🦓 I am a Zebra 🦓

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Hello I’m Angel and I was diagnosed with ehlers Danlos syndrome hyper mobility type. I was diagnosed with fibromyalgia in 2008 and knew something else was going on but trying to get doctors to listen proved very frustrating. Finally toward the end of 2016 I was diagnosed with ehlers danlos. I finally knew what was causing all of my pain and found out symptoms that seemed unrelated really were related. It took until mid 2018 to find a doctor who knew enough about it to help me. Zebras do exist

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armoire1chic and 51 others like this

81 Comments

ambentzen 🦓Never give up when you know something is wrong. The answers are out there. Stay strong!🦓

Oct 22Reply

annielily Hey beautiful. Nice to find you here. I’m a classic Zebra. 💜 🦓 🦓 💜🦓🦓.

Oct 22Reply

wendylynnmondo Lovely PFF...I am so sorry you struggle with this, I follow a beautiful woman on YouTube, "Mrs Ginger Beauty" and I never even knew what EDS was until I started watching her channel. She also suffers with EDS so I just wanted to give you her channel name so that you know of someone else that experiences the rare, likely very frustrating, symptoms of EDS.. maybe it will help to connect u both?!?! Love and prayers your way honey🌹

Oct 26Reply

ambentzen @annielily hello nice to meet you 😊

Oct 26Reply

ambentzen @wendylynnmondo thank you so very much! I will definitely follow her. I appreciate the info so much. Hugs to you 🤗 xoxoxo I have to say it makes life a little more interesting because I never know what’s going to happen. I was just hoping to share some info with others after I found out many doctors don’t even know about it. Thanks again love ❤️

Oct 26Reply

wendylynnmondo @ambentzen 🤗You are very welcome, hugs to you too..I can't even imagine dealing with that as life can be tough enough as it is❤🌹

Oct 26Reply

seriouslyviolet My cousin has lived w/EDS for over 25 yrs. She & I are 57&are like sisters. She lives near DC & I live in Pittsburgh. I'm an RN & I have MS - go figure 😉💕💕💕💕

Oct 27Reply

seriouslyviolet Our family has all kinds of autoimmune crap.... Great that you're spreading awareness about EDS 😘if I can help you, let me know, you're PFF ~Linda 💕💕💕💕

Oct 27Reply

seriouslyviolet I'm part of the wandering Gypsys follow group. You'd be a terrific addition to our group. If you're interested, please contact one of the administrators & tell them I sent you ~we're a great group of gypsy sisters ❤️❤️❤️

Oct 27Reply

seriouslyviolet Because my "Swiss cheese MS brain" will forget in about 5 minutes.... Have the best weekend 😎😎😎

Oct 27Reply

ambentzen @missramona thank you so very much. I appreciate it. My aunt has Eds also but she never really explained what it was and even though she knew of all my symptoms and never once said hey you might have eds lol. Want to hear something funny? My best friend was also diagnosed with eds. Weird lol

Oct 27Reply

ambentzen @missramona my best friend is an RN too and lives near Pittsburgh. Small world. Everyday is like a new adventure with EDS that’s for sure. What I found is most doctors don’t know about it much less the general public. I’ve been trying to tell everyone I know about it. You never know who it could help.

Oct 27Reply

ambentzen @missramona thank you so very much my PFF for the invitation. I’m going to definitely check it out. I have a brain like that too lol I forget all kinds of things regularly. Hugs xoxox

Oct 27Reply

posh_nparadise My step-daughter who I raised until she was 18 was diagnosed with the same thing. She had all of the symptoms. She’s so brittle and tiny. She suffers from joint pain among other things. It’s getting diagnosed more among younger teens. Prayers to you 🙏. Love this post!

Nov 04Reply

ambentzen @fabdealsnstealz thank you my pff! I have lots and lots of joint pain as well. I’m sure it’s due to all of the subluxations - the joints slipping partially out of place. Prayers to your step daughter. I’m glad more and more doctors are recognizing it and diagnosing it. Even more doctors need to be educated on the syndrome.

Nov 04Reply

skyrubin23 @ambentzen I am so sorry you have to live with this, my dear pff! I cannot imagine the level of pain you live with daily. Having a name for your illness must be a huge relief! My wish for you is that more research will bring you closer to a life without pain. 😘😘😘

Nov 04Reply

ambentzen @skyrubin23 thank you so my dear pff. It’s an adventure I like to say. I never know what each day will bring 😊 it was a great relief after years of knowing something was wrong to finally get a name for it. You never know where life Is going to take you. I like to think maybe there’s a reason for it and because of it and having to make changes in my life that it might take me somewhere I wouldn’t have gotten to without it. Xoxox

Nov 04Reply

skyrubin23 @ambentzen I have always said that there is a reason for everything- we may not realize it on our time, but we will. Making this listing and sharing your story will propel you forward- validation is an incredible impetus to bigger and better (or less achy and tired😂).😘

Nov 04Reply

posh_nparadise @ambentzen yes it is! If she even slept wrong her neck would pop. Once resulting in an ER visit and she had to wear a neck brace. We ended up getting her on a 504 plan in HS bc the weight of her bag with all her books caused injury.

