Episode 04: What is Fibromyalgia? Part 1

What is Fibromyalgia?
Part 1

Tami’s Viewpoint After a Decade as a Patient and Coach

As of today, we don’t really know what causes fibromyalgia, and there is no cure. However, I do believe that there is a lot that can be done. I believe your symptoms can be managed so well that you can live the life you want to live. Knowledge is power. Find out more about the background and history of fibromyalgia, as well as the cutting-edge scientific study that is re-defining how we think about and treat this disorder in today’s Foundations episode.

Key Points

  • Fibromyalgia is NOT a “woman’s disease.”
  • Fibromyalgia is NOT a new disease. You will find the first full description of fibromyalgia and its symptoms in 1816.
  • Fibromyalgia is MORE than a chronic pain condition.
  • There are four primary symptoms of fibromyalgia, as experienced by the patient.

Links & Resources

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Research Studies

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You’re listening to the Fibromyalgia Podcast, Episode 4.

Welcome to the Fibromyalgia Podcast!

I’m your Coach, Tami Stackelhouse. In this episode, I want to talk a little bit about what fibromyalgia is. I realize that for many of you this may be a little bit basic, but I thought it would be a good idea for us to all start on the same page. In the next episode, Episode 5, I’m going to have Dr. Ginevra Liptan come and talk about what she believes fibromyalgia is from her perspective as a physician, as a researcher, and as a specialist.

In this episode, I’m just going to give you—as a patient, as a coach, and as a layman, so to speak—some of the background, some of the history, and what I believe about  fibromyalgia.

[01:36]  First and foremost, I believe that there is a lot more we don’t know about fibromyalgia than we do know. I really believe, like I mentioned in Episode 1, it’s the elephant in the parable of the elephant and the blind men. We have a lot of researchers who are seeing pieces of the puzzle—pieces of the fibromyalgia elephant—but there’s a lot we don’t know, and so far I haven’t seen anything that ties all those various pieces together.

[02:09]  When somebody asks me what fibromyalgia is, I usually answer very simply, “It’s a chronic pain condition.” I think that a lot of times it can be very overwhelming to them, if we start going into the in-depth story of what fibromyalgia is, but I think everybody can understand that it is chronic pain.

Fibromyalgia does vary a lot from patient to patient, which is one of the challenges. We don’t always look the same, and we don’t always respond in the same way to treatments. It can be challenging for doctors to diagnose, and it can be challenging for doctors to treat, because of that.

[02:51]  As of today, as I record this, in February 2019, we don’t really know what causes it, and there is NO cure. Now, I do believe that even though there is no cure, that there is a lot that can be done. I believe you can get to the point where your fibromyalgia isn’t really impacting your life, and you can live the life you want to live without fibromyalgia impacting it that much. Of course, it depends on a lot of things. I’ve talked about this in almost every episode. How much better you feel, varies from person to person. It can depend on a lot of things, from your resources, to where you live, to what other illnesses you have, how long you’ve been diagnosed, and all of that.

[03:38]  The question of “What is fibromyalgia?” is a complicated one to answer. I find that if someone has a simple answer, it’s most likely not fibromyalgia. If you talk to someone, and they say, “Oh, all I had to do was take this special magnesium supplement and my fibromyalgia went away.” That to me is not fibromyalgia; that is a magnesium deficiency, and the symptoms are very similar. Same thing with thyroid. Believe it or not, all of the symptoms of low thyroid are exactly the same as fibromyalgia. If you treat your thyroid and your fibromyalgia goes away, most likely, it wasn’t fibromyalgia. It was actually a thyroid condition. So, fibromyalgia, to me, is something way more complicated.

[04:28]  As far as statistics go, I’ve seen anywhere from 2-6% of the population being diagnosed with fibromyalgia. That is several million people. That’s a lot. Some estimates say that 80% of these are women. Others say the ratio is more 2-to-1, women to men. I think it’s probably closer to equal. It’s just that men tend not to go to the doctor as often, so we are less likely to catch it. Doctors are less likely to diagnose men with fibromyalgia because it is seen as a woman’s disease. I think there are a lot of factors there that keep us from knowing for sure the ratio of men to women.

