Episode 05: What is Fibromyalgia? Part 2 with Dr. Ginevra Liptan

Episode 5 cover art

What is Fibromyalgia?
Part 2

A Medical Expert’s Viewpoint with Dr. Ginevra Liptan

  • What is happening in the body with fibromyalgia like a chain reaction.
  • Everybody looks at the scientific and research data a little bit differently, like blind men describing an elephant.
  • The thing that most doctors focus on is the end result of the chain reaction, which is the hypersensitivity or increased sensitivity to pain. However, this is just the end result. A whole host of things are happening in concert with that pain.
  • We need more targeted research. The New England Journal of Medicine, which is the biggest and most widely read medical journal in the world, has only ever published ONE ARTICLE on fibromyalgia.
  • We can educate people about our illness by how we live our lives, with what we say and what we do.
  • If there’s one thing Dr. Liptan wants people to take away from this interview, it is this: If you have fibromyalgia, talk to your doctor about sleep. Work with them on getting better sleep. Sleep quality is key.

Dr. Ginevra Liptan had to keep her own fibromyalgia diagnosis secret, in fear of being harshly judged by her peers in medical school. While we have come a long way from the stigma that was once attached to fibromyalgia, there are still far too many of us suffering in silence. In this episode, Dr. Liptan sheds light on the latest research and treatment options that give her hope.

About Dr. Liptan

Ginevra Liptan, M.D. is a graduate of Tufts University School of Medicine, board-certified in internal medicine, and trained in functional medicine, a holistic approach that blends both western and alternative medicine. After developing fibromyalgia as a medical student, Dr. Liptan spent many years using herself as guinea pig to find successful treatments, and has fine-tuned her approach by treating thousands of patients. She is one of the few clinical specialists in the world to focus solely on fibromyalgia, and directs The Frida Center for Fibromyalgia in Portland, Oregon.

Dr. Ginevra Liptan is the author of several books (affiliate links):

To hear more from Dr. Liptan:

Links & Resources

  • Myofascial Release, particularly the John F. Barnes style: MyofascialRelease.com.
  • CBD: Dr. Liptan has many articles and videos on CBD on her blog and YouTube channel. She also has her own line of doctor-formulated CBD products at FridaBotanicals.com (affiliate link).
  • Low Dose Naltrexone (LDN): We will be doing a full episode on LDN in the future. In the meantime, visit LDNResearchTrust.org for details and research.
  • Below you will find both a full transcript and video of the episode, with the studies mentioned in the show linked in the transcript.

Research Studies

Play Video

Transcript

You are listening to the Fibromyalgia Podcast with Tami Stackelhouse, Episode 5.

Welcome to the Fibromyalgia Podcast! I’m Tami Stackelhouse, your Coach.

Today, I am talking with a friend of mine, Dr. Ginevra Liptan, who is the Medical Director of The Frida Center for Fibromyalgia in Portland, Oregon. She’s also the author of several books, including The FibroManual, which is a great manual, both for you and your doctor. In fact I think that’s a subtitle, isn’t it?

GL — Yes it is.

TS  I realized as I was saying that… Oh my gosh, I think I just gave them the subtitle! But it really is.

GL — Thank you. Thank you.

[01:23]  TS — Today, I would like to talk through, from a doctor and expert’s perspective, what fibromyalgia is.

Let’s actually back up a little bit. I’m going to spring this on you, but I hope it’s okay: You are not just a doctor; you’re also a patient. Would you share just a tiny bit of your fibromyalgia story?

[01:49]  GL — Sure. I was in medical school. I was pretty healthy. I injured my neck when I was weight lifting. It just didn’t get better—and it kind of spread to more widespread pain.

Then, I got really fatigued and foggy. I had to take a leave of absence from medical school. I didn’t even know what was going on. It took me a long time to get the diagnosis.

[02:14]  GL — And then began my struggle to find things that helped—and to find doctors or health care professionals that could help me. I remember vowing to myself that if I could get myself better enough to go back to med school, then I was going to devote my whole career to trying to help other people so they wouldn’t end up in that place that I was. I didn’t know where to go for help, and didn’t know what to do to help myself. I didn’t feel like the doctors had anything to offer me.

