How Fibromyalgia Affects The Lives And Relationships Of Patients Diagnosed
Presenter: Neal
Guest: Dr. Kevin White
Guest Bio: Dr. Kevin White, a world authority on the condition known as Fibromyalgia. He is spreading the word about a new scanthat actually lets doctors “see pain” in the brain, where fibromyalgia resides. Dr. Kevin White has a medical degree, training in two specialties and a doctoral degree in medical research. He is an internationally known expert in the treatment and research of fibromyalgia. He is the award-winning author of BREAKING THRU THE FIBRO FOG: Scientific Proof Fibromyalgia Is Real. May 12 is International Fibro Awareness Day.
Segment Overview
Dr. Kevin White discusses what Fibromyalgia is and how it affects the lives and relationships of patients diagnosed. He also talks about the attitudes of some healthcare providers concerning the disease and how those attitudes hinder diagnosis and treatment.
Transcription
Health Professional Radio – How Fibromyalgia Affects The Lives And Relationships Of Patients Diagnosed
Neal Howard: Hello. You’re listening to Health Professional Radio. I’m your host, Neal Howard. Our guest today is Dr. Kevin White. He’s a world-renowned authority on a condition that is estimated eight million Americans have been diagnosed with. The condition is fibromyalgia and it’s a disease that’s characterised by chronic widespread pain and fatigue. He’s also an author. He’s the author of the book, Breaking Thru the Fibro Fog: Scientific Proof Fibromyalgia is Real. Welcome, Dr. White. How are you today?
Dr. Kevin White: I’m fine. Thank you very much for having me, Neal.
Neal: It’s great to have you here with us. It’s estimated that there are eight million Americans who have been diagnosed with this disease called fibromyalgia. Doctor, what exactly is fibromyalgia?
Dr. White: Fibromyalgia is a chronic pain condition in which patients basically hurt everywhere. It’s not just pain, however. They have other symptoms as well including chronic widespread tenderness and people just hurt. They’re very, very sensitive to touch and they are severely fatigued. They have other symptoms like headache. They can have bellyaches. They can feel very nauseated. They can feel like they’re having problems concentrating.
One person said it was like having the worst flu of their life but it never goes away and that’s really a feature of fibromyalgia, that it is chronic by definition. You have to have these symptoms for at least three months and most patients have these symptoms for years, and in some patients it never goes away.
Neal: So there are different levels of its duration. You can have it for some months, you can have it for years, or you could have it for a lifetime?
Dr. White: Most patients have it long term, but there are remissions and that’s something that many people are not familiar with. We did a very large study with general population study here in London, Ontario, where we surveyed 3,400 people. In fact, we found that about 3% of people per year will actually go into remission, which means that over a decade, if you extrapolate that out for a decade that means that possibly 30% will go into complete remission over a decade.
So it does go away in some people, but then you have other people whose symptoms, they’ve had it for 30 years or more and it just never seems to go away.
Neal: In America, it’s estimated that there are about eight million people that have been diagnosed with fibromyalgia. Being in London, Ontario, what are some of the statistics in your country?
Dr. White: In Canada, we found that … again in the survey that we did in London, Ontario, we found that up to one in ten women will develop this condition sometime in their lifetime. By about the age 50, 55, one in ten women will have this condition and about one in 50 or 60 men will have it by the time they get to age 55. It affects about 700,000 Canadians, roughly one out of 50 people.
Neal: What about the kids? Is it something that affects kids as well?
Dr. White: It does. In fact again, this is something that was not recognised for a long time but now there’s a lot of research in children and in fact up to 6% of children will have chronic widespread pain and fatigue. The good news is that most of them, 70%, 80% of them actually outgrow it by the time they get to adulthood. But some of them have it and carry on. In fact, when I’m giving talks, because I give talks all over the place across North America, Europe, wherever, and invariably, when I ask people, “Raise your hand if you’ve had symptoms that started before you turned 20.”
I would say 10% to 20% of the audience will raise their hands. So it can be seen in children and of course it could be very debilitating for them because they’re at a very important point in their lives, where they’re in school, they’re making social contacts, they’re in sports, they’re trying to fit in and they’re having these terrible symptoms so it can be very problematic for them.
Neal: Like you say in their formative years, having chronic pain, it causes of course stress and a myriad of other things and especially if it’s something that some doctors aren’t well quite willing to admit or treat as a real disease.
Dr. White: Yeah. You are bang on on that one. As a matter of fact, there was survey that was done, again this was done about two years ago. So in 2011, [inaudible 04:38] but roughly, one in four doctors feel that all the fibromyalgia patients are faking, outright faking, lying about their symptoms. And about 50% feel that it is primarily psychogenic. So maybe they have real pain but it’s mostly just depression or anxiety or something like that.
