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Podcast, Provider Interviews, Rheumer Has It

Rheumer Has It: Busting Fibromyalgia Myths with Dr Christine Stamatos

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Summary:

Living with both rheumatoid arthritis and fibromyalgia can feel confusing, exhausting, and deeply invalidating, especially when it’s hard to tell where your pain is coming from or when fibromyalgia is dismissed as “not real.” In this episode, Cheryl and Eileen sit down with Dr. Christine Stamatos, a nationally recognized rheumatology nurse practitioner and chronic pain expert, to unpack fibromyalgia myths versus facts with clarity, compassion, and strong scientific grounding.

Dr. Stamatos explains why fibromyalgia is absolutely real, how it commonly overlaps with inflammatory diseases like RA, and what’s actually happening in the brain, nerves, and spinal fluid of people with fibromyalgia. She offers practical guidance for telling the difference between an RA flare and a fibromyalgia flare, explains why opioids often make fibromyalgia pain worse, and reframes treatment as a whole-person, multi-tool approach, not a single pill, diet, or supplement. 

This conversation is especially powerful if you’ve ever felt dismissed, blamed, or overwhelmed by mixed messages about pain, fatigue, brain fog, sleep, or mental health. You’ll walk away feeling validated, better informed, and more confident in navigating life with both conditions.

Episode at a glance:

  • Why fibromyalgia is a real, biologically based condition (and what the science actually shows)
  • How common fibromyalgia is in people with RA and other chronic illnesses
  • What functional MRI, nerve studies, and spinal fluid research reveal about fibromyalgia pain
  • Why opioids often worsen pain sensitivity in fibromyalgia instead of helping
  • How trauma, prolonged untreated pain, and stress can “turn on” fibromyalgia
  • Practical ways to tell the difference between RA inflammation vs fibromyalgia pain
  • The critical role of sleep, mental health, and stress regulation in pain management
  • Why fibromyalgia treatment is a constellation of strategies, not a magic fix
  • A compassionate explanation of catastrophizing — and how to work with uncertainty
  • How to explain fibromyalgia to friends and family (including the Spoon Theory)
  • Trusted resources for learning more, including The Chronic Pain Reset by Dr Afton Hassett

Medical disclaimer: 

All content found onArthritis Life public channels (including Rheumer Has It) was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Dr Christine Stamatos

Biographical Sketch Director, Fibromyalgia Long Covid Wellness Clinic Katz Woman’s Health Center and the Division of Rheumatology, Northwell Health   Christine A.  Stamatos DNP, ANP-C has been a Rheumatology Nurse Practitioner (NP) since 2002 when she graduated from Stony Brook University, completing a post master’s certificate as an adult NP.  Since then, she has completed a Doctor of Nursing Practice degree with research focused on non- pharmacologic strategies for chronic pain.  She received her bachelors of Nursing from Georgetown University and a Masters of Science in Nursing in Trauma/ Critical Care from the University of Maryland at Baltimore   She is also actively involved in the American College of Rheumatology as an active volunteer throughout the college and is a Past President of the Association of Rheumatology Professionals, currently serving on the Workforce Solutions Committee with a goal of increasing access for patients living with rheumatic disease.    Throughout her career, Christine has made significant contributions to the care and education of critically ill and rheumatology patients and their families while serving in the Army Nurse Corps, Shock Trauma Center at the University of Maryland, the Washington Hospital Center, Hackensack University Medical Center, and several Rheumatology private practices over the past twenty years, most recently Northwell Health, Division of Rheumatology. Additionally, Christine has worked as an adjunct professor at the University of Maryland, Columbia Union College, Stony Brook University School of Nursing and currently Hofstra Northwell School of Nursing and Physician Assistant Studies.    Dr. Stamatos has published and lectured extensively in the area of critical care and rheumatology nursing for the past 30 years.  She is currently the Director of the Fibromyalgia Long Covid Wellness Clinic at Northwell Health, a Division of the Katz Institute for Women’s and the Division of Rheumatology.  This program is based on an integrative health delivery model with patients and their families at the center to address the biopsychosocial needs of living with chronic pain and fatigue through evaluation, education, treatment and social support.  

Eileen Davidson Bio

Eileen Davidson, also known as Chronic Eileen, is a disability and chronic illness advocate from Vancouver BC Canada. Living with a diagnosis of rheumatoid arthritis, she spends a large focus on volunteering and creating awareness around arthritis. With The International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) Eileen is the Educational Media Assistant. Along with AiArthritis, Eileen is a member of the Arthritis Research Canada patient advisory board, and author with over 100 published articles.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

[00:00:00] Eileen Davidson: Welcome to Rheumer Has It, the podcast that busts myths, highlights evidence and inspires hope for living better with rheumatic disease 

[00:00:11] Cheryl Crow: Through plain language interviews with experts, we offer actual knowledge so you can thrive today. 