TS — Right… and didn’t you kind of keep that diagnosis secret because it kind of, sort of, wasn’t “okay”?

[02:52]  GL — Oh, yes. There was a BIG stigma associated [with fibromyalgia]. I mean, there still is somewhat of a stigma associated with fibromyalgia, but it was so much worse. This was almost 20 years ago now. In the medical field, when I came back to medical school, I remember hearing one of my attendings, one of my teaching doctors — who I had previously really respect his opinion — and he said in a lecture, “Fibromyalgia: I don’t believe it exists. It’s not real. It’s just all in their heads.”

"I remember hearing one of my teaching doctors - who I had previously really respected - saying in a lecture, 'I don't believe fibromyalgia exists. It's not real. It's just all in their heads.'" ~ Dr. Ginevra Liptan

GL — Here I am, sitting there with fibromyalgia, in the audience, and I realized right then — I have to keep this secret because my medical colleagues were going to judge me. It felt like this whole secret life I had to lead. It was really ridiculous and painful. It made it so much harder. I didn’t actually come out as having fibromyalgia until the end of my residency—literally, on the last week of my residency. I had to give a grand rounds. I did it about fibromyalgia and the big reveal was that the person I was talking about was me—and then, of course, I started sobbing in front of all my colleagues.

TS — Oh no!

[04:01]  GL — They were actually, really, surprisingly — these were people who had been in the trenches with me for three years — so they actually were pretty supportive. I felt like, if I at least changed one of their minds about somebody with fibromyalgia—you know their preconceived notion of fibromyalgia—I felt like I had to do it.

[04:23]  TS — Absolutely. And I think that’s such a good example of how we educate people around us, in our illness, by how we live our lives, with what we say and what we do. I think that’s great.

"We educate people around us, in our illness, and with what we say and what we do." ~ Tami Stackelhouse

TS — So, a good place to start, then, is: what is fibromyalgia? Speaking as a doctor, a specialist, and as a patient, give us the lowdown.

[04:49]  GL — Well, I know you talked a little bit about the research and things that have interested you, and that you found to be helpful, as far as understand fibromyalgia, in the last episode. The way I’ve put my personal research into my own: What am I experiencing in my body? What is going on in my patient’s body? What does the research show us?

I’ve found it really helpful to think about about what is happening in the body with fibromyalgia like a chain reaction. The chain reaction starts in the brain, where the part of our brain that regulates “are we safe or are we in a dangerous situation?” has gone haywire. It gets triggered by something — usually a trauma, injury or illness — and then it just gets stuck. Like the button is stuck. It doesn’t go back.

"There is a chain reaction that starts in the brain, where the part of our brain that regulates 'are we safe or are we in a dangerous situation?' has gone haywire." ~ Dr. Ginevra Liptan

GL — So, then, you end up with a constant DANGER response. Constant fight or flight signaling from the brain down to the body. What that does is set off a whole host of things, a kind of chain reaction.

[05:53]  GL — The first thing is sleep. Sleep is totally impaired in fibromyalgia. Our brain is trying to keep us in the lighter stages of sleep, so we don’t get attacked by the sabre-toothed tiger right outside the cave. Sleep disruption is huge. A lot of the studies have shown that people with fibromyalgia don’t get into the deeper, restorative stages of sleep. So, that is pretty key. I work a lot on trying to help people improve their sleep quality.

"A lot of the studies have shown that people with people with fibromyalgia don't get into the deeper, restorative stages of sleep." ~ Dr. Ginevra Liptan

[06:19]  GL — The other thing that happens when the brain is constantly in this fight or flight mode, is that we tense our muscles. Our body is trying to actually protect us, so we can either run away or fight. Now, in a short, few minutes that’s okay. But when your body is doing that all the time, subconsciously, it creates a huge amount of muscle pain, inflammation, and tension. We develop trigger points and painful knots in our muscles. Studies have shown that people with fibromyalgia, on average, have thirteen trigger points in their muscles, as opposed to healthy people having maybe one or two.

