Episode Transcript
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Speaker 1 (00:02):
Welcome to ome Times TV, a division of ome Times
Media and Broadcasting.
Speaker 2 (00:14):
Friends and family can just roll their eyes if they'd
never experienced on an autoimmune condition and how medical WACA
mole it can be. They have a hard time understanding
what it's like and as much as someone might want
to walk in our shoes, not that easy unless you've
been there, done that with a diagnosis.
Speaker 3 (00:36):
Cue music, places and everybody places. We're starting in three two.
Speaker 4 (00:45):
Welcome to the Autoimmune Hour, where we look at the
rise of autoimmune disorders. I've brought together top experts that
range from doctors, specialist, nutritionist, researchers, and even those recovering
from autoimmune to bring you the latest, most up to
date information about autoimmunity and how to live your life uninterrupted.
Speaker 3 (01:04):
Thank you for joining us here on the Autoimmune Hour
with Sharon Sailor. Always seek sound, legal, medical, and or
professional advice regarding any problems, conditions, and any of the
recommendations you see here or read here on the auto
Immune Hour, Understanding Autoimmune and Life Interrupted Radio. Join the
Autoimmune Hours Courage Club. Sign up now at Understanding autoimmune
dot com. Now back to your host, Sharon Sailor.
Speaker 2 (01:30):
Welcome everyone to the Autoimmune Hour. I'm Sharon Sailor from
Sharonsailor dot com and as always from Understanding Autoimmune dot com. Well,
you'll find over four hundred and eighty five plus episodes
in counting, and I'm just thrilled to be back here
with you again tonight, and I'm really excited to share
a few things that I've learned over the decade since
(01:52):
my diagnosis and actually starting the Autoimmune Hour. And one
of the things I wanted to talk about were these
strange symptoms. It's something that I call like medical whackamole,
that there are certain symptoms that can say autoimmune and
often lead to the diagnosis, but oftentimes are mistaken for
(02:12):
other things long before you get that autoimmune diagnosis. That's
why in some cases it can take years to actually
get that diagnosis. For me, it was a number of
decades actually once I got my diagnosis, and then in
hindsight and the more I learned about autoimmune I'd probably
had it since university age lateeen's early twenties and didn't
(02:38):
really know what any of these weird symptoms and signs
really were. And I'm not blaming the doctors back then
I'm not sure autoimmune has talked about all that much.
I'm sure people knew about it, but not like they
do today, not the information that's out there today, Or
these symptoms could be anything, which is the problem that
(03:02):
it's really hard to know, and there are so many
versions and varieties of autoimmune that some symptoms, like we'll
say chronic fatigue, it could be labeled any number of
things from long COVID to stress to overworking to actually
having chronic fatigue syndrome. And so it's really, like I said,
(03:25):
it's medical whack mole sometimes. So I can't always blame
our healthcare providers either, because we can come with very
vague symptoms, and oftentimes with autoimmune they come and go,
which is equally frustrating. I don't know about you, but
I can have a pain in my knee one day
and it's in my elbow the next day, and so
(03:48):
that can be equally frustrating, not only for the healthcare
provider trying to be helpful and come up with a
treatment plan, but also for ourselves. It can be a
credibly frustrating and for our family members. I really get
concerned when we have gaslighting, medical gaslighting family, gaslighting, friend gaslighting,
(04:09):
whatever you want.
Speaker 5 (04:10):
To call it.
Speaker 2 (04:11):
Who thinks or hoopoos are symptoms and doesn't really understand
what a lot of them are about. Now, one of
the things I have learned through all of these episodes
that we've done that it isn't just physical symptoms. Oftentimes
our emotions play into it. Stress plays into it, lack
of sleep plays into it. So it can be any
(04:33):
number of things going on with us. It could be
a grief. I've had experts on grief talking about how
if you have automan it can aggravate the symptoms, and
so it's really if you have an automan condition, it's
just not an easy diagnosis to understand. But some of
the things I want to share tonight are common symptoms
(04:56):
that I've heard and or experienced myself, and some of
them are very uncommon too. So if you would write
down in the comments, if you've got things that you say, Okay,
every time this happens, I know, I need to slow down,
I need to take better care of myself, I need
to eat better, whatever it is, otherwise I might go
into an autoimmune flare. And if you don't know what
(05:18):
a flare is, that's where your symptoms can be stable
for a while and then all of a sudden they
act up again, or sometimes it's a whole new set
of symptoms, which is even more frustrating in a way
because you're like, Okay, if it was the old symptoms,
I would know what to do because I've been able
to comment before, But now I don't know because these
(05:41):
are totally new symptoms. That's why I call it medical whackamole.
