Ehlers Danlos Syndrome

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The original was posted on /r/ehlersdanlos by /u/hooooofhguok on 2023-10-07 02:16:22.

Hi! I have recently been diagnosed with EDS skin and joints. I just turned 21, and I have lines under my eyes and on my forehead like wrinkles. And some sagging around my nose it seems. I thought EDS was to at least make the skin aging process better.. can anyone relate? I use tretinol cream for acne and read that can help with anti wrinkles. Is this normal with EDS? :( I feel really sad and self conscious about it. It might just be stress related because I’ve recently also been through 2 major surgeries and have had my life hijacked by chronic pain for the past 5 years. And also I have a lot of co-morbid issues like Klippel feil syndrome so I’m in a lot of pain and stress all the time. But I also want to age well but I can’t really help the stress. Additional question- has anyone here gotten plastic surgery? Is that an option(in general) with EDS?

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The original was posted on /r/ehlersdanlos by /u/RadiantCookie4438 on 2023-10-06 18:54:17.

I dont think i am the only one who cannot regulate their body temperature whatsoever. With Fall rapidly aproaching it gets colder and i cannot get warm for the life of me and my whole body gets so stiff and crampy, so i get in a Hot shower until i almost pass out (thanks to pots).

If i do anything for any Part of my body or any illness i have another Part starting to acting up.

Body, i just cant with you on some days..

Edit for typos 🙄

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The original was posted on /r/ehlersdanlos by /u/actualspacepirate on 2023-10-06 18:50:23.

i told my bf about this and he thought i was insane so i thought i’d ask here lol. when i stand after i’ve been sitting a while (after long car rides especially) i can hear my lower back make this like hollow popping noise and i can feel my lower back/pelvis??? pop back into place. anyone else?

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The original was posted on /r/ehlersdanlos by /u/Strawberrytracks on 2023-10-06 15:41:43.

Hey y'all! I've been hanging out with my friends a lot more recently, which is awesome! But in spending more time with them, the odd behavior of my joints has become more noticeable.

I've known one of my friends since kindergarten (I'm 26 now), so she's not really surprised at all about it, just occasionally concerned when I injure myself. I met my other friend in college and she is only now realizing how severely my joints are effected. In addition to the joint hypermobility, I also have an elbow deformity (cubitus valgus) that is apparent whenever I hold my arm out.

I understand being creeped out by "party tricks", but she's reacted badly to even just pictures of me where I was not intentionally "showing off". She's never been outright mean about it, like calling it "gross" or anything like that, but she does scream and cover her eyes/look away. I don't want to be harsh with her as I can tell that she truly finds it to be disturbing, but I still find it hurtful to be treated like body horror. We're both autistic, so I'm not sure if maybe she just doesn't realize that that kind of reaction could be perceived as hurtful.

Have any of you dealt with this? Do you have any advice as to how to deal with it delicately?

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The original was posted on /r/ehlersdanlos by /u/shesindenial on 2023-10-05 23:37:08.

maybe i actually am making things up or all of my symptoms are disconnected, but i don’t know, and now i’m confused! i went back to my allergist and told her that i am having new allergic reactions to different foods (like avocado even though i’ve NEVER had a reaction to it) and have had horrible nausea, vomiting, and motion sickness (which i’ve had my entire life but it’s getting worse). i have other symptoms like random bruising, atrophic scarring, hyper mobility, allergies that aren’t really allergies, and even large eyes but small ears but my allergist doesn’t think i have it. During the criteria diagnostics she would say that i kind of had something but would mark it as a no (for example, she said i have velvety soft skin but not unusually velvety soft), so the diagnostic came back as inconclusive. i got a referral but i don’t know, now i think that i have these GI, skin, and allergy symptoms that are completely disconnected. it’s just weird that both me, my mother, and my brother have all of these symptoms but my doctor says it’s likely i don’t have it. where do i go from here?

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The original was posted on /r/ehlersdanlos by /u/dznyadct91 on 2023-10-05 18:58:44.

For as long as I can remember I have been nauseous. So unbelievably nauseous. As I got older, new symptoms started showing up. Dizziness, exhaustion, ear ringing, hot all the time, sweating profusely, migraines, diarrhea… the symptoms have been endless. Doctor after doctor has told me it’s because of the CPTSD from a traumatic childhood. It’s all in my head. I believed I was crazy. I stopped going to doctors until about 6 months ago. My new primary care doctor finally referred me to an allergist and today I was diagnosed with Ehler’s Danlos syndrome and Mast Cell Activation Syndrome. I know I should probably be kinda crushed… but honestly, I just need to sit and relish in the fact that I’m not crazy! I actually have an illness! I’m so grateful there is a community of people who have been through this. Tell me anything you think I should know. I want to hear the good, the bad, and everything in between

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The original was posted on /r/ehlersdanlos by /u/Fun-Savings2349 on 2023-10-05 13:10:44.

