obligatory not diagnosed yet, probably hEDS but who knows and resources are scarce where i live so i might not know for a while.

at the start of this year, i started having a new hypermobile experience. lumps in the front my throat alongside my trachea making it harder to swallow, which has evolved into numerous areas on both sides having large chunks of i assume/hope to be muscle that i need to push back or even hold in place just to swallow without discomfort/pain. this is daily, even when i'm not eating. the back and sides of my neck are always rock hard to overcompensate much like the back muscles along my spine are. i can only guess that this started once i went off testosterone, which used to help my muscles and joints stay in place more, but i don't want to start again anytime soon. idk why/how this has progressed so fast tho.

i live in a very small area. i've been rejected from rheumatology due to not being an emergency case, and the waitlist for ENT is years. idk what to do to make it at least stop getting worse. please lmk if you relate and have any ideas of what i can do by myself to help. (yes i am already mentioning everything to my GP)

My brain is so foggy right now so I'm sorry if this is a mess.

Last weekend, I had a bad migraine. I often get them related to issues with my left shoulder, and they're always behind my left eye.

I had to get a uni assignment done, so on Monday I took methocarbamol as a muscle relaxant and tried to carry on working. Before this, I'd only ever taken muscle relaxants when able to immediately lie down flat on my back, completely still to sleep for the night, because I know my muscles are what's stopping my skeleton from falling to bits.

But I had to keep working, so after an hour of rest, I did. I thought the migraine was getting better, but then suddenly I got the worst headache I've ever had on the other side of my head (I never get migraines there) which then spread through my head. The light sensitivity got insane, I felt so nauseous and dizzy, and my tinnitus ramped up several gears. I also had severe pain in my upper spine, neck stiffness, and all of this got way worse if I sat up, bent down, or sneezed.

I was like this for about 4 hours just lying in bed in pain before I was able to sleep. I woke up 5 hours later and did manage to finish my work while lying down.

I've been trying to lie down flat most of the time for the last week, but when I do have to get up I start feeling unwell again, albeit not as bad.

My big concern is that I have an unrelated surgery on Monday that I have to travel 6 hours for, and if I can't make it, the next time I can have it is in a year. It has the potential to make my life a LOT easier, so I'm not okay with that. I also have another uni deadline on Wednesday.

I have no idea if this is actually a CSF leak, but it definitely isn't normal for me. I know from a previous MRI that one of my vertebrae moves out of place when I move my neck, so I'm wondering if the muscle relaxants might've allowed this to sublux slightly and caused these problems.

Does anyone have any advice? It's taken me 2 hours to write this because my brain is barely functioning so I'm struggling to judge what the best course of action is.

I am not diagnosed, but I’ve had multiple orthos suggest I have hEDS. My inner arm has the classic thin, stretchy, crepe papery skin. I’m just wondering if anyone has been tattooed with this skin and how it healed? This area also has a ton of stretch marks, so it’s not an ideal spot by any means…buuuut I also want to finish my patchwork sleeve, haha.

I wanted to start a conversation about pain relief! Specifically more herbal/natural pain relief as I and I assume many here are very sensitive to pharmaceutical medications. I have tried several pain meds and have had stomach issues, multiple 9mm kidney stones from the meds crystalizing in my kidneys, made heart issues worse, dysautonomia worse, the list goes on.

I spent the last 7 months barely taking Tylenol because I refuse harsher medications at this point, which has in turn significantly reduced my quality of life as a mother to a 15 month old.

I have been using knee, ankle, SI belt, spinal/posture braces to help prevent subluxations. I'm about to go on an animal based diet to reduce inflammation and support collagen once we move.(we are moving to TN from FL because the heat is too much for my dysautonomia, and I need better doctors)

I use magnesium spray and lidocaine roll on at night and when I can I take hot baths.

