal with her appearance of
her skin and the different spots that she has were
a drop in the bucket compared to like the joint
pain and the discomfort that she had on daily basis.
Speaker 5 (18:26):
In the moment, it was difficult to decipher, but Lauren's
symptomatic picture was coming into focus. So at that point
you must have been so frustrated, what's happening now in
terms of your physical symptoms?
Speaker 2 (18:40):
In my physical symptoms, I was beyond frustrated. I was
at that point where this was happening much more frequently,
where I could not walk. I was an excruciating pain
waking up in the middle of the night, even like
laying in bed if your feet are covered and like
the foot of your bed tucked in, and even that
(19:01):
pressure of trying to bend my toes if I was
laying on my back would wake me up with throbbing
pain in the middle of the night.
Speaker 5 (19:11):
What would you say was the psychological impact?
Speaker 3 (19:16):
It was scary as almost scarier than the injury. The
physical limitations that she had that we watched all the time,
But like when you see someone mentally like slowly being
broken down, it's a hard thing now to watch and
wonder where's this going? You must have also helpless, Yeah,
(19:37):
it's difficult.
Speaker 5 (19:38):
You mentioned at one point she was even on crutches
without answers, what do you think was kind of rock
bottom in terms of her symptoms.
Speaker 3 (19:50):
Be honest, like when she did have to actually use
crutches and couldn't even get inside from outside without taking
five minutes, reminding me of my grandmother when she lived
with us and she was ninety and had a walker,
and it was just a very snail type pace to
get it anywhere. But then you know, you look at
her and it's like you're not my grandma. You know,
(20:11):
you should be dancing down the street as it used
to be, but it's just difficult to see it happen.
Speaker 5 (20:23):
It was all so difficult and frustrating fighting the unknown.
Lauren's progressing physical limitations were increasingly interfering with her personal
and professional life.
Speaker 2 (20:33):
I figured, well, if my pediatrist was right about the psoriasis,
then it's definitely worth at least taking a look into
the roomatologist, mostly because looking back at the patterns, looking
back at the history, this pattern had been going on for,
like I said, years and years and years.
Speaker 5 (20:55):
Knowing Lauren's family had a history of autoimmune conditions, the
doctor ran every blood tests they could in hopes of
finding a clue as to what was causing Lauren so
much pain, but nothing came back conclusive enough to narrow
down the root cause.
Speaker 2 (21:10):
So here I was not being able to sleep, not
being able to do anything, and I looked at this
roomatologist and I'm like, what can you do for me?
We tried an oral immunosuppress at first, and that was
really tough for me.
Speaker 1 (21:23):
It did not work.
Speaker 2 (21:24):
It made me feel sick and also gave me pretty
significant depression.
Speaker 5 (21:29):
Matt, did you have fears that something much worse was
going on?
Speaker 3 (21:34):
We did when we got deeper into it, like what
could this be? Is this like a lifelong thing? Then
you start looking into all these possibilities, and you know
scary when you start looking up stuff on the internet
because you normally don't find anything good.
Speaker 5 (21:48):
Lauren felt everything was slipping away from her, her family,
her passion, herself, all because this unexplained disease was overwhelming
her system and she had yet to find a doctor
who could see the bigger picture. Do you remember just
feeling so desperate that you didn't think you could handle.
Speaker 1 (22:10):
It one hundred percent?
Speaker 2 (22:12):
I remember it was with that rheumatologist that I went
in there in tears, on crutches, unable to live my
life the way that I wanted to live at that
point was twenty six, twenty seven years old, and I
was not getting answers.
Speaker 5 (22:30):
We'll be right back with Symptomatic, a medical mystery podcast.
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Speaker 5 (23:40):
Now back to Symptomatic a medical mystery podcast. Lauren was
at the end of her rope. She was no longer
able to dance or play with her two young sons
in the way she had always imagined. Movements and stretches
which had once been part of her normal warm up
routine were now far out of her reach. Her feet
(24:04):
and lower legs were stiffening, to the point where she
had to use crutches to walk. How would you describe
that kind of pain to someone.
Speaker 2 (24:16):
I always say it's like a throbbing pain in the feet.
A lot of times it like I'd get out of
bed and I would feel like I was walking on bruises.
The stiffness is similar to like if you've broken or
sprained like a finger, and you're trying to move it. It's
almost like when you're bending something that is not supposed
to go that way.
Speaker 3 (24:36):
What made her pursue more answers even harder after she
kind of got like a generic answer was that she
got put back in crutches, because, like I said, it
would come and go and wave. Some days would be okay,
or a week would be okay, and then all of
a sudden, for no reason, it would get terrible again.
She wouldn't be able to walk. She wanted answers, she
(24:56):
desperately needed them, and the doctor told me there was
nothing I could do other than wait for it to pass.
Speaker 5 (25:04):
Lauren needed a practitioner who would be her partner in
this battle to help her break out of the pattern,
listen to her story, and recommend new methods to help
find the cause of her symptoms.
Speaker 2 (25:17):
So I do remember like a cry out that I
put on Facebook and just said, I need a rheumatologist
that could help me. Can anybody give me a recommendation?
And it was a neighbor of mine who recommended me
to doctor Aaron Arnold, who I mean has taken the
best best care of me. I'm so happy to have
(25:39):
been introduced to her.
Speaker 5 (25:41):
What was so different about doctor Arnold's approach.
Speaker 2 (25:45):
She was willing to listen, she felt for me. She
also was to me way more thorough than the other
rooumatologists that I was saying before. She was looking at
different types of blood work she put in for work
they call a vectors screening, which is a more in
depth evaluation of your inflammation.
Speaker 1 (26:05):
And my vectress tests came back off.
Speaker 2 (26:08):
The charts to the point where she's like, I don't
even know how you drove yourself here, which was so
validating to me because I'm like everyone else thinks I'm
crazy because the typical inflammation markers that most people look
at are not worth shattering. They're not alarming, They're maybe
a little bit on the high side of what they
call normal.
Speaker 5 (26:29):
Doctor Arnold is a Chicago based doctor who is inspired
to become a rheumatologist after seeing her father's passion for
the field, the allure for the detective work involved, and
the impact the long term relationships can have on her patients.
Cemented this as her specialty.
Speaker 4 (26:46):
I will tell you that as special as Lauren is,
her really her story is not so unusual or unique.