I think it's so funny that a lot of the physically well people we've had problems with regarding eds whether it's friends, family, or partners will be so quick to dismiss us or ignore our reactions to our symptoms, but expect sympathy when they get a viral illness or a cold... it's just odd how they forget they only have to experience those mildly uncomfortable symptoms for at most a week, but it's everyday for us. Just imagine how dramatic the people in your life would be if they had even HALF the eds symptom list.

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The original was posted on /r/ehlersdanlos by /u/monateru on 2023-10-05 05:59:26.

Been told all your life you complain too much? No such thing. Use this as a space to complain about your latest oopsie. I fell super hard and splattered sushi all over my new apartment. Now my entire spine hurts and I have no sushi. Looking back it was kinda funny how I threw sushi all over the place... but I'm still upset >:( see I made an angry face

Your turn to complain as seriously or unseriously as you would like:

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The original was posted on /r/ehlersdanlos by /u/candelaintampa on 2023-10-05 05:50:17.

TW: MENTION OF SEXUAL ASSAULT

I finally got real with my mom about my health issues Monday. She guilt tripped me for always shutting her out, so I went out of my comfort zone and really opened up. She responded by leaning into her denial, telling me I need to look more into what's going on, I can't just accept the health issues I'm having, etc., etc. She refuses to accept when I say that it's not just an issue that can be magically fixed.

Today I hurt myself SI joint. I was having a panic attack and pacing more than I should have. My adrenal and sex hormones have been allllll over the place, so it's been hard to manage my emotions. My kids are having a sleepover with her, and I appreciate her help. But I called her to update her and she told me she had been on the phone with my sister because I've been having a lot of "incidents" lately. It was a weird comment.

I sent her a response with a screenshot of common EDS issues, and a message that said, "in case you want to understand more about hEDS and my incidents❤️" of course, she's not going to read it, but I already had to explain my condition to the triage nurse at the ER, and didn't care to do it again.

I'm mostly annoyed because:

1. Why is she talking to my sister about my health issues and not me if she is confused? My sister has no health issues and rarely talks to me, so what input does she have?
2. She doesn't take the time to even understand my health issues before making judgments about them.
3. Mostly, because she acts like I'm just throwing up my hands and giving up because I'm trying to get to a healthy state of acceptance that I am just not going to have the same life as every other 29 year old.

It's already agonizing that I can't be the mother I want to my little girls because I'm always exhausted and in pain. I'm grieving what I thought my life would be like at this age every day. I cry about it almost daily. I thought the pain, the injuries, the exhaustion was just accident-related, then pregnancy-related, then post-partum related, then thyroid-related, and kept thinking that there was some end point where I would magically feel better. But the okay feelings have been few and far between recently and I feel so alone with all of this.

I'm not throwing up my hands and giving up. I see pain mgt, an integrative med doctor, and Dr. Trevino (a local EDS specialist). I've been in therapy since April 2022 and to an IOP for severe depression (5 hours of therapy, 5x/week.) I tried the Muldowney method in PT (but stopped PT because I was sexually assaulted during a massage last year, so that's a very triggering setting). I've ready books upon books of how to manage my health and my mindset. Like IM REALLY FUCKING TRYING. I wish I could communicate this to my mom in a way where she would listen. I wish I had the kind of mom who would listen. Joke is on me for thinking this time, being vulnerable with her would be different.

Okay, if you're still here, thank you for coming to my pity party.

Goodnight, Reddit.

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The original was posted on /r/ehlersdanlos by /u/y2k_luver24 on 2023-10-05 02:54:52.

I get rashes on my face after use of any skincare product—CeraVe included: cleansers, lotions, sunscreens (physical or chemical), etc. It doesn’t happen after the first use typically, but after a few days of application. The skin on mostly my cheeks becomes red and slightly puffy, as well as a little hot to the touch. I got patch testing for allergies and I only reacted to one ingredient, which isn’t even in most of the products I have tried in the past. I was wondering if this is something you guys have too because of our skin sensitivity from EDS. I considered it was possibly a histamine reaction, but I don’t really have many symptoms at all that would signify me having MCAS. Of course, I’m consulting my doctor, but wondering if anyone has had similar experiences.