[00:00:17] Eileen Davidson: My name is Eileen,

[00:00:18] Cheryl Crow: and my name is Cheryl. Join us as we bust myth and spotlight evidence.

We’re so excited today to have Dr. Christine Stamatos to talk about fibromyalgia myths versus facts. Dr. Stamatos, can you first let us know a little bit about your training and how you came to specialize in rheumatology and fibromyalgia in particular? 

[00:00:38] Dr Christine Stamatos: Oh, thank you. Yeah. So, I’ve been training for a while or I’ve been in practice for a while. I’m a nurse. I I went and got a master’s degree and then I became a nurse practitioner and then got a doctorate at Stony Brook University. And my focus during my doctoral program was the non-pharmacologic and pharmacologic management of chronic pain. I got into that because I was already involved in rheumatology and I found as a nurse in all the rheumatology practices.

So by this time I had been in three rheumatology practices and each one of those practices, any of the patients that had fibromyalgia somehow always ended up on my panel. And I think it’s because fibromyalgia is not an easy condition to identify, to treat. And you’re always making sure that you’re looking to, find other explanations for your symptoms.

I was determined to see what else I could offer patients because it’s not just about the medications that we put into our body.

As you mentioned earlier, I’ve done a talk called, not another pill, it really is a whole armamentarium of strategies that cut across both self-management skills basic life style medicine and western medicine and socialization. I mean, it takes all of that to feel well when you live with a chronic in this condition pain state such as fibromyalgia.

[00:02:02] Cheryl Crow: Thank you so much. And Eileen has a question for you now. 

[00:02:06] Eileen Davidson: Yeah. And I’m really excited to have you here today because I have seen you speak at ACR and also as somebody living with fibromyalgia on top of my rheumatoid arthritis diagnosis, I personally find fibromyalgia very confusing and there is very little information, resources, anything kind of given to us rheumatic disease patients. We’re kind of diagnosed with it and told to, to kind of carry on with what we’re doing. So I’m really excited to have you here today to talk about fibromyalgia.

[00:02:37] Dr Christine Stamatos: Can I touch on that issue that you just mentioned? So, fibromyalgia can exist all by itself. You can have fibromyalgia without another condition, but I’ll tell you that between 30 to, in some epidemiologic studies, it’s up to 60 or 70% of patients who carry a rheumatic disease or any chronic disease. So that can be a cancer, that can be a MS, that can be any from the IBD world, right? We know that.

70% of people with IBD develop fibromyalgia and or IBS. So it very much goes along with some of our other conditions. And one of my greatest challenges in practice is teaching patients to recognize when it’s your fibromyalgia causing the discomfort versus the chronic disease that’s causing the discomfort.

So I just wanted to highlight that.

[00:03:23] Eileen Davidson: No. I’m actually, I was gonna ask you that exact thing. So I was like, why do so many people with rheumatoid arthritis or ankylosing spondyloarthritis or IBD also have fibromyalgia? So thank you for explaining that. It is so common.

But first we’re gonna talk about the stigma or misconception that is surrounding fibromyalgia and has been for a very long time.

And that is that, and I keep hearing this, is that the claim that fibromyalgia isn’t a real medical condition at all and it’s just stress, anxiety, or something hysterical women experience. Even in 2025, fibromyalgia still dismissed as a wastebasket diagnosis or treated as if it’s all in someone’s head rather than a recognized as a legitimate physical condition.

What would you like to say about that? 

[00:04:14] Dr Christine Stamatos: Oh, I have lots to say about that and I think, one of the very first moments in my career as a rheumatology provider in realizing that fibromyalgia was in fact real, was the functional MRIs that were released. And the first time a study that was done on functional MRI was in 2002.

But I wanna go back. Because I wanna say, and you first had to be able to identify characteristics that gave you, or criteria that said you had fibromyalgia. Once we had that criteria, which was in the 1990s, we could then say, okay, this person has fibromyalgia, this person does not. And now I can study the differences between those two.

And some of the very first things that they did before they got to functional MRIs is they literally used a manometer and they pressured, they put pressure on a, on an extremity and they found that people with fibromyalgia said, ouch, at a lower pressure than people who didn’t have fibromyalgia.

And that was reproducible over and over again by multiple different sites, by multiple different researchers. So that was the first thing that they found is that there was a different pain threshold for people who had fibromyalgia. They then, as I said in 2002, it was Dr. Dan Claw and Dr. Grassley. They were the first to identify when they looked at a functional MRI, which is a an MRI, that’s examined under interaction with the patient.

So whether you have someone look at an image or touch something or stimulate pain, it doesn’t matter smelling any of those things, what they found is that people who had fibromyalgia, the, the brain lit up in a much more exaggerated way.

