ADHD and Fibromyalgia in Adults: Unfulfilled potential- Part 2 of an interview with Dr. Dodson
For the podcast click here. Below are edited show notes.
We're talking about this because it turns out there is a strong connection between ADHD with fibromyalgia. One of many key points that Dr. Dodson made about ADHD and may apply to those struggling with both is that people with ADHD do not have a problem knowing what to do but doing what they know.
This struggle can apply to many people with fibromyalgia when discussing implementing healthy lifestyle changes. For example, you may agree that eating a healthy whole food, plant-based diet would be beneficial in helping your IBS and fibromyalgia, but you don't do it.
You may ask, "Why do I struggle in doing it?" part of the reason may be that you have untreated ADHD.
We left off last week's episode talking about how when somebody has ADHD and works in business, they may be brilliant, have great ideas, and have excellent problem-solving. But to be able to do well, they usually are paired up with a partner who can be the implementer, the doer of the creative ideas.
In marriage, the spouse who doesn't have ADHD is good at implementation. In contrast, the other spouse with ADHD may have great difficulty doing the tedious chores, which can be highly frustrating.
Treatment of ADHD can reduce the struggle. Whether or not the medication is used, having this insight and understanding of behaviors can be very helpful. This insight may also help you understand your relationship with your business partner.
My residency training and other doctors' training on ADHD vary.
I gave a talk on adult ADHD to the family practice residency program. I asked the question at the beginning, "How many of you treat adults with ADHD? I suspected no one would raise their hand.
"You all treat adults with ADHD. How many of you have had those patients who had that anxiety, and you've tried every SSRI, and it made them feel worse or didn't fix the anxiety? For many, anxiety or fear is the drive that gets ADHD people to do things they aren't interested in doing.
Sometimes treatment of anxiety reduces expectations with more tolerance of less optimal performance.
Perhaps one may aspire to be an engineer but drop out when one struggles with more rigorous academics. Treatment of their ADHD would have allowed them to matriculate successfully through those challenging classes without giving up.
Dr. Dodson addressed this in the podcast discussing the unfulfilled potential of those with ADHD.
"Unfulfilled potential. It's not that they grow out of ADHD as they become adults. Instead, they learn what they can't do and stop trying."
And for many of you who have fibromyalgia ADHD, this resonates. It's gratifying to see not just the six-year-old who finally gets help but even more so the 60-year-old. One patient of mine came back in tears after getting treated. He said, " I always thought I was stupid, or my guidance counselor said, You'll never graduate college." Despite that lack of vote of confidence, he overcame and did graduate college to work with disadvantaged kids.
Dr. Dodson shared that when Hallowell and Ratey wrote their book Driven to Distraction, "it caused adult ADHD to explode. They said their diagnostic feature was the patient who came in, who might be very accomplished. Still, the person comes in and says, I am so demoralized. I am so unhappy because I know that I have never come anywhere close to fulfilling my potential. Something keeps on getting in the way, And they said that's ADHD until proven otherwise."
Another observation is the connection between ADHD and fibromyalgia. Adhd is an attention problem, difficulty filtering out unnecessary stimuli to focus on something more substantial. The relationship with fibromyalgia is paying too much attention to excessive negative stimuli. Neck pain, light, and sound become much more distracting, and harder to filter that out. To focus on cooking a healthy breakfast and picking up your room. And also, adults often have decreased motivation after a while, especially when they get cycled with more pain and sleep, which become significant barriers to doing things. And it can start to spiral, especially when you get into the adult world where you don't have all of the support systems you used to have. Marriage and parenting add huge responsibilities which can push one over the edge.
Work, home, and parenting can get more and more overwhelming. One of the questionnaires on the fibromyalgia impact score is "how overwhelmed on average in the last week from 0-10? Most adults with untreated ADHD and fibro report very high levels.
I've had many people say 15 out of 10 because they feel overwhelmed.
