Connect
The background
To be born different is special yet sometimes challenging. Getting a correct diagnosis and a clear road to recovery is the largest hurdle for patients with EDS/HSD. Many patients have bitter experiences of misdiagnoses or delayed diagnosis, which prolongs suffering. A consequence then is a sharp mental health toll. Recent news has highlighted prevalence studies showing psychiatric conditions as high as 43% in classical and hypermobile EDS. The anxiety rate may be as high as 25% and the depression rate as high as 26%. Unpleasant emotions are heightened by the chronic turmoil of multisystem manifestations of pain, exhaustion, unstable joints, recurring dislocations, social withdrawal, brain fog, and anxiety. It’s what psychologists call "Somatosensory awareness". Just like patients with other chronic illnesses, those with EDS/HSD experience significant rates of anxiety and depression.
Finding the cause
To understand the increased association of EDS/HSD with psychosocial pathologies affecting mental health, it is important to understand two components. First, the pain due to physical symptoms, joint instability, and central sensitization is one of the primary causes of decreased functionality and social withdrawal. Therefore, patients with EDS/HSD frequently experience sadness and anxiety brought on by chronic pain, added to stress from other people's ignorance of their physical limitations and impairment. Second, both POTS and EDS/HSD have neuropsychiatric associations that can be disabling and includes a full range of anxiety disorders, such as panic disorder and agoraphobia, as well as depression, cognitive issues, eating disorders, autism spectrum disorder (ASD), and attention-deficit/hyperactivity disorder (ADHD).
Treating the cause
Before receiving appropriate care, patients often describe the condition affecting them from head to toe. The largest challenge then in providing care is determining all the underlying issues that are related. Mental health care is equally important as physical health in EDS/HSD. Fortunately, the EDS society came up with the Mental Healthcare Tool, which can promote overall wellbeing and help to adapt living with EDS/HSD. The biopsychosocial paradigm is utilized by EDS/HSD psychology service providers to assist patients compassionately and successfully in overcoming the enormous physical, emotional, and social obstacles associated with having EDS/HSD. Patient input for psychological services ensures patient-centered care. At the Mayo Clinic EDS Clinic, patients are treated holistically with the aid of integrative medicine and mind-body counsellors to address all aspects from head to toe. Through a variety of treatment programs, patients can connect with each other and providers to receive appropriate guidance and support for their treatment. It truly is a team effort. Further, EDS support groups through social media can help patients to build a network of support. To approach mental health, we need to respect everyone’s role, and fill the role wisely. Providers need to address associated mental health concerns and provide comprehensive patient care. Patients will do well to communicate their symptoms and provide feedback on treatment. Friends and family also need to support the mental and emotional wellbeing of those with EDS/HSD. Have you experienced an impact to mental health from EDS/HSD? We would love to hear what helped in the comment section below.
Author: Mahima Master, MBBS
Like
Helpful
Hug
Connect
Thank you for highlighting this topic. I've definitely found that the stress of managing chronic pain and illness has had an impact on mental health. The pain and physical limitations, and how those affect how I interact with the world (i.e. I am currently having an extremely difficult time securing accommodations at work and securing intermittent leave to apply toward my numerous treatment and follow-up appointments) plays a big role.
But for me, what's been most negatively impactful on my mental health has been the strain of navigating the medical system, not only trying to get answers, a diagnosis, and treatment recommendations--but actual access to care. It's exhausting to seek provider after provider, physical therapist after physical therapist and counselor after counselor and be told EDS/HSDs, central sensitivity, POTS, name whichever chronic condition that affects this population (MCAS, fibromyalgia, severe abdominal distention, etc.) falls outside their scope of practice. I live in a large metro area, and have been unable to find a behavioral health therapist who is available, a fit, and feels "comfortable" supporting me with these conditions. I've also been unable to find a PT or OT who treats the above (while it's true "anyone" should be able to intuit how to help me with these conditions, I'm finding either the professions are now so siloed or there's just a lack of interest or motivation).
To hear some version of, "I'm really sorry; I can't help you. You would be better served by another provider '[who may or may not exist, has a 2-year wait list, or isn't available' is the often unspoken part'] so often can really cause one to internalize the idea that we are different, someone "wrong" and don't fit the mold, or aren't worthy of effort or care. I think that's an important facet of mental health with these conditions as well, not only the isolation and withdrawal and grief that can occur.
I have more answers now--ideas about treatment options, but not a clear path for implementing them. And I've been disappointed I haven't been able to experience the support of the "integrative medicine and mind-body counsellors" who work with the EDS Clinic. I hope one day that's something I can access, and until then I'm doing my best.
