Fibromyalgia is not a trash can diagnosis [PODCAST]

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“How would you like to see your career slip away from you as you gradually become less and less able to sleep, to rest, to feel awake, to feel like your memory is failing you, to be taking pills every night on call because your legs ache so badly, to become upset so easily you don’t trust yourself to handle stressful situations at work? How would you like to have to stop working because you can’t do it anymore?

This would certainly be a catastrophe. But not one of your making.

So, the next time your patient appears at their wit’s end, please don’t assume they are just somehow lacking in coping ability. Take them seriously. Show them some empathy. You will both be better off for it.”

Margaret Macdonald is a family physician.

She shares her story and discusses her KevinMD article, “Fibromyalgia is not a trash can diagnosis.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow. Today on the show we have Margaret Macdonald. She is a former family physician and now a fibromyalgia expert. Her KevinMD article is titled “Fibromyalgia is not a trash can diagnosis.” Margaret, welcome to the show.

Margaret Macdonald: Thank you so much for having me.

Kevin Pho: So we’ll get into your article in a little bit, but just briefly share your story and journey to where you are today.

Margaret Macdonald: Right. So why can I call myself an expert in fibromyalgia, because I’m not actually a rheumatologist? But, you know, I initially worked as a family doctor. I was delivering babies, with privileges in three hospitals, the whole shebang. I was finding life pretty hard that way, and I was always tired, but of course, you know, I was busy, right? But I did end up changing career track a bit because I really couldn’t handle all the call and the weekend work. I worked in a psychiatric hospital for a while, later studied some neuroscience stuff, and ended up eventually coming here to Colorado to work in research for a brain injury program with the military.

And, you know, learning more about research was really interesting. There were so many arguments in the field about, you know, how can a mild concussion cause all those symptoms, right? And to me, I just sort of found that it started making sense the more I listened to the patients. I just couldn’t understand how they could all be making it up, you know, because all the symptoms are kind of the same. I was kind of frustrated, though, by this disconnect between the evidence and what I thought was just common sense, really, especially the more I learned about the brain.

And then one day, also, I was doing a continuing medical education thing about fibromyalgia, and I thought, “Wow, you know, a lot of these symptoms kind of overlap with post-concussion syndrome.” And of course, they tell you that fibromyalgia is a central nervous system hypersensitivity disorder, so I thought, “Well, OK, I guess that makes sense, then, why they might overlap.”

And then meanwhile, I’m struggling more and more with my own chronic fatigue and unrefreshing sleep and aches and pains, and feeling the stress of the job more and more. And, you know, finally, I looked at one of the questionnaires they had for fibromyalgia and filled it out, and I thought, “Oh my gosh, I score higher than the cutoff score.” You know, and I’m like, “Wow, do I have fibromyalgia?” It was really an interesting experience, because I knew I wasn’t crazy. I knew that, you know, in fact, I wasn’t a complainer. I was a really hard worker. But there were all these weird little funny symptoms all my life.

But I think what really clicked with me was I never really knew what normal was, because I’ve really had these symptoms all my life. Even heading into medical school, I remember them asking me, you know, “Is there anything about yourself that would be difficult for being a doctor?” And I remember I said, “I like my sleep.”

And so, you know, they say it takes an average of about four years of a patient with repeated contact with their primary care physician to get diagnosed with fibromyalgia. And I guess it’s not really a surprise. I’m a physician, and it took me decades to realize that I have this disease, right? But I think that also speaks to the psyche that we have, the psychological aspect of thinking about this disease, because, you know, who wants to have that disease, right? We’re all taught that it’s really something wrong with the brain, and so of course I didn’t want to have that. But boy, I have a lot of empathy for patients because of what they go through, and how they’re even just trying to describe their symptoms, and how the doctors don’t understand. And they can’t really understand if they’ve never experienced it. And also understanding how devastating this disease can be to your life, because it’s really not understood.

And, you know, I ended up having to leave my job, and I was only 55. I wasn’t really ready to be retired, but I just couldn’t do it anymore. So then I tried doing some per diem work, you know, and I was taking really perfect care of myself, and I was finding that I had to ask them if I could just do six hours instead of eight hours. It would take me forever to get the charting done, and I was like, “OK, what is going on here? This is really awful.”

And I think maybe just because I have good karma practice, I did find that there’s a book that was written by a doctor who had figured out a lot of things about fibromyalgia many years ago. He really talks about an alternate theory for what’s going on in fibro and how you can fix it. So I thought, “Wow, this is, you know, should I have hope here, or should I be skeptical?” But, you know, having had a background in research, I went ahead and checked it all out. The first thing I did, of course, is I found that there was a randomized controlled trial done back in the ’90s for this particular treatment and for fibromyalgia, and it said it didn’t work. I’m like, “OK, so is this just another California person promoting something, right?”

But, you know, the more I looked into his explanations for the theory, the more I realized it really did make sense. And then I found out, actually, that there was probably a fatal flaw in that study, and that’s why it didn’t work. That has something to do with this: There are some things that you can get exposed to, salicylates, and they will inactivate the medication’s effect. That was probably what was going on in that study.

