u/ChewyChickpeas

I just wanted to share this story here because it’s so insanely stupid and just ableist. I went to a small high school, about 300 kids total. We had two floors so, naturally, we also had an elevator. The elevator was only to be used if you were injured and not by people just playing with it. Obviously you can’t tell if someone needs it, but there were a lot of kids who would ride it just for fun.
I was dealing with severe ankle pain and overall joint pain (turned out to be a torn ligament and hEDS) and going up stairs was very hard. I also have POTS. I had permission from the school nurse AND a doctors note stating that I need the elevator.
There were several times where I had an ableist encounter with a teacher, who I NEVER had as my own teacher and barely knew, would stop me and tell me to use the stairs because I “don’t have a doctors note/a valid reason.” Now, keep in mind, at this time there were not other kids at the school who “needed it more than me,” like a wheelchair user for example, so the argument that I’m “taking it from someone who needs it” does not apply. One time she even STOPPED THE DOOR FROM CLOSING so she could open it back up to scold me and try to get me to get out of the elevator to go up the stairs?? I’m not sure why she didn’t remember who I was. I then ended up having surgery over the summer and when I came back in the fall I needed a knee scooter so she let me use the elevator because it was “visible” but as soon as I was off of it she would yell at me again. Don’t you remember me??? I was healing from a surgery??? have an ankle brace AND a doctors note??? It is also NONE of your business whether someone actually needs the elevator or not, especially if I have a doctors note.

I went back for a follow up this morning and the doctor put the temporary (~3 month) plugs in my tear ducts. Has this helped anyone?? He also didn’t really tell me he was going to do this until we had already started the procedure which I’m a little disturbed by because I didn’t get a chance to consent or go over the procedure, but whatever. He said it’s covered by insurance so in that case I don’t really care. Anyway, has anyone seen improvement with this? Does it actually do anything?

Hi. I’m 19 and have had nipple pain for three days now. I realized that where the pain is (below my nipple but still on the areola) is a little red and swollen. My mom said it’s likely a pimple inside my nipple because I have inverted nipples but idk. I feel a hard painful lump there. I doubt it’s breast cancer but I do have a family history of it. I am seeing my gyno in two weeks but I’m not sure that’s soon enough. My mom doesn’t think I need to see urgent care though.

Hi! I am diagnosed with hEDS and also recently got whiplash lol so my neck has been extra sore recently. Driving more than like 30 minutes causes a lot of pain and discomfort because I just bend my neck super weird while driving for some reason. Does anyone have any good neck pillow recommendations specifically for drivers? I need the support but I also need to still be able to turn my head to check my blind spots. I’ve tried adjusting my seat a million times and it doesn’t help.

Hi guys. Just wanted some reassurance that this isn’t just me experiencing this. I’m not diagnosed with MCAS but I do have hEDS and POTS, and I am diagnosed with Oral Allergy Syndrome, so we’re pretty sure MCAS is likely I just don’t know how to go about getting a diagnosis. I’ve recently developed allergies to most nuts, with peanuts being the most severe. I LOVE peanuts and peanut butter, and giving them up has been HARD. However, it was very scary when I was all alone and had to call 911 to my dorm because my throat was getting numb and tight. We did allergy testing and it’s not a “true” allergy, but my allergist said still avoid it and if it causes any throat symptoms then use my epi pen. I keep having people, mostly my sisters and cousins, saying “you’ll be fine” and “you don’t have a peanut allergy” in regards to me saying I can’t eat something with peanuts. I feel this implies they want me to eat it and prove that it actually is severe and will send me to the hospital. It’s also not unusual to develop new allergies as you get older. I don’t know why they don’t believe me. I don’t know if they think I’m faking it. I would not fake this. I love peanut butter way too much to randomly decide one day that I wanted to fake an allergy.

