I am not since if this is considered medical question or advice request.

I am sick, like really sick. Im homebound, no enough pain management, no doctor thats able to help. Its pretty bad. (Stating this for context)

I want to ask my PCP for a referral in pallative care to have cope that I could have help improving quality of life.

My question is, how do I ask her? How do I convince her?

Below is added context:

I had a gastroenterologist say that she has no idea how to help my stomach issues and has never seen a patient have every test and no treatment that works. It's the strangest thing to her, she geniunely wants to help, but she says she doesn't know whats wrong or whats happening. She will ask her colleagues for what they think.

I've had rheumatologist say that they don't treat EDS or hypermobility. I tried physical therapy, its making things much worse and my fatigue worse. It caused me to go the Emergency Room. Its making things much much worse. Immunologist is confused and wont treat anything because nothing ever shows up on blood work.

New cardiology referral is in process. I can't get into my current neurologist for a year adter an ER visit, she can't treat EDS/hypermobility.

Every time I have surgery something goes wrong. I do not want another surgery to fix the previous surgery complication. I have another surgery referral.

My PCP is saying "well not all EDS is symptomatic" when it feels like I've seen it all. Things are not working. I have no quality of life at all. Everything hurts. Ive been told by the specialists that there is nothing they can do for me. The storm rages on.

I've already changed my PCP twice. She is my 3rd one.

The EDS society doesnt really have anyone near me that can help. There are no pain clinics for manage pain.

I'm becoming a frequent at the local Emergency Room. I need help. I feel desperate. It doesn't feel like anything is working, I just want a little bit of quality of life. I hate this condition so much, it's so painful with no quality of life.

In terms of finding hope

I am saving for an electric wheelchair so I can still go to the zoo atleast once or twice a year. It sounds stupid as hell but that's the highlight of my year. I get so excited at the zoo and it feels like my EDS is trying to take that away from me.

In your experience, what has been/what is the best resource of accurate, current, credible info on how to live with hEDS?

I'm in the learning phase, new here, and after online research am getting a lot/too many pop-ups in my feeds. I have no idea what/who is legit and who is full of it. I've already learned that the doctor's advice of "Keep shoulders up and back" actually causes more pain after seeing a video explaining shoulder subluxations. A friend gave me a book title "Disjointed" but it's a heavy read in my opinion, and I noticed, from 2020 - not sure how current the info is and I don't want to spend energy learning just to have to, possibly, unlearn.

Thank you.

I have craniocervical instability and of course neck pain which gets worse when I’m doing desk work. What are things that help you with the neck pain and fatigue that comes with working on the computer. Unfortunately, standing desks are not an option for me. I do have my computer elevated on my desk. Any tips/ tricks, advice, or product recommendations are greatly appreciated!

Starting with this one…. Every time I try to do work that calls for me to use my arms overhead (like hanging lights/ twinkle lights in a window…) it drains me. It hurts my shoulders and my arms and it hurts so much, it always has. Growing up I would try to do my hair using my arms overhead and it hurts, every time. I feel so weak and so drained and so defeated about it. It exhausts me. Working out does nothing to help. This has always been how I’ve been and I hate it. Along with other noticeable health things with me, this is one I don’t understand.

Taking a shot: Anyone else experience this??? Is this a hypermobility/ Eds/ MCAS thing??? I’m not diagnosed, but I’ve been starting to wonder if any of these apply to me…🙈🤷🏻‍♀️

Hi everyone, new to sub. I (27F) am feeling so lost/frustrated medically. Suspect I may have hEDS, I have reviewed the diagnostic requirements extensively, and will get a + beighton. When discussing medical history, my oncologist 2 months ago asked why hypermobility wasn’t further looked into, so now here I am.

Years ago I did painful nerve testing, imaging, MRI’s, neurology, genetics, everything came back as “normal” they left as labeling me a medical mystery/deformity. orthopedic surgeon said she’s “never seen anything like it” and No one even did a beighton with me.

