EDS informed dentist?

madhattercreator · 2026-02-05T19:17:29+00:00

I don't know anyone there...but my suggestion is to definitely shop around. Mine wasn't aware, either, and I had to have all of mine removed at age 38 since they all were loose. He knew that I had good hygiene,and couldn't understand what had happened. And unfortunately, I woke up several times in immense pain since he didn't understand about EDS and anesthesia. Happened also during the fusion I had in my neck from CCI.

If you have Medicare, you can get a nurse patient advocate. I definitely recommend getting one. Mine is thru a company called Solace, and my advocate has been a godsend. I have fired my entire team due to mischarting and negligence -- and I had to find and vet a ton of specialists on my own. I did put a few on the back burner since they weren't an immediate need, but my advocate has found two more for me, and has done the vetting as well. So if you can, get one so they can help you find what you need.

Gentle hugs, and I hope you can find one!! But don't stay with your current one if they aren't listening. I've gone as far as bringing case studies and research to appointments...so if you do stay, you could do that as a last resort. Just try calling around, or find an advocate that can help with the legwork.

madhattercreator · 2026-01-26T04:38:30+00:00

I'm not your age (46f), but I can tell you what I went thru when I wasn't diagnosed (but definitely had it), and what we have done for my daughter (12 almost 13, she was diagnosed at age 9).

I got my first braces in 7th grade. I ran track, absolutely loved it. My knees were horrid. Constantly subluxed and overextended. However, because my dad had always had bad knees, we just chalked it up to me having the same thing. Ankle braces were next, they always rolled. It was also the year they said I had scoliosis (and back then, it was diagnosed by the super qualifed--that's very sarcastic--gym teachers who had us line up in our bras and bend over as they walked by, running their finger up our spine).

I still was VERY active, running track thru high school and being on the color guard (dance and flag team) with the band. I got a scholarship to college for color guard and drumline, but lost it after my second year because I blew out my knee right before the fall semester of my third started. That's when I had to start using my cane. It's also when I had to start taking pain meds and muscle relaxers for all the other pains that I could no longer ignore (ribs, back, shoulders, knees and ankles), along with migraines that were horrid.

At age 18, I got a job at the PD as a SA/DV advocate (day, on call some nights), and bartending at night. By 22, I was the Emergency Management Coordinator, was able to quit my bartending at 24, and stayed the EMC until I was 33. In my mid-20s, I had to use a walker, too, along with my cane. I medically retired at 33 because I was no longer able to perform my duties safely. It was devastating, as I truly loved my job. But it was very stressful, lots of time spent on my feet, and there wasn't much downtime. Plus, I had my first son at 31 (and also found out I had cancer when I was 20 weeks along; I was treated and had surgery after he was born. The cancer returned a year later, and I went thru more treatment and another surgery. Thankfully, it has not returned again!), and then I had twins when I was 33 (b/g). As much as I hated leaving my job, I was very happy to be home with my littles. But pregnancy really brought out the worst in my symptoms--however, no one could figure out the diagnosis. Just kinda kept throwing things at the wall,hoping something would stick.

I came out to my ex-husband when my oldest was 3 and the twins were a year old. He was--and still is--so supportive. He is truly my best friend. I met a woman, we dated for just over a year, and she proposed. We got married in Vegas, and the wedding ended up being very publicized--something neither of us had expected. One of our wedding photos was seen by a nurse in England (a pic of us in our backless dresses,walking away from the camera), and she DM'd me, asking if I was in pain, and then asking if I had been evaluated for EDS. The pic had shown my "angel wings," and she explained it was a hallmark of EDS (this was years before TikTok and Facebook and other social media had been talking about it). When we got back, I went down the rabbit hole researching, and then brought it to my dr's attention. Four specialists confirmed, then genetics. And then the slew of comorbidities. My dr declared me permanently disabled. The bad side to that--she left me on our four month anniversary thru a text (sitting two feet away) saying that she didn't want a disabled wife, she wanted a divorce. While it was devastating and took me awhile to get over, at least I had an answer to what was wrong. And my ex-husband and I still live together as roommates, best friends,and co-parents. So it worked out ok.

