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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* Editor’s note: I realize my site still refers to the outdated term “MCAD” in several places, including in my menu and links.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 y our patience! MCD is now the proper umbrella term for all forms of Mast Cell Diseases, whether they involve (over) activation or not. Including MCAS, just one form.
Last updated December 30, 2024
News and Events
November 13, 2024: I’m suspending my private (closed) OhTWIST Facebook group indefinitely. But not this blog or my Patreon or my PUBLIC Facebook page. Thanks for your understanding! (And, it is paused indefinitely now, December 1, 2024.) HOWEVER: As of January 2025 – I *may* (still deciding) hatch a new, membership-based group in the new year. TBD.
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.
In other news (9/16/24), the NIH just featured Connective Tissue Disorders including Marfans and hEDS in their September 2024 News In Health (NIH) newsletter. Featuring Dr. Cortney Gensemer to boot!
June 11, 2024: The Norris Lab just released the preprint of their genetic study which found a Kallikrein gene to lie behind some cases of hEDS…
Follow Chronic Pain Partners for more and to keep up with the latest EDS news and views.
January is Thyroid Health Awareness Month
And thyroid imbalances and issues are pretty common in the EDS and HSD community I’ve found, unfortunately. (Not entirely sure why, but it was one of the first common co-occurring conditions I listed back in 2014.) All forms, including autoimmune Hashimoto’s and Graves Disease. But regular imbalances, and… no surprise: some newly recognized emerging conversion issues. I’ll explain a bit.
Most doctors and patients are quite familiar with testing our TSH or Thyroid Stimulating Hormone levels first to detect any gross issues. If the TSH level is high, then you are possibly hypothyroid (underproducing T4 and T3) so the pituitary spits out more stimulating hormone to goose (kick) your thyroid into gear. (Common signs include running low average temperature, low energy, weight gain, and low mood, and much more.)
If your TSH is quite low, you may have an over-active thyroid for some reason, and so the body does not send it much stimulating hormone TSH. (Common signs include running higher temps, being really energetic, weight loss, heart palpitations, mood disorders and more.)
But wait, there’s more. As I wrote way back in 2014: you can have problems beyond TSH and regular imbalances. Free T3 (FT3) is the hormone your body actually recognizes and responds to, which regulates all your systems ultimately. (You will die with insufficient T3 over time.) Some people don’t convert their T4 to T3 very well, and others may not convert either one to Free T4 (FT4) and Free T3 (FT3), the forms the body needs to work with. And others produce too much Reverse T3 (RT3) even in the absence of stress or illness lending to a hypothyroid state even when TSH is “normal”. (RT3 acts like a thyroid hormone blocker on your cells, and rises when you’re sick so as to lower your energy so you rest and heal then. But it should reduce again when well so you have full energy and function again. Sort of like a brake on your system. But not all do.)
But almost no doctors are aware of these issues, nor are willing to look into them as one good friend of mine has unfortunately learned. We’re fighting for her life right now as I type, with many signs of severe hypothyroidism from what we suspect is a conversion issue. But they will only give her T4 which may not be helping her much if at all.
And insurance companies are cutting back on the tests to save costs as you probably know all too well. Don’t even get me started. So this makes doctors even less willing to drill down further and see what’s really going on. And for some odd reason, they are all scared to death to prescribe more T3 even in the face of obvious evidence someone is low.
Dr. Westin Childs (no affiliation) is leading the way bringing this to light. And a smart patient, Paul Robinson (no affiliation) also spent ten years fighting to bring this to light for himself as well, almost dying in the process. I’m dearly hoping a doctor will believe my poorly friend who is now fighting for her life as I type with similar issues and more. It shouldn’t take dying or even coming close for medicine to change!
Point being, if you have continuing hyper or hypothyroid symptoms despite a “normal” TSH range, try to pursue these other downstream conversion and other issues (including Reverse T3 syndrome). You may have to be a poodle on your doctor’s pantleg, but you may just save your life.
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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) 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 all you doctors 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.
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I can really use your support here for as little as $2/month on Patreon
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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!