The Unending Moment of Torment


Chronic pain at its peak was like an unrelenting hollowness, a continuous  deafening hum, an endless torture session where every moment felt like dying but death never came. Though these lines by Gulzar allude to a different context, I often found them ringing in my head when I was submerged and drowning in pain. 


दिल दर्द का टुकडा है पत्थर की डली सी है
एक अंधा कुंवां है या एक बंद गली सी है
एक छोटा सा लम्हा है जो ख़त्म नहीं होता
मैं लाख जलाता हूं ये भस्म नहीं होता
ये भस्म नहीं होता 

Exercising in hEDS

An excellent talk I highly recommend - I found it very helpful. Watch it full-screen, I am sure if you are new to this new to this condition and are watching it for the first time, you will want to take notes! 

Intelligent Exercise-How You Can Take Control with EDS
Webinar by Kathryn Lister,  October 28, 2015.





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As you live with this disease after getting a diagnosis, you know more and more about it and manage yourself better and better with time. It is different from intuitively figuring out a few things that make you better or worse, without diagnosis. In the latter, you often don't have the necessary evidence or the scientific causality as to the WHY something aggravates your condition. So again, I think a diagnosis, even a partial but correct diagnosis is important. 

I am continuously learning, and as I find some things worth sharing I try to write here or on FB. Some ideas change or get refined too with time as I find more information or understand things better.  

I am writing below some key points I have learned over time about exercising, they are relevant to me and may not be all useful for another person. Every body and each case of hEDS/HSD is different and this is just a list of things that I found useful. These points are not just about exercises, they extend to other topics too, because often everything is interrelated. 


Some old talks on EDS/hEDS

New changes are happening in the diagnostic criteria of EDS, hEDS and hypermobility spectrum disorders. I would like to share some old talks again that are extremely informative and must-watch for anyone wanting to know about these  conditions. 

Important Information

Feb 2017

Many changes are taking place that are going to lead to changes in the terminology associated with hypermobility related diseases. The future posts in this blog will reflect that, and where I can, I will edit/delete past posts to reflect that updates for the reader. However, I am waiting to fully understand these changes, and the updated diagnostic criteria on EDS that will be published in March 2017. I am also inclined to keep those pages (with an update line on top)  as a reminder of how confusing the things were - that is hoping things will be less confusing in the future.


Latest Updates: Feb 2017: A Framework for the Classification of Joint Hypermobility and Related Conditions

A Framework for the Classification of Joint Hypermobility and Related Conditions

Authors: MARCO CASTORI,* BRAD TINKLE, HOWARD LEVY, RODNEY GRAHAME,
FRANSISKA MALFAIT, AND ALAN HAKIM

Am J Med Genet Part C Semin Med Genet 9999C:1–10.

-A new classification system for Ehlers–Danlos syndrome (EDS) identifies more than 20 types of EDS which has led to patients who do not fulfil the criteria of "full-blown" EDS-HT but have many features of hEDS and Joint Hypermobility, to be left without a diagnosis.

- Highlights the need for a single set of criteria that can substitute the previous criteria for the overlapping conditions of JHS and EDS-HT

- Introduces a concept of a spectrum of pathogenetically related manifestations of joint hypermobility intersecting with syndromes that manifest as multiple conditions including joint hypermobility resulting from a single gene (pleiotropic syndromes)  - as distinctly apart from other syndromes with joint hypermobility

Proposed classification:




Latest Updates: Feb 2017: Hypermobile Ehlers–Danlos Syndrome:Clinical Description and Natural History

Top experts on HEDS come together in this review article to describe what is known and understood so far about the cause, presentation and management of HEDS.

Hypermobile Ehlers–Danlos Syndrome (a.k.a. Ehlers–Danlos Syndrome Type III and Ehlers–Danlos Syndrome Hypermobility Type): Clinical Description and Natural History

Authors: BRAD TINKLE, MARCO CASTORI, BRITTA BERGLUND, HELEN COHEN, RODNEY GRAHAME, HANADI KAZKAZ, AND HOWARD LEVY

Am J Med Genet Part C Semin Med Genet 9999C:1–22.