It that's how I feel about the autoimmune condition, and
I'm sure it's the same with other diagnoses, since I'm
not familiar with those, though, I just talk about it
in the realm of autoimmune conditions, and one of a
common one that I hear is frequent headaches. But these
(06:03):
are not like stress headaches, and they're not like migraines either,
And oftentimes they're a headaches that can happen in just
part of the head or part of the face, or
it's very fascinating to me that some of these headaches
can I don't know. I'm not a medical professional. I'm
just someone who's muddling my way through and understanding my
(06:24):
own diagnosis and hoping to help others. But frequent headaches
is one that is very common that people talk about,
but the problem with it can be any number of things.
It could be a virus, you never know if it's that,
it could be a food allergy that's causing the headache.
I've heard from a number of people who have food allergies,
(06:45):
especially gluten, that they say they get very severe headaches
after they've been glutened. I know it's not a verb,
but I like to say it. They can also often
get frequent headaches after they've been exposed to gluten, which
is fascinating to me and not one that's easily recognizable,
because yes, there are tests to find out your sensitivity level,
(07:07):
are you celiac or on the sensitivity to gluten scale,
But there isn't a test to say this headache was
specifically caused by glutent, So that can be equally frustrating
and not understanding that. So if you check off the box,
just thinking about frequent headaches and if they're unusual headaches,
they're not your typical headache, your typical stress work headache.
(07:30):
Oh no, every time so and so calls, I get
a headache. Those are awful, but they're not part of
this breaking it down to see if this is really
caused by an autoimmune condition, an undiagnosed autoimmune condition, or
a flare of your current one. Another one that I
find is fascinating is unexplained skin changes and skin rashes,
(07:53):
everything from a change to your pigmentation and even to spots,
or it can be your whole body or skin rashes
can be hives. My diagnosis ten years ago involved major
skin rashes and then the skin got so inflamed that
it actually peeled. I know, it sounds graphic and gross,
and yeah it was. Luckily, once your skin starts being
(08:17):
that involved, the diagnosis came pretty quick and we were
able to start intervention. Why it only lasted for four months,
but still taking care of myself and still treating myself
with understanding and space and grace for the body, and
really loving it for being able to get under control
(08:40):
it get everything under control that quickly. It's a little uncommon,
but definitely I think the body's amazing and so really
thank it for that. But to understand that if you
have unexplained skin conditions, rashes, changes, even itching can be
a sign of numerous things, so be sure and get
(09:02):
that checked out by the proper doctors that you know
and trust too, and keep a journal of some of
these things. Let's really you think, oh, I'll remember this
headache or I'll remember this skin rash, but I find
I try, but I don't. I may just start to say, oh,
another headache and forget to write it down. And I
(09:23):
think it's important for them to see a chart or
an understanding of how frequent is your word frequent, like
that pain scale right where they say on zero to ten,
what's your pain, And it could also be zero to ten,
what's your frequency of skin rashes or what's your frequency
of headaches or any of the other things that we're
going to talk about tonight. And also another thing to
(09:45):
keep track of, like with skin hives, there's certain healing
modalities that can cause hives. Actually, I've heard of people
getting hives from high doses of vitamin C and so
that's not that uncommon. That's something that is out there
in the middle literature to understand. So it may not
be an autoimmune condition. It may be something else in
(10:06):
your environment that you're doing that is also causing these
So there again it's one of these weird symptoms that
like is it or isn't it, And how do I
play detective to narrow it down to go, ah, okay,
this is what's causing it. And molds another one that
can cause itching and being exposed to mold, it can
(10:30):
also cause autoimmune or precipitate autoimmune. We've had a number
of guests on that said that exposure to mold actually
did cause their bodies immune system to overreact, but it
also can cause itching, So that's one of the first
signs of mold exposure too. You can check out Understanding automune.