And when I first heard that, I was like, well, that’s incontrovertible. We can’t argue that this is clearly different. And the exciting thing is that this has been also reproduced so many times that they now have something called a fibromyalgia signature. And this was in, let me give you the year for that.

So it took almost 10 years before they were able to let me just see. Because I don’t wanna tell you the wrong thing. No. 2017, and it was Dr. Lopez and she was the first person to identify this fibromyalgia signature. And what that means is that someone who knows how to read these images can walk into a room, have no idea what that person is here for, but look at the image and say, that person has fibromyalgia.

And they found that it was exaggerated responses to all five senses. So taste, smell, touch, hearing, and sight. And to me that was monumental. That was huge, right? But that doesn’t end there. That’s pretty significant. And I think that’s enough. But then in between, let me get back to the date again, between 1990 and 2010 again.

We were able to look at somebody who has fibro and someone who doesn’t. And they started to look at, and this is through a series of multiple studies, but again, so substance P is absolutely something that transmits pain.

So again, in fibro patients, the level of nerve growth factor, substance P and glutamate is more than three times higher than someone who doesn’t have fibromyalgia. So we’re transmitting lots more information of pain to the brain.

Then when the pain gets to the brain, there’s supposed to be a bunch of neurotransmitters that are supposed to say, Hey, this isn’t as bad as you think. Don’t feel that pain. So the enzymes or the hormones, there are norepinephrine, dopamine and serotonin, and most of us are pretty familiar with serotonin. It’s what makes us feel well and gives us a sense of the world being okay. Dopamine is what the body uses to to feel more focused and be able to pay attention.

And norepinephrine is the hormone that we produce when our body is stressed and we can all think of a time when we were stressed and we were able to accomplish something despite our pain. Or something overwhelming because we were anxious that someone was gonna be hurt and we were able to, they say lift the car off the baby, right?

That ability to do that is because you form this norepinephrine, and norepinephrine says, Hey, don’t feel that pain so much.

So again, in fibromyalgia patients, these three hormones are all too low in their spinal fluid, which is why depression so often goes along with fibromyalgia. Which is why Dyscognition or brain fog often goes along with fibromyalgia, and it’s where a lot of that pain comes from.

There’s a couple of other things that are off in the spinal fluid. They also found low levels of gaba, and GABA is the opposite of glutamate, and GABA is a substance that calms nerves down, reduces anxiety. And those levels are low in somebody with fibro. So again, you’ve got all this excitatory chemical that’s going on, but not enough of the chemical that calms things down.

Lastly, really high levels of endorphins are found in the spinal fluid of patients with fibromyalgia. Now an endorphin, if you don’t know what it is, it’s your body’s natural narcotic, your natural opiates, and it’s what gives you pain relief, right?

Well, if I’m just telling you that the levels are high in fibromyalgia, why do you still feel pain? First of all, you make more because you do have pain all the time. So the body’s like, whoa, I better make more of this. But you actually end up making so much that you don’t have enough receptors for that endorphin to connect to.

So for most drugs and chemicals to work in the body, they have to attach to a receptor. When they attach the receptor, then you get the benefit from that agent. And the thinking is that there’s, there’s been an overcrowding of the receptors. And so then you make the drug or you’re making this endorphin, but it doesn’t have any place to attack attached to rather, and therefore it doesn’t give you pain relief.

Which is, and this is really important to hear in the world of fibromyalgia, there’s lots of evidence that opiates so exogenous endorphins like oxycodone, Dilaudid, the all those medications that for a while we thought there was no ceiling. We thought we could give you as much as we wanted because you just, you needed it for your pain.

But what we realized 10 years ago when we were giving way too many of these, is that people with fibromyalgia were the ones who needed higher and higher doses and they weren’t getting pain relief. In fact, we were making them more sensitive to pain. We were increasing something called hyperalgesia. And so they, we know now that’s because all those receptors were maxed out before we even gave them the medicine. And all they were getting from it was more side effects and then this hypersensitivity to pain.

So that’s pretty huge. And to me, knowing that spinal fluid is different helps me to again, have an objective piece of evidence that something is wrong, something is different in patients who have fibromyalgia.

There’s a few other really important things that came along from a research perspective. In 2004, we actually found that when you again could measure those who had fibro and those who didn’t, and then look at their families, they found that there was a pretty strong genetic predisposition for fibromyalgia as well. And that genetic predisposition can be as high as 30 to 40% depending on the studies that you look at.

Then in 2013, there was a publication. One of the first and this has also been reproduced by Dr. U-C-E-Y-L-E-R, etal, and they found that there was more incidents of small fibro neuropathy in people with fibromyalgia as much as 60% of people with fibromyalgia.

