As the title says, I was on a train to New York during the peak hours and was told by the conductor to by a second ticket because apparently you cannot purchase a Disabled/Medicaid ticket during this time. Which is so incredibly frustrating and hurtful and as a policy is just so frustrating. Big sigh.

After my most recent surgery my surgeon said it was rare to see such a build up of crap around my finger tendons on both hands (and other places) that he sent a biopsy to test for amyloidosis.

Has anyone here been diagnosed with amyloidosis? If so what is your experience with it? How bad is your treatment?

This was at London Gatwick airport. Cool to see the increasing awareness.

Would love to hear about your experiences and whether you had any complications such as a leak from the procedure itself.

Every single night this week I’ve gotten home from work only to notice that the bottoms of my feet, backs of my legs, and leg arm and having an allodynia flare. It feels like getting a sunburn but not being able to move. The burning and throbbing is so bad. I have gabapentin to “help me” when my nerve pain is bad but it doesn’t even touch it. It only prevents the baby everyday nerve pain not this heaving, aching, soul crushing pain.

I can’t even sleep with this. I’m so tired. I’ve slept 4 hour max the last few nights because of this. Heat makes it worse. Cold makes it worse. Touch makes it worse. Air hurts. Clothes hurt. It all just hurts.

I scheduled with my PCP to talk about this and my maybe my hEDS misdiagnosis (cEDS? clEDS?!). Not till January 15. So I’ll just suffer till then? Cause who’s gonna help me with this nondescript pain that comes and goes when they wouldn’t even give me a single painkiller after my botched, tortuous emergency spinal tap literally marked as “traumatic” in my medical chart.

Can anyone enlighten me on what these feel like for them? I think I’m experiencing them most days but am just curious what they feel like for everyone else. The only way to describe the pain currently is that it feels like my my ankles are being pulled away from my legs as I lie on the couch. 😭

I'm 27M and I've always been hypermobile. Fingers go back, thumbs to wrist, palms to floor, stretchy skin, etc. When I was younger I was told I had ligamentous laxity. I've had mild joint pain for years but recently my joint pain has gotten so much worse. To the point I can't fall asleep. I learned about EDS and year or so ago and I really believe it's a possibility. My mom and grandmother have very similar symptoms as well as some others associated with classical EDS. So I thought with all of these maybe there's something to this.

For a bit of context I'm in the military, so I don't see one specific primary care manager. I book an appointment and whoever I get is about who is soonest. Which is often 2-3 months out.

I wanted to talk to a doctor finally and ask if this was a possibility. I was afraid they wouldn't take me serious because "I read it on the internet". Doctor came in and scored me a 4 on the Beighton test. But he didn't do half of the things I read were included. He checked my pinky fingers, thumbs (the two I passed on both sides easily) and my elbows and knees. He didn't actually test my knees. He asked if they can do that and I said I don't think so. Looking back they can do that. That's it. I tried to bring up other things like the pain, the palms to floor, scarring, stretch marks, and even family history. He got annoyed and asked "Why do you want this diagnosis? It doesn't matter if I diagnose you or not. The treatment won't change and no specialist will see you."

I've never chased a diagnosis for anything. I'm not looking for meds or PT or disability or anything. I just want validation and an understanding of why I have this kind of pain. I also want to have kids and I know it's genetic, so I'd like to know for their sake as well.

He was in the office with me for maybe 5 minutes. He asked if I had any other questions and before I even finished saying no he was gone.

I was nervous to ask about this, and to be dismissed so quickly hurt a lot. So now I'm just existing with this pain and I still don't know why. So what the hell do I do now.

I have always loved massages but I was never sure if they were actually helping anything tbh. I recently moved house and away from my regular masseuse and I went to a new one yesterday who does a type of massage called neuromuscular therapy, and although it was very light there were still some sore spots especially on the back of my shoulder by my armpit, and at the base of my neck.

Anyway, I felt like shit in the evening and a migraine came on right before bed and I've been exhausted all day and now I have another migraine coming on D: does anyone else feel like shit after a massage? I feel like it just irritated my nervous system and now I'm paying for it when it was meant to help!

