Conversations With...Our Community | Series 1, Episode 2: Pain
Published 2021-05-14
Conversations With....Our Community Series features members of the EDS and HSD community, from all around the world, living with different subtypes of EDS and of HSD, about life, relationships, physical and mental health, diagnosis, coping, and hopes for the future.
Dominique lives in Scotland and has classical EDS (cEDS). In cEDS there is increased skin fragility leading to atrophic scarring, significant bruising, and poor wound healing.
Faith lives in Michigan, USA, and lives with vascular EDS (vEDS). VEDS is a life-threatening disorder that affects all tissues, arteries, and internal organs making them extremely fragile. Those living with vEDS are at risk of sudden arterial or organ rupture.
Dominique and Faith join President of The Ehlers-Danlos Society, Lara Bloom, who lives with hypermobile EDS (hEDS) for Conversations with our Community, discussing the impact of pain.
Pain is a very common complaint both in virtually all types of Ehlers-Danlos syndromes (EDS), and in the hypermobility spectrum disorders (HSD), and the intensity and severity of this pain can be as severe in EDS or in HSD.
Living with pain is very challenging. This is a difficult topic to discuss and to have, but it's important to know that you're not alone if you're experiencing pain.
Here are some resources to support you:
Mental Health Resources: www.ehlers-danlos.com/mental-health-resources/
Let's Chat Virtual Groups: www.ehlers-danlos.com/virtual-support/
EDS and HSD Helpline: www.ehlers-danlos.com/eds-helpline/
Inspire Message Board: www.inspire.com/groups/eds-and-hsd/
All Comments (11)
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I needed this video today. I need to know I’m not alone. It’s so hard just to get out of bed. I’m just at work crying from the overwhelming CONSTANT pain
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Thank you for this, it is comforting to know I'm not alone. I have just recently been diagnosed with hEDS, and I'm 52 years old. My mother was misdiagnosed, and she had all the manifestations of classic EDS, and was so very crippled by it in the last 10 years of her life.
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Thanks for sharing ♥️ from Gafsa Bux 🇿🇦 ♿ 🦓 🌈
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Thank you for this. So validating. Totally relate to the challenges including the emotional toll
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I have Vascular EDS, but I also am very hyper mobile. I have had 3 Spontaneous Pneumothorax in my left lung, 3 Strokes, 2 Aneurysms in my Brain and they found another Aortic Aneurysm by my Heart, Crohn’s Disease. Retnal Detachments Im allergic and Anaphylactic to most medicine. There is so much more. I will say the PAIN is the worst. I can’t walk, I starting to not be able to use my hands. I also have dislocations, balance problems. I haven’t been out of the house in 8 or more years. I have no support emotionally, worst of all Doctors laughing at me, making fun of me. I’m crying right along with you Faith. I wish I had doctors who cared. I’m sorry I have to stop, I’ve said too much anyway but my pain is so severe I can’t type anymore. I love you all. 🦋💕
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Thank you thank you thank you all for your the courage to speak up and share your stories. I do not feel alone.
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Thank you to the EDS Society and these amazing women for a fantastic video. I’ve just been diagnosed with hEDS at age 42 and have been unknowingly dealing with it for my entire life, and doing my best to educate myself. I am truly grateful for the validation, emotion, and knowledge shared here and already feel so lucky to be part of such a supportive community ♥️
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"The pain is not in my head" I feel like the most invalidating and discouraging thing a person with a chronic illness can be told is that their pain isn't really there. That they must somehow be manifesting it or it's psychosomatic. What a slap in the face. ❤
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TY ladies for sharing your stories. What tests were foundational to get your EDS diagnosis? What other diagnoses do you each have? 2 medical professionals in my care circles (my hip /pelvic floor therapist & an ER Trauma MD I'd seen when I'd fallen & broke my dominate arm in 3 places) had almost immediately asked me if I had a EDS diagnosis. I'm wondering if because I've done naturally supportive things (vs. synthetic) for multiple body systems for over a decade, IDK if enough quantitative EDS symptoms would be seen if I go see an EDS Dr. ( BTW, Faith, a dear longtime friend had taken Miralax and her Dr told her it caused her to need getting her small intestine removed. )
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Vi guardò dall’Italia, ma non capisco quasi nulla, transitino please??? Io sono EDS hypermobile .😘😘😘
