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Brian
Therrien: Greetings!
This is Brian Therrien with Dr. Simone Ravicz.
How are you today, Simone?
Dr.
Simone Ravicz: I’m
fine. How are you
doing, Brian?
Brian
Therrien: Doing
awesome, doing awesome. Thanks
for coming out and spending some time with us today.
I wanna just show the audience a little bit about your
background and who you are and what they’ll learn from your
work as members of the Fibromyalgia Digest, you have a pretty
impressive background. So
for those of you that don’t know Simone’s work, you have
been educated, you’ve done some studies on the west coast at
UCLA and got a BA from Brown University
back east here. And
since then you’ve been in the field of mental health and have
spent some time writing and doing some and also in business.
And you have a specialization in medical psychology, PTSD
post traumatic stress disorder, pain management, certified in
sports psychology, a nice well rounded portfolio of
accomplishment, Simone.
In
addition to that, one of the key reasons why I asked you to come
out and contribute to this project is the books that you’ve
published. One of
which is “High on Stress:
A Woman’s Guide to Optimizing the Stress in Her
Life”. People
unfortunately with fibromyalgia often suffer from stress cause
of all the, you don’t feel good, you can’t work, I mean
it’s tough to relax in that environment.
You also wrote a book about “Thriving with Your
Autoimmune Disorder: A Woman’s Mind-Body Guide”.
These are perfect topics that are right in line with what
I want; audience wants to know so they can learn to cope with
their fibromyalgia, so very good stuff.
Now
here and I don’t know if I want to call it a unique position
Simone, cause not only have you produced all this work and have
this traditional clinical psychology background but you also
have fibromyalgia.
Dr.
Simone Ravicz: Correct,
I have fibromyalgia. I’ve
had it for 19 years now. I
was one of the lucky few who early on were diagnosed accurately
and quickly. And the
doctor actually believed in fibromyalgia.
So I really lucked out in terms of who I wound up with.
Brian
Therrien: So
this recording is being done in almost 2011.
Dr.
Simone Ravicz: Right.
Brian
Therrien: So you
were on the cutting edge, you were…
Dr.
Simone Ravicz: I
was.
Brian
Therrien: You
were one of the first that that were diagnosed.
Now it’s becoming a little bit more if you will, main
stream but interesting.
Dr.
Simone Ravicz: It
is becoming more mainstream, there’s still a lot of prejudice
though as you know out there.
There’s the old saying about “it’s all in your
head” and that “it’s a woman’s sort of hysterical
disorder” which is what they used to call multiple sclerosis
before they understood that.
They would call it women’s hysteria.
Brian
Therrien: Wow.
Dr.
Simone Ravicz: Some
of that still exists although there’d been tremendous strides
as of late.
Brian
Therrien: So if
it’s called that, what about the, I don’t know three or four
percent of the men that have it?
Dr.
Simone Ravicz: Yeah,
I mean there are absolutely are men who have it and children as
well. They used to
not think that children could get it but they can get it.
And the number of potential causes for fibromyalgia that
we’ll talk about would cover the reasons that men would
experience fibromyalgia as well.
Brian
Therrien: Can
you walk me through from your diagnosis all the way to the point
where you found your fibromyalgia was so severe that you were
unable to work and it disabled you, correct?
Dr.
Simone Ravicz: Sure.
Brian
Therrien: Yeah.
Dr.
Simone Ravicz: It
usually begins with experiencing pain which is of course not
uncommon. I felt a
lot of pain in my neck and my shoulders and I was doing a lot of
computer work at that time and reading and it really began to
interfere with that. I
was finishing up school at that time.
I finally wound up going to the doctor and as I said I
was incredibly fortunate to have an excellent doctor who sent me
to a rheumatologist which is a second good outcome which I’ll
talk about in a minute. They
both felt that it was fibromyalgia and I didn’t know what it
was at the time. Unfortunately
the second doctor gave me this delivery that a lot of people
have gotten which is not a very optimistic one.
Basically saying, you have fibromyalgia, there’s really
nothing you can do about it and you’ll have it for the rest of
your life. So that
was what I was left with.
Brian
Therrien: That’s
great news.
Dr.
Simone Ravicz: Yeah,
that’s exactly how I felt.
What am I gonna do? I
can’t, I can’t live like this forever and immediately the
negative thoughts, jump to the four, such as I’m
always gonna have this, I’ll never be able to succeed or do
what I want, all those negative thoughts that we need to be
careful about when we have fibromyalgia or any kind of illness.