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The original was posted on /r/ehlersdanlos by /u/autumnskylar on 2023-10-04 19:16:24.

It seems the longer I've been diagnosed with EDS, the more comorbidities rear their ugly heads, and the less my doctors seem to care. Doctors that once bent over backwards for me now just don't seem to want to figure out new conditions. Currently dealing with an enlarged liver that my GI doesn't seem to care about despite my symptoms. This is the sane guy who has rushed me to the ER and met me there to advocate for me to get treatment for severe impaction. I have the same issue with my GYN. He said he'd only prescribe my my birthcontrol from here on out and wouldn't do any more testing for my pain. Again, once a doctor that really cared. Do you guys experience this too? I'm having a harder time trusting doctors now because they always give up on trying. How long will it take to find doctors that give a damn?

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The original was posted on /r/ehlersdanlos by /u/Kettuni on 2023-10-04 15:52:15.

I have also noticed that she wears oversized clothing to hide her real body shape.

As for myself, I can relate to her very much. When I got finally diagnosed with hEDS my doctor even pointed out some of my facial features that he said were common with people with hEDS. One of them was my eyelids. Since then my eyelids have changed to triple eyelids and sometimes I get very self consious about them because I’m still a young person and other women my age don’t have them.

Feel free to open up about your body image issues here if you feel like it.

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The original was posted on /r/ehlersdanlos by /u/PandoraMikari on 2023-10-04 06:24:55.

I recently went to a concert in another state (Babymetal and Dethklok in SLC) and for the first time took my walker and used the ADA seating the entire time instead of asking for it when I couldn't stand any more. Holy shit I actually enjoyed it so much and could walk the next day with a normal amount of soreness!!!

I dislike using my walker but it made standing in a huge merch like possible. I could sit and push myself seated as needed and the ADA seating meant I could focus on enjoying myself and not figuring out how to keep shifting my weight so I wouldn't hurt.

I would highly suggest taking walking aids to concerts and getting ADA seating.

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The original was posted on /r/ehlersdanlos by /u/PooKieBooglue on 2023-10-04 01:17:33.

I have had signs of EDS since birth, all through childhood, my teens, 20’s and then 30’s. I’m now 39 years old.

I learned about EDS in 2020 after a mild covid infection had me develop Orthostatic Hypotension (Dysautonomia), MCAS, and ME/CFS. And in my push for answers, went on to find Chiari Malformation & Atlantoaxial Instability.

I first approached my PCP about exploring EDS in December 2020. In 2021 I saw a Rheumatologist whose fellow did not run through criteria correctly, resulting in very mixed confusing notes in my file. (Example, the fellow didn’t think I was hypermobile and that was on the notes, then the Rheumatologist came in and noted severe hypermobility.) He also argued that the fat balls on my feet didn’t count since they aren’t visible without pressure.

After a 6 month wait, I know that’s not too bad, I drove out of town to see a (grumpy) geneticist who diagnosed HSD, did not recommend testing because we may get variants of unknown significance… which seemed extremely odd to me. I have multiple cig paper scars she didn’t count, and felt soft skin shouldn’t be included because it’s too subjective. Other non-sense I thankfully forget, but I was livid.

I honestly mostly gave up on trying to get it officially documented because I got lucky and I found a rheumatologist who was willing to use the EDS diagnoses code and treat body pain, MCAS & Dysautonomia. I thought I may just leave it at that until a non-zebra friend recommended his new “precision medicine” doctor in our health system.

It just so happened they had experience with hEDS and their geneticist ran through the criteria. She gave me 6/9 beighton score, 7/12 section 2, and clearing meeting section 3. We tested for other genetic connective tissue diseases and the only thing that came back was a variant of unknown significance for Sticklers Type 2. I can recheck it in the future, but I’m not super concerned about it… though I will keep a better eye on my sight and hearing knowing there’s so much overlap.

So today, I finally got my official diagnosis and it feels really good!!!! Diagnosis can be a privilege that I really did not think I would get and I don’t take it lightly.

It is now documented in my record which is extremely important with any potential surgery (my jaw was dislocated when they took out my wisdom teeth as a teen.) All of my doctors now have an easily accessible EDS guide in my file that lists common comorbidies and treatments!!! This will also get easier diagnosis for my son and cousins who also appear to be affected.

Just wanted to share the win!!!!

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The original was posted on /r/ehlersdanlos by /u/Aggressive-Ranger811 on 2023-10-03 22:28:33.

I've seen a lot of videos and articles about it but I thought it could be interesting if we did a EDS edition because are lives are so different than those without EDS.