"Studies have shown that people with fibromyalgia, on average, have thirteen trigger points in their muscles, as opposed to healthy people having maybe one or two." ~ Dr. Ginevra Liptan

[06:58]  GL — I feel like it is really important to address our actual muscles in fibromyalgia. To really do things — gentle movements, stretching, yoga, myofascial release — to try and ease that tension. Because we really are — it’s not conscious — but we are really, really, really tense. We are doing that even when we are sleeping. I can tell almost when I lay my hands on somebody, when I am seeing them as a new patient, I can almost tell if they have fibromyalgia just by touching their upper back muscles. Because it feels… I call it “the trapezius of steel.” It’s just like…

TS — That description is so perfect! I know exactly what you mean. I have those!

 [07:44]  GL — And it’s really painful where I’m pressing. That’s actually where some of the fibromyalgia tender points are, that we use to diagnose it. I press on somebody right there, and it’s like ohhhh (intense pain). 

Sleep disruption leads to fatigue and brain fog. Then, the muscle tension really leads to inflammation, tightness, dysfunction in the muscles; and then, we are really prone to injuring ourselves. Any little activity… we are really prone to developing repetitive stress injuries and things like that.

[08:20]  GL — We are not meant to live in that fight-or-flight-mode all the time. So, it also sets off… Our inflammation levels are higher. It affects our hormones. It affects how we process and gather nutrition; so it affects our digestive system. Part of how I treat fibromyalgia is trying to go back to that first part of that chain reaction: improve sleep, improve muscle health, improve nutrition, reduce inflammation, restore hormone balance. That’s kind of the approach I take.

[08:57]  GL — Everybody looks at the scientific and research data that is out there for fibromyalgia. Everybody looks at it a little bit differently. The thing that most doctors really focus on, is that end result of the chain reaction, which is the hypersensitivity or increase sensitivity to pain. So, with fibromyalgia, a light touch will feel like pain. The signals are amplified as it goes up through our nervous system—and anybody that has seen a Lyrica commercial, knows that is the cause of fibromyalgia. That’s what they say. And that is absolutely part of it—but it’s the end result.

[09:37]  GL — And if we are are just looking at the end result, you don’t get as good of benefits, as if you start earlier in that chain reaction. Of course, you also need to address the pain hypersensitivity, but we do a lot better if we first start with addressing sleep.

If there’s one thing I want people to take away from this interview is, if you have fibromyalgia, talk to your doctor. Work with them on getting better sleep. Sleep quality is key. You found this, right, with your sleep?

"If there's one thing I want people to take away from this interview is: if you have fibromyalgia, work on getting better sleep." ~ Dr. Ginevra Liptan

TS — Oh, absolutely! Yeah. When I’m working with clients, too. We can do a lot of stuff, but if we don’t get the sleep aspect under control, then, at best, you’re treading water. You’re not going to actually make progress.

[10:24]  GL — Yes, exactly. And things like myofascial release, manual therapies, or even chiropractic, you don’t get as much benefit from. If you are doing some kind of manual intervention, but you’re not getting into the deep sleep you need to at night, it’s not going to hold as long.

I often tell people, don’t waste your resources. Don’t waste your money on doing a bunch of myofascial release or acupuncture, chiropractic, until you have first focused on getting your sleep, so that you can then get more benefit from any manual therapy you are getting. Because it’s expensive. Sometimes, insurance isn’t covering it. I really want people to try and focus their resources on what is going to give them the most bang for their energy buck, so to speak.

TS — Right. Absolutely. Sleep is BIG.

So, I know you have done some of your own research on fibromyalgia. Tell us a little bit more about that. It’s in more in the muscle realm than the sleep realm.

[11:22]  GL — It is. It is. Although, it would be really cool to do some sleep studies.

When I was working up at OHSU (Oregon Health & Science University), I got a grant to study how a treatment that works on the fascia might help fibromyalgia. So, I looked at myofascial release compared to regular relaxation massage. Fibromyalgia people either got myofascial release massage or regular relaxation massage, to see how it affected their pain levels.

