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 intertwinedsystemic conditions I personally unofficially call the “Chronic Constellation” for lack of a better name.
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!
Unfortunately, most with any form of connective tissue disorder and / or Mast Cell Disease end up experiencing constipation – either primarily, or alternating with diarrhea, often diagnosed as IBS: Irritable Bowel Syndrome. There are many drivers of constipation in the EDS world, ranging from impinged neurology and tethered cord, to distended colons with slow motility, intussusception, food sensitivities (especially to gluten), MCAS and more.
We know no one likes to talk about it. But, the good news is there IS hope and help. And, you’re definitely not alone. To those mocking or shaming anyone with constipation, just be glad you’re not troubled by it. It can actually get quite serious, and my heart goes out to all the parents helping their children (and themselves) navigate this painful problem.
Editor’s note August 2021: Thank you for your patience as I slowly get around to adopting currently approved terminology on every page and post. (I have a lot.) Feel free to gently and kindly alert me to any oversights, bearing in mind this is a work in progress, thank you. (Shout out to autistic Twitter, smile.)
COVID-19 Emerged worldwide March 2020
(And continued in March 2021, sigh… are we there yet? No? Waaah. And new variants are also on the rise July 2021.)
I was late getting to this update back in March2020 thanks to both the outbreak of the newly recognized Coronavirus causing a pandemic of COVID-19 around the world. [Edited 8/11/20 to add past tense]
Please take care not to “whale watch”, that is, go leaping from one highly touted solution to another. “Oh look, a solution over here!” “Oh hey, there’s another one over there! Ooh!” leading to wildly careening about the boat.
We are all desperate for answers and “cures” but this is how snake-oil salesman make their livings. Pause, and gather data. And consult YOUR doctors and practitioners first. And listen to your own bodies. Always. There are no panaceas, sorry.
And, as of 8/11/20, per this article, it appears your home made cotton masks DO work folks – so keep wearing them if you can. It’s helping.
Yes, both Sia and Jameela Jamil have EDS, among others. ‘Nuff said.
Good news,Project EDS ECHO for doctors was rolled out in May 2019, and is officially underway. This should really help to “infect” more doctors with the latest information and insight into the forms of Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders, so patients don’t have to do all the heavy lifting anymore! It’s found here: http://ehlers-danlos.com/echo .
So far 150 doctors have signed on and earned CME’s for participating, thank you! The Ehlers-Danlos Society hopes to reach 1000 practitioners by 2020. (New “sessions” roll out periodically.) Help us reach that goal by sharing it with all your doctors! (Along with the EDS Toolkit for doctors freely available here too.)
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 $1/month on Patreon
Update March 2018 – The non-specialist LAY versions of those 18 crunchy papers above are HERE now too for the win! Big thanks to The Ehlers-Danlos Society for writing these up for the rest of us who don’t speak medicalese, or whose brains are just too tired to parse it. I think even some doctors will appreciate them too! And…
Update May 2018 –The Royal College of General Practitioners in London, England just successfully rolled out a brand new, brilliant “EDS Toolkit“ online for their GPs (and other allied healthcare professionals) to learn and study from! And I got to help draft it at the invitation of the primary author, Dr. Emma Reinhold, a GP with hEDS and MCAS herself I met on Twitter along with some other much esteemed company.
I’m very pleased to have played even a small part in “midwifing” this project along. Please share it far and wide with any and all doctors you can! It is freely available to anyone and everyone on the web, not just the NHS.
The International 2017 EDS Classification via The Ehlers-Danlos Society
You might wish to refer to this FAQ document previously shared by The Ehlers-Danlos Society for clarification on the new 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 severalHypermobility Spectrum Disordersfor 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.
I.e, they are subclinical for hEDS as I was for my first 44 years, and may now be technically again since I stiffened so much with age and arthritis. Kind of like how Pluto was re-classified to a dwarf planet 10 years ago right? It never changed a spot. We just changed our minds about it.
These forms of HSD also all supplant and replace the former diagnoses of Hypermobility Syndrome, Joint Hypermobility Syndrome, and Benign Joint Hypermobility Syndrome to my understanding. I like to think of the HSDs as the less visible bulk of patients “below the water line” as shown here:
The criteria for what has been called hypermobile EDS or hEDS were just tightened in 2017, so I will no longer refer to this form as common anymore accordingly. I actually no longer meet the new criteria since it requires a much higher Beighton 9 pt score than before. I now fit one of the forms of the new catch-all bin of the Hypermobility Spectrum Disorders better even though I was extremely bendy as a child, but…
NB you do NOT need to “lose” your diagnosis of hEDS until/unless someone requires you to, such as to meet the criteria for a research study. Further, you will still have a diagnosis that represents a hypermobile disorder, but just with a different name. It is hoped this will lead to speedier presumptive care and management rather than just leaving patients suffering because they did not meet the new higher bar of hEDS diagnosis.
I, Jan, unscientifically personally now feel very strongly that the newly recognizedHypermobility Spectrum Disorders as such are NOT rare at all, but also just rarely diagnosed – and not just because they are newly introduced. 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!
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 even 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!