Awareness abot ADHD, particularly in adults, is growing. Photo / Getty Images
A leading specialist speaks about the link between ADHD, hypermobility and inflammation – and how to excel with the condition.
“Do you have time to listen to a poem?” Dr James Kustow, a leading psychiatrist and specialist in ADHD (attention deficit hyperactivity disorder), asked on our first introduction. “Erm, yes of course,” I answered, perplexed as to what poetry has to do with the theme of his new book, How to Thrive with Adult ADHD.
The poem is titled Systemic Toxicity, and if you are one of the people who, with ADHD, also suffer from a catalogue of puzzling physical conditions including chronic pain, fatigue, irritable bowel syndrome (IBS), brain fog and dysautonomia, then the rhymes will resonate deeply. Kustow sums up what the medical community at large has yet to acknowledge: the undeniable yet complex connection between body and brain – supported by emerging studies showing a clear link to physical inflammation and neurodevelopmental conditions such as ADHD.
An integrative psychotherapist working in the UK NHS adult ADHD service alongside his private practice on Harley St London, Kustow is also a medical director at The Grove Practice and the director of Education for UKAAN, the main professional organisation for adult ADHD in the UK. Moreover, he is an experienced speaker and has co-authored a number of scientific papers on the condition.
And yet what makes Kustow most compelling is his relatability – he himself has ADHD, a diagnosis he received as an adult.
“I was a generally healthy young kid who played loads of sport, especially rugby, got loads of injuries and I often put my foot in it. But I was reasonably bright, and therefore I quickly learnt that I had to rein it in or mask some of these things,” he explains, emphasising: “I could never concentrate. I could never focus when reading and I was very ashamed about it, and so I covered it up. But the truth is I had ADHD that wasn’t picked up. And so I went through life working ultra hard to compensate, knowing I was different, but not knowing why I could do some things really well but other basic things I struggled with immensely.”
Kustow eventually received an ADHD diagnosis aged 34. He has spent the past decade and a half unpicking the complex nature of the condition, gleaning insights from his own personal experience while studying and contributing to emerging research on the causes and associations of adult ADHD, many of which are misunderstood and rarely acknowledged.
Awareness about the condition, particularly in adults, is growing. Some say ADHD is being over-diagnosed, a premise Kustow rejects citing The National Institute for Health and Care who estimate, based on research studies, that 3-4% of adults have ADHD in the UK – yet well under a fifth have actually been diagnosed, according to the data. “It’s most definitely not over-diagnosed – we are in catch-up presently as more adults are realising that ADHD explains their difficulties,” he surmises.
In his new book, How to Thrive with Adult ADHD, Kustow lays out a tested practical framework for not only managing the symptoms of adult ADHD, but excelling with a disorder many attribute to depleted levels of the brain chemicals dopamine and noradrenaline. Kustow argues that reducing ADHD to the child-centric criteria used to diagnose it has done those with the condition a disservice. It isn’t the entire picture, and doesn’t wholly capture ADHD in adulthood, particularly adult women (historically research has been carried out on pre-adolescent boys) who are much more likely to hide and mask their symptoms to fit into societal expectations.
“According to our current way of describing it, ADHD is a disorder characterised particularly by persistent and impairing features of inattention (including distractibility, disorganisation and forgetfulness), hyperactivity (of both body and mind) or impulsivity (of actions and words), or aspects of all three. Most of those affected also experience emotional dysregulation, or mood instability, in addition to the features listed above,” Kustow writes in the book.
He adds: “Personally, I find it most helpful to think of ADHD simply as a disorder of regulation (or a ‘dysregulation disorder’). This aptly describes my personal experience, and that of the many patients I have worked with, where pretty much all difficulties experienced relate back to an issue with one’s ability to regulate…something.”
In order to understand how disordered regulation plays out in those with adult ADHD, Kustow has presented 10 key domains based on current and emerging research.
Of all the domains Kustow references, “immune function” is the most cutting edge and could be a clue, he says, to one of the drivers behind ADHD initially presenting in adulthood. “About 15 years ago, I started noticing that my patients with ADHD often had hypermobility or connective tissue-related issues as well. I didn’t understand it and not many people were talking about it back then.
“Over a month-long period, I read everything on the topic and began to map it out. Suddenly I saw this network of problems around hypermobility that many of my patients with ADHD were complaining about,” he adds. These problems, says Kustow, include dysautonomia (malfunction of the autonomic nervous system causing dizziness and heart palpitations upon standing) as well as immune over-reactivity, gastrointestinal problems and seemingly high rates of mental illness including anxiety, depression and ADHD.
Then came a study in 2022 by Dr Jessica Eccles, a British psychiatrist and researcher, that found that about 50% of adults with ADHD are hypermobile. “I had noticed a similar pattern emerging in my own practice,” says Kustow, who had also been diagnosed with hypermobility syndrome some years earlier. This was a lightbulb moment not only for Kustow, but for the wider psychiatric community.