So I thought, “Well, what the heck.” You know, the treatment is an over-the-counter drug. Maybe that explains why there isn’t all the research done on it, right? So the doctors don’t know about it. It’s an old, safe drug. It doesn’t interact with anything. It has no side effects. So there’s really no harm in trying it, and it’s cheap. You know, it’s almost like an ideal drug.

So I tried it, and everything that I experienced was exactly what he said should happen. And so I thought, “OK.” And I even managed to screw it up and get myself exposed to a salicylate for a while, so then I got worse. And then I actually went to see this guy and found out what I was doing wrong, and then I got better. So an N of one, but an ABA study design, pretty compelling for the causational value of the treatment, right?

And so within the first year, I was getting so much better that I decided, “Well, you know what? If this works, I need to get out there and take care of some patients and help them as well.” And especially, you know, these patients really need a doctor who understands what’s going on. The validation effect is so satisfying. So I’ve been getting better and better. I seriously do not even have the same body I had five years ago. I’m a super energetic person again. I love getting up at 5:30 in the morning, and I love taking good care of my patients. So that’s what I’m doing now.

Kevin Pho: All right, so you talk more about that in your KevinMD article, “Fibromyalgia is not a trash can diagnosis.” Now, just to get everyone on the same page, just before you talk about your article, what is fibromyalgia? What’s the current accepted definition of what fibromyalgia is today?

Margaret Macdonald: Well, the current accepted definition is that it’s a syndrome of multiple system complaints, with the cardinal features being chronic widespread pain, unrefreshing sleep, and, you know, cognitive and affective difficulties like brain fog, depression, and anxiety. The standardly accepted explanation for that is that there’s a central nervous system hypersensitivity problem in the brain. And that isn’t false. You know, they have done the fMRI studies; the brain really does have an exaggerated response to pain. But that is not the cause of fibromyalgia. That is simply, I believe, an epiphenomenon of the disease.

And what they haven’t really looked at. You know, in research, we love it when we have what’s called converging evidence, right, for a new theory. But I think, really, it’s not difficult to see that there’s a lot of diverging evidence that just has been ignored. And I think there are different reasons for it. You know, we’ve come through the Decade of the Brain, and so it was fun for somebody to be researching the brain, and they just kind of stopped there, though. They didn’t really sort of look any further. But there is literature out there to show that there are changes in muscles. There are changes in blood flow, micro blood circulation in the muscles, in the spine. There are differences in cytokine profiles in the white blood cells, the red blood cells, and in muscles. And there are spectroscopy studies to show that there is a reduction in the production of ATP energy molecules in the muscles of fibromyalgia patients.

So the guy who wrote the book, Dr. St. Amand, his theory is that fibromyalgia is actually an energy production problem. When you frame fibromyalgia within that explanatory context, all the symptoms start making sense, right? If your brain doesn’t have enough energy to do its job, frontal lobe functions go first, so attention, working memory, and emotional regulation. You know, your muscles are very much affected. Your uterus is a muscle that gets in trouble. Your gut does a huge amount of metabolic work; if it doesn’t have enough energy, that gets in trouble. Eventually, everything gets in trouble. And so it’s really the one way to explain what’s really going on in fibromyalgia.

His theory also includes the concept that the reason this happens is genetic in origin. There’s a defect in the excretion of phosphate in the renal tubules, and so it’s the uricosuric drugs that open up that channel, and phosphate as well as uric acid gets out through the same channel. That’s why the salicylates will block that effect. I think we already know that with gout drugs, you can’t take salicylates at the same time.

And so as you begin to purge out your phosphate, you go through these sort of clearing cycles, and gradually the body gets better. That phosphate will have been building up for the person’s whole life, and so it’s an individual variable how long it’ll take for them to get better. There’s sort of a formula: You sort of go backwards in time by about six years for every year you’re on the protocol. So I still have two or three more years to be completely cleared. So I feel like I’m getting younger before I have to get older, which is awesome.

Kevin Pho: So you talk about fibromyalgia being a trash can diagnosis in your article. So what exactly do you mean by that?

Margaret Macdonald: Well, it started with a patient who came in one day. She had had a non-healing wrist fracture and saw ortho about surgery, and she asked him, “You know, how is my having fibromyalgia going to affect my recovery and rehab after the surgery?” And he just kind of waved her off and said, “Oh, fibromyalgia is the trash can diagnosis.” So she came in to see me, and she was really upset. She was like, “Gosh, I don’t even know if I can trust this guy to do my surgery. You know, he doesn’t know anything about fibromyalgia.”

And, you know, it just got me thinking that it’s true. You know, our whole medical system, we’re so system-specific, right? We’re so specialist-based, and so we like things that fit into boxes. And fibromyalgia, they argue: Is it a rheumatological problem? Is it a neurological problem? You know, if we say it’s a mitochondrial problem, well, then no specialty is going to want to take it, right? And so it is kind of difficult. And so I can’t really blame the doctors; they’re just not being taught what it is, right? But at the same time, there is a certain arrogance in our field, right? We have a certain bias toward things we don’t understand, and we’re kind of biased about where we get our information.