[11:56]  GL — The reason why I wanted to study that so badly is because for me, myofascial release, which is really kind of gentle slow pressure on the muscles that really softens and allows the facia, the connective tissue, to kind of release. That’s what got me back to medical school. By far, myofascial release—I say somewhat hyperbolically, that it saved my life. That was the first thing that actually gave me some pain relief—and it was the first thing that gave me some hope.

"Myofascial release was the first thing that actually gave me some pain relief." ~ Dr. Ginevra Liptan

[12:27]  GL — My neck had hurt for 18 months. Nothing had helped; everything was making it worse. I did a few myofascial release sessions, and, for the first time, I didn’t have that same pain in my neck. It was like, all of a sudden, the clouds parted and I was like, “Wait a second. This actually could really help people.”

[12:44]  GL — Then, I, of course, go down to the library at medical school and look for myofascial release / fibromyalgia, and NOTHING. Nobody’s looked at it. So, that is what inspired me to get back to medical school—get back to my training. Then, I was like, I’m going to look at this.

[12:58]  GL — What I found was that folks that got myofascial release, did get more benefit than those that just got Swedish massage. Both groups reported some benefit, but the myofascial release group did better, had better pain reduction, and also had more sustained benefits. My study was just very small, and with small studies you can’t make huge conclusions. You can sort of say, well this kind of “hints”, this is more of a “pilot study”.

[13:29]  GL — But, right after my study came out, a huge, beautifully done study from Spain came out looking at myofascial release for fibromyalgia. And I was like, “OH, I should have done that!” But it was perfect timing and they came out with this really, really, beautifully done, very large study looking at myofascial release, twenty sessions for fibromyalgia. They found significant pain reduction, and this is the really cool part: even after the study was over—a month after people’s last session—they still had pain benefit. Six months after their last session, they still had pain benefit.

[14:07]  GL — So, you actually got some sustained benefit. It wasn’t just while people were doing the treatment. It actually improved and they did better going forward, without having to continue the treatment. I was like, HALLELUJAH! THIS IS IT!

So, for me: myofascial release. I highly recommend it for fibromyalgia. Everybody is different, of course. Every body responds to different things. But based on that Spanish study, my experience, and my clinical experience, I feel like myofascial release, particularly the John F. Barnes style. If you want to know more about it, go to MyofascialRelease.com. I think that is a really good place for most folks with fibromyalgia to look at.

[14:51]  TS — Absolutely. I think the aspect of this study that showed the sustained relief is HUGE. I have talked to so many people who were like, “Yeah, massage helps me feel better for a couple of hours, or until tomorrow…” You can’t do that every day…

GL — Who could afford to do that?… No… No… One thing that gives sustained benefit.

TS — Yes, exactly, which is awesome.

The other thing I just want to pause here and mention, for people listening in, is that I always have full show notes on these episodes. So, all of the links, the studies we are talking about, you’ll be able to go to FibromyalgiaPodcast.com and see all of those. Don’t feel like, “OH SHOOT! I missed that.” Or, “How do I spell myofascial?” Don’t worry; we got you! Just go to FibromyalgiaPodcast.com/5 to get to this episode.

[15:53]  TS — Obviously, this was super exciting, but what other research studies have you seen that really excite you, in terms of giving you some hope for either treatment options or figuring out what caused this?

[16:12]  GL — Well… There have been some really interesting brain studies lately, looking at inflammation in the brain and fibromyalgia. It’s actually been pretty hard to study because most people do not want you to take a biopsy of their brain while they’re alive.

TS — Yeah, I’d be in that camp!

[16:33]  GL — People aren’t usually super willing to donate part of their brain for research. However, in the past few years, some very smart researchers have figured out how to do it in a noninvasive way.

The one, I think, that is most fascinating, is they actually looked at the fluid that surrounds a brain. If you think about it, the fluid that surrounds the brain is going to have pretty much the same kind of chemical makeup as the brain cells, because it’s in communication with each other. What they found in the fibromyalgia brains were higher levels of inflammation. We already knew that there were high levels of Substance P—that’s P for pain—in the fibromyalgia brain, but we didn’t know that there was inflammation.