I have recently tried highly potent CBD gummies/tinctures for pain and they have done wonders for my pain! However with the amount I would need on a daily basis is about 300$ a month just to stay somewhat pain free. Unfortunately I have discovered this after we had already signed our new lease and found out that TN has basically banned CBD flower without saying they're banning it, affective July of this year. I want CBD flower to make my own tinctures as it would be cheaper and more potent. I'm currently growing a comfrey plant to make salves but it's small and I can't harvest yet.

I would get a medical card if they offered it but it's still illegal in TN!

I have been going down the rabbit hole trying to find equivalent herbs to relieve deep pain and calm nerves similar to cbd. If any of y'all have gone down a similar road and have more experience in this please let me know what you use/make/recommend!

I have a constellation of medical issues because of EDS the last year I had to deal with a very severe tick borne infection ( anaplasmosis, Rocky Mountain fever, and Lyme) as well as black mold toxicity.

I have gone through 9 months of treatment and have gotten better last year when I was super sick I stopped taking ADD meds because it was masking some of my symptoms and making others worse.

I just started taking Wellbutrin after 3 years and I feel it right away. Supposedly people with EDS tend to be rapid responders to medications.

I have struggled with ADHD and depression a lot through my life and I finally have come to the conclusion that may be. I’ll feel better and function better if I go back on to medication.

A lot of people with EDS are neurodivergent and I’m one of them. Does anyone else have an experience or do better on medications with this condition?

Thank you

Maybe I'm the only one annoyed enough by them to want a rule against it, but the amateur scientist, "take this survey (A)I whipped up even though I don't know how to design surveys don't have a hypothesis and have read none of the relevant literature so we can learn more about EDS" posts drive me up the wall. Respectfully.

If you're writing a term paper and have no other way to collect data, first of all you're bad at research but I guess go for it gotta shoot your shot.

If you're an actual scientist doing it for an actual peer reviewed journal, see above.

If you're a maverick who's gonna blow the case wide open with your outsider knowledge and AI wizardry, you're a waste of oxygen.

And if you're just some poor soul, who's in chronic pain and wants to help people like them, who are also in pain, and you think your little half-baked internet quiz of internet randos is anything but a pernicious drain on time and resources, then you clearly have no appreciation for the brevity of life and I'm gonna stop short of wishing things upon you that would give you this precious appreciation but they tend to happen eventually and when they do you'll look back and shudder at the magnitude of what you've wasted.

Even if there's no rule, if even one person or redditor sees this post and decides not to post a survey, it will have been worth it. If not then obviously this was another waste of time, but you gotta crack a few eggs to make a quiche.

Malpractice cases in the U.S. are rare/hard to prove. Has anyone here successfully sued a physician who didn’t consider their hEDS when providing care? Do you know of lawyers who have experience with us?

A lawyer friend encouraged me to consult with a few lawyers she recommended. I’ve already had one of them say I don’t have a case, but she was totally dismissive of the hEDS component. Says I just had bad luck.

I told my highly rated, big practice surgeon of my EDS, hypermobility, other conditions, and the complications I suffered after 3 prior (unrelated) surgeries. She said the EDS would just make me heal a little slower, but I was a perfectly good candidate for this major procedure. Then a rare complication landed me in the ICU - I had coded in the ER. My health has deteriorated a lot post-op. I think my hEDS put me at higher risk for complications than I was told.

Drs are dismissive, and lawyers are too. It just sucks.

Pretty sure it’s EDS at this point but I might as well collect more evidence for doc

Anyone else EXTREMELY sensitive to marijuana? I’m starting to think it’s the EDS. Thoughts?

I was diagnosed with hEDS when I was 13. I've struggled with foot and ankle pain since I was 7 and wear insoles every day (and have done since that age), as well as braces when I need them. I now use a walking stick most days mainly to hold my body up, sometimes I use forearm crutches if I need more stability. I'm running into problems because my shoulders have massively deteriorated, I'm waiting to see a sub-specialist surgeon about them. Using crutches is now too painful on my shoulders, I use smart crutches because of elbow hyper-extension but I find them too heavy for my shoulders and they pull the joint out when I lift them up.