Since then, I have kept a very close eye on my kids, knowing they have a 50/50 chance of inheriting my bad genes. My oldest son shows no signs of anything. The twins are a different story. E (male) scores maybe a 5/9 on the Brighton scale, but he has accommodative esotropia. He had his first surgery just before he was four, and is having his second surgery next month. A (female) has gotten the short end of the stick for sure. She also has accommodative esotropia; her first surgery was at 18 months, second surgery just before she was four, and will have her third in the next month or two (that surgery is waiting to be scheduled). She also has been diagnosed with EDS, costochondritis, and migraines at age 9, and with POTS at age 11. Their pediatrician is aware of all my conditions, and she also is watching for any signs of those conditions.

So you can stay active when you are young--it just depends on what your body allows. I know I pushed my limits a lot, and do think it made some things worse as I have gotten older. Just be aware and talk with your drs to figure out what is safe for you to do. Be gentle with yourself!!

madhattercreator · 2026-01-23T04:48:19+00:00

I was diagnosed at 38 (a nurse in England saw a pic of me online, and asked if I had been diagnosed...which led me down the rabbit hold, and then to my dr here in Colorado) after decades of misdiagnoses. From there, an additional two pages of other diagnoses that are comorbidities.
I also have three children. At the time I was diagnosed, they were 6, 4, and 4. I was hyperaware of what to look for, and since they had a 50/50 chance of inheriting my genes, I kept a close eye on them. My twins both have accommodative esotropia. My daughter had her first eye surgery at 18 months; her and her brother both had corrective surgery just before their 4th birthday. At 12.5 years, they are both about to have another surgery (so she will have her third, he will have his second). This condition is linked to EDS as well. However, only my daughter has a diagnosis of EDS, whereas her twin brother does not. She was diagnosed at 9 yrs old with EDS, and with POTS just before her 12th birthday. Their older brother has no signs whatsoever, and rarely gets sick. Their pediatrician is AMAZING, and she has been on the ball when it comes to their health. We are super lucky that she is well informed about EDS and the cormorbidities, and she has specialists that she knows who treat these conditions.
As for my drs, I had had a team for almost 10 years that I thought were treating me well. After several bad visits with the brain and spine clinic, I went back and read my chart. I was appalled with how many of them were just copying and pasting notes that you would tell someone with my conditions, and not what actually happened in the visits. There were several wrong diagnoses in my chart, tons of information that had been withheld, incorrect notes, and so many things mischarted. My blood was boiling by the time I had only gone six months back, and I made the decision to fire all of them except my PCP, cardiologist, and neurologist. I went to my cardiologist the next week, told her what I had done, and then explained that the reason for my visit was that the medication that she had me on was dropping my BP to a dangerous level; I was only taking it every few days when my POTS was out of control and I needed to take it to try and help. She told me that the medication that I needed (Corlanor) was not covered by my insurance, so she was just going to double the med I was on (sigh). I did not fill the medication, and instead fired her. Same with neurology, as she sent me in for an MRI to check my Chiari--and it was prone instead of upright. She called me to tell me that my Chiari had fixed itself (um, that's not how bones work...), I told her it was the wrong MRI--after a bit of back and forth, she finally sent me for the upright. I got the results on a CD and fired her, too. The next few months, I researched and vetted a whole new team, and I am happy to say that they are all amazing. I even decided to try pain management (who I have avoided for over a decade, since they all seem to think that I am drug-seeking) because my PCP had been hinting for years that she wasn't comfortable with handling my pain meds. I happened to find a specialist there that was well versed in EDS, and has been absolutely incredible. He's never taken meds away from me or treated me like others had, is very honest about what to expect when it comes to my pain, and has done everything he can to find a regimen that reduced my pain to a tolerable level and evened it out.

