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Ehlers-Danlos Syndrome (EDS), Mast Cell Diseases (MCD) and Dysautonomia – Oh! That’s Why I‘m So Tired!!
And maybe that’s why you’re tired too! Join me on a journey of discovery about one of the most poorly recognized and unbelievably tangled health webs you can find involving not just one, but several intertwined systemic conditions I personally unofficially call the “Chronic Constellation” for lack of a better name.
Find Emergency Information and “Cliffs Notes” for Doctors Here <–
(Including a bonus dental freezing / numbing formula that’s tailored to EDS patients.)
Each syndrome alone is enough to take a person down at the knees, but combined as we so often find these, they can be downright show stopping, if not even lethal sometimes, sadly.
Oh, That’s Why I’m So Tired!!
Yet barely 10% or so who have this “trifecta” of a form of Hypermobility Spectrum Disorder or Ehlers-Danlos Syndrome, Mast Cell Disease *(any type) and Dysautonomia (usually POTS) plus many variations and additional issues including autism and weak immune systems get properly diagnosed, and it takes 10 years on average to get diagnosed with a form of Ehlers-Danlos Syndrome. (It took me over 25!)
Most are currently getting diagnosed with arthritis, Fibromyalgia or ME/CFS, depression and anxiety if anything at all. They may have all of these diagnoses, but the doctors stop short of seeing an underlying connective tissue disorder and hypermobility, so miss their EDS or HSD to be clear. This site is my attempt to help remedy that for everyone – both patients AND doctors!
Besides my standard pages in the menu above, you might like these Selected Posts and FAQs to start too. They feature my best, most popular posts that are not linked in the menu but are also helpful.
Hypermobility Spectrum Disorders and EDS aren’t rare, they’re rarely diagnosed!
* Editor’s note: I realize my site still refers to the outdated term “MCAD” in several places, including in my menu and links. I’m slowly working to update this, but it’s tricky- I’m back linked in several places, so a bunch of links will break once I change page names and URLs. Thanks for your patience! MCD is now the proper umbrella acronym for all forms of Mast Cell Diseases, whether they involve (over) activation or not. Including MCAS, which is just one form. (Other forms include mastocytosis, HaTS, and MMAS.)
Last updated January 1, 2026
News and Events
September 18, 2025 I wrote up an in-depth recount of all I learned from the “Road to 2026” sesssion at the Community Day of the 2025 Scientific Symposium in Toronto on my Patreon page. (I attended virtually on Whova/Zoom.) Upshot: they are doing due diligence with the 2017 diagnostic criteria, and heavily considering re-combining HSD and hEDS, but not certain yet. (Nothing was certain yet, they are still actively cussing and discussing it all.) They also recognize that hEDS is not a single SNP disease, like most rare forms of EDS, though we still don’t have any definitive answers, just candidate genes. (From both MUSC and HEDGE.) But it’s likely polygenic, and involves the extra-cellular matrix. Either join me on Patreon, or stay tuned for more.
And the Norris Lab at MUSC did finally get their initial Kallikrein gene study peer-reviewed and published FTW, yay! No major updates from before. It still only explains a small subset of folks with hEDS (two families and a small handful of others), but… it points to lots of other potential research and possible explanations for some co-occurring conditions. They have gone on to do more studies on proteomics and more. (See my patreon page linked just above.)
August 10, 2025 Pardon our dust: my current web host has unilaterally updended several plugins and widgets on my site, so I’m now in the process of preparing to migrate. Apologies for any bits and widgets that don’t work. (All of my forms are broken atm sorry.) Send questions directly to me at H2OhTWIST (at) gmail.com thanks.
February 23-24, 2025: The long-awaited EDS film COMPLICATED debuted at the 2025 Slamdance Film Festival in Los Angeles that weekend. We hope it got picked up, and will find good distribution soon. (Bendy toes all crossed. I know a lot of folks missed it besides me. I’ll apprise of any news I hear.)
February 21, 2025: EDS was featured on tonight’s episode of Embodied via NPR. Find the latest episode about Soph and Rene.
November 13, 2024: I’m suspending (pausing but not deleting) my private OhTWIST Facebook group indefinitely as I need to tend to personal matters now. (This leaves the group intact as it was so folks who are already in it can search the archives for prior answers. But no one can join and no activity can happen now.) But I’m not closing this blog or my Patreon or my PUBLIC Facebook page. Thanks for your understanding! (And, it is paused indefinitely now, December 1, 2024.)
