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We will continue the conversation with Dr. Bill Dobson in this week's podcast. This is an essential conversation for many people with fibromyalgia because of the coexistence of ADHD and fibromyalgia. There are several key points that Dr. Dodson brings up today in our discussion. The average person who has ADHD as an adult has seen 3.3 physicians and has had 6.7 failed SSRI serotonin selective reuptake inhibitor trials over seven years before they are finally diagnosed. Most people end up just giving up trying to get help and get better, which is very frustrating.
There also are some organizations to help you find a physician who feels comfortable in both the diagnosis and management of ADHD. There's the N A D D A. And that is the adult organization for ADHD. There's also Chad, c h a d d.org, and add.org that you can use to help find a physician in your area and learn more about ADHD in your local region.
Another essential point he brings up is that about 90% of adults. With ADHD were referred or came to see Dr. Dodson because a family member was struggling with ADHD. Was diagnosed, got treated, and had a remarkable improvement in their functioning.
Dr. Dodson discussed the training physicians receive on ADHD.
"If you think there are very few doctors who read about ADHD, there are very few docs who read the European literature on it, but that's where all the good stuff's coming.'
Getting back to making the diagnosis, you say it's nebulous, but it isn't so nebulous that a doctor can't make the diagnosis, and it's just a guess that you have to be the super-specialist like yourself or not at all.
ADHD is something that when you start to recognize and know what to look for and ask the right questions. I know I've had patients who've told me, Dr. Lenz, "you ask questions that I've never had doctors ever ask me before."
I think one of the observations with ADHD is they thought everybody was like this. They didn't know they were missing, like someone who doesn't know they can't see until they get glasses. That's their normal. And until, like, the history of the dad who says, well, I was just like him when I was in first and second grade. I, you know, and, and you then, and often that's where my education on ADHD was.
ADHD is genetic. I see families with multiple generations of ADHD. Unfortunately, less than 10% of adults who have ADHD, over age 30,
even know they have it let alone or are even being treated for it. If they are 30 and under, there's a higher chance.
Many teachers may be nervous about openly sharing their concerns, but Dr. Dodson reminds us that "the federal law requires them to. "
To say something. They believe they'll get in trouble if they do, and sometimes that's because they did get burned by parents. The parents may have said, well, there's nothing wrong. It would help if you taught better. Part of that, and this is this humility and realization, is that if there's something wrong with Johnny or Julie, then there's probably something "wrong" with me, and I don't want to say there's something wrong.
I like the terms neurotypical and neuroatypical, different software operating systems of the brain. I use the analogy of needing glasses. If you can't see, you'll never function as well as you can. When you get the right prescription, you still need to study. You still have to do all of those things. Your job is sometimes to come up with cool, creative ideas, but often it is filled with tedious routine aspects that can grind you down. Even if you are the architect, you're grinding, doing the reports, organizing, and boring stuff.
So if you think you may have ADHD, like fibro, it can be hard to find a doctor who is knowledgeable, experienced, and comfortable in their management.
Dr. Dodson shared that "no one has taught them how."
This leads to delayed diagnosis and suboptimal treatment in many cases.
So how do you make the diagnosis of ADHD?
Dr. Dodson shared his insights into the utility of neuropsychological testing for diagnosing ADHD.
"ADHD does not show up on neuropsych testing."
Unfortunately, this use continues. There's a lot of good information out there. Russell Barkley has a paper on this. But a diagnosis of
ADHD, as Dr. Dobson has said in the first part of the ADHD series here, it's made by a careful clinical history and rating scales to make the diagnosis.
What ends up happening if the diagnosis is delayed? That means an unnecessary struggle for those who have both fibromyalgia and ADHD. A study out of South Africa in 2018 in the Journal of Pain showed that in a clinic treating patients with fibromyalgia, approximately 46% had ADHD based on the World Health Organization ADHD version 1.1 scale.
This can significantly underestimate ADHD as people with ADHD tend to underestimate their impairment. Also, it doesn't consider a clinical history that can help clarify discrepancies. It also doesn't consider that somebody may be working in a job that is not as cognitively challenging, which may not reveal their actual impairment.
There also is a lack of experience by many physicians in diagnosing and treating ADHD. There's a significant stigma around ADHD, which can lead to unnecessary treatment delays.
One of the reasons I decided to write a book on fibromyalgia and start the podcast is that I cannot see all 10 million people struggling with fibromyalgia.
Maybe they can learn more. Perhaps they have a doctor who's neutral about these things but is open to learning because they appear complicated and too much work. And hopefully, the doctors who are listening, or if you are listening and you have this, you can share this with your doctor to help them grow more in their understanding.
Because in the end, the patient has to get a doctor willing to treat,
and as Dr. Dodson shared, "the doctors are the stubborn clog in the pipe. We got lots of good medications. We have lots of patients. The plug is the physicians who don't know how to prescribe, so they do nothing. The statistic is that the average person at the time of diagnosis has seen 3.3 physicians.
They have had 6.7 failed SSRI trials over at least seven years. In other words, the fact that the physicians don't know what they're doing, and don't know how to diagnose or treat, puts off diagnosis for seven years and exposes them to multiple failed attempts, and most people drop out." They give up. They said, 'okay, I've tried getting treatment, and it didn't work, so I'm gonna stop looking any further.'
Physicians have become a problem rather than a solution. "
And one and that, and that's so frustrating. And my heart goes out to somebody who may even be listening to this who has given up. I've read many stories of delayed diagnosis on ADDitude magazine's website.
You may know how to fix your house or watch a YouTube video on fixing something. You can learn how to do it and get the parts.
