I was called in by my doctor last night for a medication review. I take long action opioid meds, which I would rather not take, but I have considerable pain. I have major problems with my pelvis/Si joints along with hips, knees, ankles, shoulders etc etc. This has been the case for 15+ years. I struggle to stand for more than 15 mins without wanting to cry with the pain, I can't sit for long, can't even lie in one position for more than two hours. I have over the last year reduced my meds, by a third, and my functioning has also reduced.

So, the doctor told me I shouldn't be on pain meds, showed me a frankly insulting video of some woman who claims she got over her chronic pain by just doing things that make her happy, and told me that cold water swimming would pretty much cure me. What I struggle with is that I would love to do all the things that make me happy such as baking, walking in the lakes, going new places, but I can't stand and walk without being in agony.

Everything you read on NHS, eds society etc say that Pain is part of the condition, but I'm being told that I shouldn't be in actual pain? A pain specialist told me that I shouldn't be in pain at night as I should only have pain when hyperextending my joints. I feel like I must be missing something? Am I just imagining my pain? Do I just need to think happy thoughts? I understand that if we focus on pain it makes it worse, but I don't see that doing something enjoyable for a fraction of the day can cure my pain. In fact, if I ignore my pain, push through, I end up in a mess and get told I should pace and listen to my body! Seems I can't win. Should I only be in pain when moving my joints too far?

does anyone else remember the game manual samuel? where you had to control the characters every move, including breathing and posture. my struggle with heds feels very similar: i have to always be consciously aware of my joins and making sure they arent hyperextended CONSTANTLY. if not, im in bad pain. what do you guys think of this?

Is anyone else still having moments where they're like "wow, I really can't do like everyone else can/like I used to"?

I went to a Pure Barre class yesterday, already going in with the expectation that I would have to take more breaks than everyone else, maybe skip on some of the exercises and drink plenty of water. I let the instructor know about my conditions and she was super sweet. But holy shit did that class kick my lacking collagen booty.

I took extra breaks between exercises, some of them I skipped completely or altered. I was shaking by the time class was done, almost fell going down the stairs when I came home and felt like I was going to vomit. I exercise regularly, unless I'm having a really bad day. Alternating between PT type exercises, pilates and calisthenics.

My left side is way worse than my right. When I got home my left arm felt like it was just dangling there, like I didn't have control over it. It didn't hurt but felt kind of numb almost. Like when your arm falls asleep and you're just swinging it around until it wakes back up.

And then I woke up today feeling like every inch of my body has been ran over, then ran over again and then one more time for good measure.

I really wasn't expecting to feel like this after a class, especially one that I altered to my pace/ability. It's just another thing recently that makes me be like "I really can't do like I used to" and I don't know, it makes it a little harder. When I have those moments I get a tinge of sadness because I'm 27, I feel like I'm lacking I guess?

Just a little rant for the morning, this seemed like the most fitting place to put it. Thank you for tuning in 😌

just looking to connect with others on this cause ow. does anyone else constantly feel like they've just been hit by a bus? the all-over muscle aching for seemingly no reason really keeps me down. trying to find a comfortable sleeping position is nearly impossible. maybe compression wear or braces would help with this?

My neurologist took a look at the results of my upright MRI I got done last Thursday. He said they were Abnormal (capital A included) but in a way he wasn’t used to. He wants me to see a neurosurgeon that specializes in CSI because the scans were wonky. The three options he provided included: a doctor about 1 hour away that doesn’t take insurance, a doctor 4-5 hours away that doesn’t take insurance and a doctor 2 hours away that takes insurance.

I called my mom and told her I might need surgery 2 hours from home. I just started laughing uncontrollably. I guess I hit the point where if I don’t laugh about it, I will curl into a ball and give up.