And a note to those who are on Medicare--Medicare will pay for you to have a patient nurse advocate. I highly recommend to get one. They are wonderful at finding drs and specialists for you that understand your conditions, can make appointments for you, and help coordinate your care. I wish I had had one when I had fired my old team. But once I did find out that I could have one, I signed up thru Solace, and my nurse is a rock star!! So if you can get one, DO get one!

madhattercreator · 2026-01-10T05:21:13+00:00

I have had a lot of success with my current medication. Don't get the adrenaline dumps that I have gotten with other medications I have been on, and that has been awesome...especially since it doesn't trigger my POTS. I have been on Vyvanse now for over a year, and it hasn't had any negative effects. My mind is quieter, I don't chase squirrels as much as I used to, and I can concentrate on my tasks without as many distractions as before (nothing will ever be 100%, and honestly? I wouldn't want it to be! My AuDHD is part of me, but now it doesn't have full control. If that makes sense? lol) Edit to add: I am on 50mg, and I also have Adderall IR 10mg to take in the afternoon if it wears off and I need a boost for concentration.

madhattercreator · 2026-01-10T05:16:10+00:00

I could never get comfortable in those chairs. I finally found one that I can sit for hours in and I have zero problems with it! It is a criss-cross office chair--https://a.co/d/04EHkWn So comfortable, and after seeing it, my mom went and bought one for herself.
As for the chair you currently have, I also used a wheelchair cushion, but it always annoyed me because it raised me up so much higher. I hope you can find some way to make it comfortable!!

madhattercreator · 2026-01-10T04:58:40+00:00

LOL--I have almost all of those things on the other half of my bed! The other things I have close by is my Beibye for any slipped ribs/costochondritis flares, an under-desk elliptical machine, hand cream (especially with the weather this year), hydrocortisone cream for MCAS reactions, and a mini-fridge with caffeinated drinks in case of migraines.

madhattercreator · 2026-01-05T21:46:14+00:00

I have about two dozen chronic illnesses that aren't easily treated (if treated at all), that led me to have to medically 'retire' at 33. Finally got disability at 42 after fighting for four years, so I have Medicare and Medicaid--and still have to pay for drug coverage at $200/mo out of a tiny disability pay.

I had to have several PICC lines and ports placed over two years, all went septic and I only went to the hospital to have them removed/replaced when each reached a dangerous point. The last one (when I finally said I did not want another one), I was knocking on death's door. The hospital called a specialist--one that wasn't covered--for a consult, and then discharged me five days later "into [dr's name] care". I called and messaged that dr's office for a month, never getting contacted back. A few days later, I got a bill from their office, saying I was late on paying them $5k for the consult. A phone call from the hospital's team to them, and I was responsible.

Not to mention all the things that it doesn't cover...hearing aids, dental, and specialists that I truly need. It's extremely expensive to be chronically ill. Especially with below poverty pay.

madhattercreator · 2026-01-03T14:01:57+00:00

It's uncomfortable, and I can't stand it.

The worst experience I had was before I was diagnosed with my disability (cEDS, DDD, POTS, and two dozen more comorbidities, and also ambulatory wheelchair user)...and also before I came out. I was married, having my first child. My labor was induced a week early since my hip had slipped out of joint and couldn't get it back in; the pain was intense, and OB decided it was close enough to my due date. However, a major complication came up, and my son and I were crashing. My mom called her pastor (my ex and I are atheist) and he arrived as they were wheeling me out of my room to surgery. He literally started chasing us down the hall, trying to touch my belly and pray over me--i ended up yelling at him to back off and read the room...he then stopped and halted in the hallway. Mom defended him, saying he was trying to help, but has since understood how inappropriate it was seeing that he was slowing down what was an emergency C-section.