So if I think about my engagement with her, it's
a similar engagement I've had with a lot of my patients,
many of them women, though, because I do think it's
still as hard for women who are in pain to
(27:08):
really be heard, even by other female doctors.
Speaker 1 (27:11):
Right.
Speaker 4 (27:12):
So when I remember meeting her, part of the impression
I got when I first met with her was the
I don't know if trauma is the right word, but
the energy that she had was because I think she
wasn't being heard.
Speaker 2 (27:28):
Doctor Arnold made me feel like I was not crazy,
but she also made me feel like there are so
many options, and she also made me feel like we
were not going to stop trying until we could find
an option that.
Speaker 5 (27:42):
Worked, an approach that would ultimately lead to some answers
in Lauren's medical mystery.
Speaker 4 (27:49):
So one of the first things we wanted to try
to differentiate was is this an inflammatory disease that was
causing her pain? And our suspicion was very high because
she's young.
Speaker 5 (27:59):
What were the possible diagnoses running through your mind when
you started seeing Lauren.
Speaker 4 (28:04):
So sometimes you can see with people, for example, with
severe endocrne disorders, where maybe they have like hyperparathyroidism, which
is a hormone that the glands sit near the thyroid,
but if the levels get really high, they can actively
go to break down the bone and that can cause pain.
So that would have been one of.
Speaker 1 (28:21):
The things we would look for.
Speaker 4 (28:22):
Her history wasn't significant for something like a cancer, but
we look for evidence of that and some of the
standard blood tests that we draw, right, so those would
be other things that would be ruling out. We'd be
making sure that she didn't have some type of a
systemic infection that could be causing her symptoms.
Speaker 2 (28:41):
I had no idea that one thing was linked to
another thing, which was linked to the other thing. Who
would have thought that my sinuses had anything to do
with the excruciating foot pain that I was experiencing, you know,
years later, and that is something that I was never
able to link together. So, you know, looking at that,
(29:01):
looking at my history, looking at all of my symptoms.
Even though my genetic marker was negative, she said, not
everybody who has this condition has a genetic marker for it.
So sometimes it's almost just as important or even more
important to look at the symptoms and to be able
to really evaluate the progression of how things have moved along.
(29:23):
And she diagnosed me with siatic arthritis.
Speaker 5 (29:26):
Wow, and you're twenty eight years old at this point,
twenty eight years old. So Matt, take me to the diagnosis.
You know, when you first heard those two words soriatic arthritis.
Speaker 3 (29:40):
Part of it was a relief because we had a
diagnosis and there's treatment. But the other side of it
is like, this is not technically curable, like entirely, there's
no like magic medication that you take and it's like
just gone, in a week, you're done, You're all better now.
Speaker 5 (30:00):
So you did mention that you had to confirm that
there was inflammation, But in terms of a gold standard
for soriatic arthritis, is there a specific test that you use.
Speaker 4 (30:12):
In fact, there are no tests to make the diagnosis
of soriatic arthritis. So our blood tests are helpful when
they're helpful, but most of the time it's really history
and physical exam and response to interventions, and this is
where that long term relationship really starts to develop, and
seeing people over time and how things change. But there
(30:33):
is not a single blood test to make the diagnosis
of soriatic earthritis. Well, often if we're lucky enough see
something like psoriasis or a history of psiasis, we'll see
targeted joints that will typically think about in either distal psoriasis,
like specific distributions in the hands, for example, are larger joints.
Speaker 1 (30:54):
So it is always.
Speaker 4 (30:55):
Easier to make a diagnosis of soriatic arthritis when patients
have psoriasis. But there is a large enough number of
patients who don't develop psoriasis before their arthritis, but actually
after their arthritis.
Speaker 5 (31:07):
The symptoms that have been shrugged off throughout Lauren's life
were actually little clues all adding up to give doctor
Arnold the full picture of what had been plaguing Lauren
for fifteen years, soriatic arthritis. It sounds like the symptoms
can really run the gamut. That said, are there a
(31:29):
list of most common symptoms if you.
Speaker 4 (31:33):
Were to google soriatic earthrtis? I think that for sure,
people would talk about swelling in stiffness in specific joints
in the hands rather than the knuckle joint. People would
talk about mostly skin psoriasis in association with siatic earthritis.
People would talk about morning stiffness that's greater than thirty minutes.
(31:55):
So if you're not twenty five anymore, when you get
out of bed in the morning, you might feel a
little bit stiff. As you make your way to the bathroom,
you notice that you loosen up. People with sooriatic arthritis,
that's just ongoing. It could be for hours.
Speaker 5 (32:08):
What are some common misconceptions that people have about arthritis.
Speaker 4 (32:13):
I think it's really important for people to understand that
there are like hundreds of kinds of arthritis. We simplify things, right,
but there are all different kinds of arthritis, and so
I think the misconception is that this is not just
an illness that affects your joints. So I'm going to
generalize the thing that is a rheumatologist I worry the
(32:36):
most about when I meet patients with inflammatory arthritis are
actually not their joints. I worry about their heart I
worry about their risk of cancer, because we know that
patients with inflammatory disease that is uncontrolled have a higher
incidence of heart attacks, especially true in our sooriatic arthritis patients,
and higher incidents of some lymphomas and cancers. And so
(32:59):
I think the misconception is, oh, that it's just my joint.
But when I say to people, the likelihood of your
rheumatoid arthritis have left untreated causing a heart attack is high,
and that what killed patients with rheumatoid arthritis and soriatic arthritis.
Speaker 1 (33:14):
Is heart disease.
Speaker 5 (33:16):
What did that diagnosis mean for you?
Speaker 2 (33:19):
It meant a lot of things. It was validating to
know that I wasn't crazy, that something was really wrong,
and so there was a piece of me that felt
relief that at least now we know what it is
and now.
Speaker 1 (33:30):
We can hopefully treat it.
Speaker 2 (33:32):
It was scary for me also really hard because I
knew a lot was going to have to change my lifestyle.
I was scared was I ever going to be able
to go dance again or exercise again?
Speaker 1 (33:43):
What was working out going to look like for me?
Speaker 2 (33:45):
I was in a full time coach where running on
the treadmill was part of my job, and.
Speaker 1 (33:51):
I didn't know that I was going to be able
to do that again.
