I'm so sorry!

I'm willing to bet we EDSers helped generate that black box warning too. Sigh. 🥺

There's a black box warning on Cipro, but doctors who were educated before the late 90s often don't know about it.

I'm so sorry you had to experience that! Several of my best friends have also. I now list it as an allergy.

New in 2020 via Afrin, Weinstock and Molderings: Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome - implications for treatment if true
buff.ly/39RyJK1
#MCAS #MCAD #EDS #MedTwitter #COVID19 #MECFS #NEISvoid #LongCOVID

Avoid Cipro! or Antibiotics From Fluoroquinolone Family if You Have EDS Avoid Cipro!- I'm dropping in a quick cautionary post to urge ALL who are hypermobile (whether you have EDS or not, diagnosed or not) to AVOID all antibiotics from the fluoroquinolone or "quin"…

We recommend avoiding Cipro and all fluoroquinolones if you're hypermobile:

ohtwist.com/avoid-cipro

#EDS #HSD #Fibro #medicine #fibromyalgia #nurses #doctors #medicine #MedTwitter #MedEd #FOAMed #NEISvoid

Learn more about the late Alice Wong from her handle here:

@sfdirewolf.bsky.social

She was a fierce disability advocate and justice warrior to the bitter end.

She fought to live through COVID with a trach and more. She was a prolific and eloquent writer.

She is dearly missed. 💔🫂✌️💐

Livestream from 11-1 (no registration required) via San Francisco Disability Cultural Center on YouTube: Https://DCC.page/alice-program Virtual reception immediately after from 1-2 pm Pacific Time (Zoom registration required): Https://DCC.page/alice-receptoon The in-person gathering in San Francisco is invite only, and guests attending this should refer to your invitation with instructions for COVID testing, masks, getting to the event, etc.

Sorry for the late notice, but I just barely caught this going by on X this morning in time to catch the event.

Our beloved late Alice Wong's Celebration of Life is TODAY, Wednesday March 25th, 2026 at 11 a.m. Pacific Time.

Live streamed and in person both.

Solve for Both X and Y- Mechanical and Biochemical Approaches Solve for both X and Y- I don't recommend any single particular therapy/remedy for everyone, as clearly no single remedy will work for everyone nor will always be appropriate. But I do recommend some…

Solve for both X and Y when treating #hypermobility and Ehlers-Danlos Syndromes:

ohtwist.com/solve-for-bo...

#EDS #hEDS #HSD #Fibromyalgia #MedEd #FOAMed #MedTwitter #doctors #nurses #NEISvoid

A promotional graphic with a calm lake landscape and text banners at the top and bottom. The main photo shows a person sitting on a rocky shoreline facing a wide, still lake, with tree-lined banks on both sides and early autumn colors (greens with some reds and yellows) under a cloudy sky. Text at the top on a teal background reads: “The Silence After Survival...” A circular logo at the top left reads: “EDS Awareness” and underneath: “Ehlers-Danlos Syndromes” Text at the bottom on a teal background reads: “Guest post by Debbie Hellenbrand” Below that: “www.chronicpainpartners.com"

The Silence After Survival - Guest post by Debbie Hellenbrand on surviving anaphylaxis with caring help for once…

buff.ly/o1idmfK

#EDS #hEDS #HSD #MCAS #masto #zebras #Spoonies #MedX

Recommended Books- Living and Coping with EDS and Related Diseases Recommended Books provides a listing or books and other reading resources for those living and coping with EDS, MCAD and other comorbid diseases. A must see and read list of books!

My list of some recommended books on #EhlersDanlos Syndromes & #Hypermobility: ohtwist.com/eds-resource...

#EDS #HSD #fibromyalgia #MedEd #doctors #nurses #patients #medicine #EhlersDanlos #SED #NEISvoid

When Else to Suspect Ehlers-Danlos Syndrome - Oh TWIST When Else to Suspect Ehlers-Danlos Syndrome looks at additional signs and symptoms of the disease and its comorbid diseases.

When Else to Suspect Ehlers-Danlos Syndrome or #HSD
ohtwist.com/when-else-to...

#EDS #HMS #Fibromyalgia #MedEd #Doctors #Spoonies #Hypermobility #Zebras #MedTwitter #NEISvoid #Autistic #Autism #ADHD #MedX #MedSky

The Beighton Score as a measure of generalised joint hypermobility - Rheumatology International The Beighton Score (BS) is a set of manoeuvres in a nine-point scoring system, used as the standard method of assessment for Generalised Joint Hypermobility (GJH). It was originally developed as an…

The Beighton Score as a measure of generalized joint #hypermobility (a review) 2021 by Malek, Reinhold, Pearce buff.ly/2Syq5uV

#EhlersDanlos #EDS #hEDS #HSD #Fibromyalgia #fibro #Meded #FOAMed medicine #NEISvoid #MedTwitter #Doctors #Rheumatology #Genetics #MedSky

A smiling woman sitting on an exercise ball with arms outstretched, wearing a white tank top and black shorts. There is a cat lying on a nearby chair with a striped blanket. Behind her, banners on the wall say "AWOL Zebra." On the table next to her are towels, some white models or tools, and a glass. The top of the image displays the website "www.chronicpainpartners.com." Text at the bottom reads: "Interview with CHristie @AWOL Zebra" In the lower right corner is a logo that says "EDS Awareness Ehlers-Danlos Syndromes."