BREAKING NEWS! September 11, 2024: Potential biomarker found for diagnosing hEDS and HSD per TEDS! Further confirmation needed but results are promising. This is not a genetic test, but a protein found in the blood of both hEDS and HSD patients, and so far only hEDS and HSD patients. Drill down and see.
Follow Chronic Pain Partners for more and to keep up with the latest EDS news and views.
January is Thyroid Awareness Month
One of the first co-occurring conditions I heard patients complain about way back in 2012 when I first became the Oregon Area EDS support group leader was hypothyroidism, and other thyroid issues. (Some had goiters, others had nodules or even a lobectomy.) I fell down that rabbit hole early on even though I hadn’t been diagnosed with an issue of my own. (Hold that thought.) So I hatched this post in January 2015 shortly after this website was born in 2014.
Fast forward 12 years, and one of my best friends who has lipo-lymphedema (Stage IV lipedema with severe co-occurring lymphedema), ended up with nodules on her thyroid three years ago. Based on various personal issues and needs, they opted to remove her whole thyroid, vs doing a lobectomy and hoping she would not need further surgery later. (They saved her parathyroid glands.) This turned out to be a good choice ultimately, but not without complications.
The standard of care for patients after a full thyroidectomy is to start them on a standard amount of T4 for their body size. This usually works for most patients. However, my friend is not “most patients”. (Nor probably are most of you reading.) It’s been a long complicated ride, but she uncovered the fact that some people can’t use T4 properly, and need to either supplement with a little or more T3, or even just use T3 entirely. This can be for a variety of reasons (like reverse T3 syndrome, or bad conversion due to genetics) my friend uncovered as she wrote about here (part 1) and here (part 2).
But very few doctors are aware of even half of the above. And it’s unfortunate, because the TSH level is merely the tip of the iceberg, and even a “normal” TSH level may not be telling the whole story as I explained in 2015 . The devil is really in the details, and again, most doctors (endocrinologists) still hew much too tightly to the current memes about TSH levels being diagnostic and will often miss underlying issues.
I personally have many now gross signs of hypothyroidism: my low average temperature of 97.3 (my normal, making 98.6 a fever for me no kidding), morning fatigue despite adequate sleep, thin hair and nails, dry skin and now increasing belly fat I can’t seem to shake now matter how little I eat. (I used to lose weight easily with diet and exercise.) But no doctor will recognize this because my TSH is “fine”. (In range.) Yay me. Sigh. (I’m picking my battles presently but plan to pick this one as soon as I can.)
Anyway, many thyroid issues can sneak up on you rather slowly. Please listen to your body, and prepare to be a poodle on your doctor’s pantleg if need be, if you suspect a thyroid condition of any kind. Both my friend and I think there is a growing epidemic of thyroid issues in the US, and most are going undetected yet. Make sure you’re not part of that growing group!
To your health – Jan 1/1/26.
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If you are wondering if you may have a form of EDS, HSD or a similar related connective tissue disorder, give my When to Suspect and When Else to Suspect pages a glance. (Grab a snack, it’s a deep dive.) Then go back to my Diagnosing EDS and HSD page and tuck in. (Doctors, you should check out this page too.) I dream of the day this is made easier by either genetic tests or biomarkers for all the types. I do think that day is coming in a couple of years. Yet more patience, Grasshopper. We’ll also see what the Road to 2026 brings from the leading charity who have dictated all things EDS since 2017.
I sometimes feel like I’m just collecting diagnoses on this site. But I truly couldn’t make this stuff up if I wasn’t witness to them all in massive online groups (60,000 in one, almost 100K in another now, no joke, and plenty on Twitter/X) and in real life every day. That’s why I called the whole kielbasa (collection) The Chronic Constellation here back in 2016, for lack of a better name. I “see” more patients than most doctors do, just socially, but with the advantage of more time and less pressure so we can share more than is often allowed in the doctor’s office. That’s why I’m sharing so much here – to give everyone a leg up!
I use the space above on my home page to highlight some of our more common comorbidities – aka co-occurring conditions every month. We have many, so you will see many through the year!
If anyone is in need of support around depression and suicidal thoughts, call 988 in the US. Or look up support for anywhere in the world here. We see you. We believe you. Your pain is real. And it is NOT all in your head.
