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Fibromyalgia (transcript)
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(PETER)        
Welcome to Second Opinion, where each week our healthcare team solves a real medical mystery.  When we close this file in a half an hour from now, you’ll not only know the outcome of this week’s case, but you’ll be better able to take charge of your own healthcare and doctors will be able to listen to patients more effectively.  I'm your host, Dr. Peter Salgo.  You've already met our special guests joining our healthcare team physician, Dr. Lisa Harris, primary care.  Welcome back, Lisa.

(LISA H.)       
Thank you.

(PETER)        
No one on this team knows this case, and we're going to get right to work.  Let me tell you a little bit today about Judy.  Judy is 51 years old.  She's in her primary care physician's office.  She's been in many times over the past year complaining of pain.  This is pain, she says, all over her body.  She's exhausted all the time.  She can't focus, she has headaches.  She's experiencing some social separation, because she's always in pain, she can't do the things that she used to be able to do.  Now Judy's a teacher.  Part of the history says that she has not worked in six months.  She's on short-term disability.  She'd like you, her doctor, to put her on long-term disability.  Lisa, what are you going to do?

(LISA H.)       
I need to get a little bit more history, and certainly if she was my patient, I would assume that I would know her a little bit better.  But a little bit more about the type of pain, where she hurts, what seems to make it worse, what makes it better.

(PETER)        
This is, all that she can tell you, she's very vague.  But she's miserable.  Any lab tests you'd like?

(LISA H.)       
Well, certainly I'd like to do a blood count, maybe a sed rate.

(PETER)        
Her sed rate was normal.  Her blood count was normal.

(LISA H.)       
Rheumatoid factor.

(PETER)        
Negative.

(LISA H.)       
ANA.

(PETER)        
Negative.

(LISA H.)       
Thyroid.

(PETER)        
Normal.  Actually, I don’t have that here.  I should not say that.  She had an HIV test which was negative.  An RPR which was negative.

(LISA H.)       
And certainly before I've done lab tests, she would have had a physical exam.

(PETER)        
On physical exam, it says here, that there's, there's nothing really remarkable.  Over the past six months, she's been on different NSAIDS, the nonsteroidal pain relievers.  She's also had narcotic pain relievers, and nothing has worked.  How do you think she's feeling right now?

(LISA H.)       
Well, she's probably very frustrated and aggravated and fed up with the medical system.  She clearly feels that there's something very wrong with her, and people are telling her that there really isn't anything wrong with you…

(PETER)        
Are they really telling her that?  Or are they telling her, we don't know what's wrong?

(LISA H.)       
No, they're telling her there isn't anything wrong with her.

(PETER)        
That's what she's hearing.

(LISA H.)       
Yeah, I'm absolutely certain that's what she's hearing.

(PETER)        
She was sent to a rheumatologist.  What's a rheumatologist going to do, that private, that a primary care physician won't do?

(FREDERICK)          
Well, actually, nothing, if the primary care physician does everything correctly.  I, I find it curious that pain all over, is not good enough.   You have to find out where the pain is all over, what the quality of the pain is, and a whole series of other symptoms that go along with it.  Fatigue and pain, difficulty sleeping, to make people think of what some have called fibromyalgia.  And they have a characteristic on physical findings.  So the physical examination would not be normal if that's what the patient has.

(PETER)        
Any tests that the rheumatologist might order?

(FREDERICK)          
Physical examination.  I think in, in situations like this, where the symptoms really are, are what's been called fibromyalgia, one wants to listen to the symptoms, and to touch the patient, and to find out about all of these things.

(PETER)        
As a rheumatologist, what would you order in terms of tests, what studies might you do?

(JOHN)          
Again, a lot of this depends on the, your interaction with the patient.  What are they concerned about?  I mean, what are their fears?  You know, if, if they're worried that they might have lupus, or something like that, then I may order some tests really to try and reassure them.

(PETER)        
Now, Lisa, you've been there, right?  You've been that person, who's gotten every test under the sun, the moon, the cloud.

(LISA H.)       
Yes, it took quite a long time before we discovered, and it simply was the touching, the feeling.

(Frederick)     
There are very few disorders that cause pain all over.

