{"id":4040,"date":"2015-12-04T14:00:05","date_gmt":"2015-12-04T22:00:05","guid":{"rendered":"https:\/\/www.everywomanover29.com\/blog\/?p=4040"},"modified":"2019-07-12T08:50:04","modified_gmt":"2019-07-12T15:50:04","slug":"joint-hypermobility-ehlers-danlos-syndrome-pyroluria","status":"publish","type":"post","link":"https:\/\/www.everywomanover29.com\/blog\/joint-hypermobility-ehlers-danlos-syndrome-pyroluria\/","title":{"rendered":"Joint hypermobility \/ Ehlers-Danlos Syndrome and pyroluria?"},"content":{"rendered":"
\"brighton\"
Brighton Diagnostic criteria for the Joint Hypermobility Syndrome (source: http:\/\/ednf.org\/assessing-joint-hypermobility)<\/figcaption><\/figure>\n

I recently received a question about the possible connection between joint hypermobility \/ Ehlers-Danlos Syndrome and pyroluria. It\u2019s been on my long list of topics to look into, learn more about and write about because I also feel there may be a connection to pyroluria, a social anxiety condition<\/a>. People with pyroluria can often relate to these symptoms: joints popping, cracking, or aching; pain or discomfort between the shoulder blades; or cartilage problems (likely due to low zinc levels).<\/p>\n

So here goes, I\u2019ll share what I know so far. I\u2019d love to gather more information and am looking for feedback too so please do share your experiences in the comments.<\/p>\n

Joint hypermobility syndrome is described in this British Medical Journal paper<\/a>: by expert Professor Rodney Grahame:<\/p>\n

Joint hypermobility syndrome (JHS), previously known as benign joint hypermobility syndrome (BJHS), is a heritable disorder of connective tissue that comprises symptomatic hypermobility predisposing to arthralgia, soft tissue injury, and joint instability. It is indistinguishable from the hypermobility type of Ehlers-Danlos syndrome.<\/p>\n

Complications may include autonomic dysfunction, proprioceptive impairment, premature osteoarthritis, intestinal dysmotility, and laxity in other tissues causing hernias or uterine or rectal prolapse.<\/p>\n

Symptoms are often minimal or mild, but 168 out of 700 patients with joint hypermobility syndrome (24%) attending the UCH Hypermobility Clinic already had an established chronic pain syndrome at the time of their first outpatient attendance. These patients were experiencing serious pain, disability, and impairment of the quality of life, some patients becoming chairbound or even bedbound.<\/p><\/blockquote>\n

As reported in this Dec 2014 paper: United States Physical Therapists’ Knowledge About Joint Hypermobility Syndrome Compared with Fibromyalgia and Rheumatoid Arthritis<\/a>\u00a0despite the fact that joint hypermobility syndrome is one of the most common inherited connective tissue disorders, \u201cmany physical therapists in the United States are not familiar with the diagnostic criteria, prevalence or common clinical presentation.\u201d<\/p>\n

This is the actual request that I received from Catriona, one of my blog readers\/facbeook followers:<\/p>\n

I was wondering if you\u2019d ever be interested on doing a post on Ehlers-Danlos Syndrome\/Joint Hypermobility. I wonder whether many of your clients suffer from it and possibly don\u2019t even realize. It\u2019s a group of connective tissue disorders which had mostly been thought to affect only the joints, skin, skeleton and blood vessels, but it turns out that connective tissue is a necessary part of all organs and that there are much higher than expected incidences of anxiety, depression, chronic pain which is often labelled as fibromyalgia, gastrointestinal problems and more. I suspect a lot of people with EDS [Ehlers-Danlos Syndrome] also have pyroluria, there are high numbers of people having to deal with POTS [Postural orthostatic tachycardia syndrome] and MCAS[Mast Cell Activation Syndrome] and very high levels of disability with it. I think that having connective tissue in the gut that might be more prone to tearing and leaking might make dietary changes even more important, but might also be one of the things that results in less good responses to nutrient therapies. As well as that there are so many people with EDS on cocktails of medications for pain, sleep, anxiety, depression, reflux, IBS, menstrual disorders etc. and I can\u2019t help but wonder whether all those medications are actually sometimes making things worse for some. Is it something you\u2019ve come across much? Thanks.<\/p><\/blockquote>\n

There are a number of papers published in 2014 and 2015 linking EDS \/ Ehlers-Danlos Syndrome with psychiatric disorders. None mention social anxiety but anxiety is very common, as is depression.<\/p>\n

Here is one paper that was published October 2015: Psychiatric disorders in Ehlers-Danlos syndrome are frequent, diverse and strongly associated with pain<\/a><\/p>\n

Psychiatric disorders were found in 42.5 % of the EDS cohort, with 22.7 % of patients affected with 2 or more psychiatric diagnoses. Anxiety and depression were most commonly reported, with frequencies of 23.6 and 25.5 %, respectively.<\/p><\/blockquote>\n

This paper was published in April 2015, looking postal survey results from 250 members (over 18 years) of the Swedish National EDS Association: Self-reported quality of life, anxiety and depression in individuals with Ehlers-Danlos syndrome (EDS): a questionnaire study<\/a><\/p>\n

Of the respondents 74.8% scored high on anxiety and 22.4% scored high on depression on the HADS [Hospital Anxiety and Depression Scale]<\/blockquote>\n

This March 2015 paper: Psychopathological manifestations of joint hypermobility and joint hypermobility syndrome\/ Ehlers-Danlos syndrome, hypermobility type: The link between connective tissue and psychological distress revised<\/a>\u00a0addresses generalized joint hypermobility and other disorders as well as anxiety:<\/p>\n

Psychological distress is a known feature of generalized joint hypermobility (gJHM), as well as of its most common syndromic presentation, namely Ehlers-Danlos syndrome, hypermobility type (a.k.a. joint hypermobility syndrome – JHS\/EDS-HT), and significantly contributes to the quality of life of affected individuals.<\/p>\n

Interestingly, in addition to the confirmation of a tight link between anxiety and gJHM [generalized joint hypermobility], preliminary connections with depression, attention deficit (and hyperactivity) disorder, autism spectrum disorders, and obsessive-compulsive personality disorder were also found.<\/p><\/blockquote>\n

Of course the big question is which comes first ?<\/p>\n