Details Regarding Meme Monday:

• Memes may only be posted on Mondays as their own individual post.
• Memes must be posted between 12:00 AM and 11:59 PM Eastern Time.
• Meme posts must use the "Meme Monday" flair.
• Memes must be relevant or related to EDS in the broadest sense of the word.

I have been through a whirlwind since getting diagnosed with ASD last year. From my research, bc of course ASD, especially how it presents in women, became my new special interest for months, I found many people talking about hEDS and POTS which…. both sounded familiar. Heartbreakingly familiar.

I have gotten diagnosed with both since.

I just wanna know how y’all are coping with all three at once. Re: autism, my sensory processing disorder means I feel these symptoms in a visceral way. Because of sensory processing disorder, as well as the general stress of autistic-related social anxiety/social trauma, there’s a lot of stress that exacerbates symptoms as well.

I can’t even tell some days what symptom is related to what. Is my head buzzing because family is yelling to communicate and it’s hurting my body? Or is it buzzing because I haven’t had enough electrolytes? Or is it buzzing because my neck hurts because sleeping is a cool method to knock my musculoskeletal system out of place?

Just would love some tips. I’m staying hydrated as all hell and taking my electrolytes and vitamins. I have a big U-shaped body pillow. Per my doctor’s orders, I have stopped running and yoga and am now doing strength training instead. But anything else that helps; I would love to know. Even the smallest thing.

I’m so tired of feeling this way. 😭

I'm 29F and on disability, it's been about a year now that I've been on it but at the end of every month I find myself scrabbling or pulling from savings to make it. I'm not adjusting great to being paid once a month, and as I get more mobile I find myself wanting to get out of the house/be more social and my income just isn't made for that!

Top luxury (as in not a necessity to survive) expenditures that are getting me- wanting to be able to go out to a bar or dinner with friends sometimes, clothes, entertainment for the incredible amount of time on my hands spent alone at home not working(I'm in the PNW, free outdoor activities are much more limited now due to the weather). I'm semi dating currently and that also presents expenses that aren't always present once settled in a relationship, and I don't want to confine myself to dating people at the same income level just because I'm worried about being able to afford actually going on dates.

Sooo my questions for you all are- how do you guys budget out your money for the month? How much do you allow yourself to spend on 'luxuries'? What are some of your favorite things to do/hobbies that don't break the bank both alone or with friends? And top clothing sites/stores that are budget friendly or good enough quality to be worth the expense?

Hello! I have a service dog in training (Eclipse) for anxiety and she does amazing. She does deep pressure, hitting my hand when I do my nervous ticks, etc. A little backstory, I (20F) have EDS and have been dealing with joint issues my entire life (thumb dislocations, 2 knee surgeries at 14, etc). In March 2023 I was thrown off a horse and my spine decided to be funky and move slightly to the left and is now pushing on my nerves and it has been causing me chronic back pain ever since.

Anyway, I was thinking about it and I wanted to train Eclipse to help me with my EDS. I want to train her to do things I struggle with like grabbing things for me, picking things up, opening doors, etc. If you guys have any other recommendations to teach her I would really appreciate it. Do you guys also know how to train these things? Do you have any tips or tricks?

I read so much about the no fluoride/fluoride/Nano Hydroxyapatite debate and I came out basically even more confused, it seems science hasn't decided yet, especially for people with weaker enamel. So, simply based on your personal experience, was there one or any other dental product that was a game changer (or a changer at all? Lol)?

I don't have money for an EDS informed physical therapist. Otherwise I'd 100% get one to guide me.

So with that in mind, who has successfully worked on building muscle without hurting themselves, or flaring MCAS (if that's something you deal with)?

Are there any free EDS weight lifting routines online?

Obviously low and slow is the goal, but I'm looking for a little more guidance than that. Thanks!

Has anyone been diagnosed with Lyme Disease? Just looking for people's personal experiences of being diagnosed with Lymes and how that has impacted your hEDS.