And so, you know, this has unfortunately been kind of a common approach through the ages, because, you know, there’s kind of a misogynistic stink to this disease, as this one journalist put it, and the patients experience what this guy called medical gaslighting. So my first response to this guy was kind of upset. And so I developed this little acronym that stands for PRIVILEGE, you know: “Please refrain from insulting the victims of illness by labeling their experiences as garbage epithets,” right? I never sent it to the guy, but after I stewed about it for a while, I came across your website again, and I thought, “Ah, this is the place I should submit the article.”

So I was really just trying to point out, you know, that we need to address our biases, and we need to not write patients off just because we don’t understand what they’re talking about. And, you know, we also have to realize that patients, like I said, I didn’t know what normal was, so patients don’t always know what normal is either. And they also tend to, you know, they’re always trying to figure out, “What’s wrong with me?” They’re looking stuff up, and they’re talking to doctors, and so they’re often starting to hang their hats on things that they think are attributions, right? So they’ll say, “Oh, it’s my thyroid,” or, “It’s my food allergies,” or whatever it is.

And so it’s also up to us sometimes to stop and say, you know, when they have used one of these terms, sometimes we need to ask someone, “What do you mean by that exactly?” right? Because then you might find out there’s even more there that doesn’t fit into any box. But then again, something like fibromyalgia is when the patient’s telling you all kinds of things that don’t fit into a box, and all their basic labs are normal. Well, that’s when you should be suspicious of a diagnosis like fibro, right? So it’s definitely not a trash can diagnosis. It’s just not a neat, tidy one. And, you know, patients don’t show up, unfortunately, and say, “Hey, Doc, I have widespread pain, unrefreshing sleep, and cognitive affective problems,” right? So we just have to work a little harder with these patients.

Kevin Pho: So for doctors like myself and other doctors out there who may not have your expertise and education on fibromyalgia, what are some of your highest-yield tips to help educate us to improve our care of fibromyalgia patients?

Margaret Macdonald: Yeah, thanks. That’s a great question. I mean, first of all, when a patient says, “I’m tired,” because I can remember saying that to my GP, and, you know, she knew me. She was one of my colleagues. She knew what kind of a life I had. But even with that, she kind of ignored the fact that none of her other doctor patients would tell her that. You know, it’s like I was always going around sighing, and I’m like, “Oh, I’m so tired,” you know? So it’s just a matter of, when they’re telling you this, sort of standing back and going, “OK, is this just a ‘done, I’m tired,’ or is this the real ‘I’m tired’?” And, you know, everything is relative.

And then inquiring about sleep, which I think is a valuable thing to do for almost any medical disorder. To really make a decent little inquiry about sleep and how people feel in the morning is really important. And the other thing that is really common in fibromyalgia, because if you think about it as an energy disorder, they may be going along kind of coping OK, but, you know, they’re just sort of having a little more and more trouble coping. And then maybe some big thing happens in their life that takes up a lot of energy: an illness, an accident, a big stressor, a divorce maybe, or something. And then all of a sudden they just fall off the energy cliff, you know? And so it kind of looks to us, from the outside, like, “Oh, what just happened here?” But we sort of have to think about, “Well, wait a minute, what was really going on before that?” And then it all starts to fall together.

So it’s just kind of having that index of suspicion. You know, once they’ve come with three different pain complaints, and they’ve got some gut issues and maybe some anxiety too, just stand back and put that whole problem list together and go, “Wait a minute, this is a whole syndrome. This is not just these separate problems.”

Kevin Pho: We’re talking to Margaret Macdonald. She’s a former family physician and now an expert in fibromyalgia. Her KevinMD article is titled “Fibromyalgia is not a trash can diagnosis.” Margaret, what are some of your take-home messages that you want to leave with the KevinMD audience?

Margaret Macdonald: Don’t forget about this business of, you know, what is normal anyway, and just think about whether or not the patient really knows that. Just make further inquiries. Really listen to what the patient’s telling you. I worked with disability patients for a while too, and really, my experience is people don’t make stuff up. You know, you just have to listen to them and take them at their word, and it’s our job to figure it out, right?

The other thing would be that, you know, we get so caught up in this idea of standard of care, but there’s a lot we don’t know. I really like Adam Grant’s book “Think Again,” you know, thinking about what we don’t know, and fibromyalgia is a great example of that. So just because there happen to be a couple of medications that the FDA says are indicated, that doesn’t mean that fixes the problem and you can end there. You know, we do have to keep looking further. So much more needs to be studied with fibromyalgia. But, you know, the take-home there is: Fibromyalgia is not what you think it is, and it is fixable.

And so, you know, more research needs to be done, and hopefully you will be hearing about that in the next few years, if I have anything to do with it. And if there are any academics out there who are interested in doing more research on the mitochondrial basis of fibromyalgia, I’ve already got a pre-proposal written, so please contact me. I’m not affiliated. I can’t get a grant right now, but I certainly know what needs to be looked at. So, you know, at the end of the day, we all want to help our patients, so we do need to keep exploring.

Kevin Pho: Margaret, thank you so much for sharing your time and insight, and thanks again for being on the show.

Margaret Macdonald: Thank you so much. I love what you’re doing.

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