(LISA S.)        
Right.

 

(Frederick)     
Lupus is not one of them.  Rheumatoid arthritis is not one of them.  Osteoarthritis isn't.  Cancer isn't one of them.  There are very few.  And if one listens to all of this, what you need to do is to listen more, to touch more, and to do less testing.

(PETER)        
Mark, you going to do all these tests?

(MARK)        
Well, you know, I think there, there's a couple of really important things.  First is that fibromyalgia is real.  It's not in people's head.  The problem is we group people by symptoms, instead of by causes.  And I'm much more interested in finding out the causes and mechanisms of why people have these symptoms, and also include all the other symptoms that may have, like irritable bowel and sleep issues, and other problems that may be clues as to what the cause is.

(PETER)        
All right.  You used the word, fibromyalgia.  You're using the word, fibromyalgia.  What the heck are we talking about?  I mean, you jumped to this conclusion.  Does she have fibromyalgia?  What is it?

(FREDERICK)          
Well, fibromyalgia is a, is a, is a syndrome.  It's a condition that, that's characterized, I think, by pain all over, by sensitivity to touch, to difficulty in thinking, difficulty in sleep, fatigue.  Many symptoms in different, different areas.  It's a very simple diagnosis to make.  It's a, it's almost obvious when you start to talk to, to people.

(PETER)        
Now, you were using fibromyalgia.

(MARK)        
Yeah.

(PETER)        
But again, have we established it as a diagnosis yet?

(MARK)        
Well, it's a diagnosis of exclusion.  You have to exclude everything else.

(FREDERICK)          
No it's not.  That's exactly what it's not.  It's a, it's a diagnosis in and of itself.  You can have fibromyalgia and cancer and heart disease, allergies and everything else.

(MARK)        
Maybe, but there are many real things that can reverse the symptoms, that are exactly the same.  Whether it's vitamin D deficiency, or low thyroid function, and many other things that actually can be uncovered, that are treatable and fixable, and my believe is that if you go deep enough, and you uncover enough layers, that you'll find underlying causes for most of the people who have these syndromes, and you can treat those things. 

(PETER)        
But you disagree.

(FREDERICK)          
I don't believe that.

(PETER)        
Why do you disagree?  And you disagree too, you're the one…

(FREDERICK)          
Because, because it isn't so.

(MARK)        
Well, we don't, we don't see it, because we don't do the things that help, actually, people.  So I personally had to see…

(PETER)        
Wait, can I stop.  We don't do the things that help people.  What do you mean by that?

(MARK)        
Because we don't know about them.  We don't, in other words, we only see what we see.  Doctors see what they believe, instead of believe what they see.  So we often don't have a way of seeing into the things that are actually…

(JOHN)          
Things like fibromyalgia, we do see that.

(PETER)        
To hammer, everything's a nail.  To someone who looks at a lot of fibromyalgia, a patient with pain all over, is fibromyalgia.  What do you need to do to, to, and if you will pardon the pun, nail this diagnosis?

(FREDERICK)          
Well, you need to listen to the symptoms.  That's what, and, there are criteria.  The American College of Rheumatology has, which involves examination for tender spots.  But that's, that's rarely done, I think, in primary care.

(LISA H.)       
I beg to differ with you.

(PETER)        
She begs to differ with you.

(FREDERICK)          
Well, it actually is, you may do it.  But it's rarely done.  And it's often done on the basis of, of characteristic symptoms.

(PETER)        
Well, since you bring it up….go ahead.

(FREDERICK)          
Fatigue, widespread pain, tenderness, difficulty sleeping, irritable bowel syndrome, multiple symptoms.  That's what fibromyalgia is.

(PETER)        
But I…

(FREDERICK)          
It, it goes along, it goes along a distribution.  Some people have it very severely.  Other people will have it more mildly.  That's one of the problems with it, is it's not clearly, there's no clear point reasonably that one can distinguish fibromyalgia from non-fibromyalgia.  It's one of the, one of the problems with it.  Even though there are criteria for it.  Many people, many epidemiologists who have studied it, sort of think that it's a, it's part of a continuum, as I do.

(PETER)        
Now, you mentioned tender points, as if this was a very specific phrase.  What are tender points?