In fact there’s a wealth of evidence now, a scientific evidence that’s published in scientific journals that shows that in fact that’s not the case. This is a true physical, multi-systemic disease.
Neal: Now, when some doctors think that a patient is out and out faking, why would someone fake pain?
Dr. White: Again, you have these … first you say, “People fake this because they want to get something or they want to get out of something.” They talk about things called secondary gains. Like somebody will fake being in pain so they don’t have to work or they so that they get insurance money and can stay home or so they get people to feel sorry for them.
But I can tell you that what is ten times—a hundred times greater are the secondary losses that these people experience. I mean many patients with fibromyalgia, if they can’t work. They lose their jobs. They lose their income. They often have to fight to get disability payments and some never get it. They lose their social contacts. Most people, their primary social contacts are through their work. They lose that. They lose friends. They lose family. Some people … you have spouses break up because of this.
You have children who no longer associate with their parents or parents who no longer associate with their children because of fibromyalgia. There are patients who lose their [inaudible 06:27] over it. So the losses can be absolutely insurmountable. It just doesn’t make sense to me how so many people would be faking this hoping to get something out of it. You’d think that people are smart enough by now because you just don’t see … I don’t see it.
Neal: Like you say, it doesn’t make a lot of sense that someone would fake pain or a condition that first of all, is more than likely not going to get them the benefit that they’re looking for when many physicians don’t even believe that it really exists. So it would be an exercise in futility to fake having fibromyalgia. Or is it not called fibromyalgia until a physician determines that this is what the person has?
Dr. White: Again in this survey that we did, 70% of people who we ultimately diagnosed as having fibromyalgia had never heard of it before and that the average person waited 11 years before they were diagnosed. So a lot of people have this condition and they’re not getting explanation for it. They’re not getting proper treatment for it, and they’re just thinking that … they’re being told that they’re just depressed or anxious or some of them, they’re just waiting to die. They’re looking for cancer that nobody can find. They’re waiting for that other shoe to drop.
It’s very important that people are diagnosed. [Inaudible 07:55] that there was a study that was done in Denmark, again published just a couple of years ago, where they looked at people. The question is, does fibromyalgia kill you? A lot of doctors say, “Well at least it won’t kill you.” But in fact in this study, they found first of all that suicide rates are multiplied times 10.
Neal: Times 10?
Dr. White: Ten times they’re likely commit suicide. Yeah, 10 times higher. The last time I checked suicide is a form of death. But they also were twice as likely to die from heart disease and they were four times likely to die from liver disease. And here’s the real kicker: that people who had undiagnosed fibromyalgia had a 60% greater chance of dying than if they had their fibromyalgia diagnosed. So it is in fact a potentially fatal disease, especially if is not diagnosed and treated.
Neal: So fibromyalgia is not only a disease of the mind. It is not only residual pain. It is constant, chronic pain and it is actually a physical manifestation, correct?
Dr. White: Very much so. It is a multi-systemic disease. We now know that people with fibromyalgia, there are abnormalities in their immune system. There are abnormalities in the brain that we can actually see. We can actually see these in specialised scans. There are abnormalities within the spinal cord. There are abnormalities … almost every organ system is in fact involved in fibromyalgia in some way and that’s why it can be so serious and these people can be so disabled because they have a multi-systemic disease.
Neal: So fibromyalgia in itself can spawn other ailments and disorders simply by having chronic pain and stress?
Dr. White: Yeah and I mean there is a clear association between fibromyalgia and a host of other illnesses. There’s an association, for example, between fibromyalgia and rheumatoid arthritis and lupus and multiple sclerosis and thyroid disease and all these other conditions. What’s terrible is that these other conditions often are missed because people have fibromyalgia. I tell people once you have fibromyalgia, dong worry about it. You’ll never die because you can’t possibly get anything else.
The sad fact is that for many people with fibromyalgia, once their doctor diagnoses them, the doctor stops looking for other things. In fact, people are more likely to have other things, not less likely if they have fibromyalgia, and they’re more likely to have these other conditions missed. So doctors have to be more vigilant, not less vigilant once they make the diagnosis of fibromyalgia. It’s not enough to just say, “Well you’ve got fibromyalgia. We can stop looking now.” It’s not good enough.
Neal: You’re listening to Health Professional Radio. Our guest has been Dr. Kevin White, a world-renowned authority in the field of research of fibromyalgia. He’s also an author; the author of Breaking Thru the Fibro Fog: Scientific Proof Fibromyalgia is Real. It’s been a pleasure having you here with us today, Dr. White, and I’m sure we’ll have an opportunity to speak with you again about fibromyalgia.
Dr. White: Thank you very much.
Neal: Transcripts of this program are available at healthprofessionalradio.com.au.