We've had a couple of mold experts on to talk
(10:51):
about all these sort of unusual things that being exposed
to mold can do to our body and some of
the things that we can do to recover from that
as well. Another one I wanted to talk about would
be weird neurological symptoms. I've heard everything from tingling hands
and feet, to arms and legs going numb, to even
(11:13):
you facial spasms, all sorts of things. So neurological symptoms
are often associated with a number of autoimmune conditions, and
sometimes narrowing it down to which diagnosis it is to
label it is sometimes tough. MS is common for having
neurological symptoms, but so is diabetes, and so it's important
(11:35):
to know and keep track of your neurological symptoms. And
I've even heard of people taking certain medications which made
their neurological symptoms worse, and so there again it's like,
how do you know? And it's really about keeping track
and being careful with understanding, Okay, when X happens, why happens.
(11:58):
I know it's hard to do sometimes and I'm talking
about it like I do it faithfully. I have to
be honest with you. I wish I did. I have
to give myself space and grace for when I mess
up and don't do it as faithfully as I should.
And I guess part of me doesn't want to feel like, oh,
being a hypochondriac or something like that or not if
(12:19):
you have an autoimmune condition or more. It is true
that there's a large majority of people that have an
auto imune have more than one, and friends and family
can just roll their eyes if they'd never experienced on
an auto immune condition and how medical whack a mole
it can be. They have a hard time understanding what
it's like. And as much as someone might want to
(12:40):
walk in our shoes. Not that easy unless you've been there,
done that. With a diagnosis, the neurological symptoms can be
any number of things. And what I've found with several
people that have certain autommune conditions that have the neurological
symptoms that go with them is that oftentimes the symptoms
can change. They can say, oh, yes, there are days
(13:01):
that my arms go numb, and then there are days
that my feet tingle, and then there are days that
my arms and numbs and my feet tingle or something
like that. And so just to keep a close record
of that, and there are specialists in neurology that you
might want to see to go over all the possibilities,
because the quicker we can handle all of our symptoms,
(13:23):
the easier it is to really uncover it and to
take care of them and to make sure that the
body's being well tended and well cared for and well loved.
I know the emotions plays into that too. Sometimes people
will say maybe they're holding their breath because they're really
emotional about something, and then they go, oh, I get dizzy,
and I'm like, oh, but I think you were just
holding your breath. So it's really hard to know. But
(13:46):
as I said, these are just some really unexpected or
unusual symptoms that people don't put together with an autoimmune condition.
Another one is eye problems. There are numerous ones. There's
like which is associated with dry mouth, but believe it
or not, it's actually about all of your mucous membranes,
(14:07):
and so it could also cause dry eyes. It can
cause itching of the eye, It can cause vision changes,
and so that's another one where you sometimes might go
to the I doctor as oh, yeah, eye changes, you're
just of that age, right.
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If I could be you could be me just one hour,
if we could find a way to get inside each
other's mine.
Speaker 5 (15:56):
Welcome all in my shoes, Welcome in my shoes. Well
before you have used, criticize and accused, welcome out in
my shoes.
Speaker 2 (16:14):
You're just getting that age. And that may be true,
absolutely maybe true. But if the eye changes come on quickly,
or I'll say, they don't settle down, meaning it's not consistent,
like when I had to start wearing readers reading glasses
that was consistent. That was yeah, the old eyes weren't
(16:34):
focusing quite like they used to. What I heard from
people who talk about their eye symptoms are that they
come and go or they change, meaning one day I
can have very dry eyes and the next days it
can be maybe even too moist, or it can be
that I'm having to blink a lot, which is a
symptom of dry eye, by the way, Or can maybe
(16:58):
even be their vision has changed, maybe one eye is
working better than the other eye, something like that. So
it's important to seek out eye care when you start
having unusual eye problems, and it may be a sign
of an autoimmune condition, or like I said, maybe it's
just your eyes changing, because a lot of us do
(17:20):
end up wearing readers as we age, right, I never
thought I would. I was someone as a child and
young adult had really great eyes. And it was a
bit of a shock when I finally went to the
eye doc and I said, why is everything always so
fuzzy now? And his joke was, your arms got too short?
