EhlerDanlos images

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Raising awareness for all our heart problems today! Hopefully all our hearts maintain stable for as long as possible! [image transcription] an infographic entitled cardiovascular characteristics of EDS. An image of a heart sits in the centre surrounded by characteristics in bubbles. Postural orthostatic tachycardia syndrome, arterial dissections, greater risk of bleeding, aortic root dilation, aneurysms, hypertension/ hypotension, early-onset varicose veins, valve dysfunction/ prolapse, haematomas, arterio-venous fistulas, autonomic dysfunction, thoracic outlet syndrome, purpura. Hashtags #posturaltachycardia #arterialdissections #aorticrootdilation #aneurysm #autonomicdysfunction #thoracicoutletsyndrome #arteriovenousfistulas #ehlerdanlos #ehlersdanlossyndromes #ehlersdanlossyndrome #ehlersdanloslife #ehlersdanlosawareness #ehlersdanlossyndromeawareness #ehlersdanloswarrior #ehlersdanlosproblems #edsproblems #edslife #ehlersdanlosgrrrls #ehlersdanloszebra #spoonielife #chronicillnesslife #chronicillnessawareness #invisibleillnessawareness #edswarrior #maketheinvisblevisible #classicaleds #hypermobileeds #chronicillnesslife

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5/17/2024, 7:00:18 PM

When I was 14 I was first told that the pain I was feeling was amplified in my head. It didn’t take long for my “providers” to tell me that my pain was my fault. My joints locking up was my fault. My inability to walk, write, move was all my fault. Think of how damaging that is to a young teen brain. It took an additional 13 years to get correctly diagnosed, to finally be seen. I was finally told that all that has been happening is first and foremost real and also that none of it is my fault. None of it is in my head. hEDS is under diagnosed and does not have one “look” in a patient. The Ehlers-Danlos syndromes are a group of hereditary disorders of connective tissue. Connective tissue is found all over the body, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on. All of those areas of connective tissue can be affected by EDS causing an endless amount of issues and pain. Once I finally got the correct diagnosis, everything made sense. Every ounce of pain, every joint issue, and related disorder was explained. I finally was relieved of the burden that this was all my fault or in my head. This EDS awareness month, I hope to bring some awareness so that others don’t have to be told those same things. So that others can be diagnosed correctly and not feel like they are at fault. I want to raise awareness so that all of someone’s symptoms are considered and most importantly so that people learn. If people learn others are seen, heard, and understood. We deserve that, all of us. #ehlerdanlos #hEDS #chronicpain #POTS #MCAS #amplifiedpain

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5/17/2024, 6:15:16 AM

The irony that today is International Hyperemesis Gravidarum Awareness Day and I’m stuck in the hospital for that exact reason seems like the perfect time to finally put into words what HG has been like. I’ve been extremely sick since the moment we found out I was pregnant. The doctors assured me it’d get better as the weeks went on. After 25 weeks of being a physical & emotional wreck from getting so sick every single day while not being taken seriously, told that I just have to get through it despite feeling myself withering away and being medically gaslit/lied to, Nick and my parents helped me decide that we couldn’t accept this for the rest of my pregnancy needed to switch high risk doctors + hospitals. I was put on bed rest to help prevent the vomiting spells. On Mother’s Day, we headed to my parents so I could get out of the house for a little bit. Our low key Mother’s Day celebration turned into my fam calling 911 after I dislocated my ribs while puking and legitimately could not even slightly move without screaming. Ehlers Danlos Syndrome + pregnancy + constant violent wrenching due to Hyperemesis ended up causing me to now have Slipping Rib Syndrome + torn muscles in my abdominal wall. In addition to the 10/10 pain every time I slightly moved due to my ribs sliding out of place, my electrolytes were critically depleted + started causing issues with my heart. After a lot of trial and error of meds + infusions, my pain and vomiting spells are finally improving (as is my bloodwork). I’m finally starting to feel human again for the first time in months. I’m so grateful that we decided to switch doctors and hospitals. Baby and I are both finally getting the care we need to get through the next 6.5 weeks until my c-section. Forever grateful for the MFM + labor & delivery team here at Cleveland Clinic Akron General. Their knowledge, bedside manner and compassion have been unmatched. (Continued in comments)

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5/16/2024, 5:30:37 AM

Nos vemos a las 19:00 para hablar del Síndrome de Ehler-Danlos. En las plataformas morada y verde, como siempre. 😉 #hecatefenix #escritora #streamer #letrista #novelista #creadoradecontenido #libros #cuentos #improvisacion #amazon #kdp #directos #twitch #laslocurasdehecatefenix #lashistoriasdelaabuela #lashistoriasdelapija #lashistoriasdelamonja #lashistoriasdelacientifica #escribiendoconlastreamer #hablandodelibros #entrevista #rol #especialestematicos #microrrelatoscarnavaleros #charlando #enfermedadesraras #eds #ehlerdanlos #ehlersdanlossyndrome

