Archive for the ‘Managing Symptoms’ Category

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Surgery Prep: Meeting Your EDS Hospital Stay Needs

Posted on February 22, 2023

How to be prepared & stay safe when having a hospital stay with Ehlers-Danlos syndrome (EDS) This article will give an overview of ways you can prepare for a hospital stay when you have EDS, as well as tips on surgical prep and your own patient advocacy. People with Ehlers-Danlos syndrome (EDS) often need surgery […]

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Basic Emergency Care Planning for EDS Patients

Posted on February 21, 2023

Creating an emergency plan document is essential for patients with Ehlers-Danlos syndrome (EDS) and its many comorbidities, especially allergic or mast cell activation reactions. Take time to prepare in advance for an emergency before you get hit by a crisis by following these step-by-step instructions for your own safety and well-being. Create a written plan […]

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EDSed Episode 2: Dr. Lilian Holm on Physical Therapy & EDS

Posted on January 27, 2023

EDSed is our new series of full-length interviews with international EDS experts. These educational interview series with journalistic (news) quality is complementary to our webinar recordings and another free resource we provide for our community. All films are produced by journalist and We Are Visible filmmaker Karina Sturm and sponsored by Chronic Pain Partners. You can […]

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Small Fiber Neuropathy is a Common Feature in Hypermobile EDS, Research Finds

Posted on January 25, 2023

New research by a German group of scientists published in the European Journal of Neurology seeks to understand  if there is an underlying common cause among hypermobile EDS (hEDS), small fiber neuropathy (SFN), and postural orthostatic tachycardia syndrome (POTS). Their research sheds light on a possible common mechanism behind those three conditions.  SFN, POTS & […]

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Wrap Yourself in a Blanket of Love: How to Foster Self-Compassion

Posted on January 23, 2023

Self-compassion (and self-care) are sometimes misunderstood as selfish, self-cherishing, or self-indulgent, but this couldn’t be further from the truth, especially when you live with chronic illness or chronic pain such as Ehlers-Danlos syndrome (EDS). Self-compassion is the act of offering ourselves the same care and compassion we would give to others. It is simply the […]

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Surviving the Rollercoaster of EDS and Chronic Fatigue: Tips and Tricks for Managing the Boom-and-Bust Cycle

Posted on December 26, 2022

When you’re doing okay, it can feel like a high, a return to normalcy even. It is hard to figure out the level of functioning that is going to allow you to get things done without making your symptoms send you into another flare. It’s a tiny little fine line between doing too much and […]

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The Six Steps of Proper Pacing

Posted on December 26, 2022

Pacing techniques, such as the “spoon theory,” can be incredibly helpful for managing energy levels and preventing overexertion. This involves breaking activities into smaller chunks and taking breaks as needed to allow for rest and recovery. Sounds easy enough, right? UGH- NO!! You kinda need to plan to do this successfully to know which spoons […]

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The Road to Recovery Was Paved By Me and My Wheelchair: Q&A With Ryann Mason

Posted on December 22, 2022

Many people with chronic illnesses, like Ehlers-Danlos syndrome (EDS) or other disabling or deteriorating conditions, are often afraid of the possibility of “ending up in a wheelchair.” It is a real fear. But what if we changed our thinking? Wheelchairs provide freedom; they aren’t the end, but empowering and enabling for the user. And sometimes, […]

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