And what did he mean by that is because I
could no longer hold the menu clear out there? You know,
(17:43):
my arm got too short. I could only yeah, I
couldn't get it. It was so far out to where
I could see it. So anyway, that's my story about
the craziness about our eye problems, as well as all
of our other eye problems. I was having troubles sleeping
a few years ago and I already had the diagnosis,
(18:04):
so I was concerned it was part of the diagnosis.
And my lovely rheumatologist said to me, Sharon, let's explore
because you know what it could be menopauds. That's another
one didn't really want to hear. True, it's all going
to happen to us women who reached that certain age, right,
(18:24):
So we explored that to find out if this unusual
symptom where my sleep pattern had been disrupted, was it menopause,
Was it a sign of an autoimmune flare or a
new autommune condition, or was it just stress and overwork, worry,
any of those other things that can keep us from
getting good night's sleeps. So that's another one to understand
(18:46):
is what other things in your life are playing into
this that it's maybe not a symptom of an autoimmune flare,
but it's something else that's playing into your life. Work, children, house,
women of a certain age, people of a certain age,
I should say, often have are they call the Sandwich
generation where people our age are taking care of elderly
(19:10):
parents and children. So, my goodness, that can cause fatigue.
We started the show out talking about unusual fatigue those
sorts of things can absolutely be symptoms of auto immune
but not necessarily an autoimuine condition. Another one that I
was just thinking about because right now it's I'm in
a very warm environment, and I realize it plays into
(19:32):
the neurological I think. I'm not a doctor here, but
this is what I think that's happening. Is heat and
cold intolerance, I should say, and or cold intolerance is
a sign that something's wrong with the irregulatory system. The
heat or cold regulatory system inside you is an unusual
symptom of certain auto immine conditions that can be related
(19:54):
to thyroid and other things. So understanding if for the
longest time you were fine in so and heat, and
then all of a sudden, now you're not, that's an
important thing to make note of. Or cold intolerance, Oh
my goodness, no one else is really cold, but even
this mild chill in the air, I just feel so uncomfortable.
(20:15):
That's another thing to take note of. It's really fascinating
to me how many of these symptoms can be anything,
and they can also be important and part of your
diagnosis as well. I know it's hard to go to
the doctor with all of these vague and unusual symptoms
and expect them to know right away, pinpoint it right away.
Years ago, I had a doctor tell me that with
(20:35):
autoimmune and other conditions, there's like this range that all
these symptoms fit in, and it's not until something pops
out of that range that they can actually put a
label on it. For me, when I got the massive
skin rashes, they were able to put the label of
dramatimiocytis on it. But up until then, for a while
I had the medical wacamole symptoms of where it could
(20:58):
be a number of things, and I was at actually
treated for several things while they were trying to figure
it out. And oftentimes they give you a lift of
symptoms with that other diagnosis, the beginning diagnosis, whatever you
want to call it, and I would go maybe these
two things, yeah, but not all these other things. And
(21:18):
that's what can be a frustrating thing about getting your diagnosis,
and trust me, it's equally frustrating for your medical providers
trying to figure out narrow down what possibly could be
going on for you. Another one I want to talk about,
which is common in some things because people go oh arthritis,
which is an autoimmune and rheumatoid arthritis autoimmune joint pain,
(21:42):
but there are so many other autoimmune conditions that have
joint pain associated with them. But then there are other
syndromes and other things that you do with your life
and your body as at ages that can cause wearing
down of the joints, which is different than like an
arthritis arthritic joint. So joint pain and swelling are common,
(22:05):
especially with heat intolerance. I know I'm circling around here,
but I'm just thinking about swelling is common. When people
tell me they have heat intolerance, they'll oftentimes have some
swelling going on as well, some fluid retention and things
like that. So understanding that joint pain isn't always just aging.