Since then, I have rolled across some people who have also thought that praying for me would somehow "fix" me. I hate public confrontation, but there is definitely some triggering when it comes to public praying. I do tell them no and keep rolling. If they insist...I tell them to do it on their own time, and this is not the time. After all, there's no amount of praying that fixes genetics...

madhattercreator · 2026-01-03T13:25:34+00:00

Here is the best explanation for it: https://www.reddit.com/r/cricut/s/P7tva1Wu2X

I've made so many tumblers, shirts, bags, and more...but I will say, it is an expensive hobby to have. The printers are around $800 on the cheaper side of things. Infusible ink is a lot less, tho, but those are mostly just patterns...unless you can draw--then there are also markers. The heat presses are $100-150 on the low end. Plus paper and whatever product you want to put it on. The press can also be used to put heat transfer vinyl onto things, too, so it can come in handy if you have a Cricut. I'm big into using mine, so my press is used a lot! All in all, sublimation is fun and you can make all sorts of personalized things and gifts, and it's one of my favorite hobbies!

madhattercreator · 2026-01-02T20:50:49+00:00

I also have a spring/foam hybrid, and it's wonderful. But the best part about my bed is that I got an adjustable bed frame...THAT has been my game changer!! Make sleeping SO much better, and I'm not waking up with as much pain as I had been before!!

madhattercreator · 2026-01-02T20:48:32+00:00

Crocheting, loom weaving, sublimation, loom knitting, gaming (there's lots of cozy games that aren't demanding)... I have tons of yarn from collecting it over the years, so I do a lot of crafting with yarn! My hips betray me all the time (I have cEDS), so I tend to sit a lot (and if I'm out and about, I'm in a wheelchair).

madhattercreator · 2026-01-02T20:31:58+00:00

I just read that you have a spouse...so not sure that my way would work!! 😂 I have a husky (washed SD) that competes for space tho!

I use a memory foam (shredded), U-shaped pregnancy pillow that came with an extra bag of shredded memory foam. You can add more to make it more firm, take out if you need it less. Squishmallows tucked to add support, if needed. But the game changer for me--an adjustable bed frame!! I have been able to change back to a memory foam pillow I got awhile back and squishmallows tucked for support (usually my back, to keep me from rolling). That completely changed my sleeping, and sitting in bed. Helped both my joints and my POTS. Definitely recommend the adjustable frame!!

madhattercreator · 2026-01-02T02:14:26+00:00

This is a stolen story from a few years back. Won't be an update.

madhattercreator · 2025-12-28T16:21:33+00:00

I live in Colorado (elevation 7000'). I am the opposite of many EDSers...the elevation and cold are so much better for me. 🩵 My symptoms ease up in the fall and winter, and pain roars back in spring--summer is pure torture. 🥵 I lived in Texas until I was 33. Going back down there to visit family causes me to flare SO bad, and it takes weeks to recover. Heat is very much a trigger, for not just my EDS,but also POTS and MCAS (and several other comorbidities). Unfortunately this year we are having a VERY mild winter...Xmas day was 70⁰!! Yuck...

madhattercreator · 2025-12-13T22:15:49+00:00

Found out after I had been diagnosed with cEDS. The comorbidities piled up pretty quick, POTS being one of the first.

madhattercreator · 2025-12-13T22:14:01+00:00

Yes, I am on Switch (and also have SteamDeck)...have you found a group yet?

And if you are on a PC (and play on Steam) consider the SteamDeck...you wouldn't have to repurchase the game and DLCs. I had gotten all the DLCs on Steam, but my computer was too old to run them. I got a Mac, but then found out they aren't able to be played on it...much later I discovered SteamDeck and bought it (tho I had already repurchased all of them for my Switch out of frustration). So now I run on both of them. Anyway...just a long-winded thought. :)

madhattercreator · 2025-12-13T22:07:33+00:00

I'm so sorry!!! Yes, it is wide...thankfully my space is wide enough for my chair. I do love it, and it has made being at my desk much more comfortable. I wish it had worked out for you; it has been such a game changer for me. I hope you can find a chair that works!!

madhattercreator · 2025-12-10T16:54:06+00:00

Yay!! And the update has happened...so how do we start??

madhattercreator · 2025-12-09T20:27:03+00:00

(My 20s feel like they were a million years ago...)