Small fiber neuropathy is little teeny nerves that exist right underneath your skin. And they’re when those nerve endings are disrupted. So they’re supposed to be nice and even and straight and organized, but in fibromyalgia they become completely disorganized, which makes sensitivity to touch such a significant issue.

So that, that was a big finding. And then I think to my my understanding, one of the next best, most significant findings was in 2015. And again, this study’s been replicated multiple times, but the first study was published by Dr. Brummet, and they looked at all patients going for hip and knee replacements.

And they found that patients going for knee replacements who had scores, so there’s a way to calculate your fibromyalgia score, and this was all patients, whether you had fibromyalgia or not, and they took those patients who had a score over 13, which was consistent with fibromyalgia, and they found that those with a score over 13, for every point over 13, they needed nine more milligrams of morphine postoperatively and six months down the road. Again, for every point over 13 that you had, you were doing worse postoperatively than those who didn’t have fibromyalgia.

So those are my key big research findings that, at least in my mind, helped me to understand that, that there is something absolutely connected and something different in those that have fibromyalgia.

I didn’t talk about the sleep studies and there’s multiple sleep studies that have been shown to, to demonstrate that there’s a disruption in normal deep restorative sleep for patients with fibromyalgia. And just as well, the very first study in 1975 was published by Dr. Malky who said there’s a connection between sleep and pain.

And they found that taking healthy college students and disrupting their sleep over the course of one week led to increased pain. And after two weeks, they felt like they had. Fibromyalgia. I’m sorry that was a long answer, but there’s my objective evidence. 

[00:13:43] Eileen Davidson: That was an incredible answer and you provided so much evidence, so thank you for that because it is a massive stigma that fibromyalgia isn’t real.

So thank you for providing all that information to us. Cheryl is going to move on to our next misconception about fibromyalgia that you can answer for us. 

[00:14:05] Cheryl Crow: Yeah. Yeah. And you did already touch on the potential associations, like what causes fibromyalgia? I think that is kinda like a chicken or the egg thing. Do they come outta the womb like this? Or did something, does something happen? Like with RA it’s kind of like they say, genetics loads the gun, an environment pulls the trigger. Is it like that? Same. Okay.

[00:14:24] Dr Christine Stamatos: Absolutely the same thing.

And and there is definitely a connection to some trauma. So some of the literature that you look at can tell you that 90% of people who suffer from fibromyalgia have some trauma somewhere in their life. Now, how you define trauma is very different, right? It can be emotional trauma, physical trauma. It can be a surgery that’s gone bad.

I just had a patient who just had a abdominal surgery and her pain was so severe. I’m talking to her two weeks later. I swear to God, she just had a P-T-S-D experience. I mean, so it’s any kind of trauma and that then often turns it on.

So frequently what we’ll hear from patients is, I was fine until I had that car accident or until I had that fall, or until I had that, until I was diagnosed with rheumatoid arthritis.

And I think to the best of our ability, what I can explain to patients is that acute and chronic pain are different. And when you have pain that goes untreated for a long period of time, it becomes a chronic situation. So pain over acute pain over three months, completely untreated leads to centralized chronic pain issues.

And that’s why oftentimes people with an ankylosing spondylitis or a spondyloarthropathy, these patients go for upwards of 10 years, even lupus patients, Sjogren’s patients, right? They go from more than 10 years before they have an accurate diagnosis, during which all that time they’re having an inflammatory or and or just a chronic pain state, and that’s changing their processing of pain.

So I think that’s really important to understand about what turns it on. But I also like to talk about the fact that there are modifiable factors that turn on pain and there are non-modifiable factors. So I obviously can’t change the fact that you developed rheumatoid arthritis. I can’t change the fact that you’ve maybe even had a horribly traumatic childhood, right?

So let’s talk about the things that you can change. We know across the board, every patient that’s been interviewed with fibromyalgia says their symptoms are much worse when they’re stressed. So we know we can manage stress, right? We also know that obesity, which is a growing problem in our country and across the globe, we also know that leads to inactivity, inactivity and isolation from the stigma associated with obesity even. And those things then lead to exacerbation of symptoms.

So when it comes to the whole question of depression and or anxiety, it’s always hard to know which comes first. It could be many people who have depression and anxiety have somatic symptoms that look just like fibromyalgia, but then many people don’t have any depression or anxiety initially. Then they go on to develop chronic pain, and the chronic pain makes ’em have depression and anxiety.

But I have two rules when it comes to treating fibromyalgia. My first rule is that if you don’t sleep, if you don’t get high quality restorative sleep, and that means a minimum of four hours of uninterrupted sleep a night, you will not control your pain.

And the second rule is if you have anxiety and depression or depression, and it’s either pre or post, it doesn’t matter where it came from, but if you have it and you’re not addressing it, you’ll never take care of your pain. So those are my first two rules when it comes to treatment. 