(FREDERICK)          
Well, let's…

(JOHN)          
So that's, there are some areas in the soft tissues, that are characteristically painful with fibromyalgia, and you press on them in a normal individual, and they don't, they aren't bothered at all.  Whereas you press on them in a fibromyalgia patient, they may be exquisitely painful.  Whereas other areas you'll press, and they're not tender in either, either a normal person or a patient with fibromyalgia.

(PETER)        
Let me ask Lisa.  This Lisa.  What did it feel like?  You complained to your doctor about pain.  What specific complaints did you have. 

(LISA S.)        
They were very specific points on my body that hurt continually.

(PETER)        
Where were these points?

(LISA S.)        
On my shoulders, my, I started out with my elbows, my lower back, hip area.  I also have some tenderness in here.  I didn't know if that was a residual of a previous illness.  So I had all these things at the same time.

(PETER)        
Those tender points?

(LISA S.)        
The first time I went to the rheumatologist he couldn't even touch those points.

(FREDERICK)          
Right.

(PETER)        
Are those tender points?

(FREDERICK)          
Yes.

(PETER)        
Those are the classic tender points.

(FREDERICK)          
Yes.

(LISA S.)        
On the back of your head.

(PETER)        
On the back of your head.  The rheumatologist orders some additional lab work, and specifically it says here, ruling out hyperthyroidism.  He gives Judy gabapentin as a treatment.  What's that?

(JOHN)          
That's a drug that works on nerve transmission, so it's used for…

(PETER)        
It's a neurotransmitter.

(JOHN)          
Well, it's, it's how your nerves communicate with one another.  And, and there are situations where you have neurogenic pain, and a drug like gabapentin can be very helpful for that type of pain.

(MARK)        
It reduces the stimulation of, of your brain.  It's a calming neurotransmitter.

(PETER)        
It's an antidepressant.  Judy, still doesn't have a diagnosis, and she's now on her third doctor.  Why does it take so long for a diagnosis with this disease, if that is, in fact, what Judy's got?

(FREDERICK)          
Because doctors don't think of what the patient is saying, and they don't listen to the symptoms, and they don't do the examinations correctly.  Fibromyalgia is about as easy a diagnosis as you, as you could make.  The criteria, the symptoms.  In this situation that you presented, it's a classic, it couldn't be, it could hardly be anything else.  Could be something else, but could hardly be anything else.  And it is because we look for other causes, we look for lupus or rheumatoid arthritis, and, and illnesses that rarely exist.

(PETER)        
Are you saying she's had too many tests?  We should have stopped with the history and physical fibromyalgia done.

(FREDERICK)          
She needs more thinking and less testing.

(PETER)        
Mark?

(MARK)        
To a point I agree, but I think, you know, having the diagnosis of fibromyalgia doesn't really help you very much.  It simply maybe helps you understand what's going on, but it doesn't tell you anything about the cause of the problem, and if we're going to move forward in helping with the suffering, which affects 2-6 million people, we need to get serious about looking more deeply, with tools and lenses that we don't use currently.  And, and with tools and therapies that are potentially effective, and start to look at those things, rather than saying, okay, you have fibromyalgia.  You have to learn to live with it.  I had fibromyalgia, I had chronic fatigue syndrome.  I don't have it anymore.  It's possible to get better from it, and there are ways to think about it that are quite different that we need to be looking at.

(PETER)        
Lisa, before they had established your diagnosis, what treatments did you have?

(LISA S.)        
Physical therapy and pain medications, and sleep medications.

(LISA H.)       
Just had physical therapy.

(LISA S.)        
Yeah.

(LISA H.)       
They didn't do deep, friction massage or iontopheresis?

(LISA S.)        
No.

(LISA H.)       
Or other (( ))

(LISA S.)        
Just regular, plain old, and it really didn't help at all.

(PETER)        
So Judy goes back to her doctor, Lisa, what do you think her doctor tells her?

(LISA H.)       
Well, hopefully she'll tell her it's fibromyalgia.

(PETER)        
That's exactly what she was told.

(LISA H.)       
{laugh} I mean, you know. 

(PETER)        
You know, congratulations, you've got fibromyalgia.