So that started the circuit of doctors and these days
typically people have to go to about 10 to 12 doctors before
they’re accurately diagnosed with fibromyalgia.
Brian
Therrien: So
they cut that down? Sorry
to interrupt but that’s just absurd.
Dr.
Simone Ravicz: It
is absurd.
Brian
Therrien: And I
get it all the time but yeah.
Dr.
Simone Ravicz: Yeah,
right it is absurd. And
what’s just as bad is that the average length of time it takes
is five years. So
it’s pretty shocking and that all stems from the still
existing, you know level of disbelief that fibromyalgia is a
real illness. And
not just what they call a wastebasket diagnosis.
If you can’t figure it out just call it fibromyalgia,
which is completely untrue.
You know there are specific symptoms and we’re finding
more and more reproducible findings now, scientifically
reproducible findings in the brain and in terms of
neurochemicals that mark fibromyalgia that really can stand up
to proving that it is an entity of real illness.
Brian
Therrien: Well
that’s encouraging.
Dr.
Simone Ravicz: Yes,
yes.
Brian
Therrien: Understanding
is one of the keys, correct?
Dr.
Simone Ravicz: Understanding
is one of the keys and it’s one of the key for people who have
fibromyalgia too. They
feel a great relief. Education
is critical for people with fibromyalgia.
So that they know it is a real disease and that they
don’t feel they’re going crazy and that they finally start
to learn about things they can do for it.
Brian
Therrien: So
Simone, from the time that you were diagnosed, at what point did
you start really digging in and doing the writing and the
research about in this area?
Dr.
Simone Ravicz: I
would say probably I started digging in about 12 years ago and
researching, doing a lot of researching on my own.
I also happened to wind up, my cousin has chronic fatigue
syndrome and she has one of the worst cases they’d ever seen
in the country so she was being flown around the country being
put into all kinds of experimental trials.
She wound up seeing one doctor in
Orange
County
, Doctor Jay Goldstein who was really at the cutting edge of
chronic fatigue and fibromyalgia.
So I was fortunate to get linked up with him.
He was so at the cutting edge that he really inspired me
to start doing some research on my own and to try to go through
his research which was very complex and not very many people
could understand what he was trying to say.
But after going through that and becoming more interested
and just because of the fact that I’m interested in helping
other people, I wanted to get the word out about it.
So I started writing some articles about it, getting
involved in support groups, things of that nature.
You know always at the same time hoping to find different
treatments so that I could try because the fibromyalgia was
interfering more and more and becoming more and more severe.
And the duration of it was really getting to me
psychologically.
Brian
Therrien: The
duration of how long you’ve had it or the flare part?
Dr.
Simone Ravicz: Well
the flare parts from the fact that it seemed so uncontrollable.
Sometimes I would be well, typically okay and other times
I would feel terrible, so that, that is the really difficult
part of fibro to contend with.
Also you know the duration of time that it was lasting
and the accompanying fact that it would never change, I would
never get better and that this is gonna be my life now.
I constantly had to try to battle against those thoughts
and that’s something I want to work with people with
fibromyalgia. One of
the biggest areas that we focus on in terms of treatment is
cognitive treatment, which is having people examine their
thinking about fibromyalgia.
Their thoughts about themselves, about relationships,
about rather than viewing everything is a problem, trying to
reframe things as challenges rather than threats or problems.
So changing one’s thoughts, the whole cognitive
component is critical in the treatment.
Brian
Therrien: Well
that’s really, I mean, I’m sure that certainly applies to
fibromyalgia but that, that’s a just a great life lesson
there. You’re
always thrown things you know.
Dr.
Simone Ravicz: Right.
Brian
Therrien: Good
point. Let’s touch
on a few things if I could that I know the audience wants to
learn a little bit about, they’re gonna learn about from your
work later on, but the real thing is people want to know the
cause. I think the
reason why that’s commonly asked and comes up as a question is
what causes it, cause if you know what causes it perhaps you can
you can somehow tame it or control it or part of the
understanding process so what can you share with us about that
experience?
Dr.
Simone Ravicz: Well
I’ve shared with you several of the different thoughts because
as of now we still have no single theory.
And each of these theories that are briefly discussed may
in fact contribute to the development of fibromyalgia.
There may be, it appears that it’s multicausal as are
many illnesses and that although it can start from a number of
different points, it ends up affecting the same systems in the
body and therefore the similar symptoms develop.
So for example there is a sleep theory, ask anybody with
fibromyalgia about their sleep and most likely you’re gonna
get that anal and negative reaction.