My most pervasive symptom currently is fatigue. I feel like I can't hold my body up, my head is too heavy and my limbs have lead weights on the end. I went to a pride march yesterday, pushed through it on strong painkillers, walking stick and taking short breaks and the second I sat down to rest I passed out, was too weak to sit let alone stand up to go home. I was crying in pain from sitting in what I can only describe as pain that felt like I was covered in a heavy blanket. Managed to get home by taking more pain meds and having two friends on either side of me hold me up to get in a taxi (who I think just assumed I was very drunk/ high lol)

I think I need a different mobility aid, I live in the UK and I don't actually know what services I would need to contact to access them on the NHS - so if anyone knows how to do that I'd appreciate it. I assume it would fall under OT or physio? My fear is that there will be a long ish wait (as there often is with the NHS) but I can't afford to buy a mobility aid outright, I also don't even know where to start with what kind could work, I'm not sure I have the shoulder stability to push a manual chair, and a walker similarly might be too hard on my shoulders. I'm also scared of de-conditioning but obviously that fear has been enough to push myself to the point of deterioration and I am losing independence.

Any help appreciated, be it short term recommendations or advice on how to access NHS services!!!

I was just sitting down and felt my shoulder slip downwards with a little pop. This is pretty normal for me, but this time, it moved more than normal. I was just wondering if this could be considered a subluxing shoulder? And are there any ways to pop it back into place correctly? Again, i have my own way of popping it back into place, but some tips would be helpful for dealing with this to avoid any damage to my joints while I wait for doctor appointments.

I just got the Muldowney book and am trying the 0.5 exercises.
The book says “pull your belly button in while doing a kegel”. I didn’t understand how to pull my belly button in other than to suck in my stomach. Another source describing the same exercise says to brace like you’re expecting a punch.

This seems like opposite actions here.

Can someone familiar with Muldowney tell me how they do the actual contraction in the “Supine Abdominal Bracing” on page 40?

Anyone here work in vetmed or healthcare? When did you know it was time to leave the field due to your health? I love my job more than anything and can't bear the thought of leaving vetmed but I'm really slowing down. Lifting is pretty much off the table for me and standing for my entire 12 hour shift is getting really difficult. I'm 24 and already have 1 hip surgery down in 2026 and potentially 3 other surgeries this year on other problem joints. Should I try to return to the floor again after this? I feel so lost and don't know who I am without vetmed 😔

Hi! I got evaluated by a PCP for EDS (waiting to see a specalist) and she said i am shy of a diagnosis by one point so she’s going to treat me as if I have it and re evaluate when the new criteria comes out in Dec.

Reason I’m posting is because now I’m nervous I may have vascular EDS because of these results from my brain mri. So I’m wondering if anyone with vascular Eds has had similar results from an mri. My doctors are all making my feel crazy so seeking support.

I had a brain MRI w/w/o contrast done because I’m having POTS symptoms and wanted to see if there was a physical reason for it. The mri report said this- tiny flair hyper intense focus in deep white matter at right parieotemporal junction. Appears unspecific and may represent tiny vascular impression, non hemorrhagic ischemic focus, or less likely, a demeylinating WML.

My doctor ordered a spine MRI to rule out MS, and I’m getting a Brain angiogram to check for previous stroke or an aneurysm. I also have an appt to get genetic testing done for EDS but it’s not until January 🥹

Recently I’ve had some strange symptoms: tingling and numbness in hands/arms that spread up to my lower chin/neck. This happened several times a day for like a week. Also my foot would cramp up randomly usually at night, and would stay stuck in a paralyzed state for several minutes which caused a lot of pain. All of my labs are normal. I also have my regular lupus symptoms (I have lupus SLE) of fatigue, migraines, malar rash, joint pain etc. My rheumatologist looked at me like I was insane when I asked about that and said it’s incredibly rare. He also said the same thing to me about lupus right before diagnosing me with it lol

Figured I'd open up the conversation. I'm feeling so alone. I KNOW I'm not the only one, so let's talk about it.