[00:17:36] Cheryl Crow: Wow you must have read our outline ’cause you perfectly anticipated the next, question, and I think I’m often on my soapbox, but yeah, sleep is the forgotten lifestyle intervention. Everyone’s like diet, exercise, diet, exercise. And I’m a huge, especially right now, exercise strength training person, but sleep people just forget.

[00:17:53] Eileen Davidson: Well, I’m going to second the sleep thing.

I’ve been having issues sleeping lately, so yes, it’s definitely set my fibro ra.

So you touched a little bit on what can help people when they have fibromyalgia sleep and addressing mental health.

I lately have been going on trying to prioritize my mental health as much as I prioritize my physical health because really they are the same thing. To feel better with my all the arthritis, I have quite a bit. I need to also address my mental health. But there is a very major myth about fibromyalgia, and that is that it can be cured or treated with a specific diet, supplements, or by blaming things like leaky gut or your diet changes in your mindset or exercise.

All these things can either cure or completely relieve fibromyalgia as. What would you say the truth behind this is, or the not so truthful? 

[00:19:00] Dr Christine Stamatos: So, what I would say across the board for the most part in most individuals is, some people there is one thing that’s gonna make them better, but for the most, the majority of people, it is a constellation of treatments.

There are far more things that you have to do than to take one drug or one diet, or one supplement, or one exercise regimen or one even behavioral health approach, right? It really is a lot of different things, and I did not come up with this analogy. Penny Cowen is the director of the American Chronic Pain Association, and she came up with the analogy of living with chronic pain is like driving your car with your tires flat.

And I use this all the time with my patients because to move smoothly through life, you have to have all four of your tires full, right? Well, one tire is Western medicine and surgery and interventions and things that we do to you. So it’s getting you on the right medication. It’s making sure that I give you the right injections.

If you need injections, operate on what it needs to be operated on. That’s what one of those tires is. But if that’s the only thing I focus on, I still have three flat tires.

The second tire is your physical strength and endurance. So that means the food that you put into your body, the sleep that you get for your body, the muscle mass that you maintain, all of that is just again, a whole nother tire.

So if I eat right, sleep, right exercise, and I take the right medicine, but I still have the other two tires, I’m not focused on, I’m not gonna be rolling smoothly through life.

The third tire, and I may have tweaked this from her description, so I, it’s my, the way that it works for me, the third tire is your social worth and value in our planet, right? So it’s the connections that we maintain with others. We know that connections are critical.

If you have to change the way that you work, that’s fine, but you still should feel like you’re contributing to society. You’re maintaining those friendships. And how many times would I ask a patient if who lives with chronic pain: when was the last time you did something fun? It’s quite scary when I see that they can’t even remember.

So maintaining those social connections is critical. That’s a whole tire in and of itself.

And then lastly, so you could do again all that and have it all perfect, but you still have a flat tire if you’re not focused on that last one. And the last one is called coping strategies. It’s what are the tools that you have in your back pocket that you on your own can pull out when no, without anyone else’s help.

So it’s knowing how to do a deep breathing exercise, knowing how to meditate, knowing how to pace yourself, knowing that if I need to go clean out that closet, I think I can do it in one four hour chunk of time, and I’m not gonna be in pain for three days. That would be an inappropriate expectation, but to know that, okay, I gotta clean out the closet, it’s gonna take me two weeks, and I’m okay with the mess that’s gonna be there until that’s completed.

That would be a healthy self-management strategy. Self-management is also the ability to change thinking that’s not working for you. We didn’t talk about catastrophizing when we mentioned before. Modifiable and non-modifiable causes many people who live with chronic pain catastrophize. So for example, this woman who had terrible abdominal pain after her surgery and thought, oh my God, I’m never gonna be better again ever in my life.

That is a catastrophic thought. She also was panicking about having to have open heart surgery. She doesn’t have any cardiac problems, but she says, what am I gonna do if I have to have open heart surgery? She was catastrophizing. That’s when you have a headache and you think it’s a brain tumor. So learning how to change those thought processes is a self-management technique.

And so to sum it up, it takes all of that to get well. It is not one strategy, it’s all of that. 

[00:22:44] Cheryl Crow: That’s so helpful. And I, sorry, I’m just gonna fixate on the catastrophizing for one second ’cause I am on the record as saying that, in the wrong hands and without the strength of like your therapeutic alliance, learning about pain catastrophe, catastrophizing, can very much come across as gaslighting.

Yes. But that is in the context of when it’s not applied in a very compassionate way. And it’s not explained in the way of like, like you said, she’s worried, that her pain’s never gonna get better. Well, we don’t have proof either way. We don’t actually have proof, right?

