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Wednesday is a big day! The 2017 EDS Diagnostic Criteria will be Published!

Wednesday, March 15th, 2017 is the day that the highly anticipated newly updated EDS diagnostic criteria will be released. The Ehlers-Danlos Society is holding a webinar in the morning at 9:30 am; however, it’s reached capacity. I will be listening in along with everyone else on the webinar. I was also graciously asked to help moderate a live Q&A session in the EDS Life Hacks group on Facebook at 4 pm EST on Wednesday afternoon. Our regularly scheduled “Just 5 Minutes” class will be held at 2:30 pm EST and then I will be live via video stream in...

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Chronic Pain Management with TechCare Mini Massager Tens Unit – A Product Review

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “ I’ve written before about how much I loathe long car rides, and how much sitting too long can often flare chronic pain — specifically, leg pain for me. If you aren’t familiar with my “car yoga”-while-on-a-long-car-ride-because-of-chronic-pain story, you can go here to read it. I’ve also written about how sitting too long can cause your butt to...

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Our YouTube Playlists for Meditation, Relaxation, and Sleep Music

Meditative Mind – Meditation Music – one of our favorite channels on YouTube. They just released a new music video called ‘528Hz | Repairs DNA & Brings Positive Transformation | Solfeggio Sleep Music’. What we love is that the Meditative Mind Meditation Music channel of a variety of meditation and relaxation-type music, and each video play for 8+/- hours – all free!  YouTube has several other channels that offer similar playlists and music videos; however, the Strength/Flexibility/Health/EDS adds our favorites into a few different categories of playlists through our YouTube channel as well – see links below. Music – Sleep & Meditation (Long)  Nature...

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EDS Integrative Healing Brochure

‘EDS Integrative Healing Brochure’ (see link below) Graphic design by Kristi Posival – an incredible artist, graphic designer, friend and patient with Vascular Ehlers-Danlos syndrome. This slideshow requires JavaScript. ***Please note – this brochure is protected by copyright laws. If you would like to reprint or would like print copies, please send an email to info@edswellness.org*** Direct link to Integrative Healing Brochure – http://edswellness.org/index.php/2016/07/05/eds-integrative-healing-brochure/ Dr. Clair Francomano’s slide presentation from Wellapalooza 2016 that corresponds with the Integrative EDS Healing Brochure: ‘Approaches to Integrative Health for Persons with Ehlers-Danlos syndrome’ –...

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Complex Regional Pain Syndrome (CRPS) – A Possible Breakthrough Therapy

CRPS sometimes occurs comorbidly in those with EDS, and often “spreads” through the body. The pain can be debilitating and crippling, caused by intense burning, pins and needles and other nerve or”shock” like pain. CRPS is also known as RSD and is considered “Neuro-Inflammatory Disorder” – a condition that involves dysfunction of the nervous system and the immune system. It’s described as a condition that “occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured...

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The Latest – Updates and Information on Upcoming EDS Wellness Events and Programs

1. EDS Wellness has an App! The App is free and has information about events, services, and classes. To read about the EDS Wellness App, go to http://edswellness.org/index.php/eds-wellness-app/ To download the EDS Wellness App via iTunes, go to https://appsto.re/us/N7zbfb.i To download the EDS Wellness App via Google Play, go to https://play.google.com/store/apps/details?id=com.healcode.HC2207 The EDS Wellness App makes it easy to register for HelpLine Appointments, personal appointments, classes, workshops, and conferences. You can also register through EDS Wellness’ web page through the MindBody App itself (if you have it), through links provided on the EDS Wellness’ website or our other related...

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They Had Me at the “You Got This” Coffee Cup – My ChronicAlly Box Product Review

“I have been given this product as part of a product review through the Chronic Illness Bloggers Network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “ I have to say – I was surprised. Pleasantly surprised. There have been several different types of monthly subscription lifestyle “boxes” that have landed outside of my front door over the last few years, including Barkbox for dogs. However, none have focused on sending treats and other fun things, nor have any been a lifestyle box with a...