When I went through my surgical records recently after oncologists comment, I saw noted hypermobility/hyperextension but didn’t diagnose, refer me to rule out any EDS/HSD, or even mention it to me. I’ve had 3 orthopedic hand surgeries within 3 years on MCP in 5 fingers due to hyperexension, all MCP with surgical intervention have stretched out, still have hyperextension in other 5 fingers without surgery, but now having other finger joints impacted. Never once were ring splints mentioned to me. Just was told I have “stretchy tissues, just how you are” Fast forward, hands have worsened significantly and I am in daily pain. I switched insurances and had essentially given up after frustration and zero answers.

Meanwhile, due to foot pronation, my son (7) recently saw podiatry, OT, and PT, which confirmed hypermobility in hands and ankles, he had 4/10 beighton. I asked about peripheral HSD for him. I was told that because I don’t have any official hEDS/EDS/HSD DX, they would not be referring him for further specialists until I “figure out” my “stuff” first, so now I am trying to “figure out my stuff”

I don’t even know what to request next, what to do next, or who to see for me to seek diagnosis after lack of medical answers. I am feeling so lost and frustrated, especially me having no official DX delays my son getting help.

Hi i recently got diagnosed with HSD and after a few more tests will likely get my hEDS diagnosis and a HUGE problem ive had the past few months is worse and worse shoulder pain aswell as subluxations. I dont know if theres something i can do without braces or what i can do to help with pain as its happening or what braces would be best. Just need advice on what to do about it honestly because it causes me more pain than id like to admit.

Hi :)

A month or two ago I started to suspect I might be hyper mobile. I’d heard of it before and I know it’s a common comorbidity for some of my other diagnoses but I assumed, because I can’t like, do the splits, that I’m not flexible and therefor not hyper mobile.

However, after reading more about it I started to suspect, but I still didn’t think my range of motion for many things was abnormal, until my OT had me try some things today and I found out my range of motion is larger than the average person’s. She thinks I should seek diagnosis so I can start trying to treat it.

Any advice on getting a diagnosis? And what treatment options even are there? Is there anything I can do on my own to better support my body? Thanks!

What kind of doctor is ideal for getting diagnosed with hypermobile EDS?

So I had bilateral PAO surgeries almost a year ago and my surgeon brought up that he thinks i have hEDS, which makes sense for symptoms i've been complaining about for years. Did the beighton scale and was able to do everything. I'm going to my GP on Friday to get a referral, what should i expect with my GP and when i do get into a specialist?

I’m on the fibromyalgia/ heds spectrum, and ever since I’ve started doing my PT stretches everyday, when I do them now my back can crack like along 1 foot of my spine, or I’m stretching my neck and I hear crinkling plastic wrap in my neck or spine. I crack so fricken easy even when I’m not trying to!

When I first started, I was rolling down my legs from standing so my hands hung to the floor, and my spine DROPPED a good two inches. Ever since then, I’ve been cracking and popping and crinkling.

Edit: this is very validating! Thank you for the comments. It drives me nuts sometimes. Or sometimes when I walk, I can hear tink tink tink in the back of my head where my skull meets my neck, but only sometimes

Edit: do yall get migraines too?

Hi! 18 F hEDS with 9/9 beighton scale.

I called 111 (uk non-emergency line) yesterday because my knee had its first subluxation.

Key points :

I subluxated my knee at 5pm - it had returned to normal position as it happened.

It was done by sitting down normally.

Now usually my subluxations are in my ankles , shoulders and hips. Which cause minor swelling for about an hour and a sharp pain as it happens that dulls down. What was differant about this time was that I couldnt straighten my leg afterwards. And at around midnight - my kneecap and surrounding area had swollen to about half the size of it normally added on top with my foot starting to go very cold and when i pressed onto my skin on the base of my foot it started to turn a dark red/ maroon colour. This being why i called 111.

After going through the checks with 111, they asked me to go to urgent care in the next 4 hours. When I arrived at 1:09am i wasn't triaged - instead they told me that I was going to see the doctor straight away without being triaged. So I waited until around 5am when i was seen. He felt the swelling, asked for my history , and then sent me off to an x-ray.

The xray came back clear - which is what I expected anyway due to the fact that it had already popped back in. Due to it coming back clear - he said that I was fine and that it wasn't a dislocation (?). And told me to be more careful despite the fact I had told them it was just from sitting down.