AWOL Zebra Podcast: Building Community (and Laughs) Around EDS

buff.ly/ofignWQ

#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Zebras #Spoonies #NEISvoid #ChronicIllness #Patients #Support

Infographic about Cerebral Outflow Disorder, related to Ehlers-Danlos Syndromes (EDS). At the top left is a circular EDS Awareness logo. The text reads: “Cerebral Outflow Disorder: Signs can include: Pulsatile Tinnitus Pressure Headaches IIH Brain Fog Vision Problems” There is an image of a person’s head in profile with a glowing neural network over the brain, and graphic icons of upward and downward arrows suggesting blood flow. The bottom text on a teal background reads: “What it is and Why EDS Patients Should Know About it chronicpainpartners.com”

Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it

www.chronicpainpartners.com/cerebral-ven...

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IIH #CSFLeak #Chiari #AAI #CCI #Headache #Spoonies #Zebras #MedEd #MedSky #Doctors #neurology

Some days the hardest part is explaining to people why you look fine but feel terrible. You're not making it up. Your symptoms are real, your fatigue is real, and you deserve support.

#ChronicIllness #InvisibleIllness #Spoonie

COMPLICATED Children with complex illnesses and their families are labeled “too complicated” or torn apart by accusations of medical child abuse.

You can now stream the #EDS movie COMPLICATED from Open Eye Pictures at home for $14.98 USD. (Unsure about abroad.) I did, and bawled my eyes out, OMG! It's powerful! Have mast cell meds ready!
#zebras #MedSky #doctors #spoonies

openeyepix.myshopify.com/products/com...

The Hellenbrand family of four standing together outside next to a military-style vehicle. The family includes a woman with short red hair, wearing glasses and light green clothes, a man in a maroon hoodie and jeans, a boy in a suit and tie with white sneakers, and a girl in a long pink dress with glasses.

“Watch Out For Mum” – Wrongful Child Abuse Allegations Harms Whole Family in the Netherlands

buff.ly/puQVunj

#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #Zebras #Spoonies #NEISvoid #Medicine #Doctors #Nurses #FII #MedicalKidnap #MedSky #Genetics #Autism #ADHD

The Quiet Weight of Chronic Illness Grief – EDSAwareness.com Living with a rare, chronic illness is profoundly isolating—not only physically, but emotionally. Even when surrounded by others, I often feel like a ghost, disconnected from the world around me. I…

"I miss the #spontaneity of life before #illness. I miss choosing based on interest rather than capacity. Most of all, I #grieve the aftermath—the flares, the days in bed, the cancellations.": buff.ly/Xl48H3m

via @cppedsa.bsky.social
#ChronicPain #spoonie #ChronicIllness #EDS #grief #identity

A promotional graphic for EDS (Ehlers-Danlos Syndromes) awareness about head and neck research. The design has a teal background with white text and several images: an X-ray of a neck with orange measurement lines and arrows, a medical spine model being pointed at with a pen, and an illustration of a woman shrugging with palms up. Yellow question-mark icons appear on the left and right. Text shown: EDS Awareness Ehlers-Danlos Syndromes Measuring the unmeasured... What two new studies say about the head, neck and hEDS Some results may be unexpected.... www.chronicpainpartners.com

Measuring the Unmeasured - What Two New Studies Say About the Head, Neck, and hEDS

buff.ly/niK7jRw

#EDS #hEDS #Zebras #CCI #Medicine #MedSky

Thank you.

Thank you!

The Chronic Constellation- the Double Trifecta of Co-morbid Conditions The Chronic Constellation- a look at the collection of co-morbid conditions that we see common in the hypermobile and autistic community.

The RCCX hypothesis *may* explain why #hEDS and the #HSD come with so many comorbidities:

ohtwist.com/the-chronic-...

#EDS #CFS #meded #EhlersDanlos #hypermobility #CAH #ME #Spoonie #POTS #MCAS #MyalgicE #MedTwitter #NEISvoid

The Ehlers-Danlos syndromes GP Toolkit A guide for GP's to approaching the management of people who have EDS in a primary care setting, as well as indications for onward referral

Share the #EDSToolkit for doctors spearheaded by Dr. Reinhold in 2018 for NHS GPs, but available to anyone willing to learn more about #EhlersDanlos & #hypermobility Spectrum Disorders!

gptoolkit.ehlers-danlos.org

#MedEd #FOAMed #MedTwitter #NEISvoid

They’ve been BITTEN: reports of institutional and provider betrayal and links with Ehlers-Danlos Syndrome patients’ current symptoms, unmet needs and healthcare expectations - Jennifer Langhinrichsen-Rohling, Chrystal L. Lewis, Sean McCabe, Emma C. Lathan, Gabrielle A. Agnew, Candice N. Selwyn, Margaret E. Gigler, 2021 Introduction: Patients with rare and/or care-intensive conditions, such as Ehlers-Danlos Syndrome (EDS), can pose challenges to their healthcare providers (HCPs...

They’ve been BITTEN: reports of institutional and provider betrayal and links with Ehlers-Danlos Syndrome patients’ current symptoms, unmet needs and healthcare expectations 021 Langhinrichsen-Rohling, Lewis,McCabe et al

buff.ly/35YX3bk

#EDS #HSD #hEDS #MedEd #NEISvoid #MedSky

Sorry about the bad link. Try this one:
pmc.ncbi.nlm.nih.gov/articles/PMC...

Here's a working link. Sorry about that folks:

pmc.ncbi.nlm.nih.gov/articles/PMC...

Beyond bones: The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification: an observational study Fibromyalgia and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are poorly understood conditions with overlapping symptoms, fuelling debate as to whether they are manifestations of the same spectrum or separate entities. Both are ...

Try this meanwhile:

pmc.ncbi.nlm.nih.gov/articles/PMC...

Oops, me neither. Sorry about that. I'll need to delete and research before reposting. Thanks.

Beyond bones: The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification: an observational study 2021 Eccles, Thompson, Themelis et al www.rcpjournals.org/content/clin...

#EDS #fibro #HSD #MECFS #NEISvoid