"Studies have found higher levels of inflammation in fibromyalgia brains." ~ Dr. Ginevra Liptan

[17:16]  GL — Inflammation is basically activation of your immune system. That can be for a good cause, to fight off a cold virus, or it can be unhealthy, in a kind of abnormal response. And that’s what we see in fibromyalgia. What that means is, it gives us another treatment target. That’s where it gets kind of exciting. What can we do to calm down the inflammation in the brain?

[17:42]  GL — That’s a different approach than anything we’ve tried before, as far as medicine for fibromyalgia. Things like Cymbalta or Lyrica—those are just working to calm down the pain signaling—that kind of excess hypersensitivity or volume issues. But it’s not dealing with that root cause, what’s really triggering it or driving it.

[18:10]  GL — So, treatments that can direct towards brain inflammation… that opens up a whole new world. There are some things from the alternative medicine world that we know can help with brain inflammation. Low dose naltrexone is one of those. CBD, which is near and dear to my heart, can also help to reduce brain inflammation. Things like turmeric. Fish oil. So, I like the idea of looking at what I can do, not only to reduce inflammation in my body, but in my brain.

[18:38]  GL — Dr. Jarred Younger is doing a lot of really interesting imaging studies, looking at other ways to piece out what parts of the brain might be inflamed, more inflamed, and what’s triggering it. It looks like it’s really due to the activation of the glial cells, which are normally quiet cells that sit there and protect the neurons. But in abnormal inflammation and chronic pain, those glial cells get activated, and they are sending out this chemical inflammatory soup. If you imagine the brain is an open wound, and they [the glial cells] are just squeezing lemon on it. OW, OW.

TS — That sounds painful!

[19:21]  GL – That gives a target: to say we have to figure out “why the lemon”, counteract it, and lower the inflammation level in the brain. So, that’s where it starts to get pretty exciting for me. And, doing combinations of things. Like maybe having somebody on low dose naltrexone, plus CBD. Plus, maybe there are some other pharmaceutical brain anti-inflammatory agents that we can develop. Maybe that would be the combination that would really quiet the pain levels down. That could really be quite exciting.

TS — Yes. Yes. That is super fascinating. I know that low dose naltrexone is often mentioned when we’re talking about glial cells. We will definitely have to do a future episode talking about LDN (low dose naltrexone) and that whole thing.

GL — You should interview Dr. Younger. That would be real cool.

TS — Yes, yes. He is on my list, actually.

GL — He’s great. He’s smart. He’s figuring this out.

TS — Yes, which I think is super exciting, and I love the fact that it’s something from a different perspective.

GL — Yeah!

TS — Rather than just looking at the same old thing.

GL — Right.

[20:34]  TS — I always use the analogy of fibromyalgia being like the “elephant” with the blind men.

GL — Yes!

TS — We think it’s this, and we think it’s that. We need to see more of the whole “elephant”. I feel like that is what this is doing.  

[20:48]  GL — That is a genius way to describe it, because you’re right. The neurologist only looks at this part of it. The rheumatologist sees this part. Or just looking at the sleep. But you’re right; it’s the whole picture and how does it all tie together? Like seeing the whole “elephant” and then you could actually treat it more effectively. Good analogy, I like it!

[21:10]  TS — Yes! So, what parts of the “elephant” do you feel like we haven’t looked at yet? What kind of research still needs to be done? From your experience as a patient, and as a provider, I know there’s a lot of anecdotal things out there that we do, that haven’t been studies.

[21:29]  GL — Unfortunately, almost everything I’m doing as a fibromyalgia specialty doctor, is more in the anecdotal realm. The first thing I think we really need to do, is we need to dial in to exactly which medications and treatments improve fibromyalgia sleep, and by how much. Which are the right medications, the right treatments, the right approaches? Really doing before and after sleep studies, that would be really interesting to me.