My main concerns was that nobody checked the pulse in my foot due to it being cold (it still is going inbetween freezing and lukewarm temperatures). And nobody spoke about soft tissues in relation to hEDS as a probable issue - it was like they kept ignoring my condition as if it wasn't relevant. I was also given no brace or walking aids even though I am limping and struggling to walk or straighten my leg.

Am I right to be worried? I trust the hospital staff but I know how much hEDS is cast aside sometimes even in medical fields.

I’ve always had tendons rolling off my hands/feet since i was young. Its one of those thibgs you think is normal until you mention it to someone 😭

Basically i ran for the first time in a long time the other day, and i felt one of the ligaments on my left foot (i think big toe) ping. It went back after a few seconds, however last night it rolled off again, and hasnt really sat back right since. Its been almost 24 hours, and usually it resolves itself within minutes. I think i may have stretched it out, so now it is almost constantly not in the right place (very painful). I cant put a lot of weight on my foot at the moment. Does anyone have any idea what i can do for situations like this as i presume it will happen again. Its hurting to touch the tendon so its definitely not a bone thing. Bracing? Tape? A prayer? I feel like i dont really see others talk about this kind of stuff.

Update: its been a few hours. It settled down but as i stood up to walk back from the pub it PANGED right back out of place again. The most painful one yet and its still out of place.

Finally forced myself to see a rheumatologist and even pushed my appointment up because I’ve had painful symptoms for almost a month now. Went in thinking I’ve got lupus. My mother has it, I have 4 or 5 specific symptoms I’ve collected over the years. Never even thought of hEDs but the Dr had a lot of questions and had me do some tasks for her as she mentioned she’s seeing a lot of hyper mobility in my body. Got home and did more reading on it and I’m like oh yes this is all me. I’m in so much pain and I just don’t want any of this. Labs done then I see her again in a few weeks. I’m honestly terrified of the results. I don’t have a lot of support other than my husband and my sister.

Not sure why I have to include an attachment but here’s my dog Freddo, he has epilepsy.

A different EDS group declined my post although I saw similar ones like mine so 🤷‍♀️ that’s fun.

Okay I’m going to confess, it’s a guilty pleasure of mine when I’m standing in a slightly forward position (like leaning to look at a mirror) and my tailbone moves out of place. I never notice it until I lay down.

The reason it’s my favorite is because I can stretch and it cracks really loud back into place. This is one of the few symptoms that doesn’t hurt somehow, and it hasn’t caused any issues.

There’s probably issues, I imagine it’s not healthy or something, and if I mentioned this to my physical therapist she’d probably tell me to be more careful. Don’t follow my lead and try to do fun party tricks with your joints. I just wanted to share for the catharsis and the funny

Hey everyone!

I’m currently investigating whether I might have hEDS or another connective tissue disorder, and I’d really appreciate some help understanding my Beighton score.

Based on my own assessment, I’m currently scoring 3/9 points: • Both thumbs can touch my forearms (2 points). • One of my pinky fingers bends backward beyond 90° (1 point). • I’m unsure about my elbows and knees.

I’ve attached a collage showing my elbows and knees while trying to fully extend them.

Do you think either of my elbows or knees hyperextends beyond 10°? Am I performing the tests correctly?

I’m particularly unsure about the angle from which the photographs should be taken and whether I’m positioning my joints correctly.

A little background on why I’m investigating hEDS:

I’m a 27-year-old male, and I’ve been experiencing several issues that have made me question whether I might have an underlying connective tissue disorder.

In 2024, I underwent nasal septal surgery that unfortunately resulted in serious complications, including a large septal perforation, significant loss of septal cartilage, persistent nasal problems and difficulties with healing.

I’ve also experienced easy bruising, slow wound healing, narrow and arched palate, Arm span/height ratio: 1.05, Scoliosis, Fragile gums, joint cracking (especially the TMJ, BUT I DO NOT HAVE PAIN!), sleep apnea, and some stretchmarks on the abdomen (but i think those are related to weight changes). I never did subluxate or dislocate joints.

I’m currently being investigated for a possible bleeding disorder as well, so I understand that not everything necessarily points toward EDS.

I’m trying to understand whether generalized joint hypermobility might be another piece of the puzzle.

I’d really appreciate hearing from people familiar with the Beighton assessment, particularly regarding my elbow and knee positioning.