Brian
Therrien: Negative
in the sense that they don’t sleep well?
Dr.
Simone Ravicz: We
don’t sleep, we don’t sleep well, it’s none refreshing
sleep so that when we wake up in the morning we feel exhausted.
And we feel a lot of times in great amount of pain, my
pulse ache. I used
to wake up and feel as if I’ve been hit by a ten ton truck all
over me. And it was very strange to hear other people echoing
the same sentiment as we’d be waiting in our doctor’s
waiting room. You
know to hear people using words like that, “I woke up this
morning and I felt like a truck slammed into me.”
So
the experience is limited hours of sleep as well as non
refreshing sleep. And
the problem, what happens is that when people with fibromyalgia
get into the deep level of sleep, the delta level, what they
call alpha waves, which are the brain waves that exist when
we’re awake and alert, they intrude and they bring us back up
to a higher level of consciousness.
So our deep level of sleep keeps getting interrupted.
And that deep level of sleep is when growth hormone is
produced and growth hormone is responsible for repairing micro
tissue and for muscle growth and keeping our muscular system
intact. And so
that’s one of the reasons that is used to explain a lot of the
muscular pain, is that from.
Everyday there are minute tears in our muscular system
and people with fibro aren’t getting the system repaired.
Brian
Therrien: Well
that’s just really makes sense unfortunately but it does.
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Dr.
Simone Ravicz: Yeah.
Brian
Therrien: So
your body isn’t getting into the deep sleep thus isn’t able
to repair its muscles.
Dr.
Simone Ravicz: Right,
exactly.
Brian
Therrien: You
got small little minor tears thus the matra feel.
Dr.
Simone Ravicz: Exactly,
exactly. And you
know along with no sleep which is experienced in so many
disorders thus become anxiety which we see so often in
fibromyalgia as well. People
get more and more anxious because they think, Oh, I’m not
gonna be able to sleep tonight, they get anxious about that that
it interrupts their sleep further.
And then the anxiety tends to generalize into every other
aspect of their lifestyle. So
that’s the sleep theory.
There’s
also the fact that the ratio of women is about nine women to one
man in fibromyalgia that’s effective.
So a very smart doctor, Dr. Elizabeth Liev studies
hormonal levels in fibromyalgia and she found that there’s
potential wall of low estrogen levels in fibromyalgia and that
that might explain some of its symptoms.
Because when women are low in estrogen, the levels of
pain they experience are much higher.
Another
interesting theory is the genetic theory and it’s been found
that about 40% of people with fibromyalgia have a close family
member with comparable symptoms and that’s pretty high number,
40%. We’ve
probably also heard that trauma can cause…
Brian
Therrien: Yes.
Dr.
Simone Ravicz: Fibromyalgia.
Brian
Therrien: Yes.
Dr.
Simone Ravicz: And
both physical and emotional trauma had been studied, also
physical label of the things such as car accidents or sports
accidents or illnesses or viruses which can happen weeks to
months before symptom intensification.
And there is a lot of evidence supporting the fact that
physical trauma can trigger fibro.
And we’ve also noted emotional trauma such as major
stressors and even severe childhood trauma and there’s some
support for that as well. More
research really needs to be done in the theory especially the
childhood trauma. But
there is evidence that severe traumas such as lost of a job,
lost of a loved one, divorce, things of that nature may trigger
fibromyalgia as well.
Brian
Therrien: Very
interesting.
Dr.
Simone Ravicz: Right.
Brian
Therrien: So.
Dr.
Simone Ravicz: What
the newest approach is and what’s really getting a lot of the
hot press and why fibromyalgia is now called a neuroendocrine
disorder. Nervous
system and endrocrine anamoly - is they’re looking at the
central nervous system and at the brain and we’re using a lot
of new tools that we have to study the brain such as PET scans
and alike to really look at the brain and see that there are
actual differences. And
this is very exciting because now we’re getting closer to be
able to show people hard evidence that there are differences
between people with fibro and people who do not have it.
For
example there is less oxygen that get’s to the frontal lobe
and there’s actually less density in gray matter in the
frontal lobe and what that causes is changes in the neuro
transmitters, like I’m sure you’ve heard of dopamine and
serotonin, right? We
hear about those a lot because they’re so powerful in our
system and they’re involved with things like mood, energy,
fatigue and pain. And
people with fibro typically have lower than normal levels of
dopamine and serotonin and also of growth hormone which I
mentioned before. But
there are far reaching effects from that, and that’s where the
whole school of thought of giving medication has a reason
because the medication that’s typically they’re giving are
medications to increase serotonin.