What does Lyrica do for sleep? We know there is some data that says Lyrica helps improve sleep quality. Let’s get ten people with fibromyalgia, and let’s do a sleep study before Lyrica, and a sleep study after. What actually happens to the brain waves? Then, we could really quantify and determine, “Okay, here’s what we need to use to help this kind of sleep issue.”  So, that is the first thing I think needs to be done.

[22:23]  GL — The second thing is, I really want there to be more research done on what is happening in our tissue in fibromyalgia. When fibromyalgia was first being looked at, thirty years ago, because people’s muscles hurt, they did a lot of muscle biopsies. Unfortunately, all those looked normal; they couldn’t find anything wrong. So they said, “It’s not in the muscles. The muscles are fine. It’s just in people’s brain.”

Well, if you actually look at what’s happening in the fascia, which is the connective tissue surrounding and enveloping the muscle, there’s some early studies that show the fascia is not normal in fibromyalgia. There’s some mild inflammation. There’s some excess collagen. The fascia is more sticky, so it’s not moving or flowing as well, and that is what is generating some of the pain. What we need are some really good quality biopsy studies looking at the fascia, I think.

Again, most people don’t want to go around giving samples of their muscles, but more likely than the brain. I definitely have had patients tell me to take a biopsy of whatever you like.

TS — I would just want to figure this out. Take what you need.

GL — Yes! So, I think some further research into the fascia would be really interesting.

[23:43]  GL — The other piece would be trying to figure out other ways we can reduce inflammation in the brain. Things like LDN (low dose naltrexone), doing a lot more research on that. Maybe getting low dose naltrexone to the point where it’s been well-studied enough that insurance will cover it. That your regular primary care doctor would hear about it. To you and I (Tami Stackelhouse and Ginevra Liptan), low-dose Naltrexone is known and is talked about. “Oh yeah, LDN.”

[24:16]  GL — I was recently speaking to a group of students: PA [Physician Assistant] students, sixty of them. I asked how many of them had heard of low dose naltrexone. One person kind of raised her hand. These are the future healthcare providers that will be going out into the community, and only one of you has heard about low dose naltrexone? We need to do enough studies so we can get it normalized and accepted by conventional medicine. Because, right now, it’s a very benign, harmless treatment that stands to benefit a lot of people with fibromyalgia. It’s not an opioid. Why doesn’t every primary care doctor know about it? That’s another piece that needs to happen. Big enough studies need to happen that it can actually get into the zeitgeist of medicine.

[25:12]  TS — Do you think that is part of why it is so hard for patients to get good treatment? Because there aren’t studies, and therefore doctors aren’t aware?

GL — Yes. Bingo. In fact, the best example of this is—and I don’t want to open a can of worms, but with the opioid crisis… Where they are saying that opioids don’t work for fibromyalgia… They are basing that on studies of less than 100 people, total. They are making that recommendation for 10 million of us with fibromyalgia based on the data from less than 100 people.

TS — And, if you were doing something like cancer research and you only studied 100 people, nobody would really be buying that yet.

[26:00]  GL — You can’t make a conclusion based on that. But, unfortunately, what your conventional doctor knows really comes from very small little pockets of information. If it’s not something that is FDA approved—and there are only three FDA approved medications for fibromyalgia—if it is outside of that, they often haven’t heard of it.

[26:29]  GL — In fact, when you ask your doctor, “Hey, do you know about any sleep issues with fibromyalgia?” Ninety-nine percent of the time they will say that there are no sleep issues in fibromyalgia. Even sleep doctors will say that! I’m like, “Are you kidding me?” There’s so many studies showing there are sleep issues. One of the big problems is that a lot of these studies are published in journals that people don’t read very much.

[26:54]  GL — The New England Journal of Medicine, which is the biggest medical journal in the world and the most widely read journal in the world… Do you know how many articles on fibromyalgia it has published?

TS — I don’t know if I want to know…

GL — One.

TS — Are you serious?

GL — I am totally serious.

TS — In the whole history of the journal, only one?

GL — Yep.

TS — <silence>

TS — I… I can’t… say… what’s actually going through my head.

GL — Is it an expletive, that’s going through your mind?

TS — We want to keep this episode rated for the general public.