Dr. Dodson shared the effectiveness of medication for ADHD
"That's one of the points I always make: we've got the world's best medications. Nothing works better for its condition than stimulants do for ADHD. The effect size is up close to two. I mean, nothing's that high. They're wonderful medications, but we have entirely failed with what to do you do when you need to pay attention. The stimulants do one thing spectacularly well, and that is when you're engaged; they keep you from being distracted. That is exactly what you pointed out. The problem is people with ADHD don't know how to get engaged in the first place. So they miss the whole first step for which the medications can really be beneficial. We put it in our clinic that what goes wrong for people with ADHD is that life, school, and parents give them the wrong owner's manual for their nervous system. All the rules and principles and helpful hints and stuff like that. The manual that they're given work great. They see them working great for neurotypical people.
They don't work at all for them, and so they assume there must be something wrong. That stuff that works for everybody else, I can't make work. And so by the time they get to me, they're hopeless. Let's call it what it is. They have tried so hard. They've tried every moment of their lives to master this, and all the stuff that's been given to them to help them has failed.
For instance, it used to be that all of the guidelines and stuff like that would say the treatment of ADHD is multimodal therapy, which was a fancified term that said you had to do more than medication. Back in 2007, they dropped multimodal therapy. It's not the treatment of choice now. Now it says if the medication worked, that's enough because all of the non-medication-based therapies failed completely. They had no detectable lasting benefit, and in good conscience, they couldn't recommend that people do therapies they know didn't work."
When you listen to Theresa's story on an earlier episode, she had such severe fibromyalgia. I recognized that she had coexisting ADHD and RLS as well. Treating them allowed her to least get into the moderate level of fibro from extreme disabling levels as measured by the FIQ-R.
The healthy lifestyle, diet, and gradually increasing exercise added additional improvement. Some people with untreated ADHD may be managing okay because they're an auto mechanic and on their feet, constantly moving, doing things that they can somewhat master because of their high IQ and interest.
Many with fibromyalgia get diagnosed by rheumatology, but they're much more inflammatory experts. They're not psychiatric experts.
But the definition or symptoms of fibrofog are problems with concentration and memory. This can lead to confusion, losing your train of thought, forgetting or mixing up words or details, and often motivation. I saw Dr. Dodson smiling when I shared that on the Zoom interview. "Well, what does that sound? He said, "ADHD."
I talked with Dr. Joel Young, a psychiatrist who researched treating ADHD in those with chronic fatigue syndrome with a stimulant called Vyvanse. Many feel Chronic Fatigue Syndrome is the other half of the walnut of fibromyalgia.
Psychiatrists had already tried their antidepressants and anxiety medicines for these patients without much improvement.
Symptoms on the fibromyalgia impact score were cut in half, which is exciting. Can more of that be done? More studies? Sure.
There are often other issues going along with ADHD, like RLS.
I had a patient with diabetes, severe IBS migraines, and chronic pain. Still, interestingly, he had classic RLS and ADHD. The RLS had never been diagnosed, but the ADHD had been in the past, but he no longer was taking meds. The reason his doctor gave him was that since he was an adult now, he no longer needed it. He thought it was normal to be tired all of the time in his early 30s. He had a new baby and gave everything to get out of bed and go to work. And because he had a wife and a child, he pushed so hard. And I think that so many people with ADHD and fibromyalgia are trying so hard to do everything.
And often, I ask people who do graduate college or get through things, why didn't you give up when you were there?" Usually, they say, "I had to study three times as hard, but I wanted it so much and made myself do it."
With ADHD, fibromyalgia for many people is challenging, and it warms my heart to be able to help.
Dr. Dodson shared, "the saying is that people with ADHD have to work twice as hard for half as much." Another analogy I've heard is having square wheels on your car instead of round wheels. You can get there, but boy, it takes a lot more effort, and when there's a lot more to do in life. When you have a lot of things to do and don't have as much time, that's where the crunch of the crucible occurs.