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The original was posted on /r/ehlersdanlos by /u/LostClaws on 2023-10-03 17:25:48.

My example that made me think of the question: Right now I have to have the fan in my home office on a much higher speed setting than I prefer in terms of temperature because of some pet accidents this week.. it smells otherwise, despite shampooing multiple times.

I don’t necessarily mind being cold, I actually prefer it to being hot. It’s a lot easier for me to disregard… which gets me in trouble and leads me to one of the things I have to be extra careful about: the longer I’m in the cold, the higher my muscle tension becomes, with spasms following shortly after. Perfect storm for subluxing joints.

I disregarded my body telling me it was cold, so now I’m laid up on the floor on the foam roller.

What seemingly innocuous things do you have to watch out for to keep your day running smoothly?

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The original was posted on /r/ehlersdanlos by /u/dirtybugboy on 2023-10-03 11:57:39.

My GP referred me to a rheumatologist for suspected hEDS and POTS. The rheumatologist went through to screening (bending my body in unnatural ways) and essentially said "yeah you're hypermobile, physical therapy will fix everything" . I asked about testing because my potential EDS and POTS is pretty debilitating and I'm working on getting disability and the diagnosis would help with making a case and she said the center won't test because it's expensive and "not necessary". Spoiler alert: physical therapy didn't help (I know that it will improve things long term, but right now I am not functioning) and when I came for a follow up she just told me to take more pain killers. Has anyone else experienced this? It's the only rheumatologist in the area that takes my insurance and she swears on her life that all her other hypermobile patients were "fixed" after physical therapy. I feel like she's seriously minimizing my concerns and doesn't seem educated on EDS

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The original was posted on /r/ehlersdanlos by /u/Available_Cycle_8447 on 2023-10-03 06:08:10.

I’m just curious

How many of you avoid seeking medical care unless it’s a trauma or otherwise urgent situation?

As long as my mcas and regular meds are being filled, I’m starting to wonder what the medical establishment really has to offer me. Besides that, I’m so freakin traumatized by being gaslit for, what I now realize, has been my whole life. I cannot take one more Dr telling me I need a psych eval. I’ve already been there done that they didn’t even read apparently. She said I need tx and mgmt for my physical conditions On top of the Heds and all it’s fun bag of comorbidities, I have immune deficiency long haul and subsequently cfsme. All I hear is you need pain therapy, you need cbt therapy, you need trauma therapy you need physical therapy..and I’m like yo my zombie brain and body barely remember or have energy to carry out my daily functions. Now, on top of trying to get you people to diagnose me with everything that’s wrong, and barely managing to live on my own, you want me to do more than I’m already doing? I just cannot If I figured out most of what’s wrong on my own, can’t I just manage this on my own for the most part? I’m sick of being treated the way I have been treated. Going to drs only seems to make everything worse. It’s not like anyone will pay attention to you unless you’re in a crisis situation in the current medical climate anyways. And every time I do go I’m risking exposure to things that could take me out with not yet treated immune deficiency and recent resistant infections On the same note, I was bullied by a group of my neighbors I thought were nice the other day (bc I didn’t want to go drinking and dancing I’m making everything up and I’m addicted to mmj and I should just ‘snap out of it’) so maybe I’ll just stay indoors forever.

Who’s taken the “I’m a lone and distrusting hermit” approach and felt better for it?

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The original was posted on /r/ehlersdanlos by /u/Hels_helper on 2023-10-03 01:28:32.

I have pots and eds.. so I'm used to doctors saying "I dont' know what's wrong"... but this one issue is really frustrating.

I broke my arm in 2019, my left forearm was snapped in half. I had to have plates and screws on both the ulna and the radius. my bones were super slow to heal, and the surgeon said he didn't know why it took so long to heal.

shortly after getting my cast on, hard solid painful lumps would form over the ends of the plates.. then go away after a few days or weeks.. At first i just assumed it was part of the healing process.. but it kept happening. At one point i was in so much pain, and when my PCP saw the lumps she sent me straight to the er for x-rays, she was sure that the screws were coming lose.. nope, they are right where they should be. ER said I needed to see the surgeon that put them in, cuz they had no idea what was going on and hand only seen that type of reaction when a screw came lose.

Saw the surgeon, he took his own xrays, confirmed everything was in place.. and said "well I've never really seen this happen before, but with how long it took your bones to heal, and all the nerve damage and scar tissue.. i don't recommend removing them, we are likely to cause more problems if we open you back up."

So i left, in pain, no help, no idea.. at least its not constant, I can go months before it swells back up.. and some times its just for a few days.. other times it's for weeks.

When i say it hurts.. IT HURTS.. like in my bones, white hot, pain that sends shocks from my elbow to my wrist. I can barely move my arm or my hand, all the veins in that arm and hand are like sticking out, my hand is read, you can see the pulse on my wrist. It hurts more than when I broke it.

I'm just trying to figure out if this is something that happens to EDS or POTs? The "experts" are clueless.. so I have no clue who else to see or go to for help.

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The original was posted on /r/ehlersdanlos by /u/Tenth_planet4757 on 2023-10-02 18:23:34.

I am sick of GPs. I actually cannot go to another GP for symptom management it's bad for my mental health.

I got discharged from rheumatology after my diagnosis years ago. Should I see if I can go back? Is that normal or do they only do diagnostics?

It's so unfair how you get 15 mins to talk to a GP who won't listen and starts preaching at you. For the two issues I'm currently trying to fix (mystery injury shoulder and chronic lack of sleep) I've been told to take up pilates and to take a shower before bed.

I am going insane and I want to cry.

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The original was posted on /r/ehlersdanlos by /u/Lazy-Bodybuilder4378 on 2023-10-02 21:35:19.

i feel like i have no time to be a full time college student and be chronically ill. if i look after my health i fail out of school and if i focus on school my health declines. how do you do it? how can i not spiral in my health and still keep my grades up? i am in so much pain all of the time and i just feel so overwhelmed.

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The original was posted on /r/ehlersdanlos by /u/ChinchillaBungalow on 2023-10-02 12:30:29.

ETA: HSD is a form of symptomatic hypermobility and not what I'm referring to.

Benign hypermobility is amazing and genuinely interesting, and you can't always assume benign hypermobility off of limited interaction. Hypermobility both benign and harmful are both incredibly large spectrums and assumptions/comparisons help no one.

However, I'm not "just stretchy", people keep saying I'm "just stretchy" and that EDS doesn't come with other symptoms. The assumption/belief that EDS is just being a little bendy is incredibly harmful and reduces access to things like necessary accommodations because people don't think you need to accommodate simple bendiness. Yes, I'm bendy. But I'm also in pain, nauseous, and can't stand for long and would like people to be aware of that being part of my EDS. Others have different symptoms. Symptomatic hypermobility is more than just being bendy.

Or, alternatively, they say I'm not hypermobile at all (even benign hypermobility) because I don't have MCAS?

I'm diagnosed and while that doesn't make me any more "valid" than someone undiagnosed, it makes it even more frustrating that people think they know more than my doctors.

Hypermobility is a symptom of EDS, it isn't all of EDS. I wish more awareness was brought to how EDS can effect people's lives other than "party tricks"

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The original was posted on /r/ehlersdanlos by /u/Jojos_Universe_ on 2023-10-02 05:41:14.

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The original was posted on /r/ehlersdanlos by /u/SignificantPomelo on 2023-10-02 02:13:44.

I (43F) have hEDS (mild but diagnosed) and my hips are some of my wonkiest and most problematic joints. In my late 30s / early 40s, post childbirth, I noticed they often crack, like you might crack a finger or neck. I've also occasionally noticed that kind of "ligament snapping across bone" thing (snapping hip syndrome?). No pain with either of these, thankfully. But the last couple of months, my left hip has felt like it needs to crack but it won't. It hurts like crazy if I try to do the cracking motion - it hurts if I even just let it fall outward. The sensation is on my upper inner thigh, not the outside of the hip. I thought it might go away on its own but it's been months now and it seems like it's getting worse. Thankfully its not causing pain while walking!

Has anyone else had this experience? Did you go to the doctor and get it diagnosed? Was it fixable or was it a "wait it out" kind of thing? I'm reluctant to go to the doctor because I've got so much else going on and they'll probably just go "hEDS 🤷🏼‍♀️" like always. I had some major hip issues 6 years ago so they did x-rays and MRIs and all they saw was minor hip dysplasia, minor bursitis, minor tendinitis - nothing obvious causing the pain I was in (that issue was different than this one.)

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The original was posted on /r/ehlersdanlos by /u/Kriz-tuhl on 2023-10-01 21:30:10.

It comes out of nowhere at times. Extreme exhaustion. No energy. Unrelenting fatigue. I’m also autistic and so overstimulated. I have been pushing myself very hard so I can support me and my kids. I’m divorcing, suddenly working full time and still primary caregiver for my twins. They do virtual public school. My house is a major fixer upper. My hip is hurting more each day. I’m so so so tired. So weak. Today, I just can’t move much.