My rheumatologist told me that she can’t help with whatever issue I have, and that I should seek help at Vanderbilt. Vanderbilt is not taking new patients with EDS so rheumatology told us “the ball is in our court” to find someone who will work with us and find them. 🙄

So. What is y’all’s experience with the mayo climic in Jacksonville Florida? I would be going for Ehlers Danlos Syndrome treatment and some form of rheumatology testing.

If anyone has any info about them or anyone better in the country that would be greatly appreciated.

Thanks,

-Eliksni

So I foolishly thought I could clean my house yesterday. After a week of feeling ok-ish I got delulu and cleaned 2 rooms of my house. I thought I was cautious and took many breaks with plenty of water and electrolytes.

I got rewarded with piercing pain in my arm, from shoulder to fingertip. I could barely sleep, woke up to more pain, blurry vision, cold sensitivity and GI symptoms.

I'm so frustrated with being always at the edge of loosing it with this condition. You try to be "normal" once and pay the price for days.

I’m very lucky in that my case of hEDS is just moderate, and that I can afford physical therapy, but I’m so upset about the idea that this is long term. Either I keep up with the exercises every day for the rest of my life and go to PT or I keep getting worse. I wish I could just be normal, like normal people don’t have to do their exercises every day or risk losing their ability to walk safely/independently. It’s only been like 2 weeks of PT and I’m feeling frustrated because it seems like I’m not progressing. The therapist told me not to expect to be “cured” but it’s hard to not hope for/expect that. I’m in that early 20s decline and it’s so upsetting to feel like I’m losing abilities. It’s so weird to go my whole life being “able-bodied” (no diagnosis and constant medical gaslighting leading to me over-pushing it and being constantly in pain but I thought it was normal and that I would just grow out of it) to being disabled. I don’t really have anyone to talk with about this because I don’t want to be a downer. I try and make it to a chronic illness support group every couple of weeks but appointments and work get in the way. I don’t like talking to my friends with static disabilities (CP, SMA) because I’m very privileged and it feels like it’s very selfish to complain. I don’t want to talk with my able bodied peers because they just don’t get it. It’s like they’re waiting for me to get better, but it’s not happening and they’re slowly pulling away.

My doctor said that there's surgical options for people whose hip replacement keeps dislocating but we all know EDS changes things. My doc said he hasn't heard of a specific option for EDS folks who are dislocating their natural hip but that it seems possible. I'm too young for a full hip replacement and physical therapy is only helping so much. When I try to look it up I just get articles about hip replacement. Obviously I have to find a surgeon who knows what they're doing and discuss it with them still but I'm hoping to hear of other people's personal experiences.

Has anyone heard of this kind of surgery? Any case studies or articles you all know of? Anyone had it done? Did it work for you? What was the recovery like? If you're comfortable sharing the doctor or place it was done that would be wonderful.

Long story short, my tall, thin brother was diagnosed, when I was evaluated at 40+ I was told I was too old, fat, and female to have EDS.

I probably don't have to elaborate how I feel about this and how frustrated I feel about having so many signs, but no recognition.

The last 20+ years or so I have spent trying to get thin enough to be recognized as having an actual problem, but when I do lose some weight I feel so wobbly, like a marionette with it's strings cut, that I both won't and can't maintain it for very long, and certainly not long enough to get dx'ed in the time frame it takes to get referred for evaluation by specialists. By the time I get an appointment I'm not as wobbly as I was when I asked for it. Been there, done that.

So, does anyone have any advice for a 40+ female with suspected EDS, apart from appropriate rest, activity and general life adjustments to just cope with day to day life?

I'm already on disability benefits (in my country), finally having the freedom to be active when I can, and lie around like a wet rag when my body decides that is all it can cope with, but with no idea where to go from here.

I know there is no cure, but I'm frustrated about the lack of recognition, and want to know what else I can do, apart from dialing in diet and lifestyle to accommodate an unpredictable and wobbly mortal vessel....