So what we could build our capacity to cope with the uncertainty and learn to direct our focus away from this idea that I have to know for sure how much pain I’m gonna have in that like anxious.

[00:23:25] Dr Christine Stamatos: You’re never gonna know 

for sure. Right?

[00:23:27] Cheryl Crow: But if somebody, an untrained person had said to me, well, let’s just make a chart and see whether the evidence, it’s like, that’s not gonna help me. It’s gonna make me feel like you’re just saying that I’m not thinking correctly about my pains affecting my life. You know what I’m saying?

[00:23:39] Dr Christine Stamatos: So here’s a way that I also, in that I am hoping this is in a learned way. At least it’s how I understood it. Yes, you wanna challenge the thoughts.

But sometimes those thoughts still lead you back to, yeah, I think I’m gonna be in pain this bad for the rest of my life. The last question I have people ask themselves is, how is this working for you? Is it working for you to mm-hmm. Maintain that very negative approach, and even if that pain is always gonna be there.

How I change my response to that pain. And that’s another thing about acute versus chronic pain, and I typically, when I do this talk, I explain to patients that acute pain, if you look at a pie graft, acute pain is 75%, or I should yeah. 75% is the acute tissue injury. And how you think about it and how you feel about it is the whole pain experience, but chronic pain.

75% of that experience of pain is your thoughts and emotions and a very small piece of the pie. Now, less than 25% of the pie is actually the tissue injury that you have. So while again, I can’t change the tissue injury per se, I have you on all the drugs I need to control your inflammatory arthritis, but you still have pain, I can help you change your thoughts and emotional response to that pain, which is a huge part of the pie.

Yeah. And so that’s. Where some of those thoughts come through and how you can make a difference for yourself. 

[00:25:02] Cheryl Crow: A hundred percent. That circles back beautifully to Eileen’s first kind of question, right? Which is what if you have both fibromyalgia and rheumatoid arthritis?

How do you, and you have, I’m experiencing pain. Which one’s causing what?

[00:25:17] Eileen Davidson: That’s, that is a very common, I guess, contemplation I have every day. Is this rheumatoid arthritis pain and fatigue and cognitive dysfunction, or is it caused by fibromyalgia? So, yeah, it’s a constant battle.

Trying to pinpoint which one, how did I throw myself into this flare? 

[00:25:35] Dr Christine Stamatos: So that’s a question I have to work with my patients very aggressively on, on a regular basis because you have to know the difference because how we treat those are completely different. If your RA is flaring or your inflammatory bowel disease is flaring, I’m going to use disease modifying agents to fix that problem.

But if it’s your fibromyalgia, that’s flaring, I’m gonna use whatever is needed in that case to figure it out. And how you largely make the distinction is based on a word that I really try to help patients understand. And that’s function and stiffness. So the typical fibromyalgia will, patient will tell you I’m stiff all day. But then the next question you wanna follow that up with is, what is your range of motion?

And so Eileen, I know you can rec recognize this and you too, Cheryl, because you both have an inflammatory arthritis. When your joint is inflamed, you lose the ability to range in all the planes that it needs to go.

So you maybe can’t raise your shoulder up, or you can’t bend your wrist, or you can’t make a fist. Those are all signs of inflammation. Whereas somebody with fibromyalgia have pain and they’ll say, stiffness in all of those places, but they’ll be able to move their joints in all planes. So that’s the biggest difference.

And it’s not easy for people to understand that. The other thing is, I have a lot of patients with fiber will say, yes, my, my joints are swollen. And the next question I say is, could someone from across the room see that swelling? And if you could see the swelling, it’s clearly inflammatory.

There is some sub clinical inflammation that happens in ra, like when someone squeezes your hand, they give you that handshake and that hurts. Mm-hmm. So when it becomes really difficult to distinguish, I then will use advanced imaging. So I’ll do an ultrasound and I’ll evaluate your joints with an ultrasound and see if there’s increased blood flow to that region, which suggests that it’s your disease that’s flaring.

And if all that comes back negative or I’m able to see without having to do the advanced imaging. Then we address the problem from a fibromyalgia perspective. And sometimes you have to do both at the same time. 

[00:27:39] Cheryl Crow: Yeah. I, another thing I’d say, if someone’s just, and sorry if I missed this, but is just that typical pattern of worse in the morning is for our RA, really, and getting better with activity.

At least for me, my RA for the last 22 years has been very predictably, like this is my first sign of a flare, like canary in a coal mine, it’s worse in the morning, gets better throughout the day. So that

[00:27:59] Dr Christine Stamatos: but Eileen, can you speak to that issue? I’m guessing you can speak to this when it’s your RA that’s flaring.

Yes. You’re stiff in the morning, fibromyalgia, but it gets better with activity, fibromyalgia, stiffness doesn’t really get better with activity. 

