Recommended Books

When to Suspect EDSUpdate March 20, 2017: obviously since the BRAND NEW EDS diagnostic criteria and nosology just came out last week, many if not all of these book are all technically out dated or based on older, now outdated and obsoleted information since the new nosology came out March 15, 2017.

Please note, the former diagnoses of HMS, JHS and BJHS are all now obsoleted and rolled up into either the forms of EDS including hEDS, or the new forms of the new category called Hypermobility Spectrum Disorders for those who don’t quite meet the newly tightened hEDS criteria.

That said, they STILL can be beneficial, as long as you take them with a large grain of salt, and realize that even people who do not meet the newly tightened hEDS criteria may still benefit from what they contain. (I.e, we’ve just changed the names and labels for what we’re still talking about.)

For those unaware, an entire new diagnostic category has been developed for all those with signs of hypermobility but who are not clinical enough to meet the newly tightened hEDS criteria, and don’t show signs of any of the rarer types or other CTDs.

Obviously, I’m scrambling to get my book out to help remedy this, but I am stuck madly updating this website and fielding q’s online while continuing to take care of myself in the meantime. (I can only do so much so fast.) I’m sure more will be forthcoming. Hopefully by one or more doctors if we’re lucky. (I haven’t heard of any in the works, but I’m praying one of these good authors is inspired and able to do so.)

Update June 11, 2017

I was just made aware of the first new (to my knowledge) book to come out that incorporates the new nosology and Hypermobility Spectrum Disorders here:

Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders 2017 Claire Smith, UK

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Below are a few books I recommend reading about Ehlers-Danlos Syndrome or its related conditions (Hypermobility Syndrome – HMS, Joint Hypermobility Syndrome – JHS and Fibromyalgia – FMS). And finally (2018) another book has just appeared by a patient discussing the highly comorbid Mast Cell Activation Disorders, which I’ve added to the list below along with the great first major work put out by Dr. Afrin in 2016.

All variations on the theme end up experiencing plenty of chronic pain of every kind, so I’ve included a couple books on that matter to help cope also.

I highly recommend Dr. Brad Tinkle’s book for starters for both patients and doctors, as it does the best job of quickly addressing the myriad ways EDS/HMS manifests categorized by body system. (Make sure to get the 2nd edition with the blue cover with a sunflower on it, not the 1st edition).

Followed by the next best book for doctors, the purple tome on Hypermobility, Fibromyalgia and Chronic Pain 1e by Hakim, Keer and Grahame 2010. While a bit dryer and more technical, it’s very thorough and medically focused. For patients I recommend The Revised Driscoll Theory, and of course, the Stories of Strength anthology I’m a part of now, smile.

Recommended Books on EDS / HMS /Fibromyalgia 

Recommended Books

Coping With Chronic Pain and Illness in General

And finally, our first and best book on the state of MCAD today:

I’m breaking my own rule of not normally listing a link to a particular book seller on this last one only because I am so eager for people to buy and read it, both doctors AND patients. I feel it is very validating for BOTH. For, while patients will see “their people” described eloquently (and with a wry wit), doctors will also feel validated for missing one of the most chameleon-like diseases ever recognized.

It mimics, masks and/or drives so many other conditions (including anemia, and high cholesterol among many others including opposing issues), it’s no wonder it’s gone unrecognized all these years. It’s a chameleon with spots!

Don’t ignore the great glossary in the back either – not nearly as dry as you might think, I’ve learned as much or more from that as I did from the case-study filled narrative. (Plus expanded my vocabulary of course.) HIGHLY RECOMMENDED!

And new in 2018: Mast Cells United – A Holistic Approach to Mast Cell Activation Syndrome 2018 Walker, Amber

Other related resources for our many comorbidities: