Hi all. I just found out I’m pregnant at the doctor yesterday, and it’s very early (3 weeks!!) but I’m in so much pain already. My joint has escalated the last few weeks. I complained to my husband I felt like I was getting worse, but I guess this is related to the pregnancy?! My joints even feel less stable. My ankle keeps collapsing while I walk. Has any anyone had this happen? I feel so uncomfortable 😞

Im itchy :(

Hey there everyone! As my subject line says I'm going on a long flight followed by a long train ride. I'm worried I'll be in pain especially in my lower back and knees and hips. Do you have any suggestions for what i can do? Thank you!

Hey guys!! Just popping in here to ask if anyone has any experience of accessing medical cannabis. I know there is a two treatment rule before you can access medical cannabis but I'm just wondering if anyone knows what kind of "treatment" that includes. Are we counting otc painkillers as a treatment?? Does physio count?? Say for example I have tried methods of pain relief such as codiene and NSAIDS and they did not work for me but all my medical history was lost when I moved gp services, will they take my word for this or is medical documentation necessary?? Just wondering what exactly that rule means and what is included as a type of treatment, because personally I've been told that my GP can do nothing else to support me at this point.

Edit: shouldve mentioned I am UK based !

I have the hypermobile joints, the recurrent joint pain, and 4/12 of the one section. That one extra point is all I'm missing. And I'm so close to making that even. I have a hiatal hernia but it's never been repaired for it to be able to recur, and I have papules on one foot but not the other. And I've never had my heart scanned to know if I meet those and can't afford to do so. And if my dad's side of the family weren't crazy ass Pentecostals, I'd have the family history, assuming this is the condition I have. The worst part is I WAS ALREADY DIAGNOSED. AS A CHILD. WITH THIS OR WHICHEVER CONNECTIVE TISSUE DISORDER I HAVE. My mom just didn't want me to be weird or like my dad so won't tell me what it is if she even remembers by now.

I saw the road to 2026 thing, so I'm just hoping when the time rolls around there'll be other symptoms considered as part of the diagnostic criteria that would allow me to be diagnosed. Or conclusively rule it out so I can explore other options. I don't know exactly what to do but assuming I don't have heds I think I'll see about getting genetic testing to hopefully see what's wrong with me or at least rule things out. I'm just anxious about the timing because it says December 1st and if my Ortho doctor ends up saying I need to see a geneticist or someone else, I'm not sure I'll be able to get an appointment with them in time for insurance to cover it. I have a high deductible plan so when the new year rolls around it'd be considerably more expensive.

I'm mainly ranting here but if anyone has any advice that's always welcome.