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5/15/2024, 6:17:57 PM

When it comes to healthcare providers, I am extremely fortunate. In a world where most chronic illness patients come home from the doctors crying because of medical gaslighting and poor treatment, I feel incredibly privileged that I come home crying because of how thankful I am for my doctor. I have worked with the same doctor for most of my life, and he has been so wonderful and helpful through my journey and always makes an effort to make things as easy on me as possible. He listens and validates the difficulty of my experience and always makes sure that I am comfortable with the treatment he recommends. It is heartbreaking to know that not everyone gets the medical treatment they deserve. I hope that someday everyone will be able to receive compassionate care and support from their providers the way I have been so blessed to. . . . . . Tags: @ehlers.danlos #myedschallenge #zebrastrong #ehlersdanlossyndrome #ehlerdanlos

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5/13/2024, 4:23:46 AM

❤️‍🩹 This love is more profound than this pain . . . . #FarFrom #Endometriosis #EndometriosisUK #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndrome #IBD #ChronicPainFriends

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5/12/2024, 9:52:57 PM

Does your jaw pop, click, or get stuck? Most people don't consciously think about how they move their mouth until it isn't working. Sometimes the problem is that the ligaments are too loose and we can't coordinate the movement well. Check out ideas for what to do to help: https://www.allytotalpt.com/post/tmj-hypermobility-proprioception * * * #tmjpain #tmd #tmj #hypermobilityproblems #ehlerdanlos

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5/11/2024, 12:00:11 AM

💔 I didn't need character building but it happened . . . . #FarFrom #Endometriosis #EndometriosisUK #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndrome #IBD #ChronicPainFriends

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5/10/2024, 7:33:42 PM

What an amazing kick off to #ehlersdanlosawareness month!! The @ehlers.danlos is in #NewYork #TimesSquare - for the next few days and yours truly is part of the campaign. 😍😍 . Thank you to @nylasammons for the amazing photo. Big up to @ehlers.danlos and @lara.bloom for getting this going and persevering with all the issues that came with it. . If you’re in #nyc go check it out 😀😀. . #ehlersdanlossyndrome #ehlersdanlos #ehlerdanlos #paraclimbing #paraclimber #limbdifference #luckyfinproject #luckyfinsrock #cancersurvivor @lucky_fin_project @edsletzebuerg @ehlers.danlos.initiative @eds_unplugged @ehlersdanlosuk @eds_climbers #notalldisabilitiesarevisible #chronicillness #bringiton #yeswecan .

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5/9/2024, 8:03:28 PM

❤️ You've changed lives you may never even know about . . . . #FarFrom #Endometriosis #EndometriosisUK #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndrome #IBD #ChronicPainFriends

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5/9/2024, 7:49:54 PM

Jag jobbar ju med tidningen EDS-nytt, och har även ganska nyligen fått diagnosen hEDS. Det är säkert inte så bra för överrörliga höfter att sitta så här. Men bekvämt. Denna månaden är det EDS/HSD Awareness month som @edsriksforbund så klart uppmärksammar! #myedschallenge #myhsdchallenge #ehlerdanlos

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5/9/2024, 7:39:25 AM

La sindrome di Ehlers-Danlos (EDS) comprende un gruppo clinicamente e geneticamente eterogeneo di malattie ereditarie del tessuto connettivo con caratteristiche tra loro comuni, che presentano gravità e combinazioni di sintomi diverse e si caratterizzano per: ipermobilità articolare generalizzata, alterazioni del derma (cute iperestensibile e soffice) e disfunzione di alcuni organi interni e dei vasi sanguigni, che appaiono più fragili facilitando la formazione di ecchimosi cutanee. Complessivamente rappresentano la forma più comune di patologie sistemiche del tessuto connettivo, Le sei varianti più conosciute sono: classica, vascolare, ipermobile, cifoscoliotica, artrocalasia e dermatosparassia. Nella variante definita Ehlers-Danlos Classica l’organo prevalentemente interessato è la cute, che appare molto elastica, soffice e vellutata; nonché estremamente fragile. Tipica è la cutis laxa o iperelastica che determina, una volta estesa, una grinza nella sede sottoposta a trazione per un’incapacità a ritornare alla posizione iniziale. La diagnosi è clinica ma necessita di una conferma molecolare, in quanto le basi genetiche di questa forma di EDS sono note: si associa a mutazioni patologiche che provocano una perdita di funzione nei geni COL5A1 e COL5A2 (collageni) e presenta una modalità di trasmissione autosomica dominante (è sufficiente che una singola copia del gene sia alterata per causare le manifestazioni cliniche). Per leggere la nostra rivista basta essere soci di@aisfodv_official . Scoprite come diventarlo al link in Bio 👆 #fibro #fibromialgiapositiva #dolorecronico #fibromialgiaitalia #fibromialgia #malattiacronica #ehlerdanlos