I’m 19f with a history of hypermobility, so things move more than they should. Yesterday I was driving and accidentally jumped a curb while turning in a parking lot and the impact was pretty hard. I did not hit my head, but it was definitely jostled. I had an increasingly worse headache develop over the ten minute drive home. I basically went home and went to sleep. My parents weren’t concerned.
The headache feels like pressure all around, and is constant. I have ringing in my ears. I’m slightly nauseous. My boyfriend thought I was faking to get out of doing something, so he forced me to come with him to the mall. It was so loud and so bright. I had bad vertigo and the world felt bright and blurry and I was disoriented. I was very irritated and also started crying at one point. My parents still think it’s just a migraine and won’t take me to urgent care because they think urgent care won’t do anything. Normally I’d take myself, but I’m not risking driving with a possible head injury. I hate that no one is listening. They don’t believe me because I “didn’t hit my head” but that’s not a requirement for a concussion.

Was just diagnosed with OSD and MGD today after like three years. I have so much other medical shit going on that this was the last thing on my mind. Went to the eye doctor for routine checkup and this also happens to be a new doctor at a new practice because my parents grew tired with our old practice. I mentioned I’ve been struggling with dry eyes for years now and do a weird blink to help it feel better. He looked at the surface of my eye with the dye and light and then showed me photos from a website to show me what he saw. On a scale of 1-5, I was a 3, so right in the middle. Some yellow speckle dry spots. Not a whole lot, but also not just a little. He then said I have a lot of inflammation and squeezed my eyelid (ow) and my glands are producing the thick white toothpaste gloop. I also have atrophy, and my glands stop about halfway along the eyelid because part have died. RIP eyelid glands. He said this is very common, just usually not at my age of 19. lol. He suggested taking a break from contacts, I bought special dry eye drops for $25, and he prescribed me a steroid drop called Lotemax. He basically said if we don’t do IPL we risk more of my glands dying. It would be about $1800 for the four sessions, and we’d have to repeat it every 1.5 years or so. He says this should help unclog the glands by melting the white goop. Is it worth it? My family can afford it, but light therapy in general kinda seems like a scam and we don’t want to do it without research. For people with severe MGD especially, has it helped?

Hi all. Ive (19f) been trying to figure out the source of my pain with no luck. To start, ive had bad cramps ever since i first got my period in middle school. Always had to take pain meds and use a heating pad. My sisters never had this. I am also diagnosed with PMDD, which my sisters don’t have. I know PMDD can maybe be associated with endo??? Idk, I havnt done much research. My period was always very regular, and I know irregular periods are usually a big symptom so idk. I know when I first got my period, I I would be on the toilet literally bent over in severe pain like someone was stabbing me in my stomach. I haven’t experienced this in years though. I also never had super heavy bleeding that I can remember. Like, I bled through my pads a lot, but I thought I was just bad at managing my period. There were usually clots, but again, I feel like they were normal clots?? I don’t remember bleeding through a super tampon in 30 minutes like I know a lot of people with endo do. I feel like from what I know about endo it’s severe and makes you super nauseous and sick, and I don’t have that?? I get nauseous, but I’ve never thrown up from my period. I know I shouldn’t compare myself, but I feel like im just not as sick as I’ve seen other people be. I am now on combination hormonal BC (Junel Fe) and have been for like uhhhh two years?? But I still get a period and have bad-ish cramps.

Anyways, now to the present. I have had severe pain in my lower right abdomen that has sent me to the ER three times in the last ~10 months because it presents as appendicitis. I also suspected PCOS/PMOS last year due to this stabbing pain before it got worse, but I don’t have it. I’ve had two CT scans with IV contrast. Several abdominal and transvaginal ultrasounds. They were more concerned for ovarian torsion at the ER. Absolutely nothing. Zero. I’ve been to two different ERs (just because of where I happened to be) and even got my campus doctor involved, who also sent me for ultrasounds. There were like a few small cysts on my ovaries but I think they’re just the ones that are supposed to be there and not expected to be the cause of my pain. Uterus was fine. I also had a colonoscopy last week and again, really nothing. I’m lost. Endo is the last thing I can think of. I’m seeing my gyno in August. For now we changed my BC to taking it nonstop for three months, then the sugar pills, then again nonstop for three months. Basically only get a “period” every 3 months. This pain is pretty consistently in the same spot, and sometimes if I lay weird I get a bad stabbing pain. I’ve had that weird occasional stabbing for like four years, and I always thought maybe it was just me making a cyst angry but they found NO CYSTS. I also used to get bad ovulation pain in my ovaries, and then I felt like I was still getting it despite being on BC and not ovulating. I do also have consistent bloating in my lower stomach where my uterus is.