Nov 05Reply

ambentzen @skyrubin23 thank you so very much xoxox. Not being able to continue the job I had led me here and in doing so I found a wonderful, supportive community and fantastic PFFs like you 💜 it has given me the opportunity to finally focus on making jewelry where I didn’t have the time before. Yep I sure do believe that things happen for a reason and that we don’t always know why at first.

Nov 05Reply

ambentzen @fabdealsnstealz oh my goodness! There are crazy things that happen with this. I’ve laid in bed before and felt my back slip right out. Just laying there. So far I’ve been able to get things back on my own and sometimes it takes a long time but I always know in the back of my mind I may not be able to. It’s definitely an experience and an adventure.

Nov 05Reply

ambentzen @fabdealsnstealz I think that may be the most frustrating part for me. That normal everyday things cause pain and injury. My biggest challenge has been learning my limitations. I’m sure I will always struggle with learning them and trying to stick to them.

Nov 05Reply

thebookmark @ambentzen Hello Angel! I’m sorry to hear that you have EDS. Both of my boys have EDS. So I know how you feel. My 11 yr old son will dislocate in his sleep. His ribs, pelvic bone and ankles are his most common dislocations. Interesting about the sleep connection. No one has ever mentioned that to us. My younger son doesn’t sleep at all. We are waiting on a sleep study. Hope you are having a pain free day.

Nov 10Reply

ambentzen @thebookmark thank you. I hope your boys are having a good day! My shoulder dislocated in my sleep the other night. This is hard to deal with sometimes I don’t know your boys deal with it. Maybe they’re better at it 😊 i think kids deal better a lot of times than adults do. Xoxox I didn’t start having subluxations and dislocations til I was older. I had signs when I was younger but no one ever connected the dots.

Nov 10Reply

ambentzen @thebookmark I think that’s what makes it hard for doctors is no one that has eds presents the same. Not even in families. Sending prayers and pain free thoughts to your boys 💜

Nov 10Reply

thebookmark @ambentzen sorry to hear about that. Do you see a chiropractor or someone that can treat your dislocations? Had I not been diagnosed with P.O.T.S I don’t know if I would have made the connection. They both have to have thorough cardiology work ups every 6 months for the rest of their lives.

Nov 10Reply

ambentzen @thebookmark I’m glad you made the connection. At least if you know what it is you can monitor it and take care of things better. I had to see a cardiologist for the first time earlier this year. No not yet. I’m looking for doctors that are knowledgeable about eds for that. I’ve read about wrapping the joints. I’d love to find a dr that knew how.

Nov 10Reply

thebookmark @ambentzen I would love to find a doctor who did that as well. I’m going to try aqua therapy for my 11 yr old. Have you tried that?

Nov 10Reply

ambentzen @thebookmark I haven’t I’ve been told it may help but I haven’t tried it yet. I do yoga when I can but I did find a yoga app that can meet you where you are and it even has some workouts for if you’re in bed. That way it isn’t strenuous but you’re still strengthening things. It’s ddp yoga. My son does it and has gone to the conventions and he recommended it.

Nov 10Reply

strictlyclassic So proud of you for putting this in your closet! I’m a fellow zebra and so is my 13 year old. I have been looking for our answers for 3 years spending close to $165,000 on unnecessary tests and to be heard. managed 12 Drs this summer and 9 were his. Diagnosed by a Dallas Geneticist both hypermobility 3. Chronic pain, weak joints, chronic headaches... I have POTS, EDS-3, Lupus and Mals. The struggle is real my friend, but I am so proud of your advocacy! I might just join you!! 🦓🦓 👯‍♀️

Nov 14Reply

ambentzen @strictlyclassic hello my dear friend. I have been amazed at the doctors who aren’t aware of this condition. Yes the struggle is real. It’s very frustrating to not have anyone listen to you and you know it’s not in your head. Hang in there. My heart goes out to you and your son. This is a difficult thing to deal with. Us zebras need to stick together! 🦓xoxox💜

Nov 19Reply

lilaccellar @ambentzen Sending positive vibes your way. I'm not EDS, but my fibromyalgia helps me empathize with the chronic pain and brain fog. Keep on keeping on, sister!