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5/7/2024, 12:33:03 PM

Lovely stroll in market rasen woods the other day. When possible, walking is a brilliant form of exercise🚶🏼‍♀️😌 #ehlerdanlossyndrome #ehlersdanloslife #ehlersdanlosawareness #ehlersdanlossyndromeawareness #ehlerdanlos #EDS #vasculareds #VEDS #Vascularehlersdanlossyndrome #HEDS #hypermobileehlersdanlos #hypermobileehlersdanlossyndrome #Hypermobility #Hypermobileeds #Hypermobilespectrumdisorder #Hypermobile #hypermobilityawareness #chronicillness #chronicillnessawareness #chronicillnesswarrior #chronicillnessandme #disability #disabilityawearness #invisibleillness #invisibledisability #chronicallyfabulous #spoonie #spoonielife #zebra #happy

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5/5/2024, 7:01:24 PM

Just a heads up everyone. May is Ehlers-Danlos awareness month so I'm be posting a number of post and stories with information about it throughout this month. #ehlerdanlossyndrome #ehlersdanloslife #ehlersdanlosawareness #ehlersdanlossyndromeawareness #ehlerdanlos #EDS #vasculareds #VEDS #Vascularehlersdanlossyndrome #HEDS #hypermobileehlersdanlos #hypermobileehlersdanlossyndrome #Hypermobility #Hypermobileeds #Hypermobilespectrumdisorder #Hypermobile #hypermobilityawareness #chronicillness #chronicillnessawareness #chronicillnesswarrior #chronicillnessandme #disability #disabilityawearness #invisibleillness #invisibledisability #chronicallyfabulous #spoonie #spoonielife #zebra #happy

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5/5/2024, 6:06:00 PM

“When you hear hoof beats, think horses not zebras”. Most people may be horses, but I’m a zebra. I stand by my phrasing of that sentence #ehlersdanlosawareness #ehlerdanlos #ehlerdanlossyndrome #disability #hypermobility #horses #zebras #thinkhorsesnotzebras

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5/4/2024, 12:21:38 AM

🖤🤍🦓May is Ehelers-Dahnlos Syndrome (EDS) awareness month🦓🤍🖤 #ehlerdanlossyndrome #eds #ehlerdanlos #ehlersdanlosawareness #edsawarenessmonth #edsawareness #chronicillness #zebra #rare

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5/3/2024, 1:58:19 AM

What is hEds? #edsawareness #ehlerdanlos #ehlorsdanlosawarenessmonth #disability #dynamicdisability #showyourstripes

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5/2/2024, 6:47:49 PM

It’s Ehlers danlos month. I’m really excited to share my journey with you in depth this month. I was formally diagnosed with hEds at the end of last summer #ehlerdanlos #ehlerdanlossyndrome #edsawareness #heds #may #disability

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5/2/2024, 2:39:02 AM

Per trobar respostes, per trobar la Veritat del Ser, s'ha d'anar cap endins. Fora sols existeix la confusió de Maya . . . . Foto, subterrani de l'hospital de Sant Pau de Barcelona @tailanerea @josep_dayaveer @vandanaalonso #hospitaldesantpau #barcelona #viatgeinterior #llum #light #lliberacio #salut #advaitavedanta #sanatanadharma #hospital #catalonia #ehlerdanlos #maya #meditacio #photography

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5/1/2024, 10:47:21 AM

Hello May🦋🦓 My name is Priscilla Brülhart and my artist name is Gauri. Im an indian classical dancer of kathak and a holistic therapist based in Switzerland. Im living with genetic conjonctive tissues dissability and hyper mobility disorder. I also live with hyper sensitivity, EHP and autism spectrum wich can be related with Hsd. After approxymatively 8 years of medical marathon, daily inflammation, sprain, dislocation, hernia, chronic pain, chronically over tiredness, veinal and neurological disabilities, I finally got a diagnose 4 months ago. I got to know that some people got over 25 years to get diagnosed that’s why awareness is so important. I now know much better and understand my condition and my body so that I can live according to it and train properly. I didn’t know before what was going wrong and did a lot of exercises wich where harming me. I changed my physiotherapist and adapted many routines in my life like living quality, sleep and food. I also had period where I could not work at all and that’s the reality not social media posts. Each person has different symptoms and I will share a lot more information during this month thank to this challenge. Let’s share and talk together. The medicine and hospitals have so much to learn about zebras and about how to deal wich such disabilities and mostly how to get in touch with specialist when they are stuck in diagnosis. You out there. You are not alone ❤️🔥💪🦓 looking forward to meet other zebras! #ehlerdanlos #myedschallenge #myhsdchallenge #zebrastrong #zebra @ehlers.danlos

