r/eds

I just need to vent about what happened an hour ago. I been seeing pain management dr for couple months. I am super sensitive to medications and tend to hit the "rare" side effects. They put me on a few and I had severe reactions causing me to end up in ER. Today I saw them as a follow up and they told me to seek psychological help and there was nothing else they could do for me. They never seemed to believe me on anything either. I am constantly at 7-8 pain wise and they rolled eyes. I am good at hiding my pain. I have been in therapy and my mental health drs say the chronic pain is making my mental health worse. This is an endless circle. I am starting to feel more and more alone with all this.

I am a female(57) with Heds and I have lost three inches in three years and lower back pain that continues to worsen.
My pcp said this is normal. The Toronto eds clinic specialist said my back exray does not show fractures etc to explain and “I must have bent my knees when height was being measured.” Lmao.
I was 5’8” and am now 5’5” no bending of knees (I wish).
When I look up information on this I can’t figure out what kind of specialist to ask for? A rheumatologist or a spine/back specialist?
I also have shifting of the lower back and pcp told me that was not possible.
Anyone have something similar or have any ideas for what to do

My wife has been diagnosed with hEDS and for the past three years she has been plagued by chronic and debilitating back pain.

We have seen numerous specialists and consultants and spent a fortune on private medical care. And overall nothing has improved.
Nobody has even been able to give us a concrete cause for the pain.

We have done our own research and been dismissed by doctors and we have tried so many at-home remedies I’ve lost count.

When we got married I told her I would support her and protect her and I don’t know what I can do anymore.

We have tried the following with no success:
- facet joint steroid injections
- radio frequency denervation
- epidural steroid injections
- medical marujana
- opioid painkillers
- low dose naltrexone
- chiro and physio
- a spinal cord stimulation, implanted in November.

Now her consultant wants to remove the stimulator because she is struggling with recurrent infections around the site of her battery.

Everything else has failed or worked for a short period before she becomes tolerant of whatever it is.
Opioids interfere with other medication causing problems of their own.

I truly am lost for ideas.
Our only remaining options appear to be colossally expensive and not achievable for us.

Any advice would be welcome and thank you for taking the time.

EDIT: We’ve noticed that movement and exercise will cause recurrent abscesses and infections around her battery site so physio is a difficult area at the moment.

On a silly note through all of the suck that comes with EDS, can yall please share how you do your lashes? Mascara? Dying them? Extensions? False lashes?

For me it’s just eye shadow, because I haven’t found a mascara that doesn’t cause a reaction or make my eye lashes fall out faster (slight MCAS is suspected by my allergist) I have found a few but… quality wise they’re clumpy without much extension and not that good so not really worth it). My lashes are blonde at the tips so I’d love for nice occasions to look like I have some (even though I do they’re just hiding and not SUPER lush like my bf’s- yes I’m jealous of them). I’ve considered extensions but knowing there can be complications for normal people- I just worry my EDS skin is going to find another way to make me more complicated. And false lashes- I have the same issue with the glue as mascara if not worse- my normal skin reacts in hives from the tugging caused by most bandaids so I can’t imagine glue on my eyelids! And magnetic seem to be a great way to loose all my existing lashes. Dying seems like the most likely solution but I’m scared of how my skin let alone my eyes >.< are going to react to the dye. But I’m open to anything! I just want some recommendations based on fellow zebra experiences!

And for those saying they could care less because x serious thing- I am aware how zebra’s can elevate their lash game IS THE LEAST of our problems- but please respect that this is just a lighthearted thing to discuss as a break from that ok?

Note: r/ehlersdanlos took down this post after nearly 80 comments because: “While it’s perfectly normal to notice unusual things about your body, it’s important to remember that not every difference or discomfort is a sign of EDS. If you’re unsure, it’s best to consult your healthcare provider or approach the situation with a general curiosity, rather than assuming it’s related to EDS. This approach can help prevent misinformation, overmedicalization, and confusion within the community. If you're experiencing something distressing or disruptive, we recommend bringing it up with a healthcare provider.”

I think everyone who has gone through EDS knows asking their doctor for lash tips is the least of their worries. No where did I claim EDS affects how you can do lashes- I just asked how fellow people with EDS do them as well as my own personal experience with lashes. What is documented as an EDS strait is sensitive stretchy skin and many with EDS not being able to use various cosmetic products, so I thought a post about how this can apply to lashes would be useful. While one product may work for one person, it may not work for another- but if something as simple as asking people how they do their lashes is against your guidelines, you may need to rethink your priorities in moderation- key word moderation.