(LISA H.)       
You know, the sleep thing, the whole thing.  I mean, it's all there.

(PETER)        
Who gets fibromyalgia?  What's the typical patient?  Male, female, how old, what?

(FREDERICK)          
Well, they're generally around 50, is when people see them.  They're women about 90% of the time.  There's some factors that you see more frequently, and groups of people who have fibromyalgia.  But this, we don't really know why people get fibromyalgia.  There's an increased history of depression in families, people who develop fibromyalgia, there are certain issues of social disadvantage, education level, other sorts of things, which play a role.  But they play a very small role.  You can find these things here.  The answer is, we really don't know why people get it.  There's going to be, certainly there's going to be genetic issues and influences that are shown.

(PETER)        
Is it any wonder, after listening to what all has been happening here, that there are docs out there who don't believe it exists at all?  This is the same sort of drumbeat that I heard with chronic fatigue syndrome.  Doesn't exist, these are just people who complain.  Does that surprise you after listening to this?

(FREDERICK)          
There's no question that people have this and they have pain.  There's, there's all sorts of evidence, even at the neurobiological level, and imaging studies, that people who have, report these symptoms, have evidence of ….

(PETER)        
This is all over the Internet, right.  It's everywhere.  You can go to the Internet.  You can collect a bunch of symptoms, put it in your hip pocket, go see your doctor, complain of these things.  So is it any wonder that doctors are wary now, of people who come in complaining of these symptoms that are described so commonly?

(FREDERICK)          
Not at all.

(JOHN)          
I think, I think part of the, part of the problem is that, it's easier for the doctors when it is a disease with a clear treatment, right.  You can say, you know, you've got a urinary tract infection, we're going to treat you with this antibiotic, you're going to get better.  Treating something like fibromyalgia is much more difficult.  Because we don't, the treatment are not great.  When you have to, you have to spend a lot of time with the patient, you have to try things, see what you can do for them.

(PETER)        
So let me be devil's advocate here for a minute.  There are those who argue that the reason people claim they have fibromyalgia, is that they get a benefit, which is they now have a disease, and they get consideration for having this disease, and there's no good treatment, so it can't go away.  For some people it's a perfect story.

(FREDERICK)          
There's truth in that.

(MARK)        
That's what I believed before I got it.  And I thought that it was, you know, nothing on exam, nothing on tests.  People were complainers, they were whiners.  They were just trying to get, you know, get off of work or get out of being in their life, and that is just not true.

(JOHN)          
I think that's a small percentage of people, who might be doing it to get out of something.  I think most people are truly distressed by this, and would like to get on with their life.  So, so I don't know what the breakdown is, I haven't seen any epidemiological studies.

(FREDERICK)          
But it runs into the problem of self-reported severity.  That's, that's where the issue comes.  There's no way the physicians are able to determine who severe it is.  No one knows how bad my tooth hurts at this moment.  And when patients come to us with these symptoms, we really, it's very difficult for us to know.  Now, having a diagnosis of fibromyalgia doesn't mean that you are disabled, or you can't work.  Most people with fibromyalgia do work.  But we don't really have a good way of telling, whether they can or, or they can't.  We have no way of understanding.  The only pain that's easy to bear, you know, someone else's pain.

(PETER)        
Someone else's pain.  Lisa, how bad is it?

(LISA S.)        
Bad enough.

(PETER)        
Tell me about it, describe it.

(LISA S.)        
Well, it's always there.  It's generally painful sitting here.

(PETER)        
You're in pain right now.

(LISA S.)        
Yeah.  My neck is very sore and shoulders.  And today, actually, I have a patch on my back for the pain.  It's a pretty constant thing.  And I am taking currently three different drugs for it, and I just wish it would go away.

(PETER)        
Now, you're not…

(LISA S.)        
And there's no…

(PETER)        
You didn't tell us you couldn't come here today because you were disabled, though.  How does it affect your day to day, the things you need to do?