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5/1/2024, 10:19:23 AM

❤️‍🩹 The pat on the back that never happened . . . . #FarFrom #Endometriosis #EndometriosisUK #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #SelfLove #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndrome #IBD #SelfCare

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4/30/2024, 10:53:46 AM

❤️‍🩹 If I want to divorce from her, I need to start looking after myself . . . . #FarFrom #Endometriosis #EndometriosisUK #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #SelfLove #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndrome #IBD #SelfCare

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4/28/2024, 11:01:11 AM

Answering this one because we know we're clicky but very few people can explain it! [image transcription] an infographic entitled Why do the joints of hypermobile people click so much? The joints of the human body can make a “clicking” or “popping” noise as the air bubbles that can often get trapped in the fluid surrounding the joints escape the joints as a result of a movement of the joint allowing them to do so. These bubbles can occur in everyone’s joints so everybody can make clicking noises when they move. However people with hypermobility experience this far more often. This is because the joints can stretch further very easily even from small movements which allows more of the causative bubbles to form. These bubbles can also be considerably bigger due to hypermobility so the noises they make can be a lot louder. Hashtags: #ehlerdanlos #ehlersdanlossyndromes #ehlersdanlossyndrome #ehlersdanloslife #ehlersdanlosawareness #ehlersdanlossyndromeawareness #ehlersdanloswarrior #ehlersdanlosproblems #edsproblems #edslife #ehlersdanlosgrrrls #ehlersdanloszebra #spoonielife #chronicillnesslife #chronicillnessawareness #invisibleillnessawareness #edswarrior #maketheinvisblevisible #classicaleds #hypermobileeds #chronicillnesslife

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4/27/2024, 7:00:14 PM

. HET IS OKÉ Dat je meer slaapt dan een ander, Of het leven in pyjama easier lijkt. Dat je zonder te verpinken kan kiezen voor jezelf, ookal als die ander lijdt. Dat je keuzes moet maken, elke dag opnieuw. Je niet altijd zal winnen, of gezellig zijn misschien. HET IS OKÉ Om trager te leven, minder productief bij tijd. En hier en daar te vluchten omdat het je spijt. Dat je de pijn verbijt en liefde dan afsnijd. Omdat het te heftig is, want anders ben je jezelf kwijt.. HET IS OKÉ Dat je weent, of lacht en zelfs danst. Want deze ziekte zwanst, ze lult en ze prikt. Ze laat je niet los ookal wil je dit. 🖤 WEES LIEF VOOR JEZELF . . . . . . #chronischziek #chronischvermoeid #chronischepijn #fibromyalgie #Ilonavanroyen #chronischvermoeidheidssyndroom #ziektevanlyme #ziektevancrohn #MEcvs #ziektevanbechterew #MS #multiplesclerose #ikbenonzichtbaarziekhetboek #ziektevanhuntington #mentalegezondheid #ziektevankahler #ziektevanmeniere #depressie #angststoornis #artrose #osteoporose #ziektevankawasaki #kanker #reuma #COPD #ehlerdanlos #sarcoidose #NAH #longcovid

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4/27/2024, 4:28:32 PM

❤️‍🩹 I don't know who I'd be without my Endo . . . . #FarFrom #Endometriosis #EndometriosisNorthernIreland #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndroIt's hard to trust your body when all you've ever been told is that it's lying to you me #IBD #ChronicPainFriends

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4/25/2024, 9:17:08 PM

This May I am participating in #DazzleWalk 2024 to raise money for @ehlersdanlosuk 🦓 (link in bio) @ehlersdanlosuk provide information, advice and support for people affected by the 13 subtypes of EDS as well as Hypermobile Spectrum Disorder ( #HSD). Without their support I would not finally have a diagnosis of hEDS age 34. The average time to diagnosis in the UK is 10 years but many of us wait a lot longer due to the lack of understanding & awareness of the condition. I realise this isn't the longest walk/limp & that it will be spread over a month but I don't want to let people down by over promising and under delivering! EDS & it's many comorbid conditions like #Raynauds & #MCAS mean my health is really unpredictable & I regularly get injured even doing the most simple things (I recently managed to sublux a rib having a hug!). I've lost count of the numbers of times I've dislocated my knees or woken up with subluxed joints. On top of the 50 miles I hope to cover I will still be doing my daily physio regime as well as undertaking a specialist physical rehab program. Unfortunately there is no cure for EDS but there's a lot that can be done to help us manage our conditions & get the most out of life. Please help me raise awareness of this little known condition. We're not rare, just rarely diagnosed. https://www.justgiving.com/page/kat-jackson #DazzleWalk2024 #EhlerDanlosSyndrome #EDS #EhlerDanlos #ChronicPain #ChronicIllness #Hypermobile #Hypermobility #EDSUK #Spoonie