Speaker 3 (33:55):
It gave her a direction of like where to like
research so she can figure out how she wants to
pursue moving forward, and I mean, you get some hope.
She's good at finding the good and things been like, Okay,
here's a new adventure or new project to try and
work towards and you know, make things better.
Speaker 5 (34:18):
It just occurred to me that really you do almost
need to embrace the mindset of an athlete with these
chronic illnesses, because it's a marathon, it's not a race.
Speaker 4 (34:29):
And you have to focus on the things that you
can have control over, right, And I think it's instinctual
for all of us to number one, know what caused this,
which often we have no idea, and where's it headed,
what's the prognosis which a lot of the time we
also have no definitive idea, right, and that's incredibly unsettling.
So you have to then be able to give over
(34:51):
some of that wanting to control the outcome, to kind
of just go for the ride right, to jump forward,
and to let's just keep moving forward, is what I
say to patients.
Speaker 2 (35:02):
In some ways, I feel like it's given me the
gift of being more in tune with my body because
for so long I ignored so many things. It has
allowed me to identify triggers and things that trigger these
episodes and inflammation. I can't say that I'm flare up free,
I can't say that I'm in remission, but I can
(35:23):
tell you that I can understand that my body can
only tolerate so much exercise.
Speaker 5 (35:29):
As Matt lovingly described her, Lauren is the eternal optimist.
Despite having to give up dance and accept the physical
limitations that can accompany her flare ups, Lauren remains dedicated
to moving forward and motivating others. What are you most
proud of your wife for?
Speaker 3 (35:46):
I'd say I'm just most proud for her resilience and
trying to like not let her condition take over. She
always is trying to better herself physically and mentally. She's
always pushing to find the brighter side of things and
not let anything get her down. So it's just nice
(36:08):
to see pushes me too.
Speaker 2 (36:11):
All that passion, all of the love I had for dance,
I mean, it's all still there, but I have been
able to redirect that passion and fire to help others
that are like myself that are going through dealing with inflammation,
weight loss, resistance, feeling exhausted or fatigued, and all of
(36:31):
those things. And so I took the majority of that
energy and really put it into studying and understanding inflammation
at another level, so I could help others work through
exactly what I work through and understand their bodies the
way that I'm able to understand mine.
Speaker 5 (36:47):
I love that it's the same kind of imparting of empowerment.
It's just knowledge.
Speaker 2 (36:52):
Now exactly, and a knowledge that I so personally can
relate to, right, because I know those feelings of frustration,
and I know those feelings of you know, when you're
just you're feeling defeated, when you're dealing with something along
the lines of battling, whether it's sooriatic arthritis or another
(37:13):
inflammatory condition, right, And I want to help others be
able to beat it the same way that I was.
And once you start to identify and understand what your
body needs. What your body responds to is a life
that is waiting to be lived by you.
Speaker 5 (37:32):
To find out more on soriatic arthritis, you can check
out the Arthritis Foundation's website at Arthritis dot org.
Speaker 2 (37:42):
My name is Lauren shol I pushed through pain for
fifteen years before being diagnosed with sooriatic arthritis at the
age of twenty eight.
Speaker 5 (37:56):
Since this is the final episode of Symptomatic Season two,
we want to say a huge thank you to all
of our listeners. We truly value the opportunity to bring
these episodes to life. We'll be back soon with more.
Until then, if there's a story you want to hear
us cover, you can get in touch with us by
emailing Symptomatic at iHeartMedia dot com. And please don't forget
(38:17):
to rate and review Symptomatic wherever you get your podcasts.
Until next time, we hope you stay well. Symptomatic a
medical mystery podcast is a production of Ruby Studio from iHeartMedia.
Our show is hosted by me Lauren breg Pacheco. Executive
producers are Matt Romano and myself. Our ep of post
(38:38):
production is James Foster. Our producers are Sierra Kaiser and
John Irwin and this episode was researched by Diana Davis.
Speaker 8 (38:54):
What are real people with storyatic arthritis saying about cocentics?
Speaker 3 (38:58):
I had to do something cocentics. I moved better because
of concentics.
Speaker 8 (39:03):
Cocentic sec ukenyumab is for adults with active storiatic arthritis
and is given as a one hundred and fifty milligram dose.
Don't use if you're allergic to cocentics. Before starting, get
checked for TB serious allergic reactions, severe skin reactions that
look like eczema, and an increased risk of infections. Some
fatal have occurred. Cocentics may lower ability to fight infections,
so tell your doctor if you have an infection or
symptoms like fevers, sweats, chills, muscleleggs, or cough, how to
(39:27):
vaccine or plan to or if ibed symptoms develop or worsen.
Learn more at cocentics dot com or one eight four
four cocentics. Don't wait. Ask your doctor about cocentics
My entire foot.
Speaker 2 (00:05):
Around the joints of my toes, they were like red
and inflamed and swollen.
Speaker 3 (00:14):
She reminded me of my grandmother when she lived with us,
and she was ninety and had a walker. But then
I look at her and it's like, you're not my grandma.
You know, you should be dancing down the street as
it used to be.
Speaker 4 (00:26):
There are no tests to make the diagnosis, and where's
it headed. A lot of the time, we also have
no definitive idea, and that's incredibly unsettling.
Speaker 2 (00:36):
I physically took my toe and tried to bend it,
and I could not do it.
Speaker 5 (00:48):
How terrifying would it be to fight an unknown enemy,
one you didn't recognize and didn't see coming. What if
that enemy was coming from within a disease that even
doctors couldn't identify. Nearly half of all Americans suffer from
some chronic illness, and many struggle for an accurate diagnosis.
(01:12):
These are their stories. A Lauren bred Pacheco, and this
is symptomatic. As a formally trained dancer, Lauren's biggest strength
(01:35):
has always been finding connection through movement. Dance was a
place for seeking calm and creativity as well as a
way to push herself physically and mentally. Now a mother
of two sons, Lauren may not dance as much as
she used to, but she's found ways to apply that
same passion to all aspects of her life as a wife, mother,
(01:56):
and business owner.
Speaker 2 (01:59):
I'm a dancer, a former dancer. I love dancing. I
don't do it professionally anymore, but it is something that
I will always have in my heart. I am a mom.
I'm a family oriented person. My favorite thing to do
on the weekends is watch my son play baseball and
basketball and do active things with my kids.
