Ehlers-Danlos Society

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Ehlers-Danlos Society
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Community Voices

advice on healthily loosing weight with an ED, HEDS, PCOS, Depression etc. ??

I am currently quite overweight and I want to get into better shape and loose weight for myself and was told to by my doctors. but that seems almost impossible with all of my illnesses. First of all I have an Eating disorder (not specified, more binge eating) which makes food and body image very complicated and then I have PCOS, hashimoto’s and hypothyroidism which is already hard to loose weight with on top of hypermobile EDS which makes getting active and moving physically very hard and painful and to top it off low energy and motivation with depression. I’m trying to do this to just slightly feel better but I don’t exactly how. How do you stay in shape with these kinds of setbacks? i’m open to any advice! Thank you <3 #BingeEatingDisorder #PolycysticOvarySyndrome #HypothyroidismUnderactiveThyroidDisease #HashimotosThyroiditis #HEDS #hypermobileehlers-DanlosSyndrome(hEDS) #EhlersDanlosSociety #EhlersDanlosSyndrome #Depression

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Community Voices

Missing time from work due to HEDS and pain #EhlersDanlosSociety #EhlersDanlosSyndrome #ChronicPain

I recently received and awarded medical accommodations not only due to my Ehlers-Danlos Hypermobile disability but also Epstein-Barr Syndrome; chronic which has completely compromised my immune system and have had not only Covid twice but most recently walking pneumonia and in the past bronchitis, strep, the flu, the list goes on. I have since receiving the medical accommodations which include leave, missed work including today a total of two times that will no longer count against me as they are protected federally. However what I didn't say in the title is living with my husband. We have not had an official ceremony yet, hopefully planning for it in April next year. I have also decided what I want to do for our honeymoon, universal studios in particular hogwarts and get myself and my husband (I'm officially a Gryffindor and he's a Ravenclaw) our official robes and and get us our own wands. We are also practicing, side note, Wiccans and witches hopefully no one will be offended by that. What we do is mostly praying or lighting candles or incense for our closest friends and family to be safe and have speedy recoveries. Also cleansing and keeping on us a variety of crystals ranging from labradorite to sandstone, which we cleanse via full moon lunar cycles. Sorry, got sidetracked. My husband while supportive and has been my superhero and savior on more than one occasion, even before we were dating, is very temperamental when it comes to my disabilities, pain and especially missing work, especially now that he works in the same location different department as myself. My management team has been behind me since a very wretched and ongoing familial problem started in October which has only added to my PTSD, and they are now even more supportive making sure that I am okay. The general Manger is even rewarming up to me and is an awesome and great guy. But my husband, especially since he waits till the last minute to get out of the bed to get ready and go to work while I'm already halfway dressed and checking emails, is angry and yells at me when an event like this happens. I have officially had to solemnly swear to not miss anymore work unless work sends me home due to illness. I can't use the prescription muscle relaxer because when I crash with it I move around and am in more pain. So I have had to resort to something that hopefully this post won't get taken down for, a THC pen. That and a tramadol are now all that works in getting my pain and muscle spasms under control. Yes I will fully admit that I wad stupid yesterday and was the one to change the oil on our car instead of my husband, with very low ramps holding the car up. So that is the reason I missed today from work and I dislocated my hips yesterday but said to my husband when he relocated them this morning that they had done it in my sleep. Again, my husband has been super supportive and but it is demeaning and hard when he yells at me for missing work. Sorry for the long post. #EhlersDanlosSociety

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Community Voices

Let’s get real about EDS #EhlersDanlosSociety

So let’s get real about our disease. Ehlers Danlos is not just something I have. It’s as much apart of my body as my green eyes and red hair. Formed,born, is living with and will die with it. No cure, no even dream one. So what does this mean for us? My brother and I both were diagnosed at the same time. My family likes to refer to EDS in two groups of patients. Functioning and nonfunctional EDS. My brother despite having the gene scored very low on the beighton score and truly has very little issues. I on the other had have every point and my life has been very affected. I was diagnosed at 19 at hopkins by Dr Levy who I only met once and even though I only met him when he diagnosed me, having him being the person to diagnose it set in motion my ability to get treatment by people who truly are passionate about this disease and know how to deal with us. Because I’m sure I am not the only person to have doctors see my diagnosis and the severity of them and would not treat me . Less then a month after being diagnosed I met Dr Henderson and he has now done two c fusions me as well as treated my seizures . He was a breath of fresh air. He truly has dedicated his life to helping us. Because of him I was able to get in with Dr Francamono. She is extraordinary. If you are able to be seen by her please do it. She is worth the wait,drive , or whatever. She however taught me how to get real about my diagnosis. At 23 she sat my parents and I down and informed us this would be the best I will ever be. No one had really managed my expectations before her saying that. Some people might not have responded well to that but she made truly understand this is degenerative. And she was right. I have been very lucky to have seen these doctors and every one of them is familiar with each other and they are super heroes. The right doctor makes the difference in living with eds and also I truly believe it’s healthy to be honest with ourselves. This isn’t a pity party , it’s a way to keep from having your world shattered. When I had my left SI joint fused I went back to Dr Henderson and his partner Dr Rosenbaum did the surgery. My first appointment Dr Henderson came to the consultation and was simply there for support. I was also informed that it could be six months or six years from now but my right side will fail and I will need to have the surgery on the other side. I’m not anxious about it. As soon as I feel that pain I know I have an option which was successfully done in my left side already. So what am I getting at with this post is two fold… if you have the unfortunate luck to have EDS manage your expectations… be real with yourself for your own sanity and to do whatever you need to get to the doctors that speak EDS