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How Posture Pump Works and Why You’ll Benefit From Using It

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “ Lately, I’ve lived, breathed and died thinking about posture, corrective exercises to help improve alignment, and ways to improve the overall biomechanical function of our machine — the body. Yes, our bodies are biomechanical machines. The reason I’ve been so entrenched in reading and learning about the importance of proper alignment, the natural biomechanical movements that our...

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Well, I Can Tell You How Fresh Assist Spray is NOT meant to be used ….. A Sponsored Product Review

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “ Husband – “You have to go help your daughter.”  Me – “Why?”  Husband (shaking his head) – “I don’t know. Just go help her. She needs you. Not me.” Me (feeling like he is perfectly capable of helping our daughter in the bathroom, even though he’s a he and she’s a she) – “Why?!” Husband (exasperated...

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Chronic Illness Bloggers Holiday GiveAway! And It’s BIG!

“This giveaway is sponsored by Chronic Illness Bloggers. Prizes have been donated by the following: Amy Rheume –  www.LivingTodayWell.com ; Alisha Nurse – https://theinvisiblef.com/; Aromafloria – http://www.aromafloria.com ; BackPainBlogUK – https://backpainbloguk.wordpress.com/  ; Bridgwater Crafts – http://www.bridgwatercrafts.com/  ; BeingFibroMom – http://www.beingfibromom.com ; Broken Teepee – http://brokenteepee.com/ ; Chronically Content – http://www.chronicallycontent.com ; Chronic Mom Life – http://www.chronicmomlife.com  ; ColitisNinja – http://www.colitisninja.com ; The Fay Farm – http://www.thefayfarm.com ; Fed Up with Fatigue – http://www.fedupwithfatigue.com ; FibroCane – http://www.fibrocane.com ; Fresh Assist Spray – http://www.freshassistspray.com ; Gupta Programme – http://www.guptaprogramme.com/ ; HFactorWater – http://hfactorwater.com/ ; Kirsten Schulz – http://www.kirstenschultz.org/ ; Living Well...

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The 2nd Annual EDS Ride for a Cause is on December 4th, 2016!

Registration is live for the EDS Ride for a Cause at Zengo Cycle Bethesda, MD! To sign up, see link below. You first buy your “EDS Wellness” charity ride series, and then book your bike seat in the class.  Want to donate directly to EDS Wellness instead?  All donations are tax deductible!  Go to – https://www.paypal.me/EDSWellness Registration link – http://www.zengocycle.com/reserve/index.cfm?action=Workshop.events#events24438  Link to Facebook event page –...

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EDS Mind-Body Wellness Seminars – Register Now!

Mind-Body Strategies for Hypermobility and Chronic Pain This 4 class/seminar series on Mind-Body Strategies for hypermobility and chronic pain, and is a collaboration between EDS Wellness and Dr. Deborah Norris with The Mindfulness Center in Bethesda, MD. The purpose of this series of 4 classes is based on two principles: 1. Part of the RYS 200 Yoga Instructor Training Program is a Seva requirement. Seva is a series of 4 yoga classes taught to a particular community – free of charge. It’s the community service requirement of the RYS 200 certification. Kendra Neilsen Myles of EDS Wellness picked the...

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Migraines, Ehlers-Danlos syndrome (EDS), Mast Cell Activation Syndrome (MCAS), Birth Control Pills, and Light Sensitivity 

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. I’ve suffered from chronic headaches my whole life — including migraines. My first experience with migraines was watching my mom try to cope in any way that she could with the horrid headaches she would often get. These headaches left her sick to her stomach and in bed, unless she had closed herself in the bathroom or...