Speaker 1 (02:17):
I'm extremely active.
Speaker 5 (02:20):
And you're a boy mom, so that's a good thing. Yes.
Speaker 1 (02:23):
Yes. My thing is fitness and nutrition. I run a business.
Speaker 2 (02:27):
I'm a full time fitness and nutrition coach and we
help clients all over the United States and Canada.
Speaker 5 (02:35):
Being the dance was such a driving force for most
of her life, it seems only fitting that she met
her now husband, Matt while country line dancing.
Speaker 3 (02:44):
She's very outgoing, very helpful. She loves to help others
when she can, so leave it to me to meet
the line dance instructor at the time, and I'm the
guy with the two left feet that can't soon to
figure it out, but very good at it. And then
there's the fitness side of it, where she's always been
(03:05):
into eating rite and trying to improve herself on a
personal level.
Speaker 2 (03:11):
I mean, I eat, sleep, and breathe dance. You know,
I'd close my eyes at night and do dance routines
in my head.
Speaker 3 (03:18):
And at the beginning of a relationship, she was very
big in the dance industry. She had a lot of
choreographing and she also did a lot of performing. She
was in a bunch of different dance backgrounds. Ballroom to
hip hop is where she started, and she loved it.
Speaker 2 (03:36):
It just gave me a place to go when I
needed it. I'm an only child. I didn't have people
to play with, so it just gave me something to
be able to be my sounding board.
Speaker 1 (03:47):
So it became a lot to me.
Speaker 5 (03:50):
Dance was more than just an outlet for Lauren. It
was a way of life. She cherished the feeling of
freedom and expression that dance provided her. But you know,
an insidious illness would soon begin to erode the ability
she had for the things she loved most. So take
me back to the first time you remember seeing symptoms,
(04:14):
physical symptoms, that anything was a mess, and I think
it was skin correct.
Speaker 2 (04:20):
Yes, I was young when I started having skin rashes.
It was before high school that I started noticing these
patches of skin. And I mean I remember scratching them
until they would bleed. They were so itchy and uncomfortable.
They were my elbows, my shins, my ankles. So it's
(04:41):
not like it was on my face or anything like
that that would really make me super self conscious about it.
But it still didn't look pretty right. So that's when
I went to a dermatologist, and the dermatologist diagnosed me
with what they called at that point, dermatitis. They just said,
here's Cortizon cream. This is what we can give you.
But getting through high school, through college, even through getting married,
(05:06):
I always had patches somewhere. They were always a part
of me.
Speaker 5 (05:12):
Even as Lauren continued to excel at dance at increasingly
advanced levels, her skin patches became unrelenting. Having the dermatitis
diagnosis didn't seem to matter much because none of the
topical treatments provided any real relief. As Lauren pursued her
dreams of becoming a professional dancer, she simply pushed her
(05:32):
symptoms aside, where they remained unresolved into her college years.
So what happens when you got to college? How do
your symptoms morph? How do they evolve?
Speaker 2 (05:41):
You know, I went to college in a very rural area.
I was at Western Illinois University. It was cornfields, and
you know, my environment changed.
Speaker 1 (05:51):
I have bad allergies.
Speaker 2 (05:53):
Those were definitely affected with moving into a different area,
different seasons, and my my skin did actually get worse
when I got to college.
Speaker 5 (06:03):
Her husband, Matt, remembers noticing the inflamed areas of skin
near her ankles.
Speaker 3 (06:09):
She started seeing like skin issues. I used to give
her a hard time. I'm like, stop touching that, stop scratching,
and she's like I'm not, and I'm like, oh, it
looks like you are.
Speaker 2 (06:18):
I did also start having issues where I couldn't do
the things that I like to do as much anymore.
So I started to feel like some stiffness in my legs,
in my feet, the bottoms of my feet would hurt
when i'd go run. I was dancing in college, and
so there were times where I would just have to
(06:39):
take a break from practice because I just my body
didn't feel good.
Speaker 5 (06:44):
A college level competitive dancer starting to see her body
wear down has to be a little unsettling.
Speaker 2 (06:50):
Yeah, So we would practice multiple times a week. This
might be popping up for me, you know, once a month,
where it wasn't at that point in time affecting my
day to day or week to week. But it was
a pattern that maybe as an eighteen year old, nineteen
year old college girl, I just wasn't quite aware of
(07:11):
the frequency of which it was happening, in the patterns
that I was getting quote unquote worse.
Speaker 5 (07:18):
That's so insidious too, because it's so easy to say,
I'm away from home for the first time, I'm eating
different foods, I'm partying a little bit more than I
could with parental supervision.
Speaker 1 (07:30):
Correct.
Speaker 2 (07:31):
I had no idea that anything else was really brewing
or anything else was going on for me. The younger
I was, the less I was really in tune with,
you know, like, oh, I'm fine. You know, that's like
what a teenager says, right, I'm fine, it'll go away,
I'll be better tomorrow.
Speaker 1 (07:46):
And that's kind of where I went with it.
Speaker 5 (07:49):
The stiffening muscles and sensitive skin continued to linger, draining
Lauren of the strength that used to be so readily
available to her. She used to have no problem getting
up the energy to juggle studying and dancing, but now
everything was beginning to feel more and more like a chore.
Speaker 2 (08:07):
It's like if you have a really bad head cold
and you just feel completely bogged down by it.
Speaker 1 (08:12):
It was this fatigue that just wouldn't go away.
Speaker 2 (08:16):
I came home from college at one point and got
cat scans of my sinuses to see and yeah, my
sinuses were extremely inflamed. They told me that it was
I had the option of getting sinus surgery, or I
could get put on different allergy medication or use nasal
sprays like that was the extent of what they thought.
Speaker 5 (08:36):
And that must have been difficult psychologically for you too,
because you've already said that dance in particular, was this outlet,
this escape, and now it's getting more difficult to really
enjoy that outlet and escape.
Speaker 2 (08:52):
Yes, But I think also with that athlete mentality, my
heart was you need to push harder, you need to
try harder, you need to show up, you need to
do the things. You need to keep working. So it
wasn't even like, oh, I'm not really enjoying it.
Speaker 1 (09:06):
Anymore. It's that addiction.
Speaker 2 (09:07):
It's at hunger where you want to get better, you
want to keep working harder, And that's where all of
my energy was focused on, which sometimes meant ignoring the
things that I probably shouldn't have ignored at that time.
