Update 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and nosology just came out last week, many if not all of these book are all technically out dated or based on old, now outdated and obsoleted information.
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. For those unaware, an entire new diagnosis 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.)
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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). Though frankly, there aren’t more than a few available at this time yet, and until recently (2016) only The Revised Driscoll theory addressed the commonly comorbid Mast Cell Activation Disorders that are rampant in the community too. (I’m happy to report there’s a great new book out by Dr. Afrin on MCAD as of June 2016 I highly recommend, listed below now too.)
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 EDS / HMS /Fibromyalgia Books:
- Joint Hypermobility Handbook- A Guide… – Dr. Brad Tinkle, 2010 (2nd edition, blue cover)
- Hypermobility, Fibromyalgia and Chronic Pain, 1e – Hakim, Keer and Grahame, 2010 (more technical for MDs, but patients should try it too)
- A Multi-Disciplinary Approach to Managing Ehlers-Danlos (Type III) – Hypermobility Syndrome – Isobel Knight 2013
- A Guide to Living with Ehlers-Danlos Syndrome – Hypermobility Type – Bending without Breaking 2nd edition- Isobel Knight, Revised 2015
- Hypermobility Syndrome: Diagnosis and Management for Physiotherapists, 1e – Keer & Grahame, 2003
- Living Life to the Fullest with Ehlers-Danlos Syndrome: A Guide to Living A Better Quality of Life While Having EDS – Kevin Muldowney, PT NEW July 2015
- Journey to Health: A Holistic Approach to Ehlers-Danlos Syndrome – Mysti Reutlinger (patient) 2014
- Our Stories of Strength: Living With Ehlers-Danlos Syndrome – Reutlinger, Myles, Francomano et al, May 2015 (Includes a short story submitted by yours truly in the first edition out May 2015.)
- The Revised Driscoll Theory – Dr. Diana Driscoll, 2014 pdf (all proceeds benefit EDS research)
On coping with chronic pain and illness in general:
- Validate Your Pain! Exposing the Chronic Pain Cover-Up – Chino, Allan, PhD, and Davis, Carol MD 3rd edition from AuthorHouse publishers
- Explain Pain Butler, et al (NOI Group)
- How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers – Bernhard & Boorstein
- How to Live Well with Chronic Pain and Illness – Toni Bernhard 2015
- When Things Fall Apart: Heart-Advice for Difficult Times (Shambala Classics) – Pema Chodron
- Coping with Chronic Illness – H. Norman Wright, Lynn Ellis 2010
- Finding Heart Horse – A Memoire of Survival – Claire Hitchon
And finally, our first and best book on the state of MCAD today:
- Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity – Afrin, L. MD 2016 Amazon
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, as 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 choleseterol 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!