(LISA S.)        
Well, it just, it kind of makes you a little crabby after a while.  It's hard to concentrate, because you're trying to, you know, do your daily tasks, but ignore how you're feeling.  And I guess it would be best to ask my family actually {laugh}, because it's just really…

(LISA H.)       
It’s a classic example, because people who have chronic diseases, look sick.  People with cancer, look sick.  People with congestive heart failure, look ill.  Fibromyalgia patients generally look great.  And they tell you that they feel like crap.  And you're looking at them, like, yeah right.  You know, you still went to work, and you know, you've got your makeup and you're looking really good.  Sure you're in pain, and as you said, we don't have really good objective measures to figure out what's going on.  But it comes back to the art of diagnosis and listening to the patient.

(PETER)        
But wouldn't you say, if this was some other disease, perhaps, your leg had just been cut off.  And yet you went to work.  Look at this heroic person, you're working through your pain.

(LISA H.)       
Absolutely.  That's absolutely …

(PETER)        
And you're not getting that.

(LISA S.)        
It's very hard at work for the coworkers to understand.

(PETER)        
Before we break for a minute, is there a recognized theory as to why patients with fibromyalgia have so much pain?  With, with a stimulation that might not give somebody else pain?

(LISA H.)       
Yes.

(JOHN)          
I mean, the, the theory is, is central sensitization, and that's, the, you know, the find of things, like very elevated levels of substance p, which is a neurotransmitter in the, in the spinal fluid, of people with, with fibromyalgia.  That's a very striking abnormality.  And also finding on functional MRIs, that areas light up, much more than other people with the same amount of stimulus.  In the areas associated with pain light up.  So there is an abnormality and how sensory neurons, their signals are interpreted by the brain.  Exactly how that is, I don't think anybody knows.  So that's as far as we've gotten.

(MARK)        
Yeah, see, I think that's still a symptom.  You're hypersensitive to stimulation, but the question is, why.

(PETER)        
Well, I was just asking, I guess you're right.  But I was saying, looking for some objective evidence, and you've given me that.  That there's something there, you can find it on an scan.  All right, let's pause just for a moment here, and try to sum up what we've been discussing.  We've covered an awful lot of groundwork here.  Fibromyalgia is an important diagnosis to nail down.  There are specific criteria, so it's important to see someone who understands and knows the disease, then get an accurate diagnosis.  It is important not to give up.  That being said, Judy is told she has fibromyalgia.  What does it mean to her life right now, and then going forward?  Mark?

(MARK)        
Well, I think, you know, as I hear Lisa talk, she's stuck.  She's, like, had this collection of symptoms.  I take some medications that help me a little bit, but it really doesn't get to the root of the problem.  How do I get to the root of the problem?  And I would say to you, there is an approach, it's called functional medicine.  It's a way of dealing with the functional syndromes that we see in our society that are increasingly prevalent, to help us get to the root of it, and there's a way to navigate using a different sets of lens, a different set of looking at things.  It's maybe not all perfectly analyzed in the research yet, but it's there and possible to actually work through a lot these things by improving nutrition, improving things like exercise, by dealing with stress better, by nutritional therapies.  By sometimes even direct therapies on things that might be a cause, whether it's vitamin D or thyroid or mercury poisoning or irritable bowel that's driven by overgrowth of bacteria.  There's ways of actually thinking about these things in a systemic way, and getting to the root of it.

(JOHN)          
So I guess I, I look at it a little bit differently.  Maybe, maybe not, I'm not saying, you know, we have, we have the answer.  I think that, we, we, the idea that there are some lifestyle issues that are very important for this disease, I think is absolutely correct.  And I think if you're addressing those, that's, that's very good.  And a lot of people will improve with those.  Things like, you know, exercise, aerobic exercise.  Very important.  Things like the proper amount of sleep.  Things like trying to pace yourself, you know, according to what you can do.  All those things are very, are real, and those are mainstream.  Those are, those are not through special lenses.  Those are, you know, what a lot of people will do.

(LISA H.)       
One of the things I think that we do poorly, is to carry out that effective communication.  We tell people, change your lifestyle, eat better, get more rest.  How do you actually do that?

(PETER)        
Lisa?  Once they gave you the diagnosis, of fibromyalgia, how did your therapy change, what did you start doing, and what effect did it have?