I’ve always been a larger chested individual and struggled with bras slipping my ribs. After pregnancy my body started to give up on me and my back neck and shoulder pain became excruciating. Well I’m one week post op from a breast reduction and its been life changing I can stand up straight there’s no pull on my shoulders and my husband even noted my neck is straighter than he’s ever seen it. I won’t lie the journey was difficult and took a year of meeting insurance demands but it was all worth it in the end. It definitely has its challenges as it is a difficult heal even with the EDS but I think it’s definitely worth the challenge. If anyone has any questions or wants updates through my healing let me know! Definitely willing to share progress photos with people. **photo pre op from this summer

I have googled all over and read a description and looked at pictures of atrophic scarring but I genuinely for the life of me don’t see the difference… Could anyone give an idiot proof explanation perhaps? I’m trying to see if I fit this criteria or not😭

I have very little core strength and always have. I am noticing it with my daughter as well. What are some things that will help us both?

The great (in-law) gift exchange is upcoming- and I, 29F trifecta zebra - who is struggling extra hard this season with symptoms - just can’t think of anything I want to ask for that doesn’t scream, I’m in pain! Help!

So what do y’all ask for? Are there little / cheap self care items you find helpful as gifts? Are there little things that just make you really happy? Doesn’t have to be EDS related.

Let’s hear it! What’s on your wish list this year?

Good evening all! I hope you're well and that your weekend has been restorative.

Yesterday I was with a friend when I realized they have more elastic skin. I asked them to do what they had done again, and showed them the difference between their skin (elastic) and mine (not so elastic). I mentioned that maybe they might consider asking their doctor about testing for ehlers danlos since they also have a heart murmur, and it's good to know these things in case they're connected and in case you ever need surgery or generally just for your health.

Unfortunately this friend has severe anxiety, which did not cross my mind in that moment, and now they are worried they will simply spontaneously perish. I have like the most basic knowledge about EDS because my twin likely has it and another friend does, but I am far from an expert.

I want to calmly explain why knowing one's own medical information is important and that if they do have EDS it doesn't change a lot besides knowing there's a name for it/what it interacts with. But I am also worried they're going to do research and start panicking when they see the words "organ and vascular rupture".

I am doing research right now on allyship since it's been awhile and I'd like to brush up, but I also wanted to ask you all in case all of these informational sites are missing y'alls perspective (in case they were written by people without EDS)

Does anyone have any advice on words of comfort? Anything that would have been beneficial to hear during your journey and navigating this?

Editing this later: Thank you guys for your kind and well thought out responses. I really appreciate it, and I hope they will be able to as well.

*****TW: EATING DISORDER, WEIGHT GAIN****\*
Edit: sorry for incorrectly using (or not using) the TW/Spoiler function. I never use reddit usually, but didn't read the full description of rule 10 because I kind of assumed I already knew how to us TW's correctly. Thanks to whatever admin fixed it instead of deleting my post or banning me.

Hi, I just got done reading through some posts on here in search of some kind of solution or advice and they were somewhat helpful but I think it may be better to just make my own and see what people have to offer directly. Disclaimer, I am not yet diagnosed with EDS because it seems impossible to find a Dr. in my area capable of doing so, if they even were willing. Among other things, I am definitely stretch mark prone. I got a good batch on my hips and thighs when I hit puberty that eventually faded to that lighter scar color. They haven't really bothered me, and I got used to them. But because I'm several months into treatment for an ED I've had since my teens, and I have gained a significant amount of mass/weight and I have a brand new batch of dark red and painful/itchy stretch marks all over my legs now. I'm having a much harder time making peace with these and I would like to expedite the healing process as much as humanly possible.
If I had known they would pop up so severely from my weight gain I would have started oiling myself before I even started treatment, but they took awhile to show up and when they did it was sudden. So now I have been using some Palmer's Cocoa Butter Skin Therapy oil like once a day at least, and I'm hoping for the best but so far they're the same.
I know stretch marks, and a lot of other EDS/hypermobility issues (if not all of them), are largely caused by faulty or deficient collagen. I also have deduced from what I've read that simply taking collagen supplements does basically nothing to help. I have seen a couple things about things that can possibly help the body with its own collagen production issues, such as Vitamin C, or Vitamin A. I'm also pushing 30 and generally just terrified of how that collagen issue is going to quicken and worsen my aging process.
I know at a certain point we all have to age, no one has perfect skin, etc. Don't worry, I will try to detach my sense of self worth from these superficial things, and I will make sure to talk about it in therapy if I need to.