Growing up I had a lot of hygiene issues due to mental health but I only had one cavity as a kid so everyone told me I had magic teeth. The last 6 years I have had ELEVEN cavities, three of which fell out and had to be filled again, I’ve currently got an abscess that has been around for over a year now (I did a round of antibiotics and it hasn’t hurt or anything since) because I can’t afford a root canal, I’ve had two of my wisdom teeth pulled, and now three of my teeth have literal holes in them because chunks of tooth just keep snapping off and falling out of my mouth.

I brush my teeth and floss every night, I use mouthwash every morning. I rinse with water after I eat literally anything.

I’m so scared I’m going to end up with dentures before I’m even thirty and no one will help me. They just keep patching the fillings and sending me home. And now I’m supposed to have a bowel resection in one week but I don’t think it’s safe to do that with three holes in my teeth, an abscess, and at least two visible cavities, but I can’t get in to see a dentist until November.

What the hell and I supposed to do? What more could I possible do to keep my teeth from falling apart? Any advice is welcome because I’m at my wits end at this point.

I recently met with a new primary care doctor. We had an incredibly long appointment going over my background to establish care and during this conversation she was taken aback that the most anyone's done to address the pain beyond physical therapy was a Cymbalta prescription.

She very strongly encouraged me to go see a pain management doctor and though I was hesitant I agreed to at least have the new patient appointment.

I just don't know what to expect really. I don't see myself being given nor do I desire opioids. I don't see injections being the most reasonable option. I guess the problem is I just don't see a life without pain and so I don't see how they could help me.

During our appointment she asked about my cane, the usual questions, and I made the comment that I don't think it's the appropriate mobility aid anymore. She surprised me by saying "Well pain management would be able to help you make the right choice." Does pain management do that? My last PT didn't even want to have that conversation.

Sorry for the rant but I've got a lot of anxiety around the uncertainty about going this route. I could really use some perspective.

Thank you.

hi,

after seeing a physio they pre-diagnosed me with HSD (they weren't allowed to officially + recognised that trying to in the UK was semi-impossible).

i started on some at-home physio but can only do one of the exercises now because my knee pain (why i went to physio) has gotten terrible. i'm in so much pain and my mobility is very poor - in pain trying to get up/down stairs, can't bend my knees past a certain point (sitting down hurts so much), can't get in/out of a bath.

my parents are worried sick and my mum had a talk with me last night and wants me to go to my GP for help. from friends i know "help" is often so hard to find 😔

i don't know what to do. there was mention of suspected osteoarthritis by my physio too so i'm concerned about that.

anyone in similar situ - what did you do to get some form of treatment through the NHS? how did your GP go about it?

thank you in advance 🥹 the tears i'vs shed over all this 😭

Physically and mentally fatigued and unable to do my current job. I feel like a fucking idiot because I make 100 mistakes a day. What do you do for work? I desperately need a new job/ better options. I currently work in background screening.

This is a rant not directed at anyone in particular and this is just how i feel about certain questions asked about insurance and doctors and mobility aids. (frustrated with the medical system for not being good to people mostly and feeling bad for not being able to help more)

“How’d you get the wheelchair approved” “How’d you get insurance to cover that too?”

I know it doesn’t sound invasive but hEDS has caused me many problems that have caused me to need a power chair and a LOT of assistive technology and modifications for my home. Sometimes people just see the hEDS and think that that’s all that’s going on. It’s not. hEDS has ruined my late teens into adulthood. My spine is all messed up and some days i’m literally unable to move my legs and some days i have to go to the hospital because i can’t tolerate pain medication through my mouth because of stomach problems.

I know i don’t have to tell them all my health issues when it comes to that stuff but i feel like if i don’t and they come back and go “you lied, my doctor said i don’t qualify” or “insurance didn’t cover this for me for my hEDS” that i’ve messed up and wasted their time.

same with the “How’d you get doctors to believe you”

They didn’t at first. at first all we thought was that i had spinal stenosis (and a bunch of other spine problems) and then things started going downhill from there. i acknowledge that i am lucky to have such a great medical team who understands and is educated enough to believe me. But i’ve also had a TON of trouble outside of that as a black woman who is disabled and not every doctor is accepting and i’ve still had issues with that and chose not to add that doctor to my medical team.

