Those who have any form of Ehlers-Danlos Syndrome (EDS) like me (with hEDS) or the new diagnosis of Hypermobility Spectrum Disorder (since March 2017) can tell you there is definitely some fatigue involved from the strain on weak muscles, torn tendons and ligaments and all forms of our connective tissue. Those of us with the very
This post is brought to you by Peanut, my faithful therapy rattie and napping partner as I find myself going splat a lot more with my 2nd worst flare since my initial 2012 onset “storm” or “cascade” that first got me diagnosed with Hypermobile type Ehlers-Danlos Syndrome. I’m strongly suspecting a hormonal cause to this
January is Thyroid Awareness month, and I bring this to your attention at this time because a majority of the patietns I’ve met in person with any form of the Ehlers-Danlos Syndromes (or Hypermobility Spectrum Disorders since 2017) seems to also show signs of SOME form of thyroid imbalance. But quite frequently hypothyroidism or under-active
The WordPress.com stats helper monkeys prepared a 2014 annual report for my blog. Although I’m no where near as popular and well read (nor prolific) as some of my fellow spoonie bloggers yet (I’m struggling to stay fed and watered still), I’m quite happy with my initial foray this past year, reaching 47 countries and 7100
So happy to share that the New Driscoll Theory is now available in time for Christmas! Get your copy now! Written by fellow patient and therapeutic optometrist Dr. Diana Driscoll, it addresses the latest research and understanding on what drives so many of our issues and conditions with Ehlers-Danlos Syndrome and POTS and MCAD. Yay
I’m borrowing liberally from Charles Dickens’ A Christmas Carol for this post. This December 2014 I’m thrilled to find myself ever so slowly climbing back out of the hole I fell in when a metaphorical “bomb” went off in my life three years ago and I succumbed to my Ehlers-Danlos Syndrome onset cascade in early 2012 leaving me wheelchair bound
So you’ve finally gotten a diagnosis, and some validation (hopefully!) Now what do you do about it? Sadly, there’s no single remedy or path to recovery (at whatever level) for everyone sorry, due to the systemic nature and extremely wide variation in expression of the condition in each of us, and the myriad complicating comorbidities I keep mentioning. (For
As you’ve probably guessed by now, we can celebrate one or the other of our comorbities just about every month, including our main awareness month of May – which is also for Fibromyalgia awareness. (September was both Chronic Pain and Chiari Malformation Awareness Month – both very common in the EDS community). Well October is for one
Sadly all too true, too many women are dismissed as either “just depressed” or histrionic despite being in very real pain. (Much of it invisible on scans in those with Ehlers-Danlos). See the shocking results of a National Pain Report survey. Surely we can do better!
Update May 3, 2017: The old references to the BRIGHTON (with an “r”) Diagnostic Criteria in here were OBSOLETED by the brand new 2017 Ehlers-Danlos Syndromes nosology and diagnostic criteria, the first in 20 years! These were introduced March 15, 2017 by the international Ehlers-Danlos Society after several years of hard work pulling experts from