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#EDSFitTip – Standing leg exercises for Hypermobility and Dysautonomia or POTS

#Just5Minutes – even in the OR! Calf raises are a great way to build strength in your feet, ankles, and calves. They also help keep blood from pooling in your legs, because when your muscles contract, they help pump your blood around your body (i.e. backup from your legs). One of the exercises that are thought to help with Dysautonomia/POTS symptoms, and even intermittent numbness in the feet, or on the part of a lower leg, are heel/calf raises. If you can’t stand to do them, even holding on to something, you can mimic the same exercise while sitting...

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The Patient’s Playbook – A Handbook to Navigating the US Healthcare System

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “   At first, I was a bit skeptical. I wondered if the information and examples provided in The Patient’s Playbook would resonate with my first-hand experience as a patient. I also wondered if the suggestions provided would fall in line to what I’ve witnessed professionally from working in both the pharmaceutical and medical fields for the last...

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EDS Wellness’ HelpLine is Live and Open for Appointments and Emails!

Download the EDS Wellness App today! Who is EDS Wellness? EDS Wellness is a 501(c)(3) nonprofit organization promoting health education, integrative healthcare, and wellness strategies for living well with hypermobility syndromes, such as Ehlers-Danlos syndrome (EDS), connective tissue diseases, and related comorbidities.   1. The EDS Wellness HelpLine is live! You can schedule 15-minute phone appointments, or send an email to helpline@edswellness.org Direct link to HelpLine appointment scheduling – http://edswellness.org/index.php/make-an-appointment/ See original post announcing the EDS Wellness HelpLine by going to  http://edswellness.org/index.php/2016/10/16/eds-wellness-helpline-live-download-eds-wellness-app-make-appointment-register-classes-seminars-conferences/ 2. EDS Wellness has an App! Now available through iTunes or Google Play! Link to EDS Wellness...

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What is POTS? — Understanding the Importance of Dysautonomia Awareness Month

POTS is a type of Dysautonomia or Autonomic Dysfunction. It’s estimated that 1/3 of patients with POTS have EDS. Both POTS and Dysautonomia are comorbid with Mast Cell Activation Syndrome (MCAS), Amyloidosis, Sarcoidosis, Diabetes (Type 1 & 2), Ehlers-Danlos syndrome, deconditioning and more. There seems to be an underlying link especially for those of us who have these several of these conditions in our families — which is why awareness and proper diagnosis is critical. October is Dysautonomia awareness month, and today, there’s a charity ride at Zengo Cycle in Bethesda benefiting Dysautonomia International – one of my favorite...

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Mast Cells, Ehlers-Danlos syndrome, and GI Disorders

  “We’ve changed our living environment…If it was cold you put on a sweater; you didn’t turn up the heat to 72º. The foods that we eat are no longer locally raised. So…this mast cell that’s used to a certain type of micro-environment is just completely confused and now completely over-active.” — Anne Maitland, MD, Ph.D., Allergy & Immunology (via MastCellAware.com) Ever wonder how and why ‎mast cell dysfunction seems to be so prevalent and overlapping with Ehlers-Danlos syndrome (EDS)? Mast Cells, Ehlers-Danlos syndrome, and GI Disorders appear to all go hand-in-hand as well. This image below should be...

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#EDSFitTip – the Hip Hinge

#EDSFitTip – the Hip Hinge

(Top left pic is proper form for hip hinge – others are examples of going too far) The “hip hinge” is the perfect natural movement exercise that can be done easily. The point is to feel and learn how to engage the muscles that attach to your pelvis/SI joint and knees and to help prevent […]

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Happy Birthday Never Bet Against Occam! We are Celebrating with 116 🌟🌟🌟🌟🌟 Reviews!

Happy Birthday Never Bet Against Occam! We are Celebrating with 116 🌟🌟🌟🌟🌟 Reviews!

What a way to celebrate the 1 year anniversary of the publishing of ‘Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity’ (2016, Sisters Media, LLC) that by sharing some of the recent reviews!  “Five Stars – So so so great for anybody dealing with Mast […]