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4/25/2024, 3:55:55 PM

Años y años de dolores, operaciones, problemas incluso en el corazón y nadie sabia decirme que me pasaba, incluso minimizaban mi dolor. Tengo Sindrome de Ehlers Danlos y por fin entiendo todo. No hay tratamiento ni cura pero hay que seguir en la lucha diaria #ehlerdanlos #ehlersdanlossyndrome #sindromedenehlerdanlos #sed

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4/24/2024, 8:38:55 PM

. EENZAAMHEID Het is een veelvoorkomend probleem bij vele onzichtbare zieken. En het komt de laatste maanden terug vanonder een steen piepen in mijn leven. Daarom is De community die we hier vormen super belangrijk 🫂 Hier vinden we herkenning en voelen we ons minder alleen 🤍 Dankuwel voor de kans. Ik krijg veel terug van jullie, daarom steek ik hier graag tijd in 🙏 Zeker nu dat de hersenschudding niet geneest. We zitten aan dag 124 en ik zou het niet willen weten waar ik stond zonder al jullie mega ervaren tips en lieve boodschappen. 👇👇👇👇👇👇👇👇👇👇👇👇👇 IK BEN ONZICHTBAAR ZIEK Het boek Heb jij 'm al? Het is onwerkelijk welke mooie reviews elke dag binnenkomen... Hoeveel mensen echt iets hebben aan dit boek. Heb jij een chronische ziekte of iemand in je omgeving? Koop hem voor jezelf of voor meer herkenning kan je hem ook aan je omgeving geven ♡ '𝐈𝐤 𝐛𝐞𝐧 𝐨𝐧𝐳𝐢𝐜𝐡𝐭𝐛𝐚𝐚𝐫 𝐳𝐢𝐞𝐤' - Een eerlijk ervaringsverhaal van een chronische ziekte - Tips voor jou en je omgeving, over: . Zelfzorg . Je chronische pijn snappen . Je slaapgewoonten . Wapenen tg piekeren . Omgaan met emoties . Wat als het slecht met je gaat . Gelukkig zijn in een relatie . Healen . Tips voor wie met ons omgaat 𝐓𝐞 𝐤𝐨𝐨𝐩 👉 @studio.go 👉 Standaardboekhandel online of reserveren aan de kassa 👉 Luisterboek sinds nov 22 bij @passendlezen 👉 Luisterboek in the making met mn eigen stem (groot project) ♡♡♡♡♡♡

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4/23/2024, 9:25:35 PM

💔 In their office we are not equals . . . . #FarFrom #Endometriosis #EndometriosisNorthernIreland #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndroIt's hard to trust your body when all you've ever been told is that it's lying to you me #IBD #ChronicPainFriends

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4/23/2024, 7:14:27 PM

💔 Does this voice ever go away? . . . . #FarFrom #Endometriosis #EndometriosisNorthernIreland #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndroIt's hard to trust your body when all you've ever been told is that it's lying to you me #IBD #ChronicPainFriends

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4/22/2024, 7:00:31 PM

Por que não me diagnosticaram antes? . . . . . #dor #dorinvisivel #dorcronica #fibro #fibromialgiadordiaria #fibromialgia #sed #hipermobilidade #ehlerdanlos

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4/22/2024, 1:03:49 PM

Raising awareness of the causes of EDS flares today! Hopefully everyone is flare free but lots of love either way! [image transcription] an infographic entitled causes of EDS flares. The causes listed are: physical overexertion, surgeries, mental exhaustion, sudden changes in weather, autonomic dysfunction flares, sudden changes in air pressure, certain vitamin deficiencies, injuries to bone/ soft tissue, progesterone level increase, high humidity/ rainy weather, cancer/ cancer treatment, lack of sleep, cold weather. Hashtags: #ehlerdanlos #ehlersdanlossyndromes #ehlersdanlossyndrome #ehlersdanloslife #ehlersdanlosawareness #ehlersdanlossyndromeawareness #ehlersdanloswarrior #ehlersdanlosproblems #edsproblems #edslife #ehlersdanlosgrrrls #ehlersdanloszebra #spoonielife #chronicillnesslife #chronicillnessawareness #invisibleillnessawareness #edswarrior #maketheinvisblevisible #classicaleds #hypermobileeds #chronicillnesslife