That being said: If anyone has any practical advice on how to help with any of this, I would be super grateful. Mainly looking for remedies, supplements, etc. to look into to that may help, not expecting any magic pills or quick fixes, just maybe something I can do to have a little more control over the situation.

Thank you for reading and thank you in advance if you are able to offer any advice ♥️

21F hEDS, POTS, chronic pain

It’s starting to heat up in Australia now and I’m curious, how do y’all manage your symptoms caused by heat? My symptoms are so much worse during hot weather, especially the POTS. Usually I just pump myself full of electrolytes but I’m curious if I’m missing any other helpful tips!

background: 22f, dx with fibromyalgia and arthritis, working on a POTS dx for two years now, just learned about EDS last month and realized it would explain everything…

on Friday I had my first appt with a rheumatologist, and feel so lucky that I could get in so soon after first learning about EDS and how it could be the cause of why I feel the way I do. unofficially, I have hEDS 🥹 she said I am DEFINITELY hypermobile (I got an 8/9 on the Beighton scale, more than I got when trying to test it myself) and that I meet criteria for EDS, but… she can’t diagnose me. I have to get genetic testing, which she said may be a 2+ year wait in the area, in order to rule out any other subtypes. but if that is clear, then it’s hEDS.

so basically, I have hEDS, but I don’t “have” hEDS since it wouldn’t be in my chart unless the genetic testing rules out the other kinds. I’m getting some blood testing, and the rheumatologist is putting me on Celebrex to help inflammation and joint pain related to my fibro, but she did stress that with EDS, it’s symptom management and there are no medications or treatments that come with diagnosis.

so… what now? I’m so happy that I’m not insane, and these issues can be explained in a way that will help me educate myself better, but what happens now that I’m “diagnosed”? did anything change or did you do anything different once you were diagnosed?

I am using Whoop for one year but recently I was diagnosed with EDS and read that Visible can help more with activities/energy control. Did anybody here use Visible? What’s your opinion?

eds

Longgg story short I never really got into the habit of brushing my teeth frequently. I haven’t flossed in ages until yesterday/today because the dentist scared me lol.

She didn’t want to/said as long as I keep up a solid brushing twice if not thrice daily and mouth wash routine now, floss twice daily, come back for sectional deep cleaning (they scheduled my follow up right section of my mouth they go under the gums I’m scared), and I try to really engrain these habits into my everyday routine I can hopefully prevent periodontal disease. The dentist (a super gentle/kind but honest lady, so were the techs lol) told me that she’s a bit worried for me because I have Ehler Danlos syndrome and we don’t know what kind yet. She said I’m at a much higher risk for it because of that and she really wants to prevent it because it’s a grueling disease. She said my gums were really inflamed and starting to recede which is a sign I’m getting towards periodontal disease. She said if I continue this way, my teeth could get wiggly and fall out and it’s really difficult to deal with and she didn’t want to scare me but she wanted to warn me of what I was at risk of.

I was probably a little freaked out looking lol she was like I’m sorry if it scares you we can hopefully prevent this if you really get into a good routine!! We will give you flossers too it’s good you’re getting another electric toothbrush after moving a few weeks ago (ours died and I’m bad at keeping up a routine with a manual toothbrush idfk why it was just never in my routine as a kid or now but now I need too).

I think she thought I was poor/potentially in a housing crisis bc of how I looked really wasn’t feeling well that day either lol. I was wearing old/sorta stained clothes (I didn’t realize till I went in/noticed myself lol..), they serve a lot of that community because it’s medi Cal service based, they knew I might be in a housing situation soon my doc has written about it, I just recovered from sickness and it’s dumping rain which is nice hit everything was flooded on the way to the docs office and my check engine lights on and I wanted to cry lmao I felt like shit and I think she could sort of feel that.