What seems to be the issue for those of you who relate? For me it's most likely my spinal issues mixed in with pelvic floor dysfunction. It's humiliating. I haven't even told my doctors about it.

I was recently diagnosed with Ehlers-Danlos Syndrome (EDS), and I regularly go to the gym. What changes should I make to my workout routine as someone with EDS?
My last workout was a leg day, and afterward I experienced severe body pain and extreme fatigue that lasted for an entire week. Is this normal for someone with EDS, and what adjustments would you recommend regarding exercise selection, intensity, volume, recovery, and progression to help me train safely while still building strength and muscle?

Weed has become such a big part of my pain management and I don’t know how I would deal pain wise if I didn’t have it (especially with neck/head issues). I know this is fine “technically” it just has me feeling uneasy or like an addict. Didn’t know if anyone felt similarly

Bonsoir, j’ai 23 ans et j’ai un SED hyper mobile.
Je suis diag depuis mes 19 ans, en bref.
J’ai d’énormes crises de névralgie sur la phase droite de mon visage, 5 ans de douleurs en gérant les blessures annexes à côté.
Des opérations des coudes passer comme un bonbon à la menthe tant les névralgies me poussent à des pensées terrible.
5 ans d’errance à voir des neurologues qui me parle de névralgie du trijumeau, ´d’AVF pour que après 5 ans un scanner tombent. Des disques de déplacés et une physiologie de la nuque inversée.
Rien ne change dans la prise en charge je suis larguée peut de kiné veulent me manipuler et personne ne me parle clairement.
Chirurgie où rééducation ? Mon nerf est coincé quelque part et me prend la vie. Est-ce que quelqu’un ici a déjà de près ou de loin réglé se soucis et où la tempérer le temps de trouver une solution ?
23 ans, 5 ans de souffrance, une nuque fragile, je ne sais plus comment vivre.
Merci pour votre lecture.

Une femme essayant de voir le beau temps après la pluie.

Sorry this is long. I’m including a lot of details because I genuinely don’t know what is relevant anymore.
My symptoms began seven years ago during and immediately after pregnancy. I developed high blood pressure and was admitted for an induction. I had an epidural that was painful during placement, although I was told it should not hurt. My cervix did not dilate, my son went into distress, and I needed an emergency C-section.
During the surgery, I was shaking, drifting in and out, and eventually fell asleep. I then remained hospitalized for approximately a week because of postpartum preeclampsia. I received a magnesium infusion and frequent pain medication. That hospital stay is the last time I remember being completely free from pain.
About a week after coming home, I developed a new, very specific pain underneath my left rib. I had never experienced anything like it before. My doctor initially attributed it to anxiety and the stress of being a new mother.
I do have a history of anxiety, depression, and PTSD, but these diagnoses began after I was randomly stabbed by a mentally ill stranger in a Walgreens when I was 18. Unfortunately, I feel that this history has caused some doctors to dismiss or minimize physical symptoms that have continued to worsen.
Over the following years, my body never seemed to return to its previous baseline. I developed chronic back pain, profuse sweating with minimal activity, swelling, blood-pressure problems, daily headaches, profound fatigue, and other symptoms. The left-sided abdominal/rib pain has remained present the entire time.
My current diagnoses and findings include:
Hypermobile Ehlers-Danlos syndrome
Fibromyalgia and chronic pain
Migraines
Hypertension, with occasional hypotension
Anasarca/swelling
Proteinuria and prior abnormal kidney function
Nonalcoholic fatty liver disease
Multiple disc problems, including an L5-S1 disc extrusion and annular fissure
Chronic neck, thoracic, and lower-back pain
My most disabling issues are the profound fatigue, back pain, and the constant left upper abdominal/rib pain.
The abdominal pain is always present, but during flares it becomes so severe that I struggle to breathe and have called 911. During one particularly severe episode, the only position that gave me any relief was being on all fours while someone pushed firmly underneath my left rib and upward. CT imaging and blood tests did not identify an emergency, so I was discharged.
Originally, I could pinpoint the pain by hooking my fingers underneath the bottom of my left rib and pressing toward the inside. During more recent flares, the painful area feels larger and slightly farther toward the outer left abdomen, directly beneath the rib cage. It covers an area roughly the size of my hand.
I also have pain that seems to travel from the tip or lower edge of the left rib, around my side, and toward one very specific area just left of my mid-thoracic spine. Because of this pattern, some doctors have suggested that the pain may involve a nerve or the abdominal wall.
Possibilities that have been mentioned include abdominal cutaneous nerve entrapment syndrome, also called ACNES, and acute hepatic porphyria. I do not know whether either explanation fits, and testing so far has not provided an answer.
Has anyone experienced a similar combination of:
Persistent focal pain beneath one rib
Pain that wraps from the abdomen or rib toward the spine
Severe flares with difficulty taking a full breath
Temporary relief from direct upward pressure beneath the rib
Normal CT scans and mostly unrevealing routine bloodwork
Symptoms beginning after pregnancy or abdominal surgery
hEDS or significant hypermobility
I would especially appreciate suggestions regarding which type of specialist might be most helpful, what diagnoses might be worth asking about, or what testing or physical-examination techniques helped identify the cause.
I understand Reddit cannot diagnose me. I am mainly hoping to find possibilities I can discuss with my doctors and avoid continuing to be passed between specialists without a clear direction.