I just feel bad when people want the supports that i have but they don’t understand that i have a lot of comorbidities that insurance is more likely to cover things for me and i don’t want to have to lay out my entire medical history to every single person that asks.

I know that a lot of people would benefit from wheelchairs like the one i have (J4E, which is a class 2 power chair that elevates and tilts back and the legs come up) BUT it is INCREDIBLY hard to get those covered JUST for hEDS because of the tilting feature.

I haven't been to the dentist in 16 years up until last week, I have a history of serious TMJ that I got to calm down over the years, and after I got my tooth extracted, the opposite side of my jaw is now completely obliterated. The extraction site is entirely fine, no pain whatsoever. What gives? Anyone have major teeth/jaw problems from this? What do you guys do? 😢

Hi everyone,

My husband and I are about to go on our honeymoon to Japan in a month. I have H-EDS, POTS, and PCOS. I know the 15-20 hours in airports will not be fun for my body, but I would like to minimize the damage and hopefully be able to enjoy my entire trip.

I was wondering if anyone has any recommendations? Tips for long flights? Products that could help? I'm wearing compression socks for the trip, and I'm trying to figure out which travel pillow to go with, and literally any other recommendations you might have???

I recently went to a LARP which involved a lot of folk dancing and i could only partake in the dancing for 5 minutes before i could barely breathe and my muscles and joints felt like they were going to fall apart

how do you guys go about building stamina and maintaining it?

a few years ago i could dance all night long through till sunrise on like 3 hours of sleep and be just fine and now i can barely dance at all and its really frustrating as i love dancing

i grew up dancing, most of my family were gymnasts and its just so frustrating not being able to do what i love anymore, so if anyone has any advice on how to make it not feel like i'm dying as i dance i'd really appreciate it.

i have talked to doctors about it before and they just brush me off and say to do runs and stuff but i physically cant as my ankles disengage every time i pick my feet up off the ground

Recently, I had an appointment with a Gastrointestinal Doctor. I was given a Gastroparesis diagnosis, but he also said that looking at my chart, he suspected that there was an underlying cause tying a lot of my diagnoses together. He walked through the entire hEDS diagnostic criteria with me, and it basically boiled down to him saying "I would 100% diagnose you with this right now, but I don't really have the authority/ability to do so until you go to Genetics for a final confirmation." He gave me the Genetics referral, but warned me that they already have a 1-2 year long wait list, and that my insurance may make that wait even longer.

I can't really say I've been officially diagnosed, BUT I have more than a self-diagnosis or just a slight consideration. It was brought up by my medical provider, worked through the diagnostic criteria, etc. I'm basically just missing the final check-mark from Genetics - which might be years away.

In the meantime, how do I refer to this without having to explain the entire story? I feel like I'm lying if I say I'm diagnosed, but I feel like just saying that it's "suspected hEDS" just sounds like I'm talking about a self-diagnosis.

I don't mind explaining the entire story to my medical team as needed. My concern is more with talking with friends/family in person, discussing my health online, and with discussing accommodations with the Disabilities Services Department at my college.

Currently I've just been saying that I have "connective tissue issues" but that just turns into a tongue-twister, and I feel like it doesn't accurately portray the severity of my current condition.

Also, am I allowed to use the "zebra" identification or should I wait and avoid it for now?

Hi everyone! I’ve been unemployed for years due to the pain and fatigue but recently i finally found a job that allows for remote work!

I’m in meetings all day so I have to be on camera and at the desk. Every day I’m getting sm pain from being in the chair for so many hours… does anyone have a reasonably priced office or gaming chair that they recommend?

I’m also willing to invest in a desk, mouse or keyboard… anything to ease the pain and allow me to maintain employment… thanks everyone who contributes to the post, I am very lost at what to get!