(LISA S.)        
Well, I had to adjust how I gardened, and how I cleaned house, and how I did all of those things, and just stop, when things started to hurt, instead of keep going, keep going.  You know, there's nothing I can do about work.  I have to work, so that's there.  So.

(PETER)        
What about medication?

(LISA S.)        
Medications, well, I've tried several different ones.  And right now I have Cymbalta and Celebrex and last Friday I just changed my drugs to, for the evening, taking Ambien instead of Flexeril.

(LISA H.)       
nteresting that she didn't mention gabapentin or pregabalin.

(LISA S.)        
And I haven't had either one of those.

(LISA H.)       
The two mainstays of therapy.

(PETER)        
Tell me about diet and this disease.

(LISA S.)        
She hasn't had any nutritional counseling.

(MARK)        
Well, now, clearly, you know, diet has a huge role in our health.  But medicine, we pretty much ignore diet, other than to tell people to eat low fat diets who have high cholesterol.

(LISA S.)        
Well, I mean, I've read on the Internet about the things you should leave out, with fibromyalgia, is pretty much every category.  I mean, honestly.

(PETER)        
Drink water.

(LISA S.)        
It was really, yeah.  Drink water and eat lettuce.

(MARK)        
Well, it's very simple.  You know, if you real food, and stay away from processed food.  If you eat low on the sugar chain, meaning, cut out most processed food and sugar.  And in some patients, eliminating food allergens or gluten, can be very helpful.

(PETER)        
Judy was started on ((milnazepram)).  In addition, she got caffeine out of her diet.  We got most of her refined sugar out of her…

(LISA H.)       
I'm sorry, did you say lorazepam?

(PETER)        
No, ((milnazepram)). 

(LISA H.)       
((milnazepram))

(PETER)        
And she's exercising as often as she can. She's getting acupuncture.  She's getting a regular sleep pattern as much as she can.  And she still has pain, but, she says it is now bearable.  She's been able to go back to work, and participate in social events.  Is this typical for somebody with fibromyalgia?

(FREDERICK)          
It's, it's typical to have all these things done.  It's not necessarily typical or not typical of the outcome of, of the illness, which is really sort of individual and is determined by, by many different factors.

(PETER)        
John, is it typical?

(JOHN)          
Well, it's, it's typical that there is some improvement.  I mean, I think that this is not a hopeless disease, and it's important for people to know that.  That you can get some improvement.  But it's, it's not a predictable course.

(PETER)        
How much research is being done on this disease, other than trying to sell drugs?

(JOHN)          
Well, most of the research…

(MARK)        
Not much.

(JOHN)          
…is, is drug research.

(MARK)        
Not much.

(PETER)        
So what new drugs are in the pipeline?

(FREDERICK)          
Well, I know, I think actually a lot of research has been done into the mechanisms of the disease and the illness.

(PETER)        
Let's pause here for another moment, sum up what we've been talking about for the past chunk of the show.  There is no known cure for fibromyalgia, but it is possible to return to an active life, using multiple treatments and probably lifestyle changes as well, complicated and is multifactorial.  How are you doing, all told, at the end of the day.

(LISA S.)        
Most days are fine, I'll get through it.

(PETER)        
So is it fair to say…

(JOHN)          
You push through it.

(PETER)        
…since most days are fine, they're better than they were?  Or is it no better?

(LISA S.)        
I'm sure they're better than if I wasn't taking any of these drugs.

(PETER)
You know, we could continue this all day.  I wanted to thank you so much for joining us.  For one thing, you're in pain.  And for another thing, it can't be all that easy to talk about this.

(LISA S.)        
It's hard.

(PETER)        
Nice discussion from all of you.

(LISA S.)        
Thank you.

(PETER)        
Thank you so much.  All right.  We're going to sum up what we've talked about today, see if we can put this all together.  Fibromyalgia is an important diagnosis to nail down.  There are specific criteria, so it is important to see someone who knows the disease and get an accurate diagnosis.  And it's important not to give up.  While there's no known cure for fibromyalgia, it is possible to return to an active life using multiple treatments and lifestyle changes.  And the final message is this.  Taking charge of your health, means being informed, and having honest communication with your doctor.  I'm Dr. Peter Salgo and I'll see you next time for another second opinion.

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