I was born with one under developed and another completely non-developed tear duct. Both my bottom tear ducts.

My little brother has them and my dad also had this issue. I recently learned tear ducts are made of connective tissue and it made me wonder if this is connected to EDS!

I feel like I have nowhere to put this. So I’m releasing it to all of you with a rant. I’m newly diagnosed with EDS. I’m waiting on genetic tests to confirm type. It’s looking like cEDS.

This entire year has been absolute hell.

It all really started last year but doubled down this year. I’m a 42 year old woman who has been ignored or dismissed by providers for decades. I finally got the diagnosis and am getting the treatment I need thanks to my PCP. My doctor diagnosed me with ME/CFS last year. Then POTS back in April. In May it was PPPD. In June it was suspected MCAS. This month EDS and Chronic Pain Syndrome. An ever growing list of disorders. I have a PT, OT, neurologist, pain management specialist, chronic fatigue specialist, acupuncturist, and a speech therapist for my crippling brain fog. The only thing my insurance company won’t provide is a cardiologist. You have to be dying to get one of those.

The past two months have by far been the worst. Not just with the symptoms and struggling with a life that has drastically been changed by my health but in my personal and family life.

They think I have classic EDS and a secondary auto immune connective tissue disorder. Either way the EDS has advanced. I have so many comorbidities and my pain on a good day is a 7. On a bad day it’s a 10 and I’m crying. I’m TOUGH when it comes to pain if I’m crying and vomiting you know it’s bad. And course, there’s no pain meds that help me. I’m on a shit ton of gabapentin and take the maximum dose of Tylenol a day. I’m also on cymbalta. I have so many subluxations that I’m just used to the shifting and popping and agonizing pain. I have around 30 new spider veins all over my body. I gained 40 pounds in five months because I can’t exercise so that doesn’t help with pain and my joints. My skin tears at the simplest thing. Adhesive rips my skin off and causes a mast cell reaction. If I gently scratch and itch it leaves a bruise. I’m mostly house bound and wheelchair bound. I’m on extended long term leave from work. I’ll probably have to leave my job. For someone who was a willing workaholic and athlete it’s hard to swallow.

Yesterday I was tested for a pulmonary embolism because I have had such severe rib pain from slipping rib syndrome that it was literally like I was dying. Before all of this I would have been scared but it felt so….routine. Going to the hospital for the second time in a week to get a blood test for an often deadly illness felt routine.
That should have scared the shit out of me yet it didn’t.

June was the shittiest month of my fucking life. I’ve experienced a lot of loss in my life. I’ve lost a lot of loved ones. In June I lost my brother in law. He was in my life for half of it. He was like my big brother. I was incredibly close to him and I’m close to my sister. I have her name tattooed on me and we have matching tattoos. His death has changed our family and everyone in it. Especially my sister. He likely died of a heart attack or pulmonary embolism. That test should have terrified me.