Speaker 5 (09:22):
During her last year of college, Lauren ended up contracting
MRSA and a serious staff infection, which required multiple procedures
to clear out of her system. This health setback forced
Lauren to stop dancing and to move back home to
properly recuperate. This abrupt transition from a vibrant dance field
routine to a more sedentary lifestyle took its toll on
(09:45):
her body, but after she'd recovered, she was determined to
get back into a fitness routine. And what better workout
partner than her future husband.
Speaker 2 (09:54):
I said to him, my foot feels funny moving through
these workouts. He says, maybe you should take a step back,
and I'm like no, I'm like, I'm really getting results.
Speaker 1 (10:02):
I can work through it.
Speaker 2 (10:04):
And there comes my elite athlete mentality, right, I can
work through it.
Speaker 1 (10:09):
I can work through it.
Speaker 5 (10:10):
What did you initially attribute to that to? I mean,
were you ever on point? Did you do ballet. Were
you thinking that it was just like a leftover injury.
I figured that it was just too much wear and tear.
I'd rest for a few days, A month would go
by and it would come back. A month or two
would go by and it would come back. But I
(10:30):
always knew that if it came back, I'm like, that's
my warning sign that I just need to take a
few days off and I'll be fine in no time.
So I did let that go for years. Lauren and
Matt married and soon after started their own family, welcoming
two beautiful sons, but the journey through pregnancy and childbirth
two times over exasperated Lauren's symptoms. With her focus on
(10:52):
all the ups and downs of being a new parent,
she continued to push her pain aside, not realizing a
larger picture was starting to take shape. It wasn't until
the signs became obviously beyond the postpartum norm that Lauren
and Matt knew they had to take action.
Speaker 2 (11:09):
Finally, it got to a point where I was doing
laundry and like He's like, you are limping to the
laundry machine, Like there is no.
Speaker 1 (11:17):
Way that you are actually okay.
Speaker 3 (11:19):
She starts limping, and it's like it's just weird. All
of a sudden, you're in your mid twenties and then
you start limping and you're like, what's going on here?
Did you twist your ankle? Did you do anything? And
it just kept seeing a trend of like different body
aches and pains, and sometimes it switched from one side
of her body to the other. It was really hard
(11:40):
to understand.
Speaker 2 (11:42):
My entire foot around the joints of my toes they
were like red and inflamed and swollen, and he's like,
you need to put your feet up. Something is not right,
And I thought, well, maybe I hurt myself. Normally, when
you hurt yourself, you could like pinpoint the time where you,
(12:02):
you know, broke your foot or broke a toe.
Speaker 3 (12:06):
We weren't sure what it was. We just thought maybe
it was after having a child. Certain things happened to
you that I don't know, either change or take a
long time to go back to the way they were.
Speaker 2 (12:17):
We had kids, and right around the time I had
my second son, I was still avidly working out and training,
and I got to a point where I could not
do a lunge because my toes would not flex that
was where I was, and I got to a point
where I physically took my toe.
Speaker 1 (12:40):
And tried to bend it, and I could not do it.
Speaker 5 (12:45):
So it was like it was a fused, solid bone
as opposed to small bones that move in conjunction with
one another.
Speaker 1 (12:52):
Correct.
Speaker 2 (12:54):
It was like imagine something like completely rusted and you
trying to move it like there was no give there.
Speaker 1 (13:01):
It was stuck.
Speaker 5 (13:02):
You must have felt so betrayed by your own body.
Speaker 1 (13:06):
Broken, completely broken.
Speaker 5 (13:10):
Until now her body had been her instrument, her outlet,
her means of expression, but that was being quickly ripped
away from her by these unexplained symptoms. Balancing the demands
of her two greatest loves, dance and family, became an
ongoing struggle.
Speaker 3 (13:26):
I mean, Lauren's always been really good at pushing through
and fighting for what she wants. It definitely gotten a
way of her day to day activities, and like there's
certain things like we didn't go to the zoo with
the kids or go to certain things that you're going
to have to be on your feet a lot, because
she knew she wouldn't be able to handle it or
she'd be paying for it for days afterwards.
Speaker 1 (13:49):
So I left my dance career. It was an impossible
choice for me to make.
Speaker 2 (13:55):
I think, you know, to be a professional dancer takes
an extreme amount of work and perseverance and dedication and
sacrifice to get to that level, which is where I
was at.
Speaker 1 (14:08):
It was like crashing into a brick wall.
Speaker 5 (14:11):
Lauren explained, dances almost her happy place, a safe place
where she could just lose herself. What was it like
to see her mobility challenged, to go from forget about dancing,
not being able to walk? What was that like to witness?
Speaker 3 (14:30):
It was hard to watch. She struggled with it a lot,
just because she had so much creativity that didn't feel
like work, because she loved what she was doing. Was
hard to see. You know, she had multiple occasions where
she would get down on herself because she just couldn't
do it, and she couldn't understand why.
Speaker 1 (14:49):
You have all of this momentum driving you forward.
Speaker 2 (14:52):
You're like, you're driven to get to where you're going,
and then you come to this halting stop and you
can only push through it so much before it just
starts to break you down. Than if you know, boys
when they're toddlers, you are doing nothing but trying to
chase them down as soon as they get they get
move in. It is just a constant hustle and it
(15:13):
was tough. It was really tough. So I had nothing
other to say than I can't play with my kid
on the playground, but I can show up to work
and dance with my dance partner. There's something that didn't
seem right to me about that picture, and I had
to at that point give or take something.
Speaker 1 (15:28):
And it was always going to be family over everything.
Speaker 5 (15:32):
Despite setting dance aside, Lauren didn't lose her passion for
improving lives through fitness. She redirected that enthusiasm into a
career in personal training, providing empowerment in a much less
taxing way. But with the tightness in her feet worsening
and none of her at home treatments working, she decided
to go to a pediatrist in search of more effective solutions.
Speaker 1 (15:57):
I thought I broke my toe.
Speaker 2 (15:58):
It was on one foot specifically at that point, and
I said to my husband, I said, something's wrong. I
don't remember breaking my foot, but it is bad to
the point where I cannot move.
Speaker 1 (16:11):
We went into the pediatrist. I got X rays.