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4/21/2024, 7:00:06 PM

❤️‍🩹 You are not the problem . . . . #FarFrom #Endometriosis #EndometriosisNorthernIreland #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndroIt's hard to trust your body when all you've ever been told is that it's lying to you me #IBD #ChronicPainFriends

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4/21/2024, 10:57:49 AM

❤️‍🩹 Needing people is not a weakness . . . . #FarFrom #Endometriosis #EndometriosisNorthernIreland #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndroIt's hard to trust your body when all you've ever been told is that it's lying to you me #IBD #ChronicPainFriends

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4/20/2024, 10:58:41 AM

❤️‍🩹 Fight for you!!! . . . . #FarFrom #Endometriosis #EndometriosisNorthernIreland #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndroIt's hard to trust your body when all you've ever been told is that it's lying to you me #IBD #ChronicPainFriends

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4/19/2024, 10:07:40 PM

《 Je t'offrirai des baisers que tu pourras garder comme on garde une lettre d'amour. Quelque part dans un tiroir de ta vie, à ouvrir et relire les jours de pluie. 》 #sarahsabbagh #citation #girlwithpiercings #girlwithtattoos #swissgirl #feeling #girlwithglasses #goodvibes #feelinggood #gratitude #happiness #laugh #girlwithehlerdanlos #ehlerdanlos #illness #sickgirl #switzerland #living #keepgoing #reading #beautiful #loveletter #sunshine

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4/18/2024, 11:52:45 PM

💔 The wounds others caused hurt more than those from my disease . . . . #FarFrom #Endometriosis #EndometriosisNorthernIreland #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndroIt's hard to trust your body when all you've ever been told is that it's lying to you me #IBD #ChronicPainFriends

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4/18/2024, 8:14:10 PM

Sediano vem de SED: Síndrome de Ehlers-Danlos. Aqui no Brasil se popularizou chamar de sediano quem tem SED. Também podemos nos referir a quem tem o Transtorno do Espectro da Hipermobilidade, já que os sintomas são muito similares a SED hipermóvel. E por que Loja dos Sedianos? Nosso objetivo é facilitar a buscar por produtos que possam melhorar a qualidade de vida de quem está no espectro da hipermobilidade articular, tais como produtos que aliviam a dor, que ajudam no controle da disautonomia, ou que ajudam a poupar energia (e consequentemente ajudar na fadiga crônica). Por isso nosso nome, pois somos a Loja dos Sedianos. :) 🦓 #ehlerdanlos #sed #hipermobilidade #dorcronica #fadigacronica #disautonomia #genetica #reumatologia #fisioterapia #doençasraras

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4/18/2024, 3:50:46 PM

❤️‍🩹 You are allowed to make space for your illness . . . . #FarFrom #Endometriosis #EndometriosisNorthernIreland #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndroIt's hard to trust your body when all you've ever been told is that it's lying to you me #IBD #ChronicPainFriends

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4/17/2024, 7:11:01 PM

💔 I don't know what my gut sounds like anymore . . . . #FarFrom #Endometriosis #EndometriosisNorthernIreland #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndroIt's hard to trust your body when all you've ever been told is that it's lying to you me #IBD #ChronicPainFriends

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4/16/2024, 5:40:52 PM

Só quem tem fibromialgia sabe o quanto ela dói. Não desista do seu tratamento. Você merece viver melhor, com menos dores e mais qualidade. Nós entendemos você! . . . . . #dor #dorcronica #fibro #fibromialgia #dordiaria #fibromialgiadordiaria #fibromialgiadoi #sed #hipermobilidade #ehlerdanlos

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4/15/2024, 6:37:33 PM

. WELK INZICHT GEEF JE GRAAG MEE AAN GEZONDE MENSEN? We leren zoveel door dat verplichte vertragen. Welke zaken zou jij willen meegeven aan je gezonde geliefden en kennissen ? Bij mij zou dat zijn: 'Trust your gut' Als iets niet oké voelt dan is het ook niet oké. Ons lichaam voelt alles zoveel eerder en probeert ons dmv allerlei signalen wakker te schudden. Een prachtig systeem als je er correct gebruik van maakt. Ik ben benieuwd naar die van jullie! LIEFS ♡ . . . . . . . . . . . . #chronischziek #chronischvermoeid #chronischepijn #fibromyalgie #postcommotioneelsyndroom #chronischvermoeidheidssyndroom #ziektevanlyme #ziektevancrohn #MEcvs #ziektevanbechterew #MS #multiplesclerose #ikbenonzichtbaarziekhetboek #ziektevanhuntington #taaislijmziekte #ziektevankahler #ziektevanmeniere #hersenletsel #angsten #artrose #osteoporose #onbespreekbaar #kanker #reuma #COPD #ehlerdanlos #sarcoidose #NAH #longcovid