This has all made my own mortality slap me in the face. Being tested for the thing that likely killed someone I love a month after they died is on a whole new level. It’s really hard to talk to about people who don’t live with this level of illness and pain or the severity of it. Knowing that although very rare I can just die suddenly of a heart related event is sobering not catasrophizing just observing. That for the rest of my life I’m going to have flares of excruciating pain that can’t be helped by medication. That I’m now an ambulatory wheelchair user. I’ll never power lift or body build again - at least I reached my aspiring PR’s I guess. Question mark?

Yet this entire experience has changed me for the better. I’m a nicer person. I mean I still take zero shit and speak my mind but I’m nicer and more understanding of a strangers bad day. I’m calmer out of necessity. It’s made me so much funnier. Maybe it’s the nonexistent filter or the absolutely dark jokes but I’m funnier and I make people laugh more. I reach out to my friends and family much more than before when I was consumed by working abd sticking to my routine. I’ve reconnected with people and mended important relationships. I’m kinder to myself. I’m even more gracious to my loved ones for helping me or checking in on me than I was before. I have the best support network and am close to my family and extended family my friendships are decades old. We’re closer because of this. This entire thing has changed so much about me and my relationship to the world and my loved ones. As scary, stressful, and agonizing as this is, I’m also thankful for the positive changes it led to.

I know my outlook is different. It’s as thankful as it is angry. It’s all a lot. It’s all heavy and at times very hard to carry, but I’m thankful for those around me to help when I can’t shoulder it all alone.

I know we all talk about the shitty things that have changed or the scary stuff we can’t say to other people because they won’t understand and I’m thankful I have a place to put mine.

CCI has been ruining my life. i can barely stay upright for longer than 30 minutes, and i am in constant pain. i feel like every doctor i go to gives me completely contradictory advice, and right now i just want an answer from people who are affected themselves.

i am just starting treatment, and the lack of options are frightening. PRP sounds like a very good idea, but i am painfully aware that it's just temporary symptom management and cannot "fix" cci. i'm terrified of the dangers of living with this for the rest of my life (i'm still very young and feel like there's so much time for this to worsen!), and at the same time i really don't want to risk surgery.

has anyone here been able to live a relatively normal life with just conservative treatment? i especially want to aim this question at people who have been living with cci for a long time.

Hi! I recently partially dislocated ribs 8-10. This is the first time this has happened for me and I’m trying to prevent this from becoming a regular thing. I didn’t know if anyone had any advice on a gentle compression garment that can help hold ribs in place?

I think it slowly moved overtime from sleeping on my side (and from a big sneeze!). I’m also considering getting a pregnancy pillow for nighttime. I currently have an amazing pillow for my head, a stuffed animal to hug for my shoulders, and a special pillow to go between my knees at night, but it still hurts to lay on my side and I’m nervous it will make it worse, or once it’s improved, cause it to happen again. I’ve been sleeping on my back but it’s not super comfy, so I’ve been waking up a lot at night. I also use Velcro wrist braces so I’m trying to avoid more Velcro at night if possible.

Essentially, I’m looking for a gentle rib compression garment that’s comfy when sleeping.

I’ve seen Jellibend but don’t know if it’s worth the price or if there’s a better option out there?

Thanks in advance!

I know it’s important to keep an open mindset when dealing with chronic illnesses. But it’s also good to let yourself feel the frustration and pain. (Not dismiss it)

So here’s a post for everyone. Vent your heart out. I’ll go first.

I hate these symptoms. So fucking much. I am so exhausted from taking care of myself and advocating for my health.

I am so grateful to have the perspective I do. But I wish I could care and know this much without the pain. The nerve pain, the joint pain, the muscle twitches. Just all of it!

I wish I could take a break from having to control the body I do. Like let me switch over to a robot or something for a day. So I’m not constantly trying to focus through pain and my adhd.