Older News:
Ron Davis and family (Whitney and Janet Dafoe) have finally published some findings showing a connection between the immune system and MECFS in a hypermobile patient with some potential for possible treatment here. (April 2024.) Here is some interesting discussion of this paper by the MECFS community.
Good News! As of January 2022 followers will be pleased to learn that the EDS Toolkit for Doctors (aka the “GP Toolkit”) formerly hosted by the Royal College of General Practitioners in London since 2018 has indeed been saved and is now hosted by Ehlers-Danlos UK here:
https://gptoolkit.ehlers-danlos.org <—NB that’s “dot org” at the end, not “dot com”, which would bring up TEDS, an entirely different organization.
“Development of this toolkit in 2018 was led by Dr Emma Reinhold, with contributions from pharmacist Lisa Jamieson MSc, Prof. Lesley Kavi, Dr Hanadi Kazkaz, Dr Alan Hakim, Nikki Paiba, Dr Gemma Pearce, Dr Philip Bull and Jan Groh. The toolkit was hosted by the RCGP between May 2018 and November 2021.”
EDS In the News
EDS in Celebrities
The Emergence of COVID-19 (SARS-COV2) Worldwide since 2020
January 2023: I’ve hatched a COVID Resources page as well now, as the EDS/HSD community seems to be disproportionately impacted by Long COVID, with significant overlap with the ME/CFS community. (Who are finding increasing overlap with the world of connective tissue disorders, hypermobile or not.)
Indeed, evidence is mounting that we are disproportionately affected by this virus as I feared. (March 2024) In a surprise to almost no one… People with joint hypermobility are 30% more likely to suffer from long COVID, according to a new study by Brighton and Sussex Medical School (BSMS) and King’s College London and published in BMJ Public Health. In addition, this is likely related to higher levels of fatigue in this group.
And, as of 8/11/20, per this article, it appears your homemade cotton masks DO help some, so keep wearing them if you have nothing else. It’s helping.
Added 1/3/23: I now highly recommend a KN95 mask if possible though for better security against Omicron, XBB.1.5 et al. But, any mask will still help reduce your viral load, truly. So whatever you have will still help.
Your Support is Needed!
Want to help keep this site as up to date as possible, and keep me off the streets? (Not joking – my rent is over 3/4 of my SSD income now, eek.)
I can really use your support here for as little as $2/month on Patreon
Or you can send a one-time gift to me via the methods shown here, thanks!!
The International 2017 EDS Classification via The Ehlers-Danlos Society
For those unaware, this is the FIRST update since the Villefranche nosology was presented in 1997 (over 20 years before!), and this also supplants and replaces the Brighton (with an “r”, not “e”) Diagnostic Criteria for Joint Hypermobility Syndrome which some also used to diagnose hypermobile type EDS also. So there will at least be less confusion between Brighton and Beighton going forward, even if many of us no longer count as bendy!
UPDATE 4/10/18: There’s a new 14th type out now too. No doubt more will continue being uncovered with time. (See EDS Resources and News pages above.)
You might wish to refer to this FAQ document previously shared by The Ehlers-Danlos Society for clarification on the new 2017 criteria and terminology update as well. We will now be referring to EDS in the plural as the “Ehlers-Danlos syndromes” with an “s” on the end. (Or trying.)
As well as diagnosing an entirely new category of several Hypermobility Spectrum Disorders for those who look a lot like they have EDS, suffer much the same, but don’t meet the criteria for any more specific diagnoses involving hypermobility of varying degrees yet.
These forms of HSD also all supplant and replace the former diagnoses of Hypermobility Syndrome, Joint Hypermobility Syndrome, and Benign Joint Hypermobility Syndrome according to TEDS. I like to think of the HSDs as the less visible bulk of patients “below the water line” as shown here:
I, Jan, unscientifically personally now feel very strongly that the newly recognized Hypermobility Spectrum Disorders as such are NOT rare at all, but also just rarely diagnosed – and not just because they are newly introduced and poorly know about yet. But because they’ve always been dismissed as “normal” or early aging, or “just depression”, fibromyalgia, chronic fatigue or hypochondria under any name/classification scheme when they should not be!
We are the frequent flyers in all medical offices, after all!
It is my deepest wish that one day, this disease cluster will be as well known as multiple sclerosis, and much more quickly recognized. Everyone knows someone with a hypermobility spectrum disorder, if not also EDS. I will continue to post and tweet to that end, while I finish writing my book. Join me.
I can use your financial support at any level to help keep this blog online here thank you!