Assuming the basic statistics that everybody puts out there, let’s say 3% of the population (which is conservative) with 80% being women. That means 1 in 21 women have fibromyalgia. If you go with more aggressive statistics like 6% of the population having fibromyalgia, it could be as many as 1 in 10 or less. You probably know a lot more people with fibromyalgia than you think you do.

[05:52]  It really does affect a lot of us. In terms of men, we are looking at, again, depending on the statistics, it could be either the same or it could be 1 in 40 or 1 in 80. It’s still a lot. Here in the United States, where I am, all of those numbers mean that there are anywhere between 6-13 million people in the United States with fibromyalgia. Obviously, as a Coach, I can’t help all of those one-on-one, which is one of the reasons for this podcast! I want to come to your house and coach you where you are and see what I can do to help.

[06:29]  Here’s another interesting statistic. It might give you an idea of why it can be so challenging to find good help. On a greater scale, there are at least 100 million people in pain, here in the United States, and there are only around 4,700 pain specialists. So, you do that math, and it works out to more than 21,000 patients per pain specialist. Obviously, that just doesn’t work! That can be why it is so challenging to get help.

[07:09]  What about the history of fibromyalgia? In many circles it seems to be a new illness, but it’s been around a long time. In the early 1800s in medical literature, there was a condition that they called muscular rheumatism. That was basically what we are looking at as fibromyalgia today. In 1816, you will find the first full description of fibromyalgia and its symptoms from a doctor from the University of Edinburgh, Dr. William Balfour.

I had the chance to go to the University of Edinburgh a year or so ago. It was super interesting to be there at the Old Medical School, where I assume he practiced, and think, “Ahh, this is kind of where it all started in 1816—200 years ago!” He first described the tender points in fibromyalgia—those spots that, if you press on them, makes you want to shoot through the roof—that a lot of doctors use to diagnose fibromyalgia. Those tender points were described in 1824. So, again, almost 200 years ago.

[08:26]  They went through a lot of different name changes; in 1976, the name was finally changed to fibromyalgia. We have had “fibromyalgia” now for almost 50 years. The diagnostic criteria on how to diagnose fibromyalgia was first outlined in 1990. When I talk to somebody who says they’ve had fibromyalgia since 1990, I am always super impressed, because that was the early stages. They had to have been seeing a very progressive doctor, who is very up on their research and resources, to be diagnosed that long ago.

[09:15]  What are the symptoms of fibromyalgia? Technically, specifically, what are the symptoms that we are looking at when we are being diagnosed? I believe there are four primary symptoms. Now, there’s a lot of stuff that can happen because of these, and there’s a lot of things that happen with comorbid conditions. Those are other illnesses that you have alongside fibromyalgia; fibromyalgia never comes by itself. There are lots of other things that go along with it, but fibromyalgia itself has four main symptoms.

Symptom #1: The widespread body pain. Hurting everywhere for no particular reason. That’s a biggie!

Symptom #2: Unrelenting Fatigue. This is a fatigue that is different than just being tired. I like to use the analogy of your cell phone. You charge it ALL day long. It says it’s at 100%—and then it only lasts an hour. That’s the kind of fatigue that we have—and there are reasons for that I will get to.

Symptom #3: Brain Fog. Those of you with fibromyalgia know what I’m talking about. This is one of the reasons why every podcast episode also has a show notes page! On FibromyalgiaPodcast.com, I will actually list all of the resources that I mention, all of the goodies, because I know brain fog isn’t just about forgetting things. It also means having trouble processing. We can have ADD-like symptoms with fibromyalgia, and that’s all part of this brain fog.

Then, Symptom #4: This is very particular to fibromyalgia—and if you don’t have this, you likely don’t have fibromyalgia—and that is Unrefreshing Sleep. That’s where you sleep all night, and you wake up and are not refreshed. It’s as if you didn’t sleep at all; sometimes you even feel worse. That is a hallmark of fibromyalgia.

[11:13]  Now, as I said earlier, fibromyalgia never comes by itself. There are usually lots of other things that happen with it: digestive issues, headaches. There’s usually thyroid issues, adrenal issues, sleep conditions, and all kinds of other stuff. But those four things I just mentioned: the widespread body pain, unrelenting fatigue, the cognitive issues or brain fog, and the unrefreshing sleep are the four key symptoms of fibromyalgia.