[00:28:13] Eileen Davidson: No. And it can be very kind of confusing to tell which ones which, especially because I also have osteoarthritis. Yeah. So it’s like, okay, how do I tell the differences is I find for rheumatoid arthritis, pain is very joint centered. And I, my joints feel hot. They feel stiff. They’re achy, but fibromyalgia, pain is like, you feel it all over your body or kind of centralized in certain areas, mostly in the muscles.

Yep. And I also find that it is sometimes also easier to trigger from exercise and things like that because there’s post exterior or malaise or post-exercise. Thank you. I forgot the word for a second. Very brain fog. So there’s just like little things about that, having to, I’ve learned how to learn about kind of the differences between, is it my fibromyalgia or is it my rheumatoid arthritis?

And also I believed that I had fibromyalgia before rheumatoid arthritis. Mainly because I come from a background and my child with trauma and things like that has you brought up. So, understanding all of that has helped me kind of really understand my triggers for fibromyalgia flares because a lot of it is coming from my past traumas, my mental health and stress where rheumatoid arthritis can also be definitely exaggerated from stress and depression, but it.

Hits differently physically

[00:29:39] Dr Christine Stamatos: Also, sometimes, not always, but blood tests can also be helpful. Yeah. With a fibromyalgia flare, you should not see elevated inflammatory markers. Mm-hmm. Versus with inflammation. 

[00:29:49] Eileen Davidson: Yeah. And and once upon a time ago I was near re remission with rheumatoid arthritis and my, my CRP, even my blood work was fantastic, but I still had pain. Yes. And my rheumatologist said something very profound to me, and that was, let’s not look at the blood work. Let’s go by how you are feeling. And that’s when she actually sent me to another rheumatologist who was a specialist in diagnosing fibromyalgia.

And that’s how I received my diagnosis. 

[00:30:22] Dr Christine Stamatos: And you asked about treatments. That’s one of the most important treatments is to get a diagnosis, to absolutely feel validated and then to do education, to understand the condition. So when we look at the guidelines for treatment of fibromyalgia, that is the very first thing is to validate someone and then to educate them, which is what you guys are doing here.

And I thank you very much for that. 

[00:30:44] Eileen Davidson: Mm-hmm. Thank you. We are gonna have to move on to our last question, which I think is an important one. And even though I live with fibromyalgia and I have been for over a decade and over a decade of living with rheumatoid arthritis, it is so hard to describe what exactly is fibromyalgia to our friends and family in a way that they would understand.

So the last question we have for you here is how would you suggest somebody describe fibro to their friends and family? 

[00:31:15] Dr Christine Stamatos: So first of all, I would say, ask them if they’ve ever had, a period of time when their sleep was really disrupted. If they had three to five days of poor non-restorative sleep, how did their body feel?

Ask them what they feel like when they’re getting a cold. That horrible total body pain. Muscle aches everywhere. Remind them that it is a condition that causes pain above and below the waist, the left and the right side of the body associated with headaches. Stomach discomfort, brain fog. So I would say all of those things to help them understand.

And then I really love the work by Christine. I’m gonna, I don’t wanna mess up her name, yeah, the spoon theory. So she’s all about helping people in her family understand these conditions that you can’t see. If I looked at either of you, I would never know either one of you is dealing with any chronic condition, but basically it takes energy to get through your day living with these chronic states. And so that’s what she explains in her spoon theory is that, we’re all given maybe 50 spoons to start the day with, but just to get out the door. If you have an inflammatory arthritis and or you have fibromyalgia and they’re both just as disa dis disabling, right?

You’ve used already 30 or 40 spoons before you walk out the door, so that seems to help people understand. I don’t know if that’s a good enough answer, but that’s, that would be my explanation. And I really encourage people, when I do my lectures for the community, I always say, bring a family member. I want someone else in your family to understand this.

It’s very hard for family members because you look at fine, your function level is often totally fine, and they think, well, why are you complaining? You look fine. What’s the problem? 

[00:32:57] Cheryl Crow: Mm-hmm. Oh. Absolutely. Yeah. And thank you so much for that. And I mean, you’ve had so many great nuggets of wisdom. We’re always thinking about which parts of the podcast can we clip and do like a short social media clip.

And I’m like, you know what? Social media, I’m sorry you guys are all gonna have to listen to the full episode, okay? Because just too many to clip. But is there anything that you would say is the most important takeaway you’d want someone to take away from this episode? 

[00:33:23] Dr Christine Stamatos: Well, I had three that I listed for you.

One is that it’s real. You a hundred percent need to believe that it is real. And I gave you just a very cursory explanation of the evidence, but there’s mounting evidence, and every year there is a paper, and it’s called, it’s written by different people every year. It’s called fibromyalgia one year in review, the last one, the author was DeCarlo. But if you just search fibromyalgia, one year in review, every year there’s a paper published. It goes through what we understand from the pathophysiology. What we understand from the mechanisms of the pain and then treatment options. So it’s perfect for keeping up to date with the research that exists around the world of fibromyalgia.