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4/14/2024, 9:50:47 AM

Hi friends & fellow potsies! It’s been a while 👋🏼 In December, I was ✨officially✨ diagnosed with POTS. ☝🏼- I’ve been on meds but have recently been struggling again & feeling like I’m back to square one. I’m anxiously counting down until I see a POTS specialist 2 weeks from today! Some days I have more energy but some days I use up all my spoons like today. Today I: -Subbed as a school nurse from 8-2:30pm -Ran to the grocery store to pick up a few things/prepped dinner -Walked my dog 0.5 miles -Cleaned the bathroom ….Now I am on my couch drinking lemon water with my body aching & fatigue hitting me like a train 😅 A day that I’m not horizontal in bed is a win though. I grieve who I used to be, but I am hopeful this specialist will help me get back to the old me. ✌🏼 - I’ve been overwhelmed & frustrated as I feel like I’ve been in a constant POTS flare. Most days my heart rate is too high & I haven’t been able to exert myself or exercise. I’m very impatient & want to be managing this illness right now, but I need to take a step back & realize that it will take time, but I will eventually get there 💕 #pots #potsie #potsiesproblems #potsielife #potsies #spoonie #spooniesupport #spoonielife #chronicillnessawareness #chronicillnesshumor #mentalhealth #mentalhealthawareness #mentalhealthmatters #potsawareness #posturalorthostatictachycardiasyndrome #tachy #tachycardiaproblems #dysautonomia #dysautonomia #autonomicdysfunction #dysautonomiawarrior #spooniecommunity #spoons #nurse #nurseproblems #invisibleillness #diabetes #ehlerdanlos #endometriosis

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4/12/2024, 1:02:22 AM

Helping to visualise and explain dislocations 💕 [image transcription] an infographic entitled dislocations as seen on an MRI. Five images showing MRI scans of dislocated knee, shoulder, hip, elbow and both sacroiliac joints are included. MRIs are less likely to be done for dislocations because they take longer so very few images are available. Hashtags: #ehlerdanlos #ehlersdanlossyndromes #ehlersdanlossyndrome #ehlersdanloslife #ehlersdanlosawareness #ehlersdanlossyndromeawareness #ehlersdanloswarrior #ehlersdanlosproblems #edsproblems #edslife #ehlersdanlosgrrrls #ehlersdanloszebra #spoonielife #chronicillnesslife #chronicillnessawareness #invisibleillnessawareness #edswarrior #maketheinvisblevisible #classicaleds #hypermobileeds #chronicillnesslife

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4/11/2024, 7:00:22 PM

. PIJN Heel moeilijk uit te leggen, niet te zien. Vaak zijn tekeningen veelzeggender dan woorden. 🫂 #chronischziek #chronischvermoeid #chronischepijn #fibromyalgie #ziekteuitleg #chronischvermoeidheidssyndroom #ziektevanlyme #ziektevancrohn #MEcvs #ziektevanbechterew #MS #multiplesclerose #ikbenonzichtbaarziekhetboek #hashimoto #watjenietziet #chronischemigraine #chronischepijn #depressie #mentalegezondheid #artrose #osteoporose #onbespreekbaar #kanker #reuma #COPD #ehlerdanlos #spoonies #NAH #longcovid

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4/11/2024, 5:42:21 PM

I find this quote incredibly powerful because it reminds me that I get to choose. Suffering is not a requirement while battling a chronic illness. You don’t have to just tolerate the life you’ve been given. You don’t have to be stuck in a place of hopelessness. That’s a choice. Do you have to adapt your life some days? Or maybe even most days? That’s ok. I’m not asking you to just “push through the pain” and everything will go away. I’m reminding you that by being here, you are choosing to leave that stuck person behind today…and every day moving forward. #chronicillness #chronicillnessawareness #chronicpainwarrior #chronicpain #chronicillnesssupport #chronicillness #chronicillnessawareness #chronicpain #chronicpainwarrior #chronicpainawareness #chronicillnesses #vascularcompressionwarriors #chronicpainwarrior #chronicillnessawareness #chronicillnesses #chronicillness #chronicpain #nutcrackersyndromeawareness #survivor #chronicillnesswarrior💪 #chronicillnesssupport #powerthroughpain #disabilty #chronicdisease #chronicpainrelief #chronicinflammation #chronicpainsurvivor #chronicillnessfighter #chronicpelvicpain #vasculardisease #vascularcompressionwarriors #renalautotransplant #POTS #ehlerdanlossyndrome #ehlerdanlos #eds #edsawareness