Nov 24Reply

feelfree2016 @ambentzen Thank you for sharing your story!! I have a dear friend and they think her son may hav EDS. This was so helpful!! Much love to you!! I am a warrior with multiple chronic illnesses I send my love, my positive this and my hope for you and all that the world can be a little bit kinder!!!❤️❤️❤️

Nov 24Reply

cottagegifts I’m a zebra too. Thankful for a Poshmark

Nov 29Reply

strictlyclassic @ambentzen love you friend! 🦓🦓 Buying finger splints from the EDS store. It’s killing my fingers.... hip MRI this week. Hip popped out of joint getting into the car and it feels really bad. Winter has been hard on the bones. Thanks for posting about the brain fog. I was thinking it was my POTS and Lupus. Totally forgot about that. 🙄😘🤷🏻‍♀️ Love your stripes! 🦓😘

Dec 11Reply

daffodildog23 Bless you- coming from a long nursing background Ive seen zebras confused w/horses a bit. Patronizing the patient. Categorizing a chronic pain sufferer as a med seeker. But have also met a few awesome doctors who “see” people. Have met many heroes living with chronic issues with admirable character.

Dec 11Reply

kirsfinefinds Hello! I am also a zebra! I have Dermatomyositis plus several other overlapping syndromes & conditions. So thankful for Internet selling!

Dec 13Reply

kasmith77 I thought I'd have a look at your other listings, and I saw this... I'm in the process of being tested for EDS now, which is a crazy coincidence. I probably just have hypermobile type, but I'm getting genetic testing next month to rule out vascular!

Dec 13Reply

ambentzen @daffodildog23 that is so true. I have seen many doctors who did not see what was really going on. Definitely lots of doctors treated me like a horse and not a zebra. I’m just glad I now what it is so I can advocate for myself. 💜

Dec 14Reply

ambentzen @kirsdressfinds winding hugs to you fellow zebra! I have fibromyalgia also. I too am so thankful for being able to sell on the internet. It helps me to feel useful.

Dec 14Reply

ambentzen @kasmith77 wow that is crazy! That’s what I have the hyper mobile type. I was tested earlier this year for vascular. It runs in my family. My aunt has it and has had lots of dislocations for many years and my symptoms weren’t as dramatic. I have lots of subluxations but rarely a dislocation. Lots of pain though. Because mine presented differently no one ever said maybe you have that too lol. It took years for a diagnosis. Good luck on your journey 💜xoxox

Dec 14Reply

kasmith77 @ambentzen I haven’t had a terribly dramatic medical history because I was never athletic, but I have POTS because of the blood pooling in my legs. The collagen in the blood vessels doesn’t constrict properly. Funny how people with similar conditions can bump into each other in unlikely places, isn’t it?

Dec 14Reply

ambentzen @kasmith77 it is. Want to hear something funny? My best friend was also diagnosed with hyper mobile eds. It’s so crazy. I played some sports but nothing super intense and was always really clumsy then the older I got weirder things started Happening and lots of pain. I’m glad to hear you haven’t had anything too horrible.

Dec 14Reply

kasmith77 @ambentzen One of my closest friends is hypermobile, but with no side effects. So envious.

Dec 14Reply

minedthemanor @kasmith77 I’m dealing with POTS too. Such a cluster for docs to get right. Hoping it’s due to pelvic venous compression because that’s fixable! I’ve had four kids and the symptoms make sense...waiting for my appt...what a journey.

Dec 24Reply

minedthemanor @kasmith77 EDS was considered at one point... @ambentzen Thanks for sharing what you are going through....I will someday, I just have no energy now....someday, right!? This whole process has opened my eyes to the need for education! The stories we could all probably tell, a novel! 😊♥️

Dec 24Reply

kasmith77 @minedthemanor I hope it's something treatable, too! POTS is so frustrating to deal with.

Dec 24Reply

infinitesupply Great Closet, I love it! Im going to follow its pretty inspiring! Good luck, and happy poshing! Happy 2019! Infinite Intelligence @InfiniteSupply

Jan 06Reply

trust_cassandra ME TOOO <333

Jan 11Reply

cute_not_crap I have EDS III! Gentle hugs to you!

Jan 23Reply

fashion1one I am zebra too!!

Jan 25Reply

angrymuffin75 I have eds too!!! Heading towards surgery #11 because of it. Can't believe the number of people commenting who also have it!

Feb 21Reply

fairylint005 ❤️❤️ while I don’t have Eds (I’m just hyper-mobile in a few places) I have some similar issues and a effing laundry list of diagnosis’s. I feel you. I’ve been living with chronic illnesses since I was 10 so testing and being the zebra is so not new to me. Onto conquering the world!!