Hello gang. I (35 F) have hEDS, diagnosed in June. I've just been fitted for invisalign today, i never really cared about the straightness of my teeth but my dentist advised I priortise it to ensure my gums are healthy and to avoid unnecessary inflammation. So now I as a grown woman have invisible braces.

I'm curious if any adults with hEDS had invisalign and found it went faster than they anticipated? I am secretly hoping that faster invisalign could be an unexpected upside on hEDS.

Edit: seeing other posts it looks like fast moving teeth is normal. Curious how long it took folksto finish invisalign. My teeth are overall strong, no cavities and are just over crowded and wonky af.

Hopefully this post is allowed here. I am recently diagnosed with EDS and have a huge problem with belly distention. I am eating healthy, working out, and yet... It persists. What are you guys wearing? A. To make it more comfy on the belly, and B to look cute and hide it! What kinds of pieces work best?

30F 5'2" non smoker, Dx Ehlers Danlos / HSD, taking Clomipramine, Adderall, and bc pill

I have somehow, through overtensing my muscles, managed to do something to permanently numb both half of my right hand and halfway down my calf to my feet, causing foot drop. This was happening intermittently to my lower right leg (mostly from wearing sandals) but has now become permanent. In the beginning I was rolling my ankle constantly, but muscle memory seems to have allowed me to walk despite the drop. I know this is probably bad for my back because of the way I am replicating flexion of the ankle by lifting instead of striding. I am suspicious this all began when I tore my right rotator cuff a year ago. I currently do not have health insurance and am doing fine, but the only response from research I get is “go to the ER yesterday.” This has been the case for months now. Has anyone experienced this?

i’m sorry but it’s so fucking frustrating seeing posts here every day about “i’m not hypermobile but xyz makes me think i have hEDS”, usually pain or comorbs like pots or mcas, usually post viral.

as of right now, no you do not have hEDS if you’re not hypermobile. full stop. there is diagnostic criteria for a reason. now, the diagnostic criteria is changing in december, but until then holy shit you need to be HYPERMOBILE to have HYPERMOBILE ehlers danlos.

muscle guarding and stiffness as a reaction to hypermobility is a thing but it only goes so far and requires the presence of historical hypermobility to count towards diagnostic criteria.

i do think there’s a very good possibility of a different disorder entirely, post viral, that causes mcas, pots, and joint pain/instability. but we do not have the research that that phenotype and hEDS are the same thing necessarily and until we do it’s irresponsible to keep saying that all you need is the comorbidities to have hEDS. no. you can have pots and mcas completely separate from hEDS. chronic joint pain can be caused by a billion different things, and if you’re not hypermobile, it’s PROBABLY NOT HYPERMOBILITY.

to add, hEDS is a lot more than just being bendy and people should be encouraged to look at the actual clinical diagnostic criteria instead of just following what they see online. science exists for a reason, we should follow it.

eta: this post is not about the beighton score. it’s widely accepted that the beighton is limited in capturing hypermobility. i am talking about people who are literally not hypermobile in any joints in their body (or just in one or two) and have never been but say they must have hEDS because of xyz.

Interesting read from Dr. Gensemer, a biomedical researcher at the Norris Lab. Curious to hear other folk’s thoughts on this.

Summary:

A new preprint proposes a framework for “neuro EDS,” a neuro-predominant phenotype within hEDS/HSD. The framework outlines two domains: a cranial and spinal domain, and a neuro-autonomic-inflammatory domain, highlighting the need for integrated care, which emphasizes the importance of future research to refine this phenotype and identify biologically meaningful endotypes.

I’ll add the preprint link she referenced in the comments.

uuufffrhhhh. context: im 19d heds diagnosed but i dont have much symptoms. also epilepsy plus overpriced medication that makes me sleep 18 hours a day. (haven’t had a seizure in over a year and have yet to have one triggered by any of the things mentioned in this post)

i like to experiment with drugs on occasion. yes i am well aware at how stupid that is yes i deserve whatever consequences but i mean come onnnnn

i hear stories constantly of ex addicts who were going on month long meth/coke binges and are somehow totally fine now. i do one thing at a dose so low that i feel nothing and the next day im wondering if im having heart palpitations.

i dont even drink!!!!

i have fun dancing and walking around all day ONCE and now i have to spend the rest of rhe week on borderline bedrest because i cant walk without a limp. i wqsnt even doing anything crazy!! like white girl dancing for probably an hour total while taking frequent breaks and now ouuucch my legs.