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4/10/2024, 10:12:11 PM

These data showed how the stiffness of arteries was significantly reduced in EDS patients. This helps to explain why EDS patients experience drops in blood pressure when stood up. If you'd like to read it: https://pubmed.ncbi.nlm.nih.gov/31947929/ [image transcription] an infographic entitled research into arterial elasticity in EDS. A results graph showing the pulse wave velocity measures between EDS patients against healthy humans are significantly lower at every age range. This study (published in 2019) was aiming to explain the orthostatic intolerance seen in EDS patients. This data shows pulse wave velocity (pwv) which is a measure of arterial stiffness and this data shows that EDS patients have significantly weaker arteries which can lead to reduced blood pressure when standing. This explains the symptoms of OI and could help provide a simple test for EDS. Hashtags: #ehlerdanlos #ehlersdanlossyndromes #ehlersdanlossyndrome #ehlersdanloslife #ehlersdanlosawareness #ehlersdanlossyndromeawareness #ehlersdanloswarrior #ehlersdanlosproblems #edsproblems #edslife #ehlersdanlosgrrrls #ehlersdanloszebra #spoonielife #chronicillnesslife #chronicillnessawareness #invisibleillnessawareness #edswarrior #maketheinvisblevisible #classicaleds #hypermobileeds #chronicillnesslife

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4/8/2024, 7:00:13 PM

Even my meds are pink🎀🌸💗Wholesome Sunday dump⭐️ Btw to anyone who struggles with MCAS/food allergies I highly recommend @airup 🫶🏻 Being restricted to water, tea and milk isn’t much fun but at least with my Air Up I can my water tastes like different drinks! Been a real game changer for me💖 You can get so many different flavours but my personal fav is the cherry one🍒🌸 #chronicillness #illness #chronic #allergicreaction #pots #mcas #potsawareness #fibromyalgia #allergy #fibro #feedingtube #disability #gastroparesis #invisibleillness #mastcellactivationsyndrome #mastcellactivationdisorder #sunlightallergy #posturalorthostatictachycardiasyndrome #ehlerdanlos #eds #ehlersdanlossyndrome #airup #scoliosis #pink

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4/7/2024, 10:32:53 PM

❤️‍🩹 They cannot continue to sweep issues under the rug and control the narrative . . . . #FarFrom #Endometriosis #EndometriosisNorthernIreland #ChronicPain #MECFS #InvisibleIllness #InvisiblePain #ChronicPainLife #EhlerDanlos #ChronicIllnessFriendship #ChronicPainCommunity #EndoAwareness #PainWarrior #Fibromyalgia #ChronicIllnessLife #ChronicIllnessFamily #EhlerDanlosSyndrome #Adenomyosis #Endo #EndoTheStigma #Colitis #SickAndTired #1in10 #InvisiblePainCommunity #EndometriosisSucks #ChronicIllnessCommunity #MultipleSclerosis #ChronicFatigueSyndrome #IBD #ChronicPainFriends

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4/7/2024, 11:52:23 AM

ALLERGY UPDATE- Ok so long story short I’m now allergic to atmospheric rapeseed instead of it just being oral/in my food + feed - I’m reacting to the scent of it and BOY THATS ROUGH when it’s in pretty much every field around your house 🥲 Everytime I’m leaving the house I end up with severe nausea, headaches, tight chest, tight throat, pins + needles in my tongue, chronic fatigue, dizziness, and feel so out of it/like I’m in a daze/zoned out but can’t zone back in. Anyways, due to my symptoms my doctors are really worrying about me going into full anaphylaxis, so upped my Fexofenadine to the MAX dosage which is flaring up my POTS so badly:( but they said the risk of lowering the dosage is more severe than staying on the max🥲 I h and my face/skin is flaring again and we don’t know if it’s the rapeseed or the increased dosage of the Fexofenadine butttt either way it sucks. Although not as bad as my usual flares (touch wood) so taking that as a win! Joy. So basically been told it’s a waiting game for anaphylaxis as they’re expecting me to go into it at some point considering my symptoms right now, which is apparently pre-ana🤌 Any tips or advice is welcome!💗 #chronicillness #illness #chronic #allergicreaction #pots #mcas #potsawareness #fibromyalgia #allergy #fibro #feedingtube #disability #gastroparesis #invisibleillness #mastcellactivationsyndrome #mastcellactivationdisorder #sunlightallergy #posturalorthostatictachycardiasyndrome #ehlerdanlos #eds #ehlersdanlossyndrome #spoonie #scoliosis

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4/7/2024, 12:13:28 AM