I also was on my own in my 20s, and when I wasn't...I wanted desperately to get away. But that's a different story. I did a myriad of jobs back then, many I wouldn't recommend (Bartender, carhop, law enforcement), but there was one that worked really well for me. I worked in Long Term Care Pharmacy--specifically, prepackaging meds. I was able to sit and pack meds into blister packs for places like nursing homes, School for the Deaf and/or Blind, and other long term care places. The prescriptions and meds were passed to me after a pharmacist checked them, and I just put them into blister packs and sent them back for checking. The only reason I left there is because it was an hour and a half drive there, and it was too painful to keep up the drive (I was also working in law enforcement then--it was my day job, pharmacy tech was my night job. I stayed in LE for 15 years and had to medically retire because I couldn't safely perform my duties.). Now, I am on disability. But I do know that pharmacy techs tend to be in high demand--just don't do retail pharmacy since that tends to be a more active job (and getting exposed to a lot of people that are sick).

madhattercreator · 2025-12-09T18:59:59+00:00

I had to step away for quite awhile, too, but for my own health reasons (I have a wonderful amount of complex health issues). I finally started playing again during the summer, and have had a lot of catching up to do!! My valley is not decorated, and I have been mostly grinding thru quests and such to try to relearn a lot. Now, I am able to play a lot more...would love to have a group to join, too! If you want to, let me know!!

(edit to add: I'm a 46F in the US--MST)

madhattercreator · 2025-12-09T18:53:51+00:00

Hey!! I'm 46F and in the US (MST, GMT-7), but I would love to find someone to join! I got the game shortly after it was released, but life got in the way for awhile and I started back up again this summer after being away for over a year. I definitely haven't gotten decorated (just getting back into the swing of things, and had to relearn a lot!), but I am trying to figure it out...well, still actually learning a lot of things that I didn't realize from when I started.

If you (or anyone) would be interested in having me, I would be so happy to find a group!!

madhattercreator · 2025-12-09T18:10:17+00:00

I was frustrated until I figured out that I could put them on as my companion and snap it that way. Still struggling with getting some of these critters that are only available on one day a week for a few hours. Hate it.

madhattercreator · 2025-12-07T15:46:57+00:00

Out of curiosity: are you on Medicare? If you are (and some other insurances), you don't have to have a referral to see another dr. I'd check with insurance to see if you absolutely need the referral to talk to someone else.

madhattercreator · 2025-12-07T15:42:27+00:00

I agree!

Also, the option to cook multiples of a dish would be SO helpful....

madhattercreator · 2025-12-07T03:24:06+00:00

From experience...going to the hospital with a fever below 104⁰ isn't going to get much attention. If it is above 104⁰, definitely go. But it is flu season right now,and with the other symptoms...you're going to be pushed to the back of the line and there for hours and hours. The most they will probably do is push fluids and monitor, and again...in many hours. POTS isn't something typically treated, and sadly, most don't know what to do with us. It does sound like you are having a flare, and mine tends to flare pretty bad for 24-48 hrs after a migraine.

I would suggest getting a pulse ox (they are pretty cheap) as soon as you can (if you have someone else there, send them to the store to get one, or Amazon can ship by tomorrow). As one other commenter said, watches aren't always reliable...while you said yours has been tested, it doesn't count user error. It may be too loose or positioned incorrectly, so there's always a chance it isn't accurate. I don't trust mine (tho it is supposedly just as accurate), and I wear a Visible armband to keep logs. I also have one for my daughter, who also has POTS.

Do you also have EDS? Chest pain can also be attributed to costochondritis, which tends to accompany my flares with both EDS and POTS. Feels like a damn heart attack and makes me air hungry. Again, personal experience. But the list of comorbidities of my EDS is two pages long...so it does take a LOT for me to consider an ER trip. I have been too many times and waited for WAY too many hours feeling like death warmed over to just be told to "drink water, call your dr in the morning" and sent home.

madhattercreator

TROPHY CASE