[27:31]  GL — So, right there, that is the challenge. Doctors, through the channels they are accessing, are not learning about fibromyalgia. They are not learning about the new treatments for fibromyalgia. They are stuck 10-15 years ago.

"Doctors are not learning about fibromyalgia. They are not learning about the new treatments for fibromyalgia and are stuck 10-15 years ago." ~ Dr. Ginevra Liptan

So, what that means is: the fibromyalgia patient is the one who needs to bring that information to their doctor. That was part of what I tried to do in my book The FibroManual. I have actual resources they could bring in to their doctor, and they could say, “Hey, here’s this article— here’s the abstract about low dose naltrexone for fibromyalgia. Would you consider prescribing it for me?”

Then your doctor might look at that. It was a well done study, done by doctors at Stanford University. The science is sound. Maybe they will look at that and say, “Oh! Okay, well let’s give it a try.” Because they aren’t going to read about it in the New England Journal of Medicine!

[28:26]  TS — No, I guess not! 

In our next episode (episode 6), I’m actually going to talk about the role that we have as patients in our own health care. This is one of those things that Dr. Liptan is hitting on right now. It’s our bodies we are living in, and we have to bring information to our doctors, if we have it. We can’t assume that they have all the answers. This idea that doctors know everything is…

It's our bodies we are living in, and we have to bring information to our doctors, if we have it. We can't assume that they have all the answers.

GL — There’s so much information and so many illnesses doctors have to know about.

TS — I can’t even imagine trying to keep up on everything, especially if you are primary care. You basically have to know *this much* about a whole lot of stuff, and don’t really get in too deep. It’s a full-time job just for me keeping up on fibromyalgia. I can’t even imagine.

[29:17]  GL — Imagine doing that while also keeping up on what’s the best way to screen for cancer, treat high blood pressure, or treat diabetes. I always ask people to keep in mind that their primary care doctor—usually primary care doctors are the ones trying to help with fibromyalgia—is allotted maybe five minutes a patient. They are swamped.

The healthcare system is really struggling right now. Doctors are really overworked and overwhelmed. Not that this is an excuse, because certainly you deserve to be getting good care from your doctor. But try to partner with them and say, “Hey, I know we only have five minutes today. Would you consider reading this?” As opposed to, “Why aren’t you giving me low dose naltrexone?” That kind of partnering is really key. You catch more flies with honey than vinegar.

[30:10]  TS — Yes, exactly. I have always said I would much rather have a doctor who just treated me with ordinary human respect; listened to what I had to say; believed me when I told them things; and had an open mind for anything I might bring in, than those who thought they knew it all.

"I would much rather have a doctor who treated me with ordinary human respect, listened to what I had to say, believed me when I told them things, and had an open mind for anything I might bring in, than those who thought they knew it all." ~Tami Stackelhouse

[30:31]  GL — Me too. That’s exactly what I want in a doctor, and that’s my aim, what I try really hard to be. I have to say a lot of what I have learned over these past ten years of practicing, and treating fibromyalgia, is some of it’s been brought to me by patients. I had never heard of that. Let me look into that.

[30:52]  GL — For example: infrared—like using infrared saunas and treatments. It was a patient that came in and said, “This is really helping me.” I was like, “Wait, what is it? Really? Let me look into this.” Then, I tried it for myself, and now I know who to recommend it for. If you have a lot of joint pain, try infrared.

It is really a mutual kind of back and forth and partnership. But, it can be challenging to find that right provider to partner with. I bet in your next episode you’ll have lots of tips on how to do that.

TS — You know it.

GL — How to advocate for yourself and get the care you deserve.

[31:31]  TS — Yes, exactly. So, where do you see fibromyalgia going, from this point forward? Where do you think we are headed?

GL — I think that we are in a good trajectory for a few reasons:

#1 — The stigma of fibromyalgia is much, much lessened. Honestly, Lady Gaga has helped us with that. Having someone who is a celebrity come and say “I have fibromyalgia” kind of normalizes it and makes it something we don’t need to be ashamed about. I think that for our entire community dealing with fibromyalgia, whether or not you like her music, you have to like that she is at least normalizing and bringing it into the zeitgeist, that people know about it now. It’s not a forbidden, shameful thing to talk about. That’s only going to help things.

