Listen To This Interview With Fibromyalgia Expert
Dr. Simone Ravicz And Learn How To Get The Latest Information About Causes, Cures, Treatment Options, How To Get Others To Believe You, And More
Click on the play button above and follow along with the transcript below
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 Universityback 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.
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.
Thanks so very much for putting your faith in me to help you cope with Fibromyalgia and Disability!