(22:25):
It can be signs of an autoimmune condition and it
should be looked at by rheumatologists to be treated appropriately
and properly. So if you haven't had joint pain before
and it's a sudden, unexplained onset, and you're like, Okay,
I didn't run a marathon, tare and it's a sudden onset,
I haven't checked out. Because the joints can wear down
over time, and things like rheumatoid arthritis and soriatic arthritis
(22:49):
can actually do damage to the joints, and not letting
that symptom run for too long before you decide to
have it looked at and discussed with a healthcare provider
to understand what's going on. Another one would be changes
to your gut, whether you're getting stomach pains or getting
gourd acid reflex and you never had those before, or
(23:11):
you're getting changes to your bowels, maybe constant constipation, chronic diarrhea,
or switching between the two irritable bowel syndrome. It could
be everything from a dietary condition. It could be your
gut microbiome out of whack. It could be just something
that you ate that disagreed with you that's stuck on
(23:31):
for a week or two. So it's important to keep
track of your dietary changes and actually any change that's
in your system, you're like, this is unusual, this is different,
make note of it. It's really important to understand that
because simple changes to our diet can often be very
successful or often lead us down a different path that
(23:52):
we didn't want to take. And so that's another one
to understand, is any changes to our dietary or our
gut or digest system is to pay attention to that
as well. Another one that I hear a lot is
hair loss. It's fascinating to me. There's so many symptoms
(24:14):
that can cause hair loss. There can be so many
diseases that cause hairless, not just autoimmune conditions, but so
many other diseases that can cause hair loss. Menopause sometimes
women's hair fins and changes, and I forget what they
call male menopause. There's a term for it, so I
can't think of it right now, but that can cause
(24:35):
hair loss as well. And so just understanding that hair
loss could be a symptom of an autoimmune condition. And
I know it's not helpful because these can be so
interrelated and they could be nothing at all. Either. They
can just be you know what, you have, joy pain,
you slap, crooked, whatever it is, or hair loss. I
had a friend, she's much younger, it doesn't have an
(24:57):
automan condition, started complaining of hair loss, and then we were
talking about that. Every day she pulls it up in
a tight, messy bun behind her head with a scrunchy
and I've often wondered if pulling it that tight every
day doesn't cause some hair loss I'm no beautician, cosmetologist,
hair expert at all, but would seem to make sense
(25:18):
that I could even be causing hair loss to understand
whether that's part of the problem too. And that's why
autoimmune conditions can be so frustrating, because they can have
any number of symptoms, and they can be as small
as I've had people tell me that their first symptom
a sign of a flare is that their eyelids peel,
(25:40):
and that's can be the part of that part where
now they know when they're going into a flare is
when their eyelids peel. Now, I'm thinking that's pretty specific, right,
but they know for them that's their tell that something's
going on, that the body is out of balance, and
they know that if they can begin to implement all
(26:01):
the things they know to do, meditation, hydration, sleep, rest,
stress reduction, better diet, cleaner diet, defining some joy, spending
some time with yourself, walking in nature, they can mitigate
going into another flare or a full blown symptoms. But
it's fascinating to me how the body works. I wish
(26:25):
I had some answers for everyone to understand, and I
wish it was as black and white as this symptom check,
the symptom not check, the symptom check, the system not check,
and it isn't. That's a frustrating part about autoimmune conditions.
That's why I suggest keeping a journal or a diary
or notes like people sometimes talk into their notes app
(26:47):
with a recorder and take some notes to understand to
help sort out like how much of it is environmental,
how much of it is stress related? Could some of
it be grief related? Absolutely? Could it be dietary You've
had to shift in your diet recently, shift in your
sleep patterns, family issues, could be any number of things
(27:09):
other than an autoimmune diagnosis. And so it's important to
keep records. And what I find fascinating too is after
ten years, you can go back and go, oh, my gosh,
one of the things that I'm notorious for and I
wish I wasn't was. I'll start doing something and I'll
do it really well, and I'll start feeling better, and
then i'll cheat. I'm like, oh, just this one time,
I don't have to do X y Z, I just
(27:30):
don't have to do it, And then pretty soon I
slip and I start feeling maybe a little crummy, again,
and I'll go back and read, say what was I
doing that was so successful? And I'm like, ah, that
was it? How come I gave that up? Sometimes I
have to be taught a lesson or two by the
body before I wake up. Go Okay, yeah, got it,
got it. That's I'll keep doing that. So what are
(27:52):
your potential triggers that might activate a symptom? Or maybe
what are some of these odd little symptoms Like Sharon
and I have had some of those symptoms. Make some
notes about how long you've had them when you have them.