And the newest research now is going towards trying to
find out medications which would actually increase dopamine,
which again is involved with regulating; it’s sort of like a
pleasure neuro transmitter.
It allows us to experience pleasure, it affects mood, and
it affects arousal and all those areas are impacted in
fibromyalgia.
Brian
Therrien: Simone,
do you know how many, how many are approximately diagnosed with
this in the
US
?
Dr.
Simone Ravicz: Ten
million in the
U.S.
Brian
Therrien: Ten
million.
Dr.
Simone Ravicz: And
that’s probably a huge underestimate.
Brian
Therrien: Yeah.
Dr. Simone Ravicz: Because
of the fact that we we're talking about how difficult it is to
get diagnosed with fibromyalgia and because a lot of people
simply don't go, ever to be diagnosed.
The number of people though that suffer from fibro is
more than the number who suffer from LUPUS plus multiple
sclerosis plus Parkinson’s altogether.
Remember fibromyalgia is more than those three disorders
altogether.
Brian Therrien: Wow.
Dr. Simone Ravicz: Yes
and it is a worldwide phenomenon. It's found in every society in
which it's been looked for to date.
Brian Therrien: And it
still doesn't get corrected in my spell check.
Dr. Simone Ravicz: Oh my
God!
Brian Therrien: That's
part of the misunderstanding I guess you attributed to is that
it's not recognized by any of the windows tools...
Dr. Simone Ravicz: That's
right, that's incredible.
Brian Therrien: using
XP…
Dr. Simone Ravicz: That’s
me.
Brian Therrien: Yeah, I
always get to talk a lot of that.
Dr. Simone Ravicz: Yeah.
Brian Therrien: So
regarding cares, there's a movement in serotonin and dopamine
and increasing those levels?
Dr. Simone Ravicz: Right
if you’re looking at it from a strictly medical standpoint.
They're making progress in those areas which is fantastic
because those medications have helped people a great deal, a lot
of people. For
example, there had been three that have been approved to date.
One probably people have heard of is advertised all the
time, it’s called Lyrica.
Brian Therrien: Yes.
Dr. Simone Ravicz: Yes,
there is also Cymbalta often advertised and the newer one called
Savella. So you know
the three has been Okayed to date by the FDA.
Now the thing with fibromyalgia, given all the different
potential causes is that there's no one cure and what we found
is that a multi-disciplinary approach is really the most
effective and that's a mind-body approach which is what I write
about a lot in my book, is that one really needs a holistic
approach to make the greatest inroads against fibromyalgia.
Brian Therrien: That’s
one of the questions that’s commonly asked is people are
reluctant to go to traditional medication treatment path.
They'd rather do like an all natural approach which is
what you encouraged, a holistic approach but I...
Dr. Simone Ravicz: Which
means both western and eastern.
Brian Therrien: Okay.
Dr. Simone Ravicz: Which
means medication if it works for you, but not soley medication
in addition to the alternative.
The types of health care professionals that people with
fibromyalgia go to, the range is huge.
It doesn't just include medical doctors.
It includes dieticians, acupuncturists, massage therapist
and it includes occupational therapists, psychologists, social
workers, clergy for the spiritual aspects, it's just, there’s
a huge number. And
people are engaging in things like tai chi, deep breathing,
progressive relaxation, meditation.
All of these approaches have some validity with different
people and it's really like a buffet.
People with fibromyalgia have to be their own advocate's
finder and that's one of my biggest messages.
So we have to be the ones in control of our destiny.
We know our bodies. And
one thing that people with fibromyalgia really need to do is
learn to listen to their bodies.
Because a lot of people with fibromyalgia tended to be
very hard driving, hard working people who push themselves and
who did not listen to their bodies when their bodies says
"stop" or "take a break", did not listen.
There are a lot of people with fibro who would call
themselves over achievers or workaholics.
Brian Therrien: The type
A's.
Dr. Simone Ravicz: Type
As, exactly, exactly. So
priorities really need to be shifted and they need to be shifted
towards listening to our bodies, paying attention to ourselves
rather than to trying to help everybody else.
Brian Therrien: So to
recap the concept or the recommended approach for treatment
options is, there is going to be anything from spiritual to
aquatics and maybe even some dietary possible solutions.
So your encouragement is, in the work that we're gonna
do, we’ll lay out as many as we can find, have people try them
but it's really their job to figure out which ones or
combinations thereof are gonna provide some relief cause it's
not the same for everybody, correct?
