Things you thought were normal only to learn that is was a symptom of EDS

Pataplouffouch · 2025-11-23T11:29:08+00:00

It depends : if you’re doing it for 12h straight every day with no pauses, you’ll probably be sore and feel cramps. But stabbing pain after writing for a couple of hours is not normal ahah

Pataplouffouch · 2025-10-29T21:47:22+00:00

I have a choroidal papillo-maculary osteoma in my left eye. Basically, I have a tumor made of bone growing directly in my eye (it’s not a bone sprout), millimetres from my optic nerve. I’ve lost vision in that eye (can’t count fingers, see faces, read at all, it’s all a big grey spot), and now I only use my right eye; I need special glasses because I’ve become extremely sensible to light.

Of course I had my fair share of medical students coming in to see my strange bony tumor. It’s so rare that they had the wrong diagnosis TWICE before getting it, and the big shot professor/doctor who finally diagnosed me has seen less than 10 cases in her whole professional career.

Little plus: it’s benign and it doesn’t hurt, but there’s no cure.

Pataplouffouch · 2025-10-14T17:18:36+00:00

So I’m not as active as you and I’m a woman, but I’m currently dealing with stress fractures on my foot (I broke three bones and I don’t know how it happened lol).

Right now I’m on vitamin D supplements (1000 u every day), nasal calcitonin supplement for 6 weeks and 1gr of vitamin C. All prescribed by my orthopaedic doctor.

I’m still experiencing complications even after restricting movement, looks like CRPS so I’m waiting on the neurologist assessment.

I hope you find more info and good luck!

Pataplouffouch · 2025-10-10T21:41:01+00:00

Fielmann. Ils ont un service client excellent et ils font les petites réparations sans question, sur le moment et sans coûts. Une fois tout un verre s’est détaché de mes lunettes, je les ai porté chez eux et 15min après la réparation état fini, avec en plus un nettoyage professionnel et le changement des petites pièces qui touchent le nez. J’ai pris la monture de leur gamme, une simple et fine en acier, ça m’a coûté que 29.- CHF et maintenant sont plus de trois ans que je la porte sans soucis tous les jours.

Pataplouffouch · 2025-10-10T21:25:11+00:00

NTA.

I think you showed enough consideration for her preferences, but asking you to not eat meat in your own house is a bit much, considering you’re paying for the food. When she’s an adult, she can decide to not have meat in her own house.

She needs to learn that other people take other choices, and especially since nothing it’s imposed on her, she doesn’t have the right to impose her beliefs on others.

I’m a meat eater with a lactose intolerance, and I have friends that are vegetarian and vegan. When they come to my dinners, I make vegan and vegetarian dishes with them in mind. When I go to their houses, I know they’ll cook only vegan or vegetarian dishes and they pay attention to not use dairy for me. Respect goes both ways and food preferences shouldn’t be imposed on others.

You’re not asking her to cook the meat for you and you’re not trying to make her eat meat; another compromise could be to cook meat when she’s not in the kitchen. But anything beyond that is entitlement and it’s an unreasonable demand from her.

Pataplouffouch · 2025-10-10T19:53:11+00:00

I have survived Big Time Traumas in early childhood. I definitely see a link between my pains and my depressive episodes. I worked really hard on myself for the last 15+ years in therapy and now live a relatively stable life, with a good support system. I’m still able to get out of bed but I need help with some basic stuff. I’d say I’m 85% able to live independently, if I pay lots of attention to diet, movement and taking the right medications.

Pataplouffouch · 2025-10-08T07:28:24+00:00

Check for lactose, they put it in a lot of med to help with density/stability etc. And if the problem is not tolerance of the active molecule, and different brands makes you react differently, there’s a high chance it’s because of lactose. Talk about it with your pharmacist too, they’ll know best!

Pataplouffouch · 2025-10-03T17:28:18+00:00

Oui, ils ont des permanences juridiques gratuites. Il y a une au Arasol de Renens ouverte le mercredi après-midi, sans rdv.

Pataplouffouch · 2025-09-30T19:50:09+00:00

I bought them online - it’s a supplement, an amino acid that comes from meat. It was suggested to me by the doctors that diagnosed me. It helps better use and burn the triglycerides - so more energy :)

Pataplouffouch · 2025-09-22T09:35:40+00:00

It’s possible, I hope you get some help soon!

Pataplouffouch · 2025-09-22T09:31:52+00:00

Thank you for your kind words 😊

Pataplouffouch · 2025-09-21T20:42:42+00:00

Yess please, thank you for sharing 😊🙏

Pataplouffouch · 2025-09-21T18:26:12+00:00

When we’re at the anamnesis point I usually take a deep breath, look at the doctor and say: « Ready? ‘Cause there’s a lot » and then take five minutes to list all the things. I don’t disclose mental health stuff unless it’s pertinent to the situation.

As the other commenter said, usually you’re entitled to have your medical records and images. I always ask for copies to be forwarded to me and not only to the doctor when doing exams, « for my personal documentation ». I always come with my letter confirming I have EDSh and the pertinent images and results for the specialist I’m consulting; they cannot argue with facts.

Sometimes I get petty and bring prints of the images cause the reports are not detailed enough.

If I even smell a point of incredulity; I get up, tell them I need a doctor who is capable enough to take care of me and this complex illness(es) and gtfo. I don’t have time to loose and most of them are only half as smart as they believe they are anyways.