I'm working with a pain clinic and we are discussing pain relief options. I wanted to ask the community if they have personally had an ablasion to their nerves that cause them issues. My Dr is discussing a facet spot in my spine, that we have already poked with epidural steroid shots. I personally have noticed it does help some of my pain, but my pain comes back quickly. I also am not positive if my chronic lower back pain is related to ehler danlos, but i wanted to see how others have responded to these types of treatment. I do feel like i am inclined to try this ablasion, because I am sincerely tired of this 13 year long battle with lower back pain. I'm looking forward to reading about your experiences in your journey to feel better, in hopes of inspiring me to keep trying to find the answers with my doctors. I've been gaslit by many, and it's hard to keep being optimistic that things get better.

Extra info: a trial of sorts survey was made by a peer who asked her followers who have had a steroid epidural injection for their pain, and out of the 190 survey takers, majority said they were unsure if they would recommend it; not scientific, but it seems like very much unsure overall.

Disclaimer: I’m just in a flare - not in any medical danger and not seeking any medical advice. It’s just cathartic and soothing to put pain in words sometimes, especially when you’re angry at it

——

Definitely a 7, getting close to an 8/10 level pain. Distressing, panicky, pathetic grade pain. It’s fucking cruel.

My spine is making my ears burn and my throat tight and my eyebrows quiver. This “knot” in the uppermost crevice of my neck and right shoulder is a plastic bead with a serrated hole, threaded through a string of raw and traumatized nerves. Buried to the bone behind 30 years of swollen muscle and failing joints. Slippery beneath my fingers that buckle and sublux when I finally press hard enough to reach it - for a moment of relief - or validation. My eye waters, my legs are restless, I can hardly hold up my own head. And when it passes, and it will, I’ll harden and wonder if it was ever real at all.

My husband and I have talked about wanting kids relatively soon but, with EDS, I feel like that is a decision that should be made under the care of a doctor. I scheduled a preliminary appointment with an OBGYN to get my (expired) IUD taken out next week, but I also want to ask her about what I should expect with pregnancy and EDS. I don't have an established relationship with this doctor, I'm not currently pregnant, and I feel "silly" for wanting a doctor's opinion now. Most people don't even have an OBGYN until after they're pregnant, right? Ugh. Am I crazy for scheduling an appointment to talk about "what ifs"? What do I even say to start this conversation?

For additional context: I'm 25 years old, I've been married for 2.5 years, my husband has offered to attend the appointment with me for moral support, I have mild/moderate hEDS but I'm under the care of a pain management doctor, and I'm on psych meds that may need to be adjusted for pregnancy.

So my depression has gotten worse as my physical health has gotten worse. I’ve also found that my mental health is largely dependent on my menstrual cycle, so much so that for 2 weeks out of the month I am much more depressed than I am at other times. That’s ~50% of the time!!! And my #1 symptom of depression is losing interest in EVERYTHING.

Work. Video games. Creative arts. Watching TV. Hanging out with friends. I don’t care about any of it right now. Nothing sounds fun, nor do I have the motivation to do anything actually productive beyond the bare minimum. I’m just isolated in my room because I don’t want to interact with my roommates and EVERYTHING pisses me off. I’m miserable, and I know I’m miserable to be around and I will be for at least a few more days.

I AM working on getting a therapist (November woooo!!!) and I’m working with doctors to address other matters, but what is your trick to getting over the lack of interest? I’m just stuck in this stupid limbo where no entertainment sounds good and yet I don’t want to work.

So I got surgery little over a week ago and have been dealing with a stuck shoulder since. Part of it has been from cough and bracing the way I've needed to for my port site not to hurt and I imagine some of it is from how they had me positioned for the procedure too, but my shoulder feels like it's completely over shoved into its socket and it hurts like a mofo. I am wondering who I should have take a look at it. I'm on a muscle relaxer from my pcp so it may eventually just lossen up on its own but at some point I'm gonna need to get it looked at if it doesn't.

The question is who would be best to have take a look at it? Pcp? Urgent care? Chiropracter? ER? Do I need an ortho? In your experience who have you found most useful in situations like these?

Hi! I have hypermobile ehlers danlos and I’m 22 years old, I just received a 500$ wellness spending allowance from my workplace and I was looking for suggestions I could spend it on before Dec 31 when it expires. I currently don’t require any mobility aids, I’m just really not sure what I can spend money on so quickly.

Hey everyone,

I’m Erin, 55, and I’ve been living with EDS for a long time, alongside POTS, MCAS, and the uninvited guests of autism, ADHD, and CPTSD. My health has taken a major nosedive over the last three years, and it’s like life decided to go all-in on “extreme mode” — my nervous system is fried, and even sleep feels like a gamble. Anyone else end up in a fetal position more often than they’d like to admit?