Hypermobility (which according to the NHS is caused by faults in certain genes that make connective tissue weaker) is also on a spectrum and can range from lax joints without any associated issues, to more severe cases of Ehlers-Danlos syndrome (EDS) when loose, unstable joints can dislocate more easily and lead to joint pain, fatigue and a number of other problems. “A large cluster of people with hypermobility have wider health problems linked to the immune and autonomic nervous system,” emphasises Kustow.
Outwardly, being extremely bendy could be deemed a bonus – those with hypermobility are more flexible and good at sports like gymnastics, for example. But there can be something more sinister going on beneath the surface. “When people are not moving as they should their immune system recognises this as a threat and acts as if your body is in danger,” he explains. “Intuitively the body knows you shouldn’t be moving your joints past a certain point because it causes tissue damage, therefore those who are hypermobile could be experiencing low level, chronic immune activation that has a strong neuropsychiatric signature,” explains Kustow.
Kustow calls this “the somatic super syndrome,” and has developed a model to visualise the link between hypermobility disorders (EDS or HSD), autonomic nervous system dysfunction and mast cell activation syndrome (MCAS) and neuropsychiatric conditions like ADHD. A 2015 study published in the Journal of Allergy and Clinical Immunology found that 65% of people with hypermobility disorder also had MCAS. Kustow believes this is a key piece of the puzzle that deserves further study.
Mast cells are white blood cells that play an important ‘first responder’ role in the immune system. These cells store histamine which is released when the body is exposed to toxins, allergens or infections. In some people (often those with a hypermobility disorder), this normal immune reaction can become dysregulated resulting in the mast cells getting stuck in a chronic and excessive release of histamine which manifests in allergic reactions such as itching, rashes, hives, pain, fatigue.
One way to ease the symptoms of excess histamine is to take an antihistamine daily, something Kustow does himself, while observing a moderately low-histamine diet which limits foods like aged meats, cheese and fermented foods that are high in histamine. “It’s not as simple as taking an antihistamine but it’s an easy, inexpensive thing to try and see if there’s any improvements,” says Kustow.
The theory builds on the premise that if your whole system is bathed in inflammatory chemicals, even in small doses, for years and years, these chemicals are no doubt affecting not only the body (causing joint pain, fatigue, dizziness, irritable bowel syndrome [IBS]) they are also negatively impacting brain function. “Neuroinflammation occurs when inflammatory chemicals gain entry into the brain,” says Kustow adding: “When the brain is inflamed, or there isn’t enough blood flow, you essentially get brain failure. What does brain failure look like? Anxiety, mood disorders and ADHD.”
Mast cell activation syndrome is difficult to test for accurately and is often provisionally diagnosed on clinical grounds, whereas hypermobility is determined, usually by a rheumatologist using the Beighton scoring system which tests joint flexibility in nine key places. If you’re experiencing a number of inflammatory symptoms from pain to fatigue and allergies, a good functional medical doctor will often be able to connect the dots and treat the body systemically, possibly alleviating the need to visit several medical specialists, something many with this cluster of difficulties, including some of those with ADHD, find frustrating.
Kustow is not against medication. Stimulants, says Kustow, are among the most effective mental health medications there are and shouldn’t be overlooked as numerous studies show the negative outcomes of ADHD (74% of those with ADHD are more likely to be involved in road traffic accidents, for example) are reduced dramatically with medication. “So long as blood pressure is monitored regularly, and controlled, ADHD medication is for the most part a net benefit,” he stresses.
Some people can’t or don’t want to take medication, thus the pillars Kustow prescribes have been part of a personal quest to deliver a holistic treatment protocol. “I’m very sensitive to stimulants so I take a small dose and combine it with the body-based strategies I’ve honed over the years on myself and my patients,” he tells me, insisting that despite its proven track record, medication will only get you so far. In addition, you need to deploy lifestyle changes to reduce inflammation and other strategies to manage your environment.
While the book goes into more detail the following tips are drawn from Kustow’s “how to thrive” method.
Adopt a growth mindset – catch negative thoughts early and think of more accurate and balanced alternative explanations. This is known as “reframing”.
Get enough high-quality sleep. Sixty per cent of people with ADHD report feeling sleepy during the day and have a tendency to stay up late. Lack of sleep exacerbates inflammation.
ADHD can lead to “time blindness”. If you struggle with lateness add 30-50% to your initial estimation of how long things will take.
Always losing or misplacing things? Have a set place for key items like keys, phone or work security pass.
Regular decluttering once a week will help reduce feelings of being overwhelmed.
Eat more anti-inflammatory foods such as green vegetables and cut back on red and processed meat, both of which increase inflammation.
ADHD predisposes people towards disordered eating, so stick to regular mealtimes.
Reduce the toxins in your environment. Swap plastic water bottles for metal, invest in a water filter and switch to organic cleaning and personal care products.
Practice diaphragmatic breathing exercises to manage your emotions.