without heavily relying on caffeine ill sleep the entire day, without constantly taking ibuprofen or whatever painkiller available i cant seem to do much of anythijg without wanting to quit and lay down after an hour. but if i keep taking whatever painkillers ill probably fuck up my liver as well.

and unfortunately stimulant drugs make the pain so much better and remove the constant weighted blanket of anhedonia and fatigue thats led me to become a borderline shut in so many times. but since id like to live past 40 thats just not an option for me i guess.

ive had symptoms like this in the past from other stims and ignored it as some sort of hangover but upon learning that this is in fact not a common experience i realize i probably should not have ignored them so much..

im so sick of this i just want to have fun and be normal.

obviously avoiding stimulants for the foreseeable future. also going to try and switch to half decaf coffee in the morning just for good measure. but college starts again in a week so ill have to hope and pray that i can gwt anything done without falling asleep. i enjoy a bit of nicotine here and there, probably an average whopping three cigarettes a week!!! but i think i should probably quit that as well.

maybe ill readjust, maybe i can just mentally power through all of this and still be able to get decent grades, and also do things with friends, and get a job on the side, and not just lay around in bed all day but so far ive yet to achieve any of that without some sort of crutch. be it an insane amount of caffeine, a friends adderall, an occasional cigarette, or, for a short while, kratom. but that seems to be getting banned everywhere so not an option anymore anyways.

Who should I see about severe fatigue? My rheumatologist has done absolutely nothing for me in this aspect of things. I've been in the care of my rheumatologist for about two years and have brought up my worsening fatigue every time. I've already seen a sleep specialist and had a sleep study to rule out sleep apnea and other disorders. It's gotten to the point where I'm worried about losing my job because of how much I call out due to fatigue alone. I just don't know what to do.

Trying this here because the r/ehlersdanlos mods think I'm a child for some reason

Okay.

So I've had what my pcp has called "pectus excavatum" for years. I've had a hard bone bump on the left side of the middle of my sternum.

I had physical therapy today. And my physical therapist figured out that "bump" was THREE RIBS that have been ON TOP of my sternum!?! And she moved them back down to the side?!!

It has been like this for five years. I thought I had a bone deformity. And now it's just completely flat and I have to think about not breathing deep enough to sublux my ribs back on top of my sternum.

Has this happened to anyone else??? Because apparently I've just set the record for weirdest thing my pt (who exclusively treats eds) has EVER seen.

My nail polish never stays longer than two days without massively chipping and usually peeling off. It doesn't seem to matter what type of polish or prep or anything and I'm getting frustrated.
Advice and commiseration welcome!

I will attempt to keep this as short as possible. Apologies in advance.

I'm m30. The last 10 years of my life have been a struggle. My aunt was diagnosed with hEDS a long time ago and it clearly runs in the family as my Grandmother, Mother, Sister and cousins have suffered varying amounts of EDS-like symptoms.

To start, I was diagnosed with ADHD and Autism age 7.

I just thought it was normal having aches, pains, stiffness, co-ordination issues. I've always had terrible balance. Doctors knew I was hypermobile, but I maintained an active youth. At 16, I dislocated my left knee. At 20, I herniated a disc in my back for no discernible reason. At 26 I herniated a second disc and since it's been completely unmanageable. Doing anything leaves me crippled for large amounts of time, even just going shopping for the day. Last year, I dislocated my knee again and managed to fracture my femur doing so. During the surgery I had an adverse reaction to the sedation and woke up, pulled the tubes out and started talking. The anaesthesiologist said this was a first for her. The surgeon also confirmed the knee issue will be chronic.

I've had GI issues since I was 16. They were manageable until about 18 months ago. I changed my diet and lost the weight I'd put on in my 20s. I then got food poisoning for the first time in my life. This made the symptoms extremely worse. After being gaslit by my doctors for a year, I was thrown to a dietician and did FODMAP. Didn't really help. Got sent to gastro. All tests, found nothing. Finally figured it was fat that was the main trigger and surmised BAM myself, asked gastro for Cholestyramine. It helps a little, but it's still all over the place. It makes leaving the house a real struggle, especially having to eat outside of the house. Eating in general just leaves me in pain and feeling very ill.

I'm quite confident that it's at least hEDS adjacent. I've mentioned it to every doctor I've seen about each issue, none are interested. The surgeon tried referring me to rheumatology, denied because "we can't cure it".

Has anyone had success with being diagnosed in the UK? How? Has it helped? Can I get help with other things? I'm genuinely miserable and trying to get anything out of public services feels impossible.

Even just how you manage things would be appreciated. TIA.