Ehlers-Danlos Syndrome Archives

Pyroluria is associated with a type of anxiety characterized by social anxiety, avoidance of crowds, a feeling of inner tension, and bouts of depression. If you have pyroluria you may experience varying degrees of anxiety or fear, often starting in childhood, and you usually manage to cover it up and push through. You may build your life around one person, become more of a loner over time, have difficulty handling stress or change, and have heightened anxiety symptoms when under more stress.

It’s not well-recognized in the medical profession and has long been considered a genetic condition. More recently some practitioners have been proposing that it may be triggered by environmental toxins and that it’s not only genetic. Either way, symptoms can start to resolve within a week when low levels of zinc and vitamin B6, together with some other nutrients are addressed. Stress management is key. This can be emotional stress and the stress of toxin exposure, infections like Lyme disease, mold toxicity and even low blood sugar and gluten issues.

We would typically not connect social anxiety/pyroluria with low oxytocin, vagus nerve function or connective tissue disorders but if you read on you’ll see there are some interesting connections.

Oxytocin, social anxiety and zinc

Research has found that oxytocin levels correlate strongly with levels of social anxiety. A paper published in the Journal of Psychiatric Research looked at how variations in the oxytocin receptor (OXTR) gene is associated with an increased risk of anxiety, stress and depression in individuals with a history of exposure to early life stress. Supporting low levels of oxytocin can ease the threats of social interactions.

What is interesting is that zinc, a key nutrient for pyroluria, is needed for binding oxytocin to its receptor. You can read more about all this here: Oxytocin, social anxiety, pyroluria and autism

Sociability improves vagus nerve function and thriving at home alone

Increased sociability helps improve vagus nerve function. It’s all good and well to recommend getting out and hanging out with more people but if you have pyroluria it’s really challenging. It’s also hard work, very stressful and the added stress makes your pyroluria symptoms worse so it becomes a vicious cycle.

You can read all about this here: Increased sociability improves vagus nerve function: the role of social anxiety, pyroluria and low zinc. There is an updated section on social isolation during coronavirus and how some people are thriving being home alone.

Pectus excavatum and Ehlers-Danlos Syndrome

Pectus excavatum is an indentation in the chest wall and is related to problems with connective tissue. When it comes to pyroluria and pectus excavatum, this is what we see in common: social anxiety and depression, low zinc and low vitamin B6, dental crowding and sometimes Ehlers-Danlos Syndrome (EDS). I write more about this here: Pectus excavatum and pyroluria: is there a connection?.

I’ve written an entire blog on Joint hypermobility / Ehlers-Danlos Syndrome and pyroluria. Anxiety, depression, attention deficit (and hyperactivity) disorder, autism spectrum disorders, and obsessive-compulsive personality disorders are all common with EDS. Many folks with EDS report better less social anxiety, improved mood and often improved physical symptoms/reduced pain on the pyroluria protocol of zinc, vitamin B6, evening primrose oil and a good copper-free multi.

Resources for you

My book The Antianxiety Food Solution (my Amazon affiliate link) has an entire chapter on pyroluria. Read it and become a savvy health-advocate for yourself. Share a copy with your doctor and point out the references.
Here is the pyroluria questionnaire. Here is a blog if you’re new to pyroluria and the associated conditions.
You can find the pyroluria products in my supplement store here.

Please do share if you have pyroluria or score high on the questionnaire and have seen improvements in your social anxiety and any physical symptoms.

brighton — Brighton Diagnostic criteria for the Joint Hypermobility Syndrome (source: http://ednf.org/assessing-joint-hypermobility)

I recently received a question about the possible connection between joint hypermobility / Ehlers-Danlos Syndrome and pyroluria. It’s 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. 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).

So here goes, I’ll share what I know so far. I’d love to gather more information and am looking for feedback too so please do share your experiences in the comments.

Joint hypermobility syndrome is described in this British Medical Journal paper: by expert Professor Rodney Grahame:

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.

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

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.

