Links between hEDS/HSD and anxiety
Taking a closer look at some of the remarkable research that is helping to provide answers
Anxiety is common in the general population, but the experience of anxiety is greater and more frequent in people living with hypermobility (joints that can move beyond the normal range of motion).
‘Of course, anxiety is normal in stressful situations and it is perhaps, to be expected that patients with chronic and/or complex conditions, such as hEDS or HSD are likely to experience feelings of anxiety, as factors such as
uncertainty about future health,
poor treatment by health care professionals who have little understanding of hEDS or HSD,
potential loss of earnings, and
inability to plan because of unpredictable symptoms take their toll.
However, the links between hEDS/HSD and anxiety are far more complex than originally thought. Studies show that in the general population around 20% of people have unusually flexible joints, but in a population of people with panic or anxiety disorder around 70% of them have unusually flexible joints!
Several lines of research are being explored in the pursuit of better understanding.
The first involves a branch of genetics concerned with the study of the structure and function of the cells and chromosomes and considers the genetic predisposition to anxiety and the nature and extent
of that contribution [12, 13. 14. 15].
The second, and most well known, is looking into the significantly higher prevalence of autonomic nervous system symptoms (dysautonomia) in joint hypermobility patients as found by Gazit Y. 2003.
The third involves findings which suggest that processes compromising function in neuro- developmental conditions may occur in individuals with hypermobility, seemingly enhancing their vulnerability to stress and anxiety (Eccles J. A.et al 2012).
Please note: Each of these is discussed in more detail in my book Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder (Chapter 2, page 65-68).
With this in mind, I decided to look closer at one area of remarkable research in particular, which is helping to provide answers to this phenomena.
Dr Jessica Eccles is an academic clinical lecturer; psychiatrist and HMSA Medical Adviser, researching the connections between joint hypermobility, autonomic dysfunction and mental health at Brighton and Sussex Medical School. Her research has found that people who are hypermobile are more sensitive to bodily feelings, such as changes in sensations like heart rate. People with hypermobility may also be more likely to experience faster heart beats because of a more reactive ‘fight or flight’ nervous system, which may be related to a condition called postural tachycardia syndrome (PoTs) - a condition, frequently associated with hypermobile Ehlers-Danlos syndrome, in which a change of posture - from reclining to standing - causes an abnormal increase in heart rate.
The research took participants, (group one - half suffered with anxiety, and half who did not; group two - half who were hypermobile and half who were not) and subjected them to a round of tests, including:
autonomic function testing to look at the integrity of the fight or flight nervous system;
brain scans to look at emotional reactivity of the brain.
The autonomic tests - showed that the ‘anxiety group’ had increased heart responses on standing (regardless of whether they were hypermobile or not). When they dug a little deeper again, it became clear that the participants in the anxiety group who were both anxious and hypermobile had far greater heart rate rises upon standing than the other participants in the study (anxious or not).
Symptoms of PoTs include (but are not limited to):
shaking / tremulousness
and may well be mistaken for symptoms of anxiety [9,10,11]
The brain scan testing -showed that anxiety was associated with activities of the brain in areas such as the amygdala and insular (key emotion processing regions of the brain) and that the relationship between the amygdala and the insular and anxiety was very strong in those with hypermobility, but not in those people without. If you were hypermobile the activity in the amygdala and the insular correlated really strongly with your anxiety level and if you were not hypermobile there was no relationship.
Jessica says: “My first piece of published work, from 2012, shows the amygdala (the area of the brain involved in emotional memory and basically the ‘seat’ of fear) is, crucially, different [bigger] in people who are hypermobile!” This was the case even in people who were not clinically anxious; not even complaining of anything else, but were hypermobile. ...the degree of activity in this part of the brain correlated mathematically with how hypermobile you were [using the the Beighton score].” [2, 7]
In more recent work, Dr Eccles, along with with Prof. Hugo Critchley (Chair of Psychiatry and Autonomic Neuroscientist) has been leading research into interoception and mental health (interoception is associated with the area of the brain called the insular). In her video entitled: Hypermobility and the Brain, Dr Eccles says: “Our work is at the forefront of delineating the idea of interoceptive awareness.”
But what is interoception and interoceptive awareness?
Many of us with hypermobility will have heard of proprioception - the sense that makes you aware of where your body is in space (receptors in your muscles and joints tell you where your body parts are). When you walk up or down stairs for example, your proprioceptive sense should let you know where your foot is in relationship to the step without having to think about it; when you walk through a door-frame your proprioceptive sense allows you to pass through without bumping in to it. People with hypermobility often report having trouble with this sense, making them seem clumsy (this is known as proprioceptive dysfunction).
In her article ‘Interoception and Sensory Processing Issues’, Amanda Morin writes: ‘Interoception is a similar concept [to proprioception]. Just as there are receptors in your muscles and joints, there are also receptors inside your organs, including your skin’. 
These receptors are also found in the fascia - a film of internal connective tissue, made mostly from pliable collagen, that covers and surrounds our nervous system, blood vessels and internal organs. The receptors send information about the inside of your body to your brain, helping to regulate (amongst other things) our cognitive-emotional processes.
Interoception helps you understand and feel what’s going on inside your body. It informs us about our internal bodily sensations, such as the pounding of our heartbeat, the need to breath more deeply, or the feeling of ‘butterflies’ in our stomach.
‘The insular is the part of the brain where we represent how we feel inside ourselves and, also, how we feel about how we feel inside ourselves! It is also important in disgust and fear.’
So, interoception is a sense. It is defined as both a conscious and unconscious sense of the internal state of the body. Interoceptors are able to stimulate the areas of the brain that control the emotional state.