And then my second most important thing I would wanna leave people with is that, again, it isn’t one treatment. There is not a drug out there that’s gonna fix your problem. There’s not a diet out there that’s gonna make it go away. There’s not an exercise that you can do, except you have to do it all. And I also think it’s very important to know that we as healthcare providers are really just here to coach you.

It’s also crazy important that you take responsibility for yourself and you lead the show. You are the leader of your body, and you have the ability to make the changes that need to be made to get well. 

[00:34:42] Cheryl Crow: Yes. You’re in the driver’s seat and it’s, I would say with great power comes great responsibility. It’s kind of great, good and bad news, right? Because I think most, it’s almost like a grief process when you’re diagnosed. Like you want the doctor to just, or the nurse practitioner just give you the magic bullet, and it’s kind of good news, bad news to learn that, oh, i’m the one that’s gonna be dealing with this every day, and I’m in charge of my, destiny to some degree, I don’t have a spoons for this sometimes. But I would say just take it one day at a time and you will learn how to be that driver. It’s like going to driver’s ed.

You’ll learn with your coaching from your providers and your fellow patients and your support communities, hopefully.

[00:35:20] Eileen Davidson: I actually never learned to drive because of my brain fog. Like literally driving it doesn’t really work for me, but, oh, no I just like to say Eileen, no one else is gonna hold your hand but yourself.

[00:35:32] Dr Christine Stamatos: No one else is gonna dress you. No one else is gonna get you onto this podcast. You had to do that all yourself. The same thing. 

[00:35:38] Eileen Davidson: Exactly. So that is definitely something that is really important to realize when you have fibromyalgia, but also mental health struggles as well. Because then you’re, I feel like then you’re also fighting your body and your mind at the same time.

[00:35:51] Dr Christine Stamatos: The interview, just one last little tidbit, the interview of Oprah Winfrey and Lady Gaga, if you’ve not seen it, is spectacular. Yes. Mm-hmm. Yeah, so she, they do an interview, I think it’s over an hour long, talking about fibromyalgia and the trauma and the need to treat the trauma as one issue and the fibro is another issue.

And the fact that you do need to use medicine sometimes. But it needs to be the right medication and you need to know when you’re supposed to use it and when not to use medication. I thought that she does a beautiful job in that description and would highly recommend everyone listening to it.

Okay. I’ll pause link to that 

[00:36:28] Cheryl Crow: in the So notes. Mm-hmm. Yeah, 

[00:36:29] Eileen Davidson: for sure. And that actually kind of fits perfect into our last little tidbit here. And if people want to learn a little bit more about fibromyalgia, where do you recommend they go? 

[00:36:41] Dr Christine Stamatos: So there is a, an association, fibromyalgia Awareness Association. I think it’s FAA and they are a place where they they catalog a lot of the research that’s being done.

They have lots of resources and I think there’s support groups that come there. I actually sent people to you guys. I really love the work that you’re all doing. And then the American sorry. The American Chronic Pain Society would be another place, but the University of Michigan, their chronic pain and fatigue center is really where the science is coming from.

They’re kind of an international hub for the research that’s being done.

And then one of the greatest tools that we have at our hand is that Chronic Pain reset book by Dr. Afton Hassett, and she now has a podcast as well. So her podcast is fantastic. She too tries to keep it a half an hour long and goes into a variety of different topics and we are, she is working on a workbook to take people through her exercises.

She’s a world renowned clinical psychologist focused on pain and she’s taken her years, her career of experience and applied it to this one book. And the book starts goes through the first half, is with case studies and how they’ve come out of their. Bedridden level of severe pain. Thank you for pulling up the book.

CPR for pain to me makes so much sense.

[00:38:00] Cheryl Crow: I never even noticed that. I love it. Love it. So anyway, 

[00:38:03] Dr Christine Stamatos: it’s a great resource. She’s always updating things. So that’s what I’d like to leave you all with. 

[00:38:09] Eileen Davidson: Excellent. Yes. I also have that book, and I have seen her speak so thank you so much. And on that note, we are finished today’s topic on fibromyalgia, though we could probably talk for several more hours. Thank you so much for being here, and thank you again for listening to another episode of Rumor Has It?

[00:38:29] Cheryl Crow: Yeah. And don’t forget to check out the full show notes on the Arthritis Life website, my arthritis life.net for the full transcript plus video of our conversation. 

[00:38:39] Eileen Davidson: We would also love to hear what you think about this episode. Shoot us an email or comment on our social media accounts. Thanks again.

Bye-bye for now.

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