Speaker 2 (16:13):
He's like, well, your to's not broken, but you're not
even thirty years old, and we're seeing like advanced arthritis
patterns in your joints. So that was kind of the
first time. I was like, what do you mean I
have arthritis in my feet?
Speaker 3 (16:31):
And we're like, well, she was a dancer, so I
guess that could be possibility. That also puts another curveball
in the situation of like, when we're looking at her feet,
is this like a byproduct of all the years of
dance or is this something new?
Speaker 5 (16:46):
Wow, I'm trying to wrap my head around that. So
you are a young mother, very active, very health oriented,
and suddenly you're in a position where you're losing mobility
entirely of one foot.
Speaker 1 (17:04):
Correct.
Speaker 2 (17:05):
What was going through my head was he's wrong, Like,
there's no way I eat healthy, I am active, I exercise,
I do all the things that you're supposed to do,
and I'm only twenty six. There's just no way that
it's a possibility that I have arthritis.
Speaker 5 (17:22):
While the arthritis diagnosis didn't sit well with Lauren, it
would lead to another clue. The pediatrist was examining her
feet and noticed the rough skin patches on her ankles
and knees. Though Lauren had been previously diagnosed with dermatitis,
this looked different.
Speaker 2 (17:39):
He said, I highly recommend that you go to you
back to your dermatologists and ask them to buyopsy these
skin patches to see if it is psoriasis. And he said,
and if it is, your next visit is going to
be to a rheumatologist. So the dermatologist they did find
that it is psoriasis.
Speaker 5 (18:01):
That must have been for both of you, like, who
cares about the psariasis? Right, We've got bigger fish to fry.
Speaker 3 (18:07):
Yes, the skin issues were definitely not on like the
top of the list to deal with her appearance of
her skin and the different spots that she has were
a drop in the bucket compared to like the joint
pain and the discomfort that she had on daily basis.
Speaker 5 (18:26):
In the moment, it was difficult to decipher, but Lauren's
symptomatic picture was coming into focus. So at that point
you must have been so frustrated, what's happening now in
terms of your physical symptoms?
Speaker 2 (18:40):
In my physical symptoms, I was beyond frustrated. I was
at that point where this was happening much more frequently,
where I could not walk. I was an excruciating pain
waking up in the middle of the night, even like
laying in bed if your feet are covered and like
the foot of your bed tucked in, and even that
(19:01):
pressure of trying to bend my toes if I was
laying on my back would wake me up with throbbing
pain in the middle of the night.
Speaker 5 (19:11):
What would you say was the psychological impact?
Speaker 3 (19:16):
It was scary as almost scarier than the injury. The
physical limitations that she had that we watched all the time,
But like when you see someone mentally like slowly being
broken down, it's a hard thing now to watch and
wonder where's this going? You must have also helpless, Yeah,
(19:37):
it's difficult.
Speaker 5 (19:38):
You mentioned at one point she was even on crutches
without answers, what do you think was kind of rock
bottom in terms of her symptoms.
Speaker 3 (19:50):
Be honest, like when she did have to actually use
crutches and couldn't even get inside from outside without taking
five minutes, reminding me of my grandmother when she lived
with us and she was ninety and had a walker,
and it was just a very snail type pace to
get it anywhere. But then you know, you look at
her and it's like you're not my grandma. You know,
(20:11):
you should be dancing down the street as it used
to be, but it's just difficult to see it happen.
Speaker 5 (20:23):
It was all so difficult and frustrating fighting the unknown.
Lauren's progressing physical limitations were increasingly interfering with her personal
and professional life.
Speaker 2 (20:33):
I figured, well, if my pediatrist was right about the psoriasis,
then it's definitely worth at least taking a look into
the roomatologist, mostly because looking back at the patterns, looking
back at the history, this pattern had been going on for,
like I said, years and years and years.
Speaker 5 (20:55):
Knowing Lauren's family had a history of autoimmune conditions, the
doctor ran every blood tests they could in hopes of
finding a clue as to what was causing Lauren so
much pain, but nothing came back conclusive enough to narrow
down the root cause.
Speaker 2 (21:10):
So here I was not being able to sleep, not
being able to do anything, and I looked at this
roomatologist and I'm like, what can you do for me?
We tried an oral immunosuppress at first, and that was
really tough for me.
Speaker 1 (21:23):
It did not work.
Speaker 2 (21:24):
It made me feel sick and also gave me pretty
significant depression.
Speaker 5 (21:29):
Matt, did you have fears that something much worse was
going on?
Speaker 3 (21:34):
We did when we got deeper into it, like what
could this be? Is this like a lifelong thing? Then
you start looking into all these possibilities, and you know
scary when you start looking up stuff on the internet
because you normally don't find anything good.
Speaker 5 (21:48):
Lauren felt everything was slipping away from her, her family,
her passion, herself, all because this unexplained disease was overwhelming
her system and she had yet to find a doctor
who could see the bigger picture. Do you remember just
feeling so desperate that you didn't think you could handle.
Speaker 1 (22:10):
It one hundred percent?
Speaker 2 (22:12):
I remember it was with that rheumatologist that I went
in there in tears, on crutches, unable to live my
life the way that I wanted to live at that
point was twenty six, twenty seven years old, and I
was not getting answers.
Speaker 5 (22:30):
We'll be right back with Symptomatic, a medical mystery podcast.
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Speaker 5 (23:40):
Now back to Symptomatic a medical mystery podcast. Lauren was
at the end of her rope. She was no longer
able to dance or play with her two young sons
in the way she had always imagined. Movements and stretches
which had once been part of her normal warm up
routine were now far out of her reach. Her feet
(24:04):
and lower legs were stiffening, to the point where she
had to use crutches to walk. How would you describe
that kind of pain to someone.
Speaker 2 (24:16):
I always say it's like a throbbing pain in the feet.
A lot of times it like I'd get out of
bed and I would feel like I was walking on bruises.
The stiffness is similar to like if you've broken or
sprained like a finger, and you're trying to move it. It's
almost like when you're bending something that is not supposed
to go that way.
Speaker 3 (24:36):
What made her pursue more answers even harder after she
kind of got like a generic answer was that she
got put back in crutches, because, like I said, it
would come and go and wave. Some days would be okay,
or a week would be okay, and then all of
a sudden, for no reason, it would get terrible again.
She wouldn't be able to walk. She wanted answers, she
(24:56):
desperately needed them, and the doctor told me there was
nothing I could do other than wait for it to pass.