[11:44]  So, how is it diagnosed? For those of you who may not know—I also find that a lot of doctors are really behind on this—before 2010, almost ten years ago now, doctors used the tender point exam. There are eighteen tender points in the body. There are some on the back of the neck. There are some on the front. Some on your elbows, hips, lower back, knees… That when you press on those points, it hurts more than it should. To diagnose fibromyalgia, ten years ago, you had to have eleven out of eighteen of those tender points, and pain in all four quadrants of the body.

[12:36]  That means you had to have pain both above the waist and below the waist, pain on the left side and pain on the right side. You couldn’t just have pain in your legs and be diagnosed with fibromyalgia, because that was all lower body. You had to have pain in all four quadrants of your body to be diagnosed, and eleven of eighteen tender points.

I have to stop here for a second and just say—a lot of doctors and a lot of people still think we are using the 2010 diagnostic criteria! A lot of people are still thinking you have to have eleven tender points. A lot of people are thinking you have to have pain in all four quadrants. That has not been the case for almost ten years now. We need to get up to date, both our doctors and us as patients.

[13:31]  So, since 2010, the diagnostic criteria looks at your pain and symptoms over the last week. Yes, it does look at the number of tender points you have, but it’s also looking at the severity of your fatigue, whether you wake up feeling refreshed or not. It’s also looking at your cognitive problems—so your memory and ability to think—and looking at other general symptoms.

It’s also looking to see whether or not these symptoms have lasted for at least three months at a similar level. So, for instance, if you had a car accident last week maybe you meet all these criteria but you’ve only had it… it’s only been a week. That wouldn’t qualify you as having fibromyalgia. But, if you had that accident and are having all these symptoms, and it was a year ago—and it’s been the same for at least three months—that would qualify you as having fibromyalgia.

[14:30]  The other aspect is really making sure that there is no other health problem that would explain the pain or explain the symptoms. As I mentioned earlier, things like a magnesium deficiency, or a thyroid condition, or lupus, rheumatoid arthritis, all of these other things. Just really making sure that we can’t explain this in some other way.

There have been some doctors lately, even more recent than 2010, who are saying you can have one tender point and have fibromyalgia. There are some doctors who are saying we can just have you fill out this questionnaire and be able to diagnose you with fibromyalgia.

[15:12]  There is also a fibromyalgia blood test that has been around since about 2013. [Edit: It’s actually been around since 2012!] I talked about it in my first book, and it had been around a while at that point. You can find information on that at TheFibromyalgiaTest.com. This fibromyalgia test, the FM/a Test, is being covered by some insurance, not all. I’ve had some clients that were covered and some clients that were not. It can be expensive, if it’s not covered. It’s looking at particular immune system markers in your blood to see if you have fibromyalgia or not. It’s supposed to be as accurate as the test for HIV, but it’s only been around for about six years. It’s only been used on a limited basis, so we won’t really know the accuracy of this until it’s been a little more widely used and has been used for longer. It’s still something that’s encouraging and something to definitely check out.

[16:22]  Now, with fibromyalgia there’s actually a lot of science. A lot of those researchers that I was mentioning, feeling around the “elephant” to see their particular part of it. Here are some of the bits of science I find particularly find interesting. Remember, this is not a comprehensive list by any stretch of the imagination. These are just the things that I personally find particularly interesting and want to share with you.

[16:53]  Number One: There was a study done a while back looking at fibromyalgia versus chronic fatigue syndrome and looking at mitochondrial dysfunction. For those of you who don’t know, your mitochondria are your little power cells in each of the cells of your body. It’s like the little batteries inside your cells. These little batteries take the energy we bring in, in other words the food that we eat, and turn it into energy that our bodies can run on.

In these mitochondria, inside these tiny little batteries inside of our cells, with fibromyalgia they are finding that there’s less ATP, which is Adenosine Triphosphate. This is the energy your body runs on. There is literally less energy in your batteries. Remember, I was talking about that cell phone that you charge all day and then it only lasts an hour? That is literally what are bodies are like. Our little batteries get fully charged, but they don’t hold as much. There’s less ATP in there. There’s less CoQ10, Coenzyme Q10, which is used by your body in this process of converting fuel to usable energy—converting food to energy. There’s less mitochondrial DNA, and there’s been some studies that have shown mitochondrial dysfunction even in the skin of fibromyalgia patients.