As reported in this Dec 2014 paper: United States Physical Therapists’ Knowledge About Joint Hypermobility Syndrome Compared with Fibromyalgia and Rheumatoid Arthritis despite the fact that joint hypermobility syndrome is one of the most common inherited connective tissue disorders, “many physical therapists in the United States are not familiar with the diagnostic criteria, prevalence or common clinical presentation.”

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

I was wondering if you’d 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’t even realize. It’s 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’t help but wonder whether all those medications are actually sometimes making things worse for some. Is it something you’ve come across much? Thanks.

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.

Here is one paper that was published October 2015: Psychiatric disorders in Ehlers-Danlos syndrome are frequent, diverse and strongly associated with pain

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.

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

Of the respondents 74.8% scored high on anxiety and 22.4% scored high on depression on the HADS [Hospital Anxiety and Depression Scale]

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 addresses generalized joint hypermobility and other disorders as well as anxiety:

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.

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.

Of course the big question is which comes first ?

the EDS and pain leading to feelings of anxiety and depression
or the genetic factors that cause nutritional deficiencies affecting both connective tissue and contributing to anxiety/depression

I’d guess it’s likely a combination of both and that it’s going to vary by individual.

The website of the Ehlers-Danlos Syndromes National Foundation is an excellent resource for learning about the condition but interestingly they make no mention of psychiatric symptoms.

Here is some feedback I’ve received up until now, on my blog, about a possible connection to pyroluria:

As you can see in this blog post: Pyroluria prevalence and associated conditions Thin Basement Membrane Disease (an inherited collagen/connective tissue disorder diagnosed via kidney biopsy) may be related to pyroluria. Someone contacted me during season 3 of the Anxiety Summit and said she has pyroluria and TBMD/Thin Basement Membrane Disease. She shared that the pyroluria protocol helped with her TBMD/Thin Basement Membrane Disease symptoms.
Maruschka posted on the same pyroluria blog sharing this (slightly edited version): pyrrole disorder/pyroluria is big part of hypermobility, Ehlers Danlos syndrome 3 and mixed connective tissue disorder. 80% of us suffer with pyrrole in collagen issues. Often undiagnosed. Professor Rodney Grahame says every 5 people in 30 people we meet have it. Now there is a talk that hypermobility is induced by environment, so epigenetics could reverse it.
Ali commented on this blog post: Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results saying she “immediately identified with almost all of the symptoms on your pyroluria questionairre, and ordered the test through Direct Health Care (the lab Dr. Walsh recommends). I ended up getting a mild positive urinary kryptopyrrole result .” She has also been “diagnosed with mast cell activation disorder (MCAD) and autoimmune disease (lupus, Hashimoto’s thyroiditis, celiac disease, Raynaud’s, interstitial cystitis), and Ehlers-Danlos Syndrome Type 3.” The pyroluria protocol does not seem to help her but she does have a great deal going on with her health.
Candy commented on the above post too, saying she has been diagnosed with Ehlers Danlos Syndrome and relates to many of the pyroluria symptoms.

I received this feedback from a colleague, Dr. Josh Friedman, an integrative psychotherapist who uses amino acids and other nutritional approaches in his practice. (You may remember him from the Anxiety Summit season 1 and then he interviewed me in season 3

One thing that I have noticed in the few folks in my practice with EDS (small sample of 4-5) is that that they tend toward low cholesterol (below 160 total) and do well with cholesterol supplementation. They do suffer from anxiety and/or depression. It seems pyroluria is a factor in some but not others (I have used the questionnaire from your book).

I look forward to learning more so I can help more people with social anxiety and hopefully some of the symptoms that may overlap with joint hypermobility and Ehlers-Danlos Syndrome.

Have you been diagnosed with joint hypermobility or Ehlers-Danlos Syndrome? And do you have pyroluria? If yes we’d love to hear if the pyroluria protocol of zinc, vitamin B6, evening primrose oil and a good copper-free multi has helped?

If you have been diagnosed with joint hypermobility or Ehlers-Danlos Syndrome and have social anxiety, we’d love to hear how you score on the Pyroluria Questionnaire

What approaches (nutritional and otherwise) have helped you? And please do share additional resources if you have them.