However, with ADHD, a doctor or prescriber component is needed, which can be highly frustrating.
Dr. Dodson shared,
"Finding that doc is probably the biggest problem because usually your family practitioner, your pediatrician, especially your general practitioner, Has, I mean, they're good people.
They're trying hard, but it just wasn't part of their training. It was never mentioned. For 93% of psychiatrists, it was never mentioned in their training. That's not their fault. It's medical education. So you have to find somebody who likes doing ADHD work in adults. How do you do that? Well, the best thing to do is to go to a meeting, either of the NADDA, the National Association of ADHD and Adults, or CHADD, which is children and adults with ADHD.
And on both of those, the adult organization is add.org. And for children, it's chadd.org, and they can tell you where the meetings are in your area, and you go and talk to people who are just a year ahead of you. They know who's good and who's not. If you're in a small town or a rural town, you may have to go and drive a couple of hours into a big city to find.
Once you get diagnosed and the medication is fine-tuned, that's it. Tolerance doesn't develop. The medication doesn't have to be changed after that. And most primary care docs are willing to continue the prescriptions if somebody else has fine-tuned them. So you need to find somebody who knows what they're doing.
Otherwise, you're going to get frustrated. "
One contributing factor is that stimulants are controlled substances, at least in the United States and probably most places in the world, which makes some patients and physicians wary of prescribing them. How much concern should they have about the safety and addictiveness of stimulant medication for treating ADHD?
Dr. Dodson shared, "this is another example of that axiom of hello. I'm from the federal government and here to help you. These medications should not be controlled substances. For the first 70 years, they were over-the-counter medications. You could walk into the pharmacy and pick it up off the shelf.
Doctors used them for nasal or chest decongestion or asthma. They became a controlled substance in 1958 when, after World War II, governments just dumped lots of stimulants on the market that they'd been giving to soldiers to keep them awake. And there was some minor problem in Sweden, and everybody around the country said, well, let's monitor this.
And so they made them schedule four in 1958. Another 20 years passed and it's now 1978, and this country suddenly discovered drug abuse. Cocaine had become a big deal. Methamphetamine abuse had become a big deal. And so the federal government said anything that can be made into methamphetamine, we're going to put in schedule two with methamphetamine.
And they never slowed down enough to ask, can you make methamphetamine out of amphetamine? And the answer is you can't. You can make methamphetamine out of Sudafed, which they left on the shelves for another 30 years. It's largely incompetence in the federal government.
If we go through them and say, okay, let's make a list of the features of drugs that get abused, people really like them. They come back cause they want to feel that way again. There's a ready market for them. People think about it all the time. They crave it, and people have to fight with their kids to get them off addictive drugs. That is a pretty good list.
Tell me about the drugs for ADHD. If you are below your optimal dose, you don't feel anything.
And if the dose goes a little bit too high, people complain bitterly about how these medications make them feel. There is no euphoria. It doesn't feel good. And the biggest problem is people forget to take their medication. There's no craving, addiction, or anything like that, and parents must fight with their kids to take medicine. So when you just lay it out, the medications for ADHD are precisely the opposite of drugs of abuse. When you look at how many people actually take their ADHD medications, 50% don't fill the third prescription. We've already lost 50% of people in the first two months.
At the end of the year, only 13% of people are still taking medication. In other words, an 87% attrition rate, does that sound addictive to you? And 87% fall away. People get these ideas in their heads and never question them. If they think about what they actually know about the medication, they have virtually no addictive potential, and tolerance doesn't develop.
The reason that people try to abuse them is that they're there. And so, will people try to abuse them? You can bet your bottom dollar they will try to abuse, but the people who actually continue to do so fall into a very narrow demographic.
White male fraternity members who were already alcoholics by the time they got to college and they used the stimulants to stay awake so they could drink more. Use and abuse by women, Asians, blacks, and Hispanics are almost unheard of. It's a very narrow demographic."
There is minimal potential for abuse, but careful monitoring of refills is done through electronic drug records to help tease those out.
How do most patients come to Dr. Dodson to pursue their ADHD diagnosis and treatment?
"90% of my adults got to me in a very particular way. Because ADHD is so genetic, somebody in the family will get started on medication. Their life changes, and everybody sees they're a different person.
They're doing great in their life for the first time. So they start talking about what happened? Well, I got diagnosed with ADHD, not on medication, and my life's totally different. They continue talking, and the person goes, wow, that sounds exactly like me. So he tries his cousin's medication and sees that it works beautifully. And he comes in to see me get his prescription. And so when I ask him, you know, their story about how they got to me? And they kind of sheepishly tell me, well, I tried my, my cousin's medication. They expect me to be angry with them. And I'm not. My point of view is, first of all, don't take other people's medication.
That's just stupid. But the way I look at it is every teacher you ever had failed you. Every doctor you had failed you. You figured it out on your own, and you're doing the right thing by coming in to get your own prescription. That's great. Congratulations. I admire you. And you see the tension go out of them, and I'm not going to yell at them or drug addict and stuff like that. They basically played the hand that was given to them. "
Many of you may feel like you've played the hand given to you with fibromyalgia. You've gone to your doctor. You've shared your symptoms, and maybe the right in-depth questions weren't asked of you, and that didn't lead to an adequate, comprehensive assessment of all of the co-existing and comorbid issues, one of which may be untreated ADHD. We'll continue this conversation with Dr. Dobson. If you have any questions, feel free to email me. I'd love to hear your feedback that I can share on future episodes. I hope that you enjoyed the podcast. If you do, please hit the like or share button and subscribe and share this with others on social media to help spread the word.
Until next week, go, Team Fibro.