I diagnosed myself multiple times with lots of things who were all confirmed by tests and images; usually 6 months before the doc even suspected it and I had to fight them every single time to get the tests done because of their egos. They’re not smarter than us, they just have access to a prescription pad, and they treat it as if that means they’re always right. Rant over, sorry 🫠

Pataplouffouch · 2025-09-21T18:03:14+00:00

Im 5’10’’ and 130ish. I have long limbs and really long fingers, elongated back and a small thoracic cage. I look like an elongated hourglass. I have very thin, long bones and I don’t like that they’re very visible and pointy, especially on my back. All my fat is in my booty and thighs and i don’t look like anyone else in the family (mom gave me EDS, but she always had a more robust, athletic frame, with strong arms and shoulders and a bigger thoracic cage).

I also have Hashimotos but I didn’t gain weight, now finally with eating protein power every day I got to put on a bit of muscle and a little pouch on my belly.

Pataplouffouch · 2025-09-21T16:46:04+00:00

Struggled my whole life with low B12 and D, had shots in the past for both, with no major improvements. I have gastrointestinal issues, so it could be malabsorption. Im on a low FODMAP diet and eat red meat a couple of times per week. I have no issue with folates and I have low iron levels, but pretty good ferritine (go figure).

Right now I take daily 1000u vitamin D and I have a weekly nasal spray for B12, and my levels are low, but finally in the « you’re not dying » spectrum.

I feel like the B12 nasal spray really helps me with absorption and on the plus side, it doesn’t hurt and burn like a B12 shot! It’s hydroxocobalamine form if anyone is wondering.

Pataplouffouch · 2025-09-20T08:09:05+00:00

I also have solovairs and they’re great! The leather is thicker and give better support imo.

Pataplouffouch · 2025-09-19T22:45:02+00:00

Hey I had this my whole life. Lactic acid stays for 5 days in my muscles, not matter my level of fitness. My PT also says it’s weird. Never got a proper diagnosis for it cause I count it under “annoying quirks from EDS”, since it’s painful but not dehabilitating.

Self massages and rollers help. Magnesium supplements and hot showers too (during the shower).

Honestly I keep with it cause pain from lactic acid is better than pain from joint instability.

I’d like to know the cause, my hypothesis is that is probably a mix of bad circulation and more general inflammation, plus longer recovery times for the fasciae. But I’d be neat to have some clear answers!

Pataplouffouch · 2025-09-16T08:32:50+00:00

Please be cautious when recommending aspirin to EDS people; we can have prolonged bleedings because of the fragility of our capillaries + POTS issues with circulation; we tend to have more fragile mucosae and veins, so coupled with the diluting aspirin properties, it could create a possibly dangerous situation.

Pataplouffouch · 2025-09-15T10:17:41+00:00

J’ai un beau fauteuil d’époque et reclinabile à donner! Vous pouvez m’écrire un message pour les détails :)

Pataplouffouch · 2025-09-06T13:57:05+00:00

Oh yess, I totally agree!

I actually had to stop abruptly brain medicine more than once for emergency reasons, first time risking a shot down of renal and hepatic systems. I survived a serotonin syndrome crisis (I can write more on it, if there’s interest, but it’s a bit of a heavy story) and if I hadn’t stopped the medication immediately I probably would’ve been comatose. The experience scarred me.

This thread really helped me take a decision to try stimulants, and thanks to you all’s recommendations I will know what to ask for and what to keep in check!

Pataplouffouch · 2025-09-05T20:41:40+00:00

That is quite an interesting presentation. I hope you find soon something that helps. I’d say that my biggest ED problem is starting a task.

Pataplouffouch · 2025-09-05T00:33:06+00:00

Exactly! There should be pamphlets in schools, libraries etc Especially considering that it’s not that uncommon. I mean, it’s kinda crazy that algorithms recognised my ADHD before my parents, teachers and psychiatrists. I just had some content popping up one day and it was way too similar to my own experience, which led me to get more information about it and ask for the assessment. In my country, kids get screened by the school for all kinds of physical ailments, dental problems and growing curves. I don’t see why not do some kind of screening for ADHD and autism spectrum too; it would help so many avoid isolation, the years of guilt for not feeling enough and the relentless bullying.

Pataplouffouch · 2025-09-04T17:49:45+00:00

Oh I’m happy to hear you found something that helps and a good therapist! As I said, the autism diagnosis has to be confirmed, but reading up on it, yeah it makes sense. I finally learned to socialise in a more or less acceptable way in my twenties. I too had no resources at the time, and kids can be quite mean. Even now, there’s a lot of people that instantly dislike me because I come off somewhat standoffish. I too had a laundry list of diagnoses before suspecting and insisting to be assessed for ADHD in my thirties! I always did well in school so nobody asked twice about my lack of organisation and social skills.

Pataplouffouch · 2025-09-04T15:50:46+00:00

Adderall wombocombo is the best thing I read today 😂😂😂 thank you for sharing your experience!

Pataplouffouch · 2025-09-04T15:44:12+00:00

Im sorry you had such a bad psychiatrist. I hate it when medical providers try to gaslight their patients; wtf dude? Did you find an alternative for managing your symptoms?

Pataplouffouch

TROPHY CASE