Speaker 5 (25:04):
Lauren needed a practitioner who would be her partner in
this battle to help her break out of the pattern,
listen to her story, and recommend new methods to help
find the cause of her symptoms.
Speaker 2 (25:17):
So I do remember like a cry out that I
put on Facebook and just said, I need a rheumatologist
that could help me. Can anybody give me a recommendation?
And it was a neighbor of mine who recommended me
to doctor Aaron Arnold, who I mean has taken the
best best care of me. I'm so happy to have
(25:39):
been introduced to her.
Speaker 5 (25:41):
What was so different about doctor Arnold's approach.
Speaker 2 (25:45):
She was willing to listen, she felt for me. She
also was to me way more thorough than the other
rooumatologists that I was saying before. She was looking at
different types of blood work she put in for work
they call a vectors screening, which is a more in
depth evaluation of your inflammation.
Speaker 1 (26:05):
And my vectress tests came back off.
Speaker 2 (26:08):
The charts to the point where she's like, I don't
even know how you drove yourself here, which was so
validating to me because I'm like everyone else thinks I'm
crazy because the typical inflammation markers that most people look
at are not worth shattering. They're not alarming, They're maybe
a little bit on the high side of what they
call normal.
Speaker 5 (26:29):
Doctor Arnold is a Chicago based doctor who is inspired
to become a rheumatologist after seeing her father's passion for
the field, the allure for the detective work involved, and
the impact the long term relationships can have on her patients.
Cemented this as her specialty.
Speaker 4 (26:46):
I will tell you that as special as Lauren is,
her really her story is not so unusual or unique.
So if I think about my engagement with her, it's
a similar engagement I've had with a lot of my patients,
many of them women, though, because I do think it's
still as hard for women who are in pain to
(27:08):
really be heard, even by other female doctors.
Speaker 1 (27:11):
Right.
Speaker 4 (27:12):
So when I remember meeting her, part of the impression
I got when I first met with her was the
I don't know if trauma is the right word, but
the energy that she had was because I think she
wasn't being heard.
Speaker 2 (27:28):
Doctor Arnold made me feel like I was not crazy,
but she also made me feel like there are so
many options, and she also made me feel like we
were not going to stop trying until we could find
an option that.
Speaker 5 (27:42):
Worked, an approach that would ultimately lead to some answers
in Lauren's medical mystery.
Speaker 4 (27:49):
So one of the first things we wanted to try
to differentiate was is this an inflammatory disease that was
causing her pain? And our suspicion was very high because
she's young.
Speaker 5 (27:59):
What were the possible diagnoses running through your mind when
you started seeing Lauren.
Speaker 4 (28:04):
So sometimes you can see with people, for example, with
severe endocrne disorders, where maybe they have like hyperparathyroidism, which
is a hormone that the glands sit near the thyroid,
but if the levels get really high, they can actively
go to break down the bone and that can cause pain.
So that would have been one of.
Speaker 1 (28:21):
The things we would look for.
Speaker 4 (28:22):
Her history wasn't significant for something like a cancer, but
we look for evidence of that and some of the
standard blood tests that we draw, right, so those would
be other things that would be ruling out. We'd be
making sure that she didn't have some type of a
systemic infection that could be causing her symptoms.
Speaker 2 (28:41):
I had no idea that one thing was linked to
another thing, which was linked to the other thing. Who
would have thought that my sinuses had anything to do
with the excruciating foot pain that I was experiencing, you know,
years later, and that is something that I was never
able to link together. So, you know, looking at that,
(29:01):
looking at my history, looking at all of my symptoms.
Even though my genetic marker was negative, she said, not
everybody who has this condition has a genetic marker for it.
So sometimes it's almost just as important or even more
important to look at the symptoms and to be able
to really evaluate the progression of how things have moved along.
(29:23):
And she diagnosed me with siatic arthritis.
Speaker 5 (29:26):
Wow, and you're twenty eight years old at this point,
twenty eight years old. So Matt, take me to the diagnosis.
You know, when you first heard those two words soriatic arthritis.
Speaker 3 (29:40):
Part of it was a relief because we had a
diagnosis and there's treatment. But the other side of it
is like, this is not technically curable, like entirely, there's
no like magic medication that you take and it's like
just gone, in a week, you're done, You're all better now.
Speaker 5 (30:00):
So you did mention that you had to confirm that
there was inflammation, But in terms of a gold standard
for soriatic arthritis, is there a specific test that you use.
Speaker 4 (30:12):
In fact, there are no tests to make the diagnosis
of soriatic arthritis. So our blood tests are helpful when
they're helpful, but most of the time it's really history
and physical exam and response to interventions, and this is
where that long term relationship really starts to develop, and
seeing people over time and how things change. But there
(30:33):
is not a single blood test to make the diagnosis
of soriatic earthritis. Well, often if we're lucky enough see
something like psoriasis or a history of psiasis, we'll see
targeted joints that will typically think about in either distal psoriasis,
like specific distributions in the hands, for example, are larger joints.
Speaker 1 (30:54):
So it is always.
Speaker 4 (30:55):
Easier to make a diagnosis of soriatic arthritis when patients
have psoriasis. But there is a large enough number of
patients who don't develop psoriasis before their arthritis, but actually
after their arthritis.
Speaker 5 (31:07):
The symptoms that have been shrugged off throughout Lauren's life
were actually little clues all adding up to give doctor
Arnold the full picture of what had been plaguing Lauren
for fifteen years, soriatic arthritis. It sounds like the symptoms
can really run the gamut. That said, are there a
(31:29):
list of most common symptoms if you.
Speaker 4 (31:33):
Were to google soriatic earthrtis? I think that for sure,
people would talk about swelling in stiffness in specific joints
in the hands rather than the knuckle joint. People would
talk about mostly skin psoriasis in association with siatic earthritis.
People would talk about morning stiffness that's greater than thirty minutes.
(31:55):
So if you're not twenty five anymore, when you get
out of bed in the morning, you might feel a
little bit stiff. As you make your way to the bathroom,
you notice that you loosen up. People with sooriatic arthritis,
that's just ongoing. It could be for hours.
Speaker 5 (32:08):
What are some common misconceptions that people have about arthritis.