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Community Voices
Community Voices

Newly diagnosed


Hey everyone! i was recently diagnosed with venous thoracic outlet syndrome after struggling with a horrible DVT that has not gone away as well as constant nerve pain, numbess in my face, arm, and hand, and swelling. It has been so scary for me. I will most likely have to get surgery because it is so bad. I also have ehlers danlos syndrome and all of the comorbidities that come with it. I was wondering, for anyone who has both, is it possible that this puts you at risk for more vascular compression disorders? I have so many unexplained health issues and I have been researching other vascular compression disorders and I am really wondering if this is something I should bring up to my vascular doctor (things like MALS and SMAS). What are your thoughts? Do you have more than one? #EhlersDanlosSyndrome #EhlersDanlosSociety #MedianArcuateLigamentSyndrome #smas #MALS #vasculardisorders

Community Voices

A letter to my disabilities

I wrote this as a way to cope with chronic illness at a young age

To my disabilities,
You are the worst thing thats ever happened to me. You make me life a living hell from the moment I wake up to the moment I fall asleep. You don’t give me a break from the pain and it feels like you’re trying to attack whenever you can. You have shaped me into a better me to deal with you and I’m willing to fight you. I dont know why you came to me or what I did to have you around. The medications I’m on feel endless and even with them, you still control everything I do, how I get up from a seat, how I’m constantly shifting to keep from fainting, and constantly putting my body back together. You make me fall apart every day. Most days I’m not willing to put up a fight anymore and want to give up with trying because it feels like you still overpower me daily. It doesn’t seem worth it to try anymore. Sometimes you let me enjoy myself for a couple days but then you make me pay for it worse than normal. It has only gotten harder with you, a simple infection leads to hospital visits. The weakness and fatigue are endless. I just want to feel normal but you’ll never let me. I don’t know a life without pain anymore, I dont know a life without multiple injections and more pills than anyone should be taking just to live somewhat normally. You have made me who I am today and I’m trying to get motivation to fight you and not let you win. You could win easily and make me wheelchair bound at any point, I don’t know what your plans are for the future but I don’t think it’s good, #MastCellActivationDisorder #EhlersDanlosSociety #PosturalOrthostaticTachycardiaSyndrome

Community Voices

Appointment fails

I'm fed up today both with appointment cancellations and myself. The last 2 doctors appointments I made were cancelled and I have to reschedule, and apparently I slept through one that I either forgot or was spontaneous. I just would cry but I don't think I can at the moment. But I feel... disgusted I think. I don't have it in me to keep making the phone calls, and now I've completely missed one. My chronic pain and fatigue sure leave me feeling hopeless and irresponsible. And I'm like a masterpiece of a crumbling body. Take care of one physical problem at a time, and sometimes I don't even get help with that. In the meantime a dozen more physical things crop up or worsen. I just want a gentle hug right now, even if it feels awkward to admit somehow. #EhlersDanlosSociety #SmallFiberNeuropathy #Fibromyalgia

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Community Voices

How does EDS affect your mental health?

<p>How does <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7a00553f33fe991e01" data-name="EDS" title="EDS" target="_blank">EDS</a> affect your <a href=" health" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5800553f33fe98c3a3" data-name="mental health" title="mental health" target="_blank">mental health</a>?</p>
13 people are talking about this
Community Voices

Lately My Ehlers-Danlos has been progressing quite rapidly. As it progresses, I can do less and less for my Children, who are 3,5,6,9, I feel guilt quickly setting in. I feel like I am not doing enough for them. Am I playing with them enough? DO I fall asleep too much when I should be reading with them? Do they get out of the house enough? I cannot help but wonder if I am doing enough when I am so limited by my chronic illness?

Each day I get up and do my best for my family. I try to find new and inventive ways to get done what needs to be done, but still, I feel like I have to sacrifice self-care for the care of my family. Anyone else feel how I feel? Does anyone out there have tips or tricks to help me. I feel like I am failing my family especially my kids.

#Zebra #ChronicPain #EhlersDanlosSociety

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Community Voices


Today is just another day of being too sleepy to contribute to helping anybody. It's just one of those time where life feels like I'm a taker but not a giver. I wish to be able to care for others, however my chronic pain and fatigue leave me hardly able to handle myself and my problems, let alone be able to care for others in any sense. I feel very stuck. I need my pain medication, but considering some of it is to help me sleep, and without it my brain has strange jolts, and other undiagnosed symptoms occur, it also means I struggle to function as well and have even more fatigue. One curse or another, not always a easy choice. I just want to be able to feel a purpose, to gain understanding and confidence in who I am. At time like these, my times of optimism feel like I was just indulging in a illusion of things being better than they really are. #EhlersDanlosSociety #SmallFiberNeuropathy #ChronicPain #ChronicFatigue

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