-
Like -
Helpful -
Hug
7 ReactionsThis is really well done! I have all that you mentioned and over 40 surgeries at 73! I stabilized every joint Many multiple times . One thing too for some like me is the real possibility of Mast Cell Activation thwarting your path to wellness in the gut! That’s been a real and rather horrible result of my COVID shots! Immunologists are now taking a stab at it and I have at least 7 flags already on my blood and urine! I am so hoping for a magic bullet as I can only stay active on strict carnivore diet. And I’m just thankful for that at this point!
-
Like -
Helpful -
Hug
2 ReactionsI have dx with anxiety, mood disorder, depression and ADHD.
Being in pain, the brain fog, etc just exacerbates all of the above.
I echo everything EMO has wrote above. My brain fog is rather awful right now.
-
Like -
Helpful -
Hug
1 ReactionThis is a great article. I think the mental health impact of this painful, debilitating disease is often overlooked. I've had Autonomic Dysfunction/Dysautonomia for years, and my pain levels along with the loss of my independence can be extremely debilitating. I'll be checking out the toolkit next!
I would also like to post my experience, because it has to do with the impact of nutrition on our mental health status.
Many people are deficient in choline, which is necessary to produce acetylcholine. Acetylcholine is a neurotransmitter. A deficiency impacts our nerve cells, including those controlled by our autonomic nervous system. This impacts all the things we don't think about...heart rate, digestion, body temperature. The ChAT gene produces choline acetyltransferase which is used to make Acetylcholine, so variants on that gene, or the PEMT gene responsible for processing choline, can cause a deficiency even if dietary intake appears to be adequate.
I also have genes that are impacting my Methylation Cycle...which includes the PEMT gene, plus MTHFR, MTRR, CHDH, BHMT and others. I found improving my nutritional status, using choline, methylfolate, methylcobalamin (B12), B6, magnesium, betaine and supporting my GI function by avoiding wheat/glutens, using digestive enzymes and taking high quality prebiotics and probiotics is having a positive impact on my pain, fatigue, the gastroparesis and low amino acid levels. (Who knew it takes folate and B12 to process amino acids!?!)
In addition, if a person is deficient in methylated folate, methylcobalamin (B12), or B6, homocysteine can accumulate in the blood. High homocysteine levels can impact cognitive function, neurodegenerative disorders and cause cardiovascular issues.
A Methylation profile I ran a month ago showed, that my homocysteine levels are still somewhat high. I'm hoping my cardiologist will recheck it for me at my next appointment. And I will be rechecking my amino acid levels again in a few weeks.
Follow up testing will be key until we find the correct amount of each supplement.
And my final comment is that Tulane University wrote a paper in April 2023 linking MTHFR variants, and the inability to convert folate to methylfolate to EDS. So some of this is still fairly new and more research is needed, but its progress and is hopefully generating more interest in finding treatments for this disease process!
**Please keep in mind that I do not recommend supplementing without doing your research and discussing your particular symptoms and nutritional status with your healthcare provider and/or nutritionist. For example, I read that too much methylfolate can cause some of the same symptoms as too little! So do your due diligence!**
If you're interested in learning more about the disease process and recommended management plans, I found a great resource for pretty much everything EDS is the book "Disjointed", published in 2020. Its a compilation of chapters contributed by some of the top EDS specialists in the country.
-
Like -
Helpful -
Hug
3 Reactions@mizebra, your so right that chronic diseases can, and often do, have serious impact on mental health.
Your also wise to point out when research is new or preliminary, such as the Tulane study, but research is happening. Yay! Here's a link to an article describing the study that also includes the study.
- Could a vitamin deficiency cause ‘double-jointedness’ and troubling connective-tissue disorder? https://news.tulane.edu/pr/could-vitamin-deficiency-cause-%E2%80%98double-jointedness%E2%80%99-and-troubling-connective-tissue-disorder
As you said supplements and nutritional status should be discussed with one's medical team.
For anyone who hasn't seen them already, you may be interested in these related blog posts by the Mayo EDS team:
- Supplements, Part 1: elasticity, injury, and pain reduction in EDS and HSD https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/supplements-part-1-elasticity-injury-and-pain-reduction-in-eds-and-hsd/
- Supplements Part 2: Collagen supplements and EDS/HSD https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/supplements-part-2-collagen-supplements-and-edshsd/
- Nutrition Tips in Gastroparesis https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/nutrition-tips-in-gastroparesis/
- Gastrointestinal Symptoms and Diets in EDS https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/gastrointestinal-symptoms-and-diets-in-eds/
-
Like -
Helpful -
Hug
2 Reactions