I have hEDS, POTS and being treated for as if i am diagnosed and in the process of being tested for MCAS. I have been fighting to be heard by my PCP for the better of 9 months now. So to start i have spine issues already. I have degenerative disk disease and spinal stenosis in my neck. So i already got the nerves issues that run down my left arm into my fingers from time to time. Use to that now. Doesnt really bother me too much, more annoying. About a year and a half ago is when MCAS started flaring up, i think due to an EXTREMELY stressful time in my life. I dont have any real one event i can think of that may have caused it. My gallbladder was bad and had it removed a couple of months after this started but wasnt removed due to this. Started seeing my PCP looking for answers to these flares of bright red face, chest and ears, hot, burning, stinging. My body would feel flu like. I was so tired i could barely do anything. my joints ache. Eyes, mouth and throat were sooooo dry. My skin dried out. And the migraines that i have always had, became everyday. I mean everyday. Everything went haywire. So my PCP ran tests but really just kinda shrugged me off. In a month i was back sent me to a dermatologist bc she thought its just rosacea. I went and i tried for several months the cream the gave me. No help. Made it worse. Then another flare but this time the front of my neck was killing me. It hurt to swallow, lymph nodes or glands felt swollen. Wasnt my actual throat that hurt. I tried to explain it was my neck. That ran right beside my throat if that makes sense. I hope it does. This time i was sent for an ultrasound of my thyroid. They couldnt tell if it was inflammation or a nodule on my thyroid so went for a CT with contrast. The CT came back with everything normal except for my left internal jugular vein(IJV) was patulous near the meeting of the subclavian vein. I didnt know what that meant so when i asked my doctor, after googling, she said she believed it to be something of “my normal” body. But that is exactly where the pain bothers me. The next flare my neck hurt, as with every flare now. This time it made it hurt from my collar bone all the way up, under my chin and into my ear. My head was still having migraines! The brain fog has gotten worse and i have been having a hard time recalling words at times. Actually made the left side of my fave tingle like nerves were being bothered and my neck felt swollen. No one else can seem to feel the swollenness that i feel. Ive tried to get them to feel it but they all look at me like im nuts. Finally i was told by one of my PCPs (their are 2 in the office both of which know me very well) that i was just goin to have to get use to it and its more than likely muscular. I needed to go to a chiropractor and when i explained why i couldnt see a chiropractor, a deep tissue massage was recommended. So i saw my cardiologist the next week just as a check up and i decided maybe he would listen. While waiting that week to see him i noticed that the weakness and tingling went from my neck to across my shoulder and down my arm into my fingers. I also found a spot right under my collar bone i can push and the tingling goes straight to my fingers. Its bothersome to hold my phone. It makes it worse when i use my arms overhead to long and the tingling will go crazy. I cant look down at my cell phone for to long. Ive been working on better posture and also loosing weight(been working on that for a few months). When i saw my cardiologist he listened to everything i needed to say. And asked about imagining. I told him about the ultrasound and CT. He looked them both up and then said to me basically my left IJV was “buldging” a little more than it should form what he could understand bc the radiologist didnt really go into detail. He said he thinks i may be having some compression on my left IJV. Or maybe even some Thoracic Outlet Syndrome but said he didnt think it was TOS. He is sending me over to a vascular surgeon to be evaluated. It isnt one on any of these lists. I live in alabama and a small town but its one he likes in georgia. One that people speak highly of. Im very nervous bc i have been gaslight and argued with so much i have medical PTSD. I also dont have much support at home. Not much family. My husband hasnt been able to go with me to my doctors appointments within the last several years due to his job. So he only gets to hear what i say and i dont make a lot of sense. Im nervous im goin to get answers this time. And im more nervous they will be answers i dont want to hear. Im scared about what this could mean. Im 37…. And i have children and a husband. Im sure im leaving things out…. But i had to vent somewhere, where others may understand me. I would love to hear others stories. Please no horror stories right now. Im scared enough. I hope you are all doin well and thank you for reading!

I (20F), like many of you, have been asked “Well have you tried losing weight?” more times than I can count. I’m 5’4 and was around 155lbs at my heaviest now 112lbs. I have been lucky to be diagnosed hEDS since I was 13 (though it was one of those cases of having an autoimmune response that made doctors take everything more serious so not sure luck is the best word).

Over Fall 2024 to present I gained the Freshman 15 and dropped it pretty quickly as I developed hormonal gastritis (an issue for a different subreddit). Now bordering on being underweight I can confidently say having a bit of meat on your bones helps. I have experienced far more subluxations since losing the weight and am in pain much more regularly. Despite my efforts I cannot seem to gain any weight back and now have to use more mobility aids than I did before the weight loss.

My POTS symptoms have also become significantly worse as my heart rate is now 130bpm while walking and up to 180bpm on inclines. No more hiking for me! I’ve also had increased blackouts when going from relaxing to standing, fully fainting for the first time in my life.

Edit: Everyone telling me I lost weight improperly clearly missed the part where I said it was from GASTRITIS. And that DESPITE MY BEST EFFORTS I CAN’T GAIN IT BACK. I had no control over this and was horrifically sick through a majority of the weight loss which took place over the course of 2025. Despite this I was going on MULTI MILE WALKS to maintain exercise. I am not asking for advice. I’m warning others. I CANNOT DO ANYTHING ABOUT THIS.

TLDR: Being overweight probably isn’t great but being underweight is so much worse. Aim for the middle if your weight loss is intentional and to all my fellow GI issues folks, god speed.

So I finally managed to get a 24h pressure monitor and it came back with nyctoemeral excursion abolished and low blood pressure.

I was like "wow maybe this time my cardio will take me seriously and give me some treatment". Especially since I wake up destroyed some days, as if I haven't slept. And I often get tired during the day, like fatigued with very low activity. And my legs are getting worse, too heavy and painful when I stand for long, even if walking. And I might get blurred vision when I stand up and need to sit down again and stand slowly.

You know what? That guy dismissed me with a "your heart is healthier than an A League soccer player's heart" just because my 24h ECG was great, perfectly clean. He said that my 24h pressure monitor is also good and that nyctoemeral excursion abolished is only relevant if you have high blood pressure, which I don't have, so I'm healthy.

I also tried to ask if I might have sleep apnea but he said it's impossible since I'm not fat and I don't have those big breaths like suffocating breaths at night (confirmed by my partner).

