Validating Fibromyalgia: Behind the Pain
Full-Length Doctor's Interview Reported February 10, 2003
In this full-length
doctor's interview, Daniel Clauw, M.D., explains how fibromyalgia patients'
pain processing areas of their brains may be enhanced, causing high pain
ratings. Ivanhoe Broadcast News Interview with Daniel Clauw, M.D.,
Rheumatologist, University of Michigan Health System, Ann Arbor, Michigan,
What is life like for patients with fibromyalgia?
Dr. Clauw: Patients with fibromyalgia are, on average, fairly functionally
impaired by their symptoms, probably in part, because it causes so many
different symptoms. They not only have pain throughout their entire body,
but very frequently will have fatigue, memory problems, and a number of
other symptoms. The combination of all those symptoms impairs people as much
or more than any other rheumatic disease.
I know life can be so frustrating for them. What is it about the disease
that makes things so frustrating?
Dr. Clauw: There are a couple of things. One is the unpredictability. One
day they may be able to function fairly normally and then the next day be
quite impaired. The other is that in many cases, people around them, whether
it be their spouse, their children, their co-workers, don't necessarily
believe that they're quite as symptomatic as they are and thus they have
this problem with sort of credibility.
How do doctors generally diagnose fibromyalgia?
Dr. Clauw: Fibromyalgia, like most conditions, is diagnosed primarily based
on a history and a physical exam. The history is that the person has had
pain throughout their entire body for some period of time and usually is
accompanied by other symptoms, as I said, like fatigue, memory problems,
headaches. Then, a physical examination is performed to exclude other
conditions that might simulate fibromyalgia and also to look for the finding
of tenderness on examination.
Is it something that's easily diagnosed? What do patients go through to
get a diagnosis?
Dr. Clauw: Through clinicians that are familiar with fibromyalgia, it's
fairly simple to diagnose fibromyalgia. But, there are a lot of clinicians
that either are not familiar with the entity or don't necessarily believe in
the condition. That's why in many cases people will see an average of six to
eight physicians before they are ultimately diagnosed with fibromyalgia.
Tell me a little bit about your study. What were you looking at?
Dr. Clauw: We were using functional MRI to try to determine why individuals
with fibromyalgia are so tender. So, the premise of the study was that
because of the fact that fibromyalgia is defined, in part, on the basis of
tenderness, we could use functional MRI. We could apply a stimulus to the
thumb that in the normal person would be not felt as being very painful but
we knew in a fibromyalgia that would be felt as being painful. So, we took
advantage of that and we compared fibromyalgia patients to normal controls
by presenting different types of stimuli to the thumb and looking at how the
brain interpreted those stimuli or how the brain reacted to those stimuli.
What did you find?
Dr. Clauw: We found that when we gave the fibromyalgia patients a low
pressure stimulus, which in them was quite painful, but in a control person
that didn't have fibromyalgia was barely felt as even being detectable, that
the fibromyalgia patients had the same areas of activation in the brain that
we know are involved in pain processing, as it took a much higher intensity
stimulus in the controls to get the same type of activations.
The way to say that very simply?
Dr. Clauw: Basically, what we found was that the fibromyalgia patients
reported pain when we gave them a low intensity stimulus and that that was
also found in the MRI that when they said they were experiencing pain when
we gave them a low pressure stimulus. We could see the exact same kinds of
activations in the brain as we know are involved in pain processing and in
this study, we saw in the control group that was given a very high pressure
stimulus.
What does that mean? What does that tell you about what's going on in
these patients?
Dr. Clauw: The simplest interpretation of this study is that when patients
with fibromyalgia say that they're experiencing pain, they're experiencing
pain, and in fact, that probably is the major finding of the study. It
helped corroborate that when patients with fibromyalgia tell us that they
experience pain when they're touched or when they have a very light type of
stimulus to their skin or other areas of the body, that in fact we could
actually objectively see areas of the brain be activated that we know are
involved in pain processing.
What does that mean for patients as far as their life or their future?
Dr. Clauw: Again, at the simplest level, what this did for patients is help
validate that when they're experiencing these symptoms that they really are
having these symptoms, because again, in some cases, people with
fibromyalgia aren't believed because they outwardly look good. From a
scientific standpoint, this has been one of many different types of studies
that have all lead us to believe that the problem in fibromyalgia is some
type of abnormality in how the central nervous system processes pain. If you
will, fibromyalgia patients have the volume control turned up too loud on
their pain processing areas of their brain, and so further work now can be
done to sort of hone in on exactly what areas of the brain might be involved
in causing these abnormalities in fibromyalgia.
