ehlers danlos
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Daily Prompt – Walk or Run – 9.13.25

The author discusses the challenges of walking and running due to Ehlers Danlos Syndrome and L4 facet joint arthropathy, which cause joint pain and electrical shocks. Despite these difficulties and a spinal cord stimulator that often fails, they are gradually increasing their walking and stair climbing, focusing on recovery. Continue reading
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Zebra files 46) Treatment Follow Up

The author provides an update on their experience with hyaluronic acid knee injections. After the third round, they report significant pain relief and improved mobility, particularly in relation to their hips. While pain persists, the injections have eased daily activities and reduced overall discomfort. They express gratitude for support during the treatment process. Continue reading
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Zebra Files 44) Treatment Review-Hyaluronic Acid

The author discusses their experience with Hyaluronic Acid injections for knee pain relief due to the ineligibility for steroid and stem cell treatments. Despite the painful procedure, initial results show significant improvement in pain levels and knee functionality. The injections, required every 3-6 months, are covered by Medicaid, offering a hopeful solution. Continue reading
advice, chronic pain, communication, community, content warning, EDS, ehlers danlos, Ehlers Danlos Syndrome, family, Free, health, help, hyaluronic acid, injections, journal, knee, knee pain, life, me too, Medicine, no paywalls, outreach, pain, pain clinic, personal truth, perspective, resources, self help, self improvement, struggle, survivor, therapy, treatment, trigger warning, Zebra -
Zebra Files 38) Welcome Back

The author reflects on their holiday season, expressing hope and compassion despite challenges. They share their return from a break, discussing their health goals and experiences with physical therapy. A daily exercise regimen was developed, aiming to enhance mobility and strength, while navigating the unpredictability of living with Ehler’s Danlos syndrome. Continue reading
advice, communication, community, content warning, ehlers danlos, exercise, family, fitness, Free, health, healthcare, help, journal, life, me too, new years, no paywalls, outreach, personal truth, perspective, resources, self help, self improvement, strength-training, struggle, survivor, therapy, trigger warning, workout, Zebra -
Zebra Files 35) Pain Group

The author attended a Pain Support Group for the first time, prompted by feelings of mild suicidality, depression, and anxiety. While reflecting on their struggles, they shared emotions and experiences with others, finding some usefulness in the conversation. Although physically exhausting, they’re open to the potential benefits of the group. Continue reading
advice, chronic pain, communication, community, content warning, EDS, ehlers danlos, Ehlers Danlos Syndrome, family, Free, gaslighting, group therapy, health, help, journal, life, lifestyle, me too, medical gaslighting, Medicine, Mental Health, no paywalls, outreach, personal truth, perspective, resources, self help, self improvement, struggle, support, survivor, therapy, trigger warning, waste of time, Zebra -
Zebra Files 34) Hypermobility Workout

The post introduces a daily routine for managing hypermobility, particularly focusing on lower-body workouts available in two parts on YouTube. While not medical advice, the author hopes to raise awareness about the effort required for hypermobile individuals to function and encourages others to consider their own bodily needs. Continue reading
advice, communication, community, content warning, EDS, ehlers danlos, exercise, family, flexibility, Free, health, help, journal, life, lifestyle, loose, loose joints, me too, movement, no paywalls, outreach, personal truth, perspective, resources, self help, self improvement, stability, strength, struggle, survivor, therapy, trigger warning, workout, Zebra -
Zebra Files 26) Backwards is also Backwards

The author expresses the struggle of managing their health system challenges related to hypermobility, including denied medical referrals and insurance issues. Despite making progress, they are dealing with discouragement, caffeine withdrawal, and the pressure of adult responsibilities. They embrace their current difficulties while maintaining hope for future improvements. Continue reading
Ehlers Danlos Syndrome, Health and Healing, Protyus Quest for Care, Rare Diagnoses, Uncategorized, Wealthcareadvice, anthropology, autoethnography, communication, community, content warning, depression, ehlers danlos, family, fatigue, forward, Free, frustration, health, healthcare, help, hope, journal, life, lifestyle, me too, Medicine, Mental Health, motion, motivation, no paywalls, outreach, perseverence, personal truth, perspective, psychology, resources, self help, self improvement, sociology, spoon theory, spoons, struggle, struggle bus, survivor, therapy, toxic positivity, trigger warning, Wealthcare, Zebra -
Heartbreak and Hoofbeats

Heartbreak and Hoofbeats by Protyus A. Gendher Heartbreak and HoofbeatsProfessionals are trained to unsee me Even when they’re looking for things unseen They can’t or won’t or don’t look deep Even when I spread it all out before their eyes Tying pieces together like an episode of CSI Flimsy red string connecting the bits of the puzzle But they listen like Continue reading
advice, ally, anthropology, art, autoethnography, bi, closet, communication, community, content warning, dazzle, EDS, ehlers danlos, family, feminism, Free, gay, genderr, health, help, hypermobile, journal, lesbian, lgbt, lgbtq, life, me too, Mental Health, no paywalls, outreach, personal truth, perspective, Poetry, pride, psychology, resources, self help, self improvement, silence, sociology, struggle, survivor, therapy, trans, trigger warning, writing, Zebra -
Zebra Files 7) Did Not See This Coming

The visit to Dr. Handjob revealed mixed news regarding health concerns. While he initially ruled out a CSF leak, he suggested other possible diagnoses: Ehlers Danlos Syndrome, Cerebral Spinal Fluid Leak, and Multiple Sclerosis. Diagnostic tests will clarify the situation, leaving uncertainty about the outcomes but maintaining a sense of humor. Continue reading
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