I even asked for compression socks, I got a pair on Amazon and I feel better but not great. They are not my right size and/or model. I felt like I was asking for stuff which is not for someone as healthy as I am, and I was given this piece of paper where they recommend water and salt and compression socks to people with syncope (which I don't have).

I was not even recommended to take magnesium or electrolytes, he said only people with low blood magnesium confirmed by blood tests should take it.

Bastically it was me trying to ask questions and make hypoteses as to why I don't feel well, just for him to dismiss each and every one. I was sent home with no therapy, no prescriptions, no recommendations, nothing. Like you would do with an healthy person.

Yesterday I freaked out as I'm tired of not being believed and being dismissed with no treatment. I've booked an appointment with a dysautonomia specialist who is EDS-aware.

Do you think I could get something out of that, or will it be just another waste of money and time and hope? Did a dysautonomia diagnosis come with some good treatment for you?

If you do have a dysautonomia diagnosis and treatment, could you please tell me what were your symptoms and which treatment were you given? Does it work? Is it worthy to keep on changing doctors until someone believes you and decides to treat you?

I did it all for the hEDS diagnosis and I don't even have a treatment, just vit C and PT. I don't need just another piece of paper, I need treatment to feel better and function like a normal human being.

Adding the medical trauma alert in the subject as it does not let me pick two flairs, hope it's ok.

This isn’t supposed to scare, mostly just a rant for myself.

Last month I started having what I assumed to be a “chronic illness flare”: extreme fatigue, vertigo, migraines, joint pain, high heart rate + respiratory rate, nausea, etc. I have POTS, gastroparesis, CCI/TCS, MCAS, Idiopathic Hypersomnia, and literally every other illness that would explain this.

After about a week, I developed a low-grade fever (not uncommon for me because of dysautonomia). I decided to go to my student health center to be safe and because there was a brief moment where I felt like I might have pneumonia (I’ve had it 3x). The doctor listened to my lungs and looked at my throat and everything seemed fine. She was great and ran a bunch of labs (even for Lyme!) and everything seemed close to normal.

The next day I told her I felt like I couldn’t breathe, but only when I was laying down at night. She insisted on a chest x-ray but I genuinely felt like I was getting better. Flash forward 4 hours and I have a 104 F fever, a resting HR of 150, and a respiratory rate of 32. Urgent care sent me to ER where I was diagnosed with pneumonia (for the 4th time) AND LITERALLY SEPSIS WITH HYPOXIC TISSUES!!!!

We literally can never catch a break but also having a chronic illness makes it so hard to tell if it’s an acute problem that needs immediate attention😭 I’m supposed to have surgery for TCS in 1.5 weeks and now it might get canceled because of the recent infection. I WANT A NORMAL IMMUNE SYSTEM PLEASE!!!

“I’m not sure whether my thumbs should count for a point on the score. Even the doctor wasn’t sure how to evaluate them and gave me 0.5 points for each thumb. Basically, my thumb does not reach my forearm in a smooth/easy way: first I feel resistance, then with very slight pressure I can make the tip touch my forearm. The doctor told me that generally it should reach easily on its own, but since it does touch with a little pressure, he gave me half a point. I’d like to understand whether that makes sense. I don’t have marked hypermobility and I don’t have a diagnosis; I mostly have snapping tendons, but I was told that this is not considered a criterion.”

From the organization treating rare disease in Quebec
https://rqmo.org/unevraiemaladie/

Here the translation:

Beyond the Myths: Essential Truths

More common than we think: Hypermobility disorders and Ehlers-Danlos syndromes are no longer considered rare, affecting up to approximately 1 in 500 people in the population.

● Much more than “flexible bodies” and “stretchy skin”: Contrary to the belief that this is a benign condition limited to the joints and skin, EDS are complex disorders that can cause severe and disabling musculoskeletal problems, chronic pain, and a wide range of other conditions, including, but not limited to, gastrointestinal disorders, dysautonomia, mast cell activation syndrome, chronic fatigue syndrome, and neurological disorders.

● No single test: The diagnosis of the most common type, hypermobile EDS (hEDS), cannot be confirmed through genetic testing. Instead, it is based on clinical criteria, a physical examination, and medical history. Symptoms can be similar from one type of EDS to another. Genetic testing is recommended to detect a rare type of EDS or another hereditary connective tissue disorder. Physicians must also be aware of the most severe type, vascular EDS.

● Complex does not mean incurable: Although there is no cure, an accurate diagnosis makes it possible to implement management strategies that can significantly reduce pain and improve quality of life through care tailored to each individual.