Dr. Simone Ravicz: Absolutely
not the same for everybody.
And with that comes something that I also highly
recommend is that people keep a journal of what it is that
they're dealing in conjunction with their pain level and how
their sleep is going, what they're doing dietarily. Keep a
journal about their programs so that they can see what works.
So that they can see that when they've added in tai chi,
their pain levels have turn into, go down a couple of points.
Or they see that they've added some kind of supplements
that their sleep improves. There
are particular supplements that are really well targeted.
There are supplements that people can take for energy,
for knee function, for pain, for mood problems or for brain
function and neuro transmitter balance.
I have a list that breaks down what are the best
supplements for each of those areas.
So it's really
important in fibro that people like I said are their own sort of
doctors first and foremost and also becomes the researchers for
themselves. And we
are fortunate these days there is so much research and
information available because of the computer. In my day, I
could go to the library and try to find some articles on
fibromyalgia which were so few and far between.
I would have to either use Xerox machine or copy them.
Today we could sit in our computers and we have the
world. And there's
so much out there about fibromyalgia.
There's so many websites, core groups and a big thing
that I really suggest for people is to get involved with support
groups. Support,
getting social support is one of the biggest determinants of how
one is going to do in terms of their treatment process.
Brian Therrien: You know
which brings me to, these are all great points, brings me to the
next and the last area that I want to touch on in the time that
we have today.
Dr. Simone Ravicz: Sure.
Brian Therrien: A lot of
people have written in and explained their fate.
They struggle with confidence issues and really getting
other people to believe them especially the loved ones that are
around them. Even
convincing their doctors as evidenced by this five year getting
diagnose thing. I
guess the take is often times people look and appear fine,
perhaps tired but physically fine and people are not able to
work and a lot of people have to file and go out on disability
and people have this perception that disability is a like a
physical thing where you've got something wrong with you so…
Dr. Simone Ravicz: Right.
Brian Therrien: What
insider tip or two could you share with people of what they may
learn in the work that we're gonna cover here at the
Fibromyalgia Digest?
Dr. Simone Ravicz: Well,
you mentioned having to convince their doctors and finding a
good doctor is critical. The different issues to consider when
you're looking for your doctor and the big one is that they do
believe, that they’re experienced in fibromyalgia, that they
know about fibromyalgia. And
that they are the type of persons who is willing to believe what
you say, listen to you, your concerns, is willing to explain
medical terms, prepping you with the medications, side effects,
will help you with the your with referrals and is open to
alternative and complimentary treatments and he looks at you as
an equal. All those
things are important in finding a good doctor.
Now keeping the
journal that I mentioned in terms of all of the symptoms, the
pain levels, of sleep, mood, and etcetera, having something like
that, taking that into your doctor is gonna go far in convincing
your doctor that you have something going on.
I mean they're gonna see it in black and white.
And they're gonna see the patterns and changes and
they're gonna also realize that you're serious.
You're taking this seriously.
You're taking the time to write all this down and you're
asserting control. So
that goes far in convincing your doctor, having that kind of
information.
Also sharing
that with your family, having them take a look at that and
showing them this journal that you're keeping and letting them
see, if you don’t get enough sleep one night your pain level
spikes the next day or if you do your stretching or your
meditation that you get more sleep, more refreshing sleep the
next night, your pain level goes down.
To being able to show people these things and having good
communication with them is critical.
Brian Therrien: Great
points, great points.
Dr. Simone Ravicz: There's
a statistics that I would love for social security to know about
and for doctors to know about.
In 2003, there's a survey by the National Fibromyalgia
Association, which by the way is an excellent association for
people to look up on the computer, the National Fibromyalgia
Association, that this survey showed 99% of people with FMS who
are on disability said they would work if they could get some
pain relief. Ninety-nine
percent that were on disability wanted to work.
Brian Therrien: That's
back to the type of people that they are, right?
Dr. Simone Ravicz: Yup
and that also speaks to the fact that we're not faking here. A
lot of times people that are in the Social Security
Administration, they have a view that people aren't really sick
and that they’re just trying to take an easy route.
Well, that's obviously not the case with fibro.
Brian Therrien: That's
good point, that's great. Well
listen, I wanna thank you for giving us this insight and
overview and willingness to provide more information, more
in-depth information on this for the members of this so I thank
you and there'll be more to come from Dr. Simone Ravicz.
Dr. Simone Ravicz: Absolutely,
I look forward to it. Thank
you for your time.
Brian Therrien: Well, I
appreciate it, thanks again.
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