I know laparoscopic surgery is the best way to truly diagnose it. Does this sound like grounds to warrant it??? Obviously I’ll see what my gyno has to say when I see her. I feel like still having a pretty normal period while on BC is really weird though. I have a lot of other health stuff going on, and I am a slight hypochondriac, so when I get a procedure done that doesn’t find anything my family kinda makes fun of me and calls me dramatic.

I had my first ever colonoscopy a week ago and was prescribed goLYTELY prep. I had to drink 4 liters total, split into two 2 liter doses, so about 64 ounces at a time. 8 ounces every 15 minutes until finished, and then again a few hours later. How come everyone else I’ve seen gets to do half of that??? They mix MiraLAX with 64 ounces of Gatorade and they get it split in two 32 ounces doses. Why??? I know doctors can prescribe different things, but WHY??? The amount I had to drink was insane. It actually took me five hours to finish the second dose instead of two because I felt so sick. Lucky ducks must’ve had it so easy. I mean obviously prep is no fun for everyone but I don’t understand why i had to do double what everyone else seems to do.

Just wanted to put this here because these people really helped me. Anyone in NJ, specifically the Monmouth county area, i HIGHLY recommend Atlantic physical therapy. I only went to the freehold location, but they were great. I’ve been there in and off for two years. They’re the ones who first told me I might have EDS in the first place. They know about hypermobility and can help give advice. I also went to Professional Physical Therapy while I was in school. They can evaluate and manage small injuries you have questions about. They were also very accommodating with my POTS and gave me modified exercises if they made my HR too high and let me have breaks to lay down. Everyone is so nice, helpful, and validating. They help work on strengthening your core too instead of just trying to fix whatever joint you’re there for. They were great for surgery rehab after both of my surgeries (ankle 2 years ago and wrist last year) .

Hi all. I know is a touchy subject and I’m going to be making assumptions, but this has been frustrating for me. We’ve been suspecting hEDS for two years now, currently just diagnosed with HSD. I was told you can not achieve an hEDS test without genetic testing. Because hEDS has no clinical blood test to prove it, you have to be 100% sure that it is hEDS by ruling everything else out. I’ve seen people on here going to random doctors that don’t specialize in connective tissue disorders getting diagnosed just because they’re hypermobile and have symptoms. I’ve been told by several of my PTs and doctors that it’s likely EDS and I need to get tested, but they can’t diagnose me, only suggest I go for testing. I feel as though people getting an hEDS diagnosis from someone other than a geneticist without any bloodwork is wrong, and that the doctor just likely said they have it because the patient thinks they do. You can’t go to a doctor and say “I think I have this condition, but please confirm it” and then have them go “sure yup sounds like you have it” without ANY testing. In my experience, I saw a rheumatologist to rule out RA, lupus, lyme, and other autoimmune diseases that present similarly to EDS, and am getting genetic testing done this week FINALLY. YOU CAN NOT BE DIAGNOSED WITH hEDS WITHOUT RULING OUT ALL OTHER TYPES OF EDS!!! Sorry if this offends anyone, it just makes me really angry, and slightly jealous.

Edit: it is also dangerous. Someone could think they have hEDS but actually have a rarer more severe type like vEDS and not know because they stopped at hEDS. The hEDS diagnostic criteria states
“criterion 3: all of the following prerequisites MUST be met: ‘2. Exclusion of other heritable and acquired connective tissue disorders, including autoimmune rheumatologic conditions.’”
To truly rule these out properly, you need bloodwork.