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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% – 20% 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* Editor’s note: I realize my site still refers to the outdated term “MCAD” in several places, including in my menu and links.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.)
**Additional note May 2026: The entire nosology and diagnostic criteria for all the forms of EDS and HSD will be updated on December 2nd, 2026 per Lara Bloom, President and CEO of The Ehlers-Danlos Society on Insta as of late April 2026. Yes, a lot will be changing on my website accordingly then. But until then, I have to go with the current “gospel”, thanks.
Last updated November 8, 2026
News and Events
November 2026: The Norris Lab hosted an update webinar in which they confirmed there is still no single answer to explain hEDS and HSD yet. Not just no single gene or gene cluster, but no single biomarker – yet. THey’re circling some hills, including the complement system in our immune systems, and inspecting the interaction of mast cells and fibroblasts more closely. While continuing to help foster many upcoming patient scientists (now in 39 states!) who will help push the ball forward. Along with providing mouse models free to any labs that want them to help push this research forward! But yeah, we’re all still as eager for answers as we were yesterday. I wrote about this on my Patreon Page. Meanwhile, the new nosology and diagnostic criteria are coming in less than a month on December 2nd. Watch this space. (I’m going to be insanely busy between that and my holiday market season. Thanks for your patience while I try to keep up.)
October 2026: The EDS film COMPLICATED is now available on Amazon Prime, as well as Apple TV for $9.99 USD. You can still download it directly anywhere in the world from Open Eye Pix for $14.99 USD here. And, please check out ElevateRare.org for resources around the issues of rare diseases and medical kidnapping.
Personally, I’m now focusing more on my photography business (I shoot bees, like Gaia’s “paparazzi”), so I apologize for slipping up here a bit. I may not be quite as on the ball as I was for the last 12 years. But I am waiting with bated breath for the new dx criteria update in December, 2026 along with all of you. Meanwhile, I share your grief at the recent passing of so many champions in the field. (John Ferman (November 2025), Dr. Grahame (April 2026), and Dr. Forest Tennant (August 2026.)
NB The Road to 2026 massive diagnostic criteria and nosology update will now be published on December 2nd, 2026 per Lara Bloom on Insta in April 2026 NOT December 1st as originally stated. This is so as not to step on World AIDS Day. Information about standards of care will come out in 2027.
May 2026 via Newsweek: An oncologist relates her experience being medically gaslit and dismissed about her hEDS.
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.)
Follow Chronic Pain Partners for more and to keep up with the latest EDS news and views. And find my very colorful bee-centric photography here now since 2025.
November is nerve pain awareness month, aka Nervember
And sadly, neuropathy of all kinds is far too common in our community too, sigh. From insufficient myelination, to pinched and impinged nerves in loose joints and other odd spaces (median arcuate ligament syndrome, anyone? Yup, we got that too, sigh), we really do get to have all the “fun”. By fun, I mean causes of pain that you can think of.
And too many of us also have co-occurring Complex Regional Pain Syndrome, formerly known as RSD, for unknown reasons also. (Dare I suspect our twitchy mast cells? Perhaps?) My late friend Lili was a pain warrior, managing to live defying all the odds and writing about it on her blog, which still helps many today to know they’re not crazy or alone.
I usually write a bit more but I’m semi-slammed these days. Anyway, you can read about our many other semi-common and common comorbidities here still. I need to migrate my blog to a new host, stat, but again, I need a clone, sigh. (Do be prepared for some visual changes in the next couple of months.)
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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. And/or other related awareness campaigns. 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:
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.
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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!!