And that's often where there is a mismatched reality. I have all this to do, but I am not completing it or there is overwhelming sustained effort required.
Dr. Dodson shared," just to emphasize what you're saying, that's how people come in for treatment. Something happens in their life and it is almost always a good thing.
A child is born, they get a promotion, and now they have five people reporting to them. They have to do more than organize themselves, and it overcomes their ability to compensate further. And it looks like suddenly ADHD is there, and they fall apart when they've been compensating their entire life. It's the straw that breaks the camel's back. And it, that's how they come in. It's good things happening that bring people in for treatment.
One interesting thing about fibromyalgia is that traditionally thought that fibromyalgia was about a nine to one ratio of women to men.
Those were based on old criteria, based on trigger point testing. Now with newer criteria where you don't have to rely on unreliable trigger points to make the diagnosis, it's probably more of a six to four ratio of women to men. In contrast, ADHD historically was recognized in boys, but not girls, let alone women.
But the reality is it's 50-50. It affects men and women equally.
Dr. Dodson shared, "Women are much less likely to be diagnosed. And the field is called noisy ADHD versus quiet ADHD. Little boys are hyperactive, loud, disruptive, that sort of thing. They have much more impulsivity, whereas little girls are much quieter on average.
Sitting still might be acceptable for everybody. They're in the back of the room, daydreaming or playing with their hair or clothing. And it's also subtle discrimination in that less is expected of women. A little girl who's not doing well, not living up to her potential, they'll say, Oh, well, she'll be a good school teacher, or she'll be a good mom, or something like that, which you could be valedictorian and go to Harvard. They lower their expectations for females. When I was in my residency, I was taught women did not get ADHD, period. Just don't even bother looking. And it was because they weren't disruptive and obnoxious the way boys are. They got missed and so they weren't even studied in the first place.
The first article published on females with ADHD was in 2000, just 20 years ago. Up until then, they were totally ignored. There are whole areas of the ADHD syndrome that are intentionally ignored. The whole thing about an interest-based nervous system that's the cognitive component of ADHD.
They made a decision 30 years ago. We'll put it aside while we establish the validity of this syndrome. As you know, it was an ugly battle to establish ADHD as it really existed. But the thing is we never came back and studied the things that we put aside. So we set aside the cognitive features of ADHD, we put aside the emotional aspects of ADHD, and we didn't look at them.
"We put aside gender differences and didn't look at them. But we set aside the effect of ADHD on relationships, and we've only just recently begun to look at it. And, to the point where the United States researchers have held the field back, they want to keep focusing on behavior, behavior, behavior."
"And the rest of the world finally got sick and tired of waiting for you guys to move. And so most of the good stuff right now is in European literature. Nothing new has come out of the United States in 25 years.
If you think there are very few doctors who read about ADHD, there are really very few docs who read the European Literature.
So that's where all the good stuff's coming from."
If you're listening to this, you may have a lot of things going through your mind. You may be wondering, Wow, that resonates a lot with me.
There's so much that I find interesting about ADHD and fibromyalgia. We must catch up on excellent diagnosis and management of fibro.
We are woefully behind in the management of ADHD, especially in adults. Why is that? This may be leaving you feeling frustrated. I often have patients who come in and they're happy that they're getting better with coexisting, comorbid fibro with ADHD.
Why could I diagnose and figure things out when they have struggled with this for so many years? It takes about 17 years for something understood in medicine to be implemented routinely. And about every seven years, half of what we understood about a problem or how to manage a problem changes. So there's a lot to keep up with. We are doing an excellent job in managing mental health conditions like depression when at least diagnosing and screening it. We recognize that untreated depression can significantly impact health outcomes, whether it's control of diabetes or risk of heart disease.
But now it's time to help recognize the role of ADHD in many other health conditions. We'll talk more about untreated ADHD and the negative impact it can have in future podcasts.