Looking for more information about EDS?

VISIT THE RQMO WEBSITE
VISIT THE EDS CANADA FOUNDATION WEBSITE

Breaking Bias: Challenging Medical Prejudice

Our documentary addresses important biases that often interfere with quality of care:

● The “invisible” barrier: EDS are not always visible. Their manifestations vary greatly from one person to another, but they cause many symptoms and a great deal of suffering.

● The gender gap: Women are often more severely affected, and as with other conditions that predominantly affect women, their symptoms are frequently minimized or attributed to psychological causes. Not being believed creates distress and trauma, which can intensify pain.

● The “trend diagnosis” trap: Increased awareness around the world leads some people to dismiss EDS as a “trendy” or “catch-all” diagnosis, when in reality, more and more people simply have access to reliable information and are recognizing their symptoms.

Moving Forward: Paths Toward Solutions

Our documentary also highlights concrete actions to improve recognition, diagnosis, and care related to EDS:

● Improve medical training to better recognize joint hypermobility and systemic manifestations that may point to all types of EDS.

● Establish multidisciplinary clinics and integrate EDS-related care into physical rehabilitation centres.

● Encourage physicians to actively listen to affected individuals and to collaborate with them and their families.

This Canadian documentary was produced by the Regroupement québécois des maladies orphelines (RQMO) in collaboration with the EDS Canada Foundation. It was directed by Gail Ouellette, PhD, genetic counsellor and EDS expert.

Hey everyone. I have a confirmed POTS diagnosis and have been told I experience hyperadrenergic states. I’m currently spiraling in a moderate nervous breakdown and feel entirely isolated. I feel like my anxiety is a severe, untreatable anomaly, even though I know a lot of it is physical.

My boyfriend is a firefighter on 24-hour shifts (+ paramedic school), and my separation anxiety on the days he is gone has become incapacitating. I live alone, which makes it worse. When I panic, I get severe derealization (feeling high, completely detached, like nothing is real or like I'm losing my mind) and my heart rate stays pinned at 120 BPM just sitting on the couch. I also get severe pressure in my head, neck ache ("coat hanger pain"), and ear fullness. I tried getting back on Sertraline recently, but it completely backfired—gave me a horrific adrenaline surge and severe derealization.

I recently realized I have been living in a severe chronic water deficit (only drinking 16–30 oz a day) and a calorie deficit (~500–1500 max, I’m 5’5 and 115 lbs) for months or years. My blood sugars test fine, but I know my liver is dumping cortisol/adrenaline to keep it that way. I tried drinking electrolytes today, but it took me all day because the concentration made me anxious/nauseous.
I’m trying to do prerequisites for nursing or sonography school, but this breakdown is making me question everything.

Propranolol doesn't feel like enough to stop these severe chemical terror dumps. For those of you with hyperPOTS, what treatments worked to turn off the central adrenaline faucet? Have you tried Guanfacine, Clonidine, or Ivabradine? Also, did slowly correcting a chronic fluid/calorie deficit significantly lower your daily surges and lift the constant derealization?

Any success stories from people who got through clinicals or handle first-responder lifestyles with hyperPOTS would mean the world. Thank you!

Woke up with blurred vision in right eye. I can still see colour but everything is out of focus, and my peripheral vision seems smaller. Very mild 2/10 eye pain, and a pressure like sensation. Is this an EDS thing I should be concerned about or should I just sit with it? Not too fussed, body is always doing weird things but wanted to make sure it wasn't a sign of a more significant complication. Vision has improved over past two hours but eye still feels weird.

My job is banning acrylic, gel, tips and gel polish

I’ve never been able to wear fake nails or even regular nail polish as acrylic lifted off after a week and regular polish doesn’t stick due to my bendy nails and EDS.

My nails are thin, bend easily, and will rip/break right where nail bed ends if there is any growth. I also get a lot of and bad hang nails/skin peels around my nails. They are even worse if they get wet.

I found a lady that did polygel fake nails and that worked well for me! And then I found builder gel worked even better. I still have issues and breakage/lifting of product but I can go 2-3 weeks normally. Anyway, now that they are banning any of these products—does anyone have suggestions products or how to keep anything on my nails to help reinforce them?

I finally didn’t have nails looking so trashy, but policy goes into effect June 1, so I need to figure something out.

I’ve used color street nail strips in the past and that worked the best of any other polish, but I still had issues.

Has anyone found anything else worth trying?

Thanks for reading

specifically if you haven't had a great experience with him. i won't talk my shit just yet but i need to know lol