Mar 07Reply

therescuer @ambentzen I’m a hypermobility type-girl. I’m 31 and have had all kinds of surgeries. I totally understand what you’re saying!

Mar 07Reply

couturemc EDS type 3 with cross over here. Glad you finally got a diagnosis! ❤️

Mar 09Reply

deannaaney 💕💕💕💕😘

Mar 13Reply

heidizme As a lupus warrior standing with you I will never call you lazy or blame you for not concentrating or say oh you look good cuz as i.. you always feel lousy but you slap that smile on and maybe a laugh or two because besides us autoimmune community no one understand unless they walk in our shoes God Bless 💜😘💜 nice to meet you I'm Heidi and im having a share party for lupus if you'd like to join us in May. Go to closet @candice3076 to sign up! Stay strong girl!💜

Mar 22Reply

nebettyboop @ambentzen 🙏🙏🙏💕💕💕

Mar 23Reply

vpristas May God bless you! Sending healing prayers, love & light! 🙏💗😘🦓

Mar 24Reply

deardeerapparel I am a zebra, too. A doctor literally told me that phrase while incorrectly diagnosing me with monitoring for the 1000th time. At or before the age of 19 I had (now 27) A jak2 gene mutation bonecancer: myleofibrosis PVT Splenomegaly I'm sending love too all the zebras out there. If anyone ever needs to talk, I am always available via insta @ amaria_unfiltered

Mar 29Reply

cute4less2012 Both my kiddo and myself have heds. May tomorrow be a good pain day. :)

Apr 16Reply

annielily 🦓 I’m Classic. 🦓💗🦓

May 11Reply

longlegit @ambentzen As a nurse, I like to know rare conditions such as EDS because sometimes we have to point out subtle differences to doctors and help our patients advocate for themselves. @cesarmarie Sorry to hear that you and your best friend have those conditions but I appreciate you bringing those illnesses to my attention as well. 🙏🏾 for good health. -Coco B 💃🏾

May 26Reply

raziahussaini Eds-hypermobility type right here 💝

May 31Reply

shopper919 I’m so sorry you suffer from this horrible condition. My heart is with you.

Jun 09Reply

delores1020 Hiya 🐾🖤🐾 I’m 60. I heard of this disease for the very first time last month and now you. Two in a month after all these years.. The first was the winner of Drag Race. Gosh, I thought she was just amazing and I bet you are too 🖤 I believe, when the word starts getting out there things start getting better.. Social media is a wonderful thing 🐾 Awareness is the key.

Jun 17Reply

artisticflow05 MEEEEEE!!! This is Me as of 1998! I have several EDS posts grouped together on my page.

Jun 20Reply

thatbombyogamom Love this! EDS vascular and hypermobile here. Glad to have someone to understands but I truly feel for your pain. Not many understand!

Jun 27Reply

magpie_memories 🦓 ❤️ Stay strong... Be patient... Rest often.😊🦓

Nov 21Reply

kabroder One of my really good friends has EDS! 🦓 It’s crazy to see and hear about some of the things she goes through. Glad you were able to get a diagnosis and find a good doctor. Stay strong! 💪🏻 ❤️

Sep 18Reply

frankiemom @ambentzen 😢🙏💪❤🐚🌺

Nov 22Reply

ghsmermaid I think I have lost my mind! I can't find Friday's Payday share group! If you're running the group tomorrow, could you possibly sign me up and send the listing to me in a bundle please? Maybe I accidentally unliked it? idk!

Jan 08Reply

ambentzen @ghsmermaid I just signed you up and tagged you on the listing.

Jan 08Reply

ghsmermaid @ambentzen Thanks so much! I'm fried! zzzzzzz Catch ya Friday!

Jan 08Reply

ambentzen @ghsmermaid 😊💜

Jan 08Reply

avantbetty Angel, I just happened upon your closet & started reading. I have fibromyalgia and migraines. Now I was recently diagnosed with Myasthenia Gravis, which began with the muscles in my eyes causing double vision and now is spreading to other muscles. “Invisible” diseases are so hard to deal with! I wish you the best!

Jun 21Reply

armoire1chic I just came across this & am sorry to know you suffer like this & that this is a thing! Some things that can help are: Bromelain for inflammation (pineapple anything or the supplement), Peanuts for healing connective tissues quickly, and Walnuts for mental function/stability, healing, and for its Arginine.

Oct 31Reply

ambentzen @armoire1chic thank you so much! I appreciate it. I eat a whole food plant based diet and since I’ve switched it’s helped. I love pineapple! I eat lots of it I had no idea. 💜

Oct 31Reply

armoire1chic Raw onions also are a great tissue healer.

Oct 31Reply

armoire1chic @ambentzen You’re welcome!

Nov 01Reply