[18:30]  The thing I find super, super interesting about this is that, when they were comparing fibromyalgia to chronic fatigue syndrome, there were actually more things wrong in fibromyalgia than there were in the chronic fatigue patients. Even though we are talking about energy here—and the hallmark of chronic fatigue syndrome is fatigue—they actually had more things that showed up as normal than we did in fibromyalgia. It’s also an indicator that maybe fibromyalgia and chronic fatigue ARE two separate illnesses and not a continuum of the same illness, like some people suggest. It kind of implies maybe we are talking about two different things, because there are differences between the two illnesses in the study.

"There seems to be more mitochondrial dysfunction in fibromyalgia than in chronic fatigue syndrome." ~ Tami Stackelhouse

[19:20]  Another thing, another bit of study I find super interesting, is that fibromyalgia is really a central nervous system disorder. What they have found is that fibromyalgia patients actually process pain differently. What I mean by that is, for instance, if you squeeze the thumb of a patient with fibromyalgia with a certain amount of pressure, we will actually experience twice as much pain as someone without fibromyalgia at the same amount of pressure. It’s like we have a 2x pain response. Let’s say we use just generic units and give a pressure of <1>. To us with fibromyalgia, it feels like <2>. Where someone who doesn’t have fibromyalgia, it would still just feel like <1>. If you ever feel like, “Oh my gosh! My pain response is not normal!” You are right! We do have a different pain response.

[20:27]  The other thing that is super interesting is they did functional MRIs—which is where they do an MRI as not just a static MRI, like taking a picture, like a photograph—a functional MRI is where you’re actually doing things while they are watching your brain, so it’s a little more like taking a video instead of a snapshot. When they would give the fibromyalgia patient some kind of painful stimulus, more areas of the brain light up in fibromyalgia than light up in somebody who does not have fibromyalgia. So, literally, our brains experience pain in a different way. There are more areas of the brain that light up. More of our brain is experiencing that pain. Super, super interesting to me. 

"More areas of the brain light up when someone with fibromyalgia experiences pain." ~ Tami Stackelhouse

[21:19]  One study found that there were extra nerve endings in the hands of fibromyalgia patients. They found that these nerve endings actually control blood flow. The idea is that those nerve endings are not managing blood flow properly, which means that blood flow is not getting to our muscles properly—which could be causing the muscle aches—not getting to our brain properly—which means we don’t think as well. So, there is one theory that this is part of the problem.

"Extra nerve endings in the hands of fibromyalgia patients may result in mis-managed blood flow, causing body pain, fatigue, and brain fog." ~ Tami Stackelhouse

[21:55]  There was another pilot study that showed that small fiber neuropathy was present in about half of the fibromyalgia patients that they looked at. Small fiber neuropathy is where your small peripheral nerves, like in your hands and your feet, are experiencing degenerative pain… lots of different things. That’s where you might be feeling tingling or burning sensations. One study showed that at least half of the fibro patients they looked at had small fiber neuropathy, and they’re thinking that this may be the thing that is causing the pain.

Now, I believe that you can have both. I have one client who was diagnosed with small fiber neuropathy and fibromyalgia both. You can have both things. One can lead to another, but there are some things going on nerve-wise.

[22:51]  Another study I find particularly interesting, because I fit into these demographics—a clinic took all of their fibromyalgia patients, and as they were coming in they did x-rays on their necks just to see how their necks looked. They found that 90% of their fibromyalgia patients had either a straight neck or their neck curved the wrong direction.

Now, if you don’t know, your neck should have a little bit of a curve, and that keeps your head on a little bit of a spring. When you’re walking, or running or just living life, there’s a little bit of cushion there to protect your brain and keep your body happy. If you have a straight neck, it’s a little bit more like being on a pogo stick. There’s no curve. There’s no give. It can definitely cause more headaches and things like that when you have a straight neck.

There seems to be some things going on with the neck, nerve impingement, pinching the spinal cord as it comes down. Your very top vertebrae, the brain comes down inside of it a little bit. If your top vertebrae isn’t aligned correctly, you could actually be squeezing your brain, which causes the headaches and other symptoms, dizziness, and things like that. So, there seems to be something going on in the neck.

[24:14]  We also know there are immune system issues, like the immune system is getting stuck. Have you ever had a computer where you were loading your program and it got to 80% and then it sat there for hours and never finished? Our immune system can kind of be like that, where our repair system gets stuck and never really finishes. There are some things like that they have found with fibromyalgia.