This year, I finally had to face facts and bring in a caregiver, split by my kids, and as much as I try to accept my neurodivergence, the guilt hits hard. Even the simple things, like brushing my teeth or having a consistent sleep schedule, can feel like mini-victories.

Navigating through financial issues, CPTSD (thank you, medical trauma and rejection sensitivity), and a daily struggle to manage my mom’s needs on top of mine… it’s overwhelming. Just a few weeks back, we spent months basically living in boxes, barely able to keep up with basic tasks. The isolation? Real. Having a carer helps, but even small social interactions feel draining after years of housebound life.

I’m here for solidarity — any tips, routines, or just a shared moment would mean the world. How are you all holding up with the ever-mounting stack of diagnoses?

I have been dealing with chronic joint pain that has progressed over the years. I was diagnosed with Heds last year after being sent to a rheumatologist due to chronic joint pain and hypermobility. Since then I've had a hard time navigating treatment. Physical therapists keep discharging me after a few sessions even when I'm still in pain and have injuries. When I've brought my pain up to doctors they don't have answers and seem skeptical that Heds is causing it. I'm confused because I know Heds does cause pain and I have no other known disorders that could be causing these issues. It's gotten progressively worse, I went from pain in two joints to now having issues in my shoulders, ribs, knees, hip, and ankle. And sleeping has become incredibly painful as a result since most positions hurt my joints. Looking for advice or just support/validation.

Halp lol

Got my diagnosis yesterday and my rheumatologist starting talking about ‘high intensity cardio’ and crazy things like that.

At the moment, I’ve been so fatigued that I can only leave the house to do errands maybe once a week and even going to the shop knocks me out.

Has anyone ever been in a similar situation and managed to work their way up? Any advice would be appreciated!

I am a junior in college, and recently returned to campus after taking a year off for a huge flare that lead to my becoming a wheelchair user and getting diagnosed with POTS, MCAS, etc. on top of hEDS which I've been diagnosed with for years. I am taking classes virtually this quarter, so I don't even have to show up in person anywhere, but it's still so much harder on me than it used to be. Between managing physical symptoms and brain fog, I can hardly understand or remember anything I try to learn. Being disabled is a full-time job as it is, and school on top feels impossible.

I am starting to wonder if maybe I shouldn't have come back, especially because my college won't allow me to take my classes virtually anymore starting next quarter, and I really don't think I could handle showing up in person to lectures several times a week. I receive accommodations, but they are not very helpful, and neither are the staff at the disability center. To those who have gone through this before me, how did you do it? Accommodations? Caregivers? Other help I haven't thought of? If you decided to drop out, what helped you decide that was the right thing to do? Any suggestions would be greatly appreciated because I don't want to drop out, but I also don't think I can keep doing this the way things are now.

I have suspected EDS or HSD and just about everything I eat causes my nose to run a lot. Especially with hot food, but I've also had it happen occasionally with cold food.

Does anyone else have keloid scars? I’m very white (lol) and it’s very uncommon in those with fair skin and I was wondering if some of y’all’s scars do the same thing mine do, they widen, raise, and are severely discolored. I’m f17 and was diagnosed last year in december of 23. I would attach photos of my scars but I don’t wanna get into any trouble seeing as this is my first post!

TW: blood tests

I thought this might be helpful if anyone here struggles with bad veins.

I had a lot of blood tests🩸today to ascertain what is going on with my immune system. My routine labs usually come back “normal,” as is common with those who have POTS/EDS/MCAS etc., but it is important to keep track and the specialist wanted some more information. My biggest fear are blood draws and IVs, because I have bad veins due to my EDS 🦓 but I have come up with a system to make it doable. I still get terrified, but I can handle it. I use anti-anxiety medication 💊 and EMLA numbing cream. I can still feel the needle go in, but it seems to help a little bit. It’s not about the pain for me, it’s more trying to get my brain 🧠 not to register what’s happening. I get clammy, feel faint, nauseous, and my blood pressure drops while my heart rate skyrockets. It’s extremely uncomfortable. I also request to lay down which helps a lot, and they use butterfly needles. The skill of the person drawing makes all the difference, and today the woman was really good. She got it done FAST, 7 large vials.

I have been trying to do quick 10 min walks after meals to help with digestion, but I feel like a wet noodle.