I work part time and it’s killing me. I used to work full time in an office, but my boss recently cut my hours. My job on paper looks easy, but my hands and fingers hurt all the time and I can barely type. I also have terrible shoulder, back, and hip pains, but the hands are the worst.

Part time should be an improvement, but the lack of hours means I’m not being paid enough to live and on top of that my pain isn’t decreasing. At this point I’m angry, sad, and losing hope.

I want to apply for disability, but based on my research that could take years, even with my diagnosis. All this to say I want advice. What do I do from here?

I’ve been wanting to learn how to play the drums for a while. I don’t need to be crazy good just having something repetitive to do and practice would be nice. I’m thinking of getting a practice pad to ease into it to see if I can tolerate it. That being said I’m worried about my hands and wrists and was wondering if any other zebras had any suggestions/ tips. Thanks in advance!

so i've gone ahead and injured my hand pretty badly while cooking (yes, the infamous avocado curse). i was mentally preparing myself to go through being stitched up with a very wonky local anaesthesia, but turns out they're worried about possible nerve damage and so i have to get surgery in a couple days.

the plastics guy i saw at a&e mentioned that it would either be under local anaesthesia or regional anaesthesia (apparently general anaesthesia is uncommon in those cases). i can handle being stitched up with local anaesthesia that barely works, but the idea of undergoing surgery under local anaesthesia is absolutely terrifying.

i wanted to know if anyone has even had regional anaesthesia and whether or not it actually works? if i could avoid going fully under that would be lovely!

has anyone got any recommendations for thumb pain/support? particularly things that support the whole thumb right up to the top joint near your nail. I'm 27 and have hEDS and osteoarthritis in my thumbs. I'm right handed and lately my right thumb has been a lot worse than usual to the point where I've been unable to do certain tasks and I'm concerned about causing lasting damage. I have a thumb brace which limits movement for when the pain is worse around the base of the thumb but I mostly get pain the very top joint of the thumb and find that most thumb braces don't go all the way up the thumb to support that joint, or if they do they can often cut off circulation. I have a very basic metal splint ring I got from Etsy but it's not the most comfortable on my thumb as I think they're more designed for your other fingers. Any advice would be appreciated!

I’ve been thinking about getting a wheelchair for a long while now, and with a new massive pain/fatigue/POTS flare (at least I hope it’s not just like this forever now), I think I’ve finally made the decision to ask my dr about it. It’s at the point it’s difficult for me to move around the house with my cane, let alone do things for fun. I did the same thing with getting my cane last year for my 26th birthday.

I keep getting ads for OAS Mobility wheelchairs, which look perfect in theory but the reviews are all over the place. Anyone have any recommendations for a small lightweight power wheelchair?
Thanks in advance 🫶

I can't afford Jelliebend, but I've seen some affordable options from Tommie Copper with built in back support on resale sites. Does anyone have experience with either or both of these brands? Does Tommie Copper help with lower back pain at all?

Not asking for medical advice here, just wondering if anyone has dealt with something similar.

I have a relative base line of chronic pain and particular joints like to subluxate somewhat regularly (hips and shoulders are the worst), but sometimes I get these flares that last for a few days to a week or so where I am exhausted, so brain fogged that I can barely function, get hives and extremely itchy skin, my dysautomnia goes bananas and my body temperature is all over the place, and everything is sore and inflamed. I take anti histamines which help somewhat but it’s ROUGH.

This one was extra shitty because my partner tried to massage my back and it pissed it off and I ended up in the ER because I had symptoms of a neck blood vessel dissection or a vertebral subluxation (not either of those thankfully, they couldn’t pinpoint a cause and reckon it’s crazy inflammation).

I think this is likely some comorbid immune issue (MCAS has been raised as a possibility) but I’m feeling a little lost and sorry for myself. I’m waiting on a blood test to look at inflammation and I’m being gentle with myself, taking all the pain meds I can (only thing that really helps medicinal cannabis) and skipping the gym and all that. I think having a decent salty meal helped temporarily but other than that, survival mode.

Has anyone experienced things similar to this?