Oftentimes people can have them when they first wake up,
and they could dissipate during the day, or they get
them in the evening when they're more tired. So it's
(28:13):
important to also keep track of when the symptoms are
worse and when they're maybe not noticeable at all. That
zero to tend scale that we talk about for pain,
use it for your symptoms too, right doesn't have to
be specific to pain. And so understanding what are some
of these little tells that early signs, Maybe not your
(28:33):
peeling eyelids, but what are these early signs that can
help warn you trigger is about to be pulled? And
then also make notes of these lifestyle changes, these management
plans that you have, so you can keep track of them.
Like I said, sometimes I have to go back and
read mine to make sure what, oh, that's what I
was doing. So it's important to keep track of these
(28:56):
lifestyle changes and what works and what doesn't work. There
are many things that I've been told, oh, this works
great for me, and I try and it doesn't work
for me, and that's okay. It's that you had the
willingness to try it, and the willingness to be open
minded about it, and the willingness to use your common sense.
Though I've heard some real crazy ones where I'm like, yeah, no, yeah,
(29:19):
I'm just not going to do that one. That one
doesn't sound safe, nor does it sound desirable, nor does
it sound like anything I'd want to do. So keep
an open mind and yet a very conscious mind, a
very discerning mind, because you know your body best and
you know what will work best for you. So trust
your body. Trust that inner voice. And if you're feeling
(29:42):
like Sharon, some of these symptoms are ringing a bell,
I really need to go get it checked out. That's
that inner voice. Trust it. That inner voice is there
to guide you and to help you. And when we
learn to trust it and learn to accept it, and
learn to feel safe within it and not allow others
to talk us out of it. I don't know about you,
(30:04):
but sometimes I've been talked out of things, and then
a week, two weeks, month down the road, I'm like
a I should have listened to my inner voice. We've
had shows on about experts within our voices to understanding
our inner voices as well, so check those out over
at Understanding autoimmune dot com. It's a great way to
find all sorts of topics. We do have a little
(30:26):
search feature there that you can just put in the
topic and see if we've talked about it yet. And
if we haven't talked about it yet, feel free to
drop a note in the comments of wherever you're listening
to this or watching it, and if you would go
over to Understanding Autoimmune and join the Courage club. We
love to share some of our tips and tricks over
there as well, and share in the comments and if
(30:49):
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(31:09):
get our message out about you are not alone, you matter,
and you are not your diagnosis. You can lead a
full life. And many people we've had on the show
have recovered from autoimmune I'm one myself, and so there
are many opportunities to explore full health and what it
(31:32):
means to you. And so thank you so much for
being here and joining me on this episode of unusual symptoms.
I've heard about red flags. Maybe you might want to
call them, but the problem with them is that they're
quite vague. But they're often the early warning signs as well,
so you might want to talk to your physician about them,
(31:52):
and especially if you have a diagnosis. You don't want
to be one of those that ends up with more
than one diagnosis, and if you can catch it early,
it's really worth it. So thank you so much for
being part of the community here. You are much appreciated,
and have a great day, have a great week whatever
(32:12):
your adventures, and join me next week for another brand
new episode.
Speaker 3 (32:18):
Enjoy the information provided on the auto Immune Hour, Understanding
Autoimmune and Life Interrupted Radio, including the websites Understanding Autoimmune
dot com and Life Interrupted Radio dot com plus social
media is for educational purposes only, which you read here
and see on The auto Immune Hour Understanding Autoimmune and
Life Interrupted Radio and its websites and other media outlets
is based on experience only. The information should never be
(32:39):
used for any legal, diagnostic or treatment purposes.