"The stigma of fibromyalgia is much, much lessened. Honestly, Lady Gaga has helped us with that." ~ Tami Stackelhouse

[32:31] GL — The other thing that is really encouraging is that I think that within the next few years we are going to have a blood test. There are a couple different potentials. I think we’re going to have some really discreet, accepted blood test that diagnosis fibromyalgia, so there’s no more gray zone. I think it would help with disability cases, and really making the diagnosis much quicker, so people aren’t having to see eight doctors and take five years before they get a diagnosis for fibromyalgia.

TS — And those are real statistics, if people were wondering. That wasn’t just something she just made up. Those are the actual statistics.

GL — It’s sad. My hope is that within a few years, and there’s definitely a few contenders out there as far as the blood test, but they need to be further studied, so they can be accepted and make sure the science is sound behind them. That will make a big difference.

[33:33]  GL — The one piece where I can foresee some struggle is in the funding of research. There’s not a lot of pharmaceutical interest right now in fibromyalgia, because there’s no big drug they are looking at. And that’s really how studies get funded. The government also studies and funds studies, but that has really dropped since the recession.

What we need are some better ways to direct and harness the finances and the interest in studies. Maybe having a research institute that is, I don’t know, funded by Lady Gaga. Just throwing it out there! I think something like that would help to really be able to systematically say, “Okay, how does this treatment help fibromyalgia? What’s going on in the brain here?” To really focus it, as opposed to being all little pockets of people looking at different things. Maybe NIH could do something like that. It would probably have to be a privately funded institution.

There’s definitely a lot of positives but really do need to keep the focus on funding and research, bringing the information so everybody’s primary care doctor knows how to treat fibromyalgia. That is my goal. How can I get that information, so other doctors can treat fibromyalgia?

[35:08]  TS — Absolutely. I think that is the thing that makes me most hopeful about where we are at right now. Like you mentioned, going and speaking to all the PAs who are up and coming. I’ve been to speak at OHSU (Oregon Health & Science University) for their medical students. Really being able to catch those future providers, and give them a little bit of insight. Here’s what it’s really like living with chronic pain. Here’s the REAL scoop on fibromyalgia. Here are the things that actually make a difference for me. Those three FDA approved meds are almost never mentioned.

It gives me a little bit of hope.

[35:52]  GL — Absolutely, I think the future generations of healthcare providers in America are going to be much better equipped.

TS — Awesome.

GL — Yes, there’s definitely reason to be hopeful.

[36:09]  TS — Awesome. For folks who are interested in connecting with you, seeing more of your resources, obviously go to Amazon and check her books. The FibroManual is out there. The Fibro Food Formula is her other book looking specifically looking at nutrition for fibromyalgia. Also, you will find her at FridaCenter.com.

TS — Are you taking new patients? Is your office taking new patients?

GL — My office is. I am not, but I have a wonderful naturopathic physician, who works for me, and she is taking new patients.

[36:49]  TS — Excellent. So if you are listening to this anywhere near the release of this episode, I know that changes on an almost daily basis, on whether you guys are or not taking patients, because you guys do such great work.

What other resources would you want to mention to people who are maybe listening and frustrated in their fibro journey and need some help?

[37:14]  GL — I have a blog at DrLiptan.com, and I actually have a YouTube channel: YouTube.com/drliptan. I try to have little education pieces—nothing overwhelming—just once a week, there’s a little bit of information I try to release. Just trying to keep it informational and fun. That’s a good resource, too.

[37:40]  TS — Awesome, as I said earlier, we will have all of these links in the show notes at FibromyalgiaPodcast.com/5 for Episode 5.

Thank you so much for joining me and doing this. You know how much I love you.

GL — Well, I love you too. Thank you so much. Thank you for having me. I am so glad you’re doing this podcast.

TS — Awesome. Thank you. Thank you so much.

So, this wraps up Episode 5. See you guys next time!

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