I'm in the pits of hell cuz I've been using alcohol to numb so I can sleep and last night it didn't work so I've only slept like 7 hours in the last couple days 🧍 I was wondering if numbing was different with EDS or anything and what to do about that

I'm looking for EDS friendly exercise videos that others have had good experiences with, preferably Pilates based or something similar. There are so many that are labeled EDS friendly, but anyone can slap that tag on a video and I'm nervous about hurting myself. I've been to PT several times and it's never been the best for me (even with the only EDS certified therapist in the area) so I'd love something I can do on an exercise mat at home. If anyone has any recommendations I'd really appreciate it!

i had to give up skiing two years ago due to excruciating pain in my ankles when wearing ski boots/when i was on the slopes. i’ve had pain with skiing since i was little, but i only received my hEDS diagnosis this year. my family always thought i was sensitive or something so i pushed through the pain (plus i do enjoy skiing a lot!)

i really miss it and would love to get back on the slopes this year, i just don’t know how to accommodate the pain. staying on easier slopes i can do, but even so the ankle pain gets super intense. i’ve heard about custom ski boots, but i worry i’ll spend a ton of money on something that doesn’t work. people say snowboarding might be less painful, so i can also try that out too. if anyone has any tips or advice i would greatly appreciate it!

I’m a hoodie in 80 degree (Fahrenheit) weather kinda person. Needless to say I get cold really easy and have a super hard time warming up. I keep a space heater under my desk at work and a little microwaveable heating pouch I crocheted with rice inside in my desk. I layer up in the mornings with beanies and gloves and jackets but I’m still usually cold. So I was wondering what your guy’s tips for staying warm as winter approaches?

So, after a long history with mental suffering, extreme depression, chronic pain, random fainting and many other discomforts, at 2020 I was finally diagnosed as an autistic woman - kinda out of the blue after I got a good amount of money and could afford to go to a ear specialist and neurologist for these other reasons cited. By 2021-22, my fatigue and pain were getting extremely debilitating. Especially after the pandemic when I could stay at home without getting repressed by my father who was, well, autistic too but pretty abusive. Getting back to doing chores was painful, more than the usual amount. My then boyfriend finally said to me: hey, it’s not normal to feel pain all the time. So a few autistic friends said that I should look into EDS. I had one genetics appointment, scored the Beighton Scale, told him about my history with crowded teeth and bleeding gums, lactose intolerance, PCOS, high cholesterol while being vegan lol etc. He gave me a lot of tests but none of them genetic ones because he said very often it’s too expensive and may not demonstrate things accurately. But as time went on, I couldn’t afford mentally and financially to do all the tests he told me to.

But now I went to an orthopedist and general practitioner whom listened to all my history and reviewed my then available paperwork, and they said that I definitely have hEDS. However, I’ve pretty recently found another geneticist I can go for free, but I feel like I didn’t really express myself well on the first consultation. He once again measured my Beighton Scale, asked about my pain and luxation/subluxations history, on which I’ve had and still have a few… I told him about the autism, and poor interoception and spatial awareness/balance. But I’ve been thinking about making a power point presentation featuring my full history, on a timeline, alongside family history as well and tests - recently I’ve been trough a double knee MRI and basically both of them have cartilage issues and the right one is a total mess of it’s own.

Am I being reasonable? I’m scared that if I don’t explain everything by detail I might not an official paperwork of some sort, and that would be very important for me to get a few adaptations on my job, health insurance, etc.

What do you guys think about it? A presentation is a bit too much?

EDIT: I am in the Southern Wisconsin (South East) area.

Seeking diagnosis. Scheduling with genetic counseling appointment in the near future. Worried about if I should look into disability insurance prior to any possible diagnosis/genetic counseling? Does anyone have disability insurance, thoughts on it, advice, or even recommendations for insurance companies?

Hi all- long time lurker. Read SO MANY posts by searching and I've found so many people resonate with being sicker with viruses than our muggle counterparts (ie the rest of the family)

I have been searching for YEARS why I get so so ill for so long with the simplest of viruses. My respiratory consultant (fragile allergic asthma) has done lots of immune tests and so so many blood tests repeat Vaccines and all that and he is so kind and so patient.

It's always viruses that trigger the asthma (and allergies but I'm on so many meds for that it's under control from that side).

The TLDR is

• is there formal evidence or research linking extreme and prolonged response to viruses and EDS
• or perhaps other things I could look into with the doctors of where to test and what medication to try next if there is nothing formal.

Trying to decide do I accept this is what it is, because of eds, or do I keep searching.

If given a magic wand I'd want yk just have a normal human response to viruses, such as be ill for 24 hours then be better.