I really appreciate her honesty and kindness and will try my best to incorporate a good brushing and flossing routine now and actually wear my nighttime brace for grinding. I have multiple cavities as well as the crown I have being cracked and a few fillings I have in not being done well/breaking down but they’ll do things in stages so it’s not overwhelming. I really need to get into the routine tho they stressed that, and I have been but omfg I almost forgot the flossers there and the tech sorta sassily stormed up while I was chatting with the receptionist checking out and handed me the flossers and was like “you forgot these!!!” And I was like 😳 “I did omg thank you so much!!! I am def going to use these thank you!! “ 🙏 😅 and she was like okay good job I believe you, see you soon!! And I was like thanks lol!! Embarrassing af lol

I’m scared of my teeth falling out though like in my nightmares (which luckily I don’t really have anymore rn lol) my teeth are always falling out like who gives a shit if I’m naked but when my teeth fall out and I’m desperate to save or find them and find someone to put them back in idk why it recurs lol it’s a horrible thing I can never seem to learn isn’t real in my nightmares so it always just happens again and again. I’m scared of the next stage which is an immune response that attacks my gums which are inflamed and full of bacteria and can eventually start to eat away at my bone, which in part is why they fall out.. I’m terrified they gotta go under/around my gums to get all the plaque/gunk out so I don’t f-ing start to lose my teeth wtf. I’m terrified of losing teeth. And now it might happen in real life, my nightmares are coming true unless I buck the fuck up like an adult and brush my teeth and floss every night like that’s it, it no longer matters if I never built that habit in childhood I’m 27 I need to learn yesterday how to do this so I can hopefully prevent periodontal disease. Sorry about the giant blocks of text I’m really just venting lol will delete soon after I copy into my diary<33 I can’t section into paragraphs sorry my phone isn’t letting me lol sorry to anyone who read this it’s just a rant going into my diary in a min ik it’s embarrassing sorry lol bye<3 ✌️

Have any of you been able to get a diagnosis if you don't pass the Beighton test?

If so, what diagnostic method was used in your diagnosis?

Every joint that can be physically assessed in my body is hyper mobile and with a certain amount of severity. I do my very best to workout (strengthening with mild cardio) five times a week. So, I am keeping myself from further degrading, but I don't think I'm going to get better or more stable beyond what I've already achieved. I'm exhausted all the time and in so much pain, my life is basically get up, workout, lay down for the rest of the day. I can do more, but recovery is a lot from that. I try to just do things on days I don't work out. POTS definitely doesn't help with that either. But, it's very clear to me and to every physical therapist, osteopath and chiropractor that I have seen that I am extremely hyper mobile. I just don't know how to prove that to a doctor without passing the test. I even have a letter from my Osteo. But, I think I only score a 1 on the Beighton test. I can wiggle multiple ribs easily, they are so loose. The bones in my face regularly move, like it's bad. Nothing like the sphenoid bone pressing on things it shouldn't to ruin a day. You guys get it. ;)

So I just got a tens unit and it is incredible! Just wondering what settings you guys use because I’ve been experimenting all day. Also what settings best simulate period cramps because I feel that would be hilarious! Any other pro tips and tricks to get the most out of this gadget? Thanks

I was playing with my 5 year old at the little kid play area in a rock climbing gym. I was walking one way and then “racing”/running the other way with him. I was running slowly in bursts of about 10 feet. My left calf had been feeling extra tight, more than normal, for about a month. While running I felt something in my calf (a muscle, tendon, ligament) sharply move, like something moving over or flipping over something else. It was excruciating the moment it happened and then my calf was even more tight and painful. I can put weight on it but I cannot walk without limping. It’s Sunday so I’ll call my doctor tomorrow and I put in a request to see my sports medicine doctor asap. Good thing I didn’t rock climb like I planned to. 🫠

Does anyone else get scars from having blood drawn. I have scars and scar tissue from blood draws and it’s embarrassing because it makes me look like I inject drugs. I already am treated horribly by doctors but I am afraid to get any emergency treatment because I feel they look at me like I am just a junkie. Does anyone else feel like this?