The findings specifically link hypermobility to structural differences in key emotion processing regions of the brain, notably in the amygdala and insular volume. In a particularly vulnerable group of people, they offer new insight into the processes that link anxiety to bodily feelings.[2, 6, 7] They suggest that the same processes that compromise function in neuro-developmental disorders may occur in individuals with hypermobility, and that this may enhance a person’s vulnerability to stress and anxiety. Those participants with hypermobility were much more sensitive of internal bodily sensations (those we might associate with anxiety, such as increased heart rate). According to the research ‘...they report many more than the non hypermobile, but they are no different at actually, accurately reporting them.’ ‘...there seems to be some sort of “interpretation mismatch’ between what these individuals are subjectively experiencing and objectively experiencing.”
The observations, of both the autonomic testing and the brain scan testing, endorsed hypermobility as being a ‘multi-system’ phenotype (a characteristic or trait that impacts many areas of the body)
Addressing anxiety and anxiety-like symptoms
Just because an individual’s life experiences or biological makeup leaves them disposed to anxiety, it does not mean that this must be the outcome, or that nothing can be done if anxiety is experienced’. 
Research shows that the brain and body are always developing, never staying the same and, through guidance and appropriate intervention, can be taught to respond more appropriately to stressors, thus reducing or eliminating the symptoms of anxiety’.
Where PoTs is involved, patients may be taught self management strategies or prescribed medications which enable them to manage symptoms (including anxiety-like symptoms) better. Advice can be found from the charity PoTSUK and at: www.nhs.uk/conditions/postural-tachycardia-syndrome/.
Mindfulness meditation, cognitive behavioural therapy (CBT), and eye movement desensitisation and reprocessing (EMDR) can all provide support to those experiencing anxiety, and teach problem-solving skills and enhanced coping strategies.’ When anxiety is disabling, medications may provide temporary relief, but they are not for everyone and do not necessarily address the underlying triggers.
Jessica is currently developing an intervention aimed at reducing anxiety in people with hypermobility. Jointly funded by Arthritis Research UK, this work offers the chance to create and test the new anxiety treatment and will enable Jessica to test how effective the new therapy is, compared to what is already available.
It is hoped that this research will result in the ability to treat people who are hypermobile and anxious in a more personalised way, using a range of medications and styles of psychotherapy that may suit individuals with hypermobility better.
Content within this website and the individual contributions contained in it are protected under copyright by the author and publisher (other than as may be noted herein) - © Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder. by C. Smith 2017. Images bearing 'redcliffhousepublications.co.uk' are designed and owned by the author and subject to copyright, all rights reserved.
1) Anxiety and hEDs/HSD section (pages 65 - 66) - Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder, by Claire Smith published 2017, © Redcliff-House Publications
2) Talk by Dr J. Eccles entitled: Hypermobility and the Brain. https://www.youtube.com/watch?v=d_OFowG-5mw&list=PLo1JXIbo_rzNFxoTth6ZGMfNd0IO2JWVQ&index=3
3) ‘Interoception and Sensory Processing Issues, Amanda Morin and Reviewed of ‘Understood.org“ and reviewed by Keri Wilcot, Occupational Therapist.
4) Khalsa, Sahib S. et al (2016). "Can Interoception Improve the Pragmatic Search for Biomarkers in Psychiatry?". Frontiers in Psychiatry. 7: 121. doi:10.3389/fpsyt.2016.00121. ISSN 1664-0640. PMC 4958623. PMID 27504098.
5) Mind over matter, by By Ali Cranage April 2018. https://www.mqmentalhealth.org/posts/mind-over-matter. (viewed 6th June 2019)
6) Developing a new targeted treatment for people living with anxiety and hypermobility.
7) Eccles J. A. 2012 - Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms. Br. J. Psychiatry 200, 508–509. doi: 10.1192/bjp.bp.111.09246
8) Eccles J. A. 2014 - Joint hypermobility and autonomic hyperactivity: relevance to neurodevelopmental disorders. J. Neurol. Neurosurg. Psychiatry 85, e3–e3. doi: 10.1136/jnnp-2014-308883.9
9) Symptoms of PoTs
10) Postural tachycardia syndrome www.nhs.uk/conditions/postural-tachycardia-syndrome/
11) Managing Anxiety (PoTSUK)
12) Gratacos M. et al 2001 - A polymorphic genomic duplication on human chromosome 15 is a major susceptibility genetic factor for panic and phobic disorders. Cell. 2001;106:367-379.
13) García Campayo J. 2010 - Association between joint hypermobility syndrome and panic disorder: a case-control study. Psychosomatics. 2010 Jan-Feb; 51(1):55-61. [PubMed]
14) Morris-Rosendahl D.J. 2002 - Are there anxious genes? Dialogues Clin Neurosci. 2002 Sep; 4(3): 251–260. PMCID: PMC3181683
15) Bulbena A. et al 2017 - Psychiatric and psychological aspects in the Ehlers–Danlos syndromes. Psychiatric and psychological aspects in the Ehlers–Danlos syndromes. Am J Med Genet Part C Semin Med Genet 9999C:1–9.
Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder, by Claire Smith Chapter 2, page 65-68
HMSA Living well with a heritable disorder of connective tissue.
Managing Anxiety (PoTSUK)
Postural tachycardia syndrome www.nhs.uk/conditions/postural-tachycardia-syndrome/
Brain: Nick Youngson CC BY-SA 3.0 Alpha Stock Images. Attribution-ShareAlike 3.0 Unported (CC BY-SA 3.0)