Speaker 4 (32:13):
I think it's really important for people to understand that
there are like hundreds of kinds of arthritis. We simplify things, right,
but there are all different kinds of arthritis, and so
I think the misconception is that this is not just
an illness that affects your joints. So I'm going to
generalize the thing that is a rheumatologist I worry the
(32:36):
most about when I meet patients with inflammatory arthritis are
actually not their joints. I worry about their heart I
worry about their risk of cancer, because we know that
patients with inflammatory disease that is uncontrolled have a higher
incidence of heart attacks, especially true in our sooriatic arthritis patients,
and higher incidents of some lymphomas and cancers. And so
(32:59):
I think the misconception is, oh, that it's just my joint.
But when I say to people, the likelihood of your
rheumatoid arthritis have left untreated causing a heart attack is high,
and that what killed patients with rheumatoid arthritis and soriatic arthritis.
Speaker 1 (33:14):
Is heart disease.
Speaker 5 (33:16):
What did that diagnosis mean for you?
Speaker 2 (33:19):
It meant a lot of things. It was validating to
know that I wasn't crazy, that something was really wrong,
and so there was a piece of me that felt
relief that at least now we know what it is
and now.
Speaker 1 (33:30):
We can hopefully treat it.
Speaker 2 (33:32):
It was scary for me also really hard because I
knew a lot was going to have to change my lifestyle.
I was scared was I ever going to be able
to go dance again or exercise again?
Speaker 1 (33:43):
What was working out going to look like for me?
Speaker 2 (33:45):
I was in a full time coach where running on
the treadmill was part of my job, and.
Speaker 1 (33:51):
I didn't know that I was going to be able
to do that again.
Speaker 3 (33:55):
It gave her a direction of like where to like
research so she can figure out how she wants to
pursue moving forward, and I mean, you get some hope.
She's good at finding the good and things been like, Okay,
here's a new adventure or new project to try and
work towards and you know, make things better.
Speaker 5 (34:18):
It just occurred to me that really you do almost
need to embrace the mindset of an athlete with these
chronic illnesses, because it's a marathon, it's not a race.
Speaker 4 (34:29):
And you have to focus on the things that you
can have control over, right, And I think it's instinctual
for all of us to number one, know what caused this,
which often we have no idea, and where's it headed,
what's the prognosis which a lot of the time we
also have no definitive idea, right, and that's incredibly unsettling.
So you have to then be able to give over
(34:51):
some of that wanting to control the outcome, to kind
of just go for the ride right, to jump forward,
and to let's just keep moving forward, is what I
say to patients.
Speaker 2 (35:02):
In some ways, I feel like it's given me the
gift of being more in tune with my body because
for so long I ignored so many things. It has
allowed me to identify triggers and things that trigger these
episodes and inflammation. I can't say that I'm flare up free,
I can't say that I'm in remission, but I can
(35:23):
tell you that I can understand that my body can
only tolerate so much exercise.
Speaker 5 (35:29):
As Matt lovingly described her, Lauren is the eternal optimist.
Despite having to give up dance and accept the physical
limitations that can accompany her flare ups, Lauren remains dedicated
to moving forward and motivating others. What are you most
proud of your wife for?
Speaker 3 (35:46):
I'd say I'm just most proud for her resilience and
trying to like not let her condition take over. She
always is trying to better herself physically and mentally. She's
always pushing to find the brighter side of things and
not let anything get her down. So it's just nice
(36:08):
to see pushes me too.
Speaker 2 (36:11):
All that passion, all of the love I had for dance,
I mean, it's all still there, but I have been
able to redirect that passion and fire to help others
that are like myself that are going through dealing with inflammation,
weight loss, resistance, feeling exhausted or fatigued, and all of
(36:31):
those things. And so I took the majority of that
energy and really put it into studying and understanding inflammation
at another level, so I could help others work through
exactly what I work through and understand their bodies the
way that I'm able to understand mine.
Speaker 5 (36:47):
I love that it's the same kind of imparting of empowerment.
It's just knowledge.
Speaker 2 (36:52):
Now exactly, and a knowledge that I so personally can
relate to, right, because I know those feelings of frustration,
and I know those feelings of you know, when you're
just you're feeling defeated, when you're dealing with something along
the lines of battling, whether it's sooriatic arthritis or another
(37:13):
inflammatory condition, right, And I want to help others be
able to beat it the same way that I was.
And once you start to identify and understand what your
body needs. What your body responds to is a life
that is waiting to be lived by you.
Speaker 5 (37:32):
To find out more on soriatic arthritis, you can check
out the Arthritis Foundation's website at Arthritis dot org.
Speaker 2 (37:42):
My name is Lauren shol I pushed through pain for
fifteen years before being diagnosed with sooriatic arthritis at the
age of twenty eight.
Speaker 5 (37:56):
Since this is the final episode of Symptomatic Season two,
we want to say a huge thank you to all
of our listeners. We truly value the opportunity to bring
these episodes to life. We'll be back soon with more.
Until then, if there's a story you want to hear
us cover, you can get in touch with us by
emailing Symptomatic at iHeartMedia dot com. And please don't forget
(38:17):
to rate and review Symptomatic wherever you get your podcasts.
Until next time, we hope you stay well. Symptomatic a
medical mystery podcast is a production of Ruby Studio from iHeartMedia.
Our show is hosted by me Lauren breg Pacheco. Executive
producers are Matt Romano and myself. Our ep of post
(38:38):
production is James Foster. Our producers are Sierra Kaiser and
John Irwin and this episode was researched by Diana Davis.
Speaker 8 (38:54):
What are real people with storyatic arthritis saying about cocentics?
Speaker 3 (38:58):
I had to do something cocentics. I moved better because
of concentics.
Speaker 8 (39:03):
Cocentic sec ukenyumab is for adults with active storiatic arthritis
and is given as a one hundred and fifty milligram dose.
Don't use if you're allergic to cocentics. Before starting, get
checked for TB serious allergic reactions, severe skin reactions that
look like eczema, and an increased risk of infections. Some
fatal have occurred. Cocentics may lower ability to fight infections,
so tell your doctor if you have an infection or
symptoms like fevers, sweats, chills, muscleleggs, or cough, how to
(39:27):
vaccine or plan to or if ibed symptoms develop or worsen.
Learn more at cocentics dot com or one eight four
four cocentics. Don't wait. Ask your doctor about cocentics
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