[24:42]  Now, it’s also super interesting when you start looking at sleep in fibromyalgia. Some people consider fibromyalgia to be a sleep disorder. There’s one expert who says he can diagnose fibromyalgia simply by looking at people’s brain waves when they sleep.

There was a study done—now this study was actually done looking at sleep, not looking at fibromyalgia—they took healthy college students and kept them from getting in to the deeper levels of sleep. As they would start to get into the deep levels of sleep, they would play music, wake them up, and then let them keep sleeping. After not very many days, those college students started to experience body pain and brain fog, and fatigue like you wouldn’t believe. Basically, they started experiencing fibromyalgia symptoms. There’s a lot with fibromyalgia and sleep. We have these awake brain waves that intrude on our sleep brain waves. They call it alpha-delta brainwaves because the alpha, the *awake* brain waves, are showing up when you should be having slow delta sleep waves.

[25:59]  We also kind of get stuck in fight-or-flight. It’s like our bodies are looking out for sabre-toothed tigers the whole time, and not getting into the deep levels of sleep. It’s like we are like sleeping with one eye open all night long. There is definitely sleep stuff going on with fibromyalgia.

"We get stuck in fight-or-flight and don't get into the deep levels of sleep. It's like we are sleeping with one eye open all night long." ~ Tami Stackelhouse

[26:17]  There’s lots of digestive stuff. There have been some interesting theories about leaky gut or the microbiome—the bacteria that you have in your gut that help digest the food, keep it moving along, keep your body healthy and happy. They have even done, believe it or not, fecal transplants—and that is really what you think it is! It’s taking somebody else’s poop and using it as an enema to replant healthy bacteria into a new person’s body—where that has actually reversed some symptoms.

[27:02]  There was also a study in Israel, that has been repeated in other places, where they took fibromyalgia patients and put them into a hyperbaric oxygen chamber. If you’re not familiar with what that is, it’s what they use when divers go diving and come up too fast. They put them in this hyperbaric oxygen chamber. It’s basically an oxygen chamber with pressure, so it is pushing that oxygen deep down into your cells.

They took fibromyalgia patients and gave them 20 hyperbaric oxygen chamber sessions in a month: 20 sessions in 30 days. Some of those patients, at the end of those 30 days, no longer qualified as having fibromyalgia, which I think is super fascinating. So, this idea that maybe our bodies are not getting the oxygen they need. The sad thing about this study that was done, is that they didn’t follow those patients. We don’t know what happened! We don’t know if that totally reversed their fibromyalgia and they never had symptoms again—which I would suspect is probably not true—but we don’t know.

What I expect is that they had a remission of their symptoms and then they would need to keep up those oxygen treatments, however often, to maintain that. I think there’s actually something where our bodies don’t work properly, and just 20 sessions in 30 days isn’t going to reverse or totally change how our body functions. But, there might be some kind of a maintenance plan to keep up those things. Again, we don’t know because they didn’t follow those patients. I have heard through the doctors and researchers I know, that they are redoing that study, where they will be following the patients to see what happens at the end of those 30 days—what happens a year afterwards, for instance.

[29:15]  There’s lots of other things too, with hormones, nutrition, neurotransmitters, and other conditions that happen with fibromyalgia. Lots and lots of science. Fibromyalgia—if you haven’t caught this by now—fibromyalgia is definitely not “all in your head”! Except from the standpoint of the fact, that really EVERYTHING is “all in your head” because if you didn’t have a brain you wouldn’t exist, and the fact that our brains do process things differently. If somebody ever tells you “fibromyalgia is all in your head” you can say, “Yes, yes it is. My brain actually doesn’t work right!”

So… that is my overview of what I believe fibromyalgia is and some of the science that I find super fascinating.

[50:30]  In our next episode, I have invited Dr. Ginevra Liptan to come share her perspective on what fibromyalgia is. She is the author of The FibroManual (affiliate link). She is the medical director of The Frida Center for Fibromyalgia, and she has done some research with Oregon Health and Science University on fibromyalgia and some of these interesting things we have been talking about. I hope you’ll join us again and hear her perspective.

In the upcoming weeks, we will also be talking about fun things like some of the research behind coaching, how a Fibromyalgia Coach can help, self-care, and some other goodies.

See you next time!

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