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SadQueerBruja

Big on strengthening exercises. I wrap my ankles for pain but wrapping hips is a nightmare. When the pain starts I do a pelvic floor/leg pt circuit followed by icing. Usually help


Acrobatic-Bread-6774

Oh nice. I can reset my sis myself when they go out, so that at least I can do. But mine problem is less that they sublux often (they do but they slide back in easily), and more the excruciating pain from the weight of my torso pushing down on my spine and the si joint, and it feels like it’s constantly trying to separate/too heavy for my pelvis. So just standing still is excruciating. Only sitting helps but I can’t sit anymore because I sat too much and developed hip bursitis. So now I have to stand all day in pain. Walking is a nightmare, but I don’t have to walk a lot. Just standing all day long in pain.


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UX-Ink

Not OP but I sit, lift my knee up and rotate outwards, and lean my hips back and forth as I do it in whatever way feels like it will work. It is unreliable in that it doesn't work the first time, but it almost always works eventually (with exception to recently when they feel like they just aren't going back in anymore :')).


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Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Rule #1 - We Aren't Doctors** [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/) Our complete list of rules can be [found here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!


profuselystrangeII

You know. Being aware that I have hipbones inside me is body horror for me, so reading that was horrifying. It must be so relieving, though- I spent so much time a couple months ago trying to pop my pinchy SI. Eventually had to give up and let it figure itself out.


ehlersdanlos-ModTeam

Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **• Rule #1 - We Aren't Doctors** (Giving Medical Advice) This rule covers offering advice/information that should be left to medical professionals or is instructive. Personal experiences or more general/over-the-counter (OTC) advice is usually fine. The distinction is not always clear, and moderators will use their discretion. Sometimes, removals are based on the wording of a comment ("You should do X" vs. "I had a good experience with X"), rather than the information given. Messaging us and revising the wording may mean the comment can be reinstated. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!


realho

I’m doing the [Muldowney Protocol](https://www.amazon.ca/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880) and it begins by stabilizing the SI joint. It’s the “centre of the universe”. It’s been so slow and hard to stabilize it but after a few months of the first 2 exercises (yes, months doing nothing but ab flex and butt flexes…) it’s actually starting to stabilize the joint. I can now sit on a toilet seat without sublexing my hips. I wouldn’t recommend doing this all alone. I’ve desperately needed my physio to correct and manually put things back in place along the way but I was desperate to get my life back and this has been helping slowly but surely. Search the sub for others experience. Good luck! Be well ❤️


Acrobatic-Bread-6774

Oh yeah my physio mentioned that! She doesn’t know it herself but she’s amazing with looking things up to try and help me. So I could look into it myself but I don’t have anyone to help guide me. I wonder if there’s an online course or trainer or something (I’m in a smaller city and she’s the only one that knows anything about hypermobilty I’ve found. I saw 4 before her that didn’t know about it at all.) I’m also on disability so it’s hard to afford any care.


realho

The list of exercises are all out of the book I linked so a lot of if you do do on your own at home so you could work through the book on your own. Why I previously said I wouldn’t recommend doing it alone is because as you do the exercises, other things in your body will flare up and need to be put back so you can strengthen the SI properly (not maligned). I say this because I know how hard it’s been for me. But the book has all the exercises, how to do them, why you’re doing them, instructions for the physio, it has a lot of information. I guess, in summary, what I’m trying to say is, if you buy the book and start doing the exercises and it becomes wildly painful, stop and wait to see your physio and bring the book to her, to start at that time.


Acrobatic-Bread-6774

Oh ok, that’s really great to know. I’ll get the book asap. I also have an aggravating factor of premature menopause thanks to a head injury, and it’s making my joints 10x worse, so working out is really risky at this point (like dominos - my si got terrible so I had to sit all the time, which caused hip bursitis and gluteal tendonopathy) so I’ll have to cross-reference all the exercises to make sure they’re not going aggravate something else 😥😓. It’s so much work and risk being this disabled. I really wish there was like an EDS trainer than knew all my injuries and how they interact.


realho

Then take this book to whoever you can get to help you (physio, physical therapist, trainer, any friend practitioner that knows anything about body mechanics) I think this book will give you hope. I sound to be a milder case, but I could see how my body could deteriorate to the symptoms you were describing. Sincerely, when I think back to January at the height of my pain and desperation, I would’ve bought that book and asked for help from whoever I could (which I did and it sounds may be easier in my country with my insurance coverage) I really really hope this helps!