What is the next phase of your study or next step in your research?
Dr. Clauw: This work and other work that's been done by others has really
narrowed us into the fact that the abnormality in pain processing and
fibromyalgia is somewhere between the spinal cord and the brain, so our
future studies are trying to narrow that down. Is it in the spinal cord? Is
it in the brain, and if it's in the brain, what areas of the brain seem to
be most involved?
I know fibromyalgia patients do so much convincing trying to get people
to believe that they really have this pain. What has been the response from
patients when they heard this?
Dr. Clauw: Patients have found this study to be very gratifying because of
the fact that it helps validate what they've been saying all along, whether
it's been to their doctor or to their spouse or whomever. This study has
helped establish that when people with fibromyalgia say they're experiencing
pain, they in fact are experiencing pain.
It must be quite interesting for you. What was your reaction when you
were able to tell them that you know why this is happening?
Dr. Clauw: This is what we hypothesized that we would find, and for someone
who does work in this area, this wasn't a big revelation. We totally
expected that this is what we would find and we did. That was our hypothesis
and we basically proved our hypothesis, so it hasn't been as much of a
revelation for us because there were a number of other pieces of evidence
that were leading to this same conclusion, but is has been, I think, very
helpful for the patient community.
Would this FMRI sort of used as a diagnostic tool for fibromyalgia
patients as opposed to just testing for tenderness?
Dr. Clauw: FMRI could be used as a diagnostic tool, but essentially what we
found is that when the patient tells you something, that's exactly what is
going on, so there really wouldn't necessarily be a need for doing a very
expensive imaging procedure. All you have to do is listen to the patient
when they tell you they're tender, they're tender.
What are some of the other similar studies that you've done? What other
areas are you finding that FMRI is showing changes in the pain processes?
Dr. Clauw: Our group believes that there are a lot of chronic pain patients
that have fundamentally the same problem that fibromyalgia patients have in
that the primary reason that they're having pain is not because there's
something wrong in the area of the body where they're experiencing pain, but
instead there's something wrong with the way the central nervous system
interprets pain. So, we're pursuing these same types of studies in areas
like low back pain and irritable bowel syndrome (IBS) and other conditions
to try to determine if the same types of abnormalities that we found in
fibromyalgia are present in these other types of pain syndromes that are
more localized, that just involve one area of the body.
Again, what does that mean for treatments? Does that help find other
treatments, better treatments for these groups?
Dr. Clauw: What we eventually hope is that it helps physicians or clinicians
when they're confronted with an individual patient who has chronic pain
differentiate whether that pain is occurring because of some problem in the
peripheral structures, like for example the muscle or the joint, or whether
their pain is occurring because of some problem in the way the central
nervous system is processing pain because the medications and the non-drug
therapies that work for peripherally based pain are in some cases quite
different than the types of treatments that work for centrally based pain.
One of the big reasons to pursue this line of investigation is to eventually
help clinicians decide whether the person that they're treating has a more
peripherally based pain syndrome in which case common types of medications
like non-steroidal anti-inflammatory drugs might be quite effective, or
whether they have a more centrally based pain syndrome where different
classes of medications and different types of non-drug therapies might be a
more effective treatment.
Are people with fibromyalgia born this way, or does it seem to develop
over time?
Dr. Clauw: We don't yet know whether people who have fibromyalgia are born
with abnormally sensitive pain processing systems or whether they develop it
some times over the course of their lifetime. The premise is that they
develop it some time over their lifetime but they have some type of genetic
predisposition to develop this type of problem. The studies that our group
is doing and that other groups are doing now are more longitudinal studies
that follow people over time and as they are developing symptoms rather than
the type of study that we just completed where we just look at individuals
with established fibromyalgia at a single point in time.
I know there was a study recently about pregabalin for treating the pain.
What other sort of new research is going on as far as treatments go?
Dr. Clauw: Over the last couple of years, for the first time ever, large
pharmaceutical companies are interested in studying fibromyalgia. There are
at least three companies that have ongoing treatment programs in
fibromyalgia, and this will ultimately help the patients with fibromyalgia a
great deal, because right now, one of the problems with respect to treating
individuals with fibromyalgia is that there are only a few drugs that work
and they don't work incredibly well. So, whether it be the study, the
pregabalin study, or other studies that are ongoing, any new medications
that work in fibromyalgia will be a big help in treating people with
fibromyalgia.
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