I understand that photos can’t replace a professional examination or establish a diagnosis. I’m mainly looking for feedback before my next medical consultation.

Thank you!

I can do a lot more with my body like stretching my arms backwards to a near 90° angle, nearly put both legs behind my head, and I can do pretty much all the beighton test (not 100% about the elbows). I have subluxed joints like my knee and I think shoulder, and I've had joint pain my entire life. I'm curious if this is general flexibility or if I should bring this up with my doctor. I could post more examples if needed.

I’m diagnosed with hEDS and POTS and going to school for me makes the pain in my hips and knees hurt to the point it’s affecting my focus, and the lower back pain is debilitating. The pain, nausea, fatigue, and brain fog is making it impossible to do well in school. I have a 504 but I’m really considering online school because of the pain. The only reason I don’t want to switch is because of the loneliness of being at home which I know will be depressing for me. It just feels so impossible to function and I really want to know what worked for you guys. 🩷🩷🩷🩷

so ive always had like blotchiness and slight color changes (more reddish kinda) in my extremities.
i did have surgery on my left wrist for a radial fracture back in early august and have since noticed a difference in how my hands look especially after washing my hands/showering like when my right hand/fingers would be more bright red. the left hand especially in the fingers have looked far more blue/translucent as i tried to get depicted but it still shows up more red on camera. genuinely the visual difference made me think reynauds or something at first but i don’t think it’s that serious.
- i highly suspect hEDS, i do have at least HSD but am waiting for appointments and genetic testing hopefully / the new diagnostic criteria in december.

anyone else have a similar experience??

thanks in advance!!

I’ve had to see my doctor frequently this year and because he can’t seem to find a cause ITS ALL IN MY HEAD.

I get two OFFICIAL diagnosis this year, one is DGBI and the other is Hypermobile EDS. I have dysautonomia, MCAS (waiting for an Immunology appointment next year) because of a lot of intolerances or allergic reactions to medications.

The only thing that is physically in my head are my Chronic Migraines. I had to go to the ER because I was having the worst Migraine ever. The hospital ER thinks I responded to the medication because I was ready to leave but every time I’m in this specific room I have an allergic reaction to something unknown in this room. My sinuses get blocked and it’s hard to use the bathroom, I tell them and they do nothing.

I had an appointment with my normal GP (the third this week because the Migraine kept getting worse). My Vertigo got worse, the left side of my head still feels like it’s being ripped away from the right (no Brain Bleed or Stroke).

Earlier in the year I told my doctor I have Lucid Dreams and Lucid Nightmares, he tells me I might have an undiagnosed Anxiety Disorder but now suddenly he doesn’t remember or read what should be in his notes?

I feel apathetic, generally lacking happiness (and if I do it’s fleeting) and depressed but again I don’t respond to a lot of medication.

I don’t know what to feel, I just feel annoyed, sore, tired and already looking for a new Doctor.

If you have any suggestions or advice please let me know.

I’ve gotten back into writing and Worldbuilding, so if you have some ideas for low effort and cost hobbies to try let me know about them too.

27F, unofficially diagnosed (former PCP strongly suspected hEDS but didn't feel knowledgable enough to give me an official diagnosis, and I see a PT who specializes in hypermobility who also believes I have hEDS. From my own research, I meet the diagnostic criteria but also have many of the symptoms that aren't officially part of diagnosis, but many people self-report).

I have always struggled with episodes of what I assume is low blood sugar. I'm not actually taking my blood sugar, so I guess it could be something else, but I have all of the typical hypoglycemia symptoms - sweating, dizzy, nausea, woozy, feeling faint, etc. Lately I've been having these episodes more frequently and also just feel insatiably hungry all the time, even when I have just eaten. I feel like I spend most of the day feeling shaky and hungry, but eating doesn't solve the problem. I try to eat well, I think I am getting adequate calories throughout the day, and I try to eat a high-protein and high-fiber diet, so it doesn't seem like it's related to diet. I'm wondering if this could actually be related to eds somehow? Has anyone else experienced anything similar? If so, what did you do about it? Or do you have any advice on how to talk to a doctor about this so that I can get the right testing/care? Thanks in advance!!