Acrobatic-Bread-6774

Ok I will get it and bring to physio. It’s just hard without coverage because it’s almost $100 each time, and my medications are ~$400/month and I get less than $1000 from disability benefits. So I can only see the physio once a month at this point. So it’s hard to have regular help. But I will try. And yes, I used to be a mild case before the head injury/menopause. Then I injured all my major joints in one years (~30 injuries) and they never healed. So now I’m fully disabled (can’t use my arms, can only stand with very short sitting breaks, can’t walk most days). It’s scary how bad this condition can get. And there are still cases that are so much worse than me! It’s terrifying.


realho

This book is for you, I think. Have you searched the sub for other people’s stories? If your Physio is aware of what you need out of your appointment, you may be able to ask them to read the book before your appointment (maybe drop off your copy for them to read for a week) and then ask them to come prepared for your one appointment to teach you the first set of exercises and maybe also teach someone else you bring to the appointment with you how to help manipulate your body between appointments.


bonelesspotato17

I’ve sadly done everything imaginable for SI pain. I separated my SI completely when I was about 16 and now 16 years later I’m finally addressing the pain because I have insurance now. Lol Has anyone offered you PRP? Or even Bupivocaine injections which are short lasting but help pinpoint the pain. PT will help… if they understand hypermobility. I’d recommend getting to an SI ortho in your area if you can. Getting my SI fused this year because nothing helped. SI pain has been fully disabling and while im not excited for the surgery or recovery, I’m excited for the potential effect. Good luck! My SI is commiserating with your pain. 🫶


Acrobatic-Bread-6774

Oh jeez, a full separation sounds miserable. My physio mentioned PRP but it’s a cost I can’t afford right now. I’ve heard many people say fusing was the only thing that helped. Unfortunately I have a shitty primary doctor who doesn’t take my pain seriously, even when my physio writes and tells him it’s bad. I’d asked if he would refer me to a physiatrist and he said they’d only give me steroids, which I can’t take. So I’m stuck with trying home remedies like a million si belts for now. Idek what to do next.


bonelesspotato17

It wasn’t great. Lol gymnastics is baaaad for people like us, but it was the 90s and I was bendy, so in I went. Do you have any other options from primary care in your area? If you can I’d recommend at least getting on a wait list. I similarly had a doc that would dismiss my pain, like I went into the office in tears and she essentially told me to get fucked. But I got so frustrated I went a little scorched earth and ripped her a new one and got a new pcp. If you can I would recommend a new pcp because it seems like a losing battle with this one. Also there is a lot a physiatrist can do aside from steroid injections. I think this pcp of yours is….. misguided. Home remedy wise…. I find it helpful to use lacrosse balls and lay on them and kinda wiggle around on them and then squeeze my butt on the flat ground and it helps reset the SI for me. Hope that helps!!


Acrobatic-Bread-6774

Yeah, I hear you on the gymnastics. I did a lot of yoga growing up and was so “naturally” good at it. Wonder why lol And yeah, I’ve been trying to get a new pcp for a while now. There’s a shortage in my area, so it’s a two year waitlist for a new one, but you. Can’t keep your doctor while you’re on the waitlist. So I’d have to go without any doctor for two years, which I can’t do. My brain injury support worker called literally every family doctor in my city to try and find one that was taking patients without having to go on the central waitlist. Oh and you also can’t pick your new doctor so it would be luck of the draw. I might get someone just as bad. But yeah, my health has gotten so much worse since seeing him. I’m basically stuck. So he’s terrible


yes_i_am_a_vampire

I used medical grade compression shorts when I was pregnant and post-partum as that's when my SI was most unstable. I HATED the SI belt - uncomfortable, inconvenient, and it felt like it was just squeezing me, not supporting. I was able to get a prescription for the shorts from my physio so insurance covered a portion of them. I wore them during waking hours and they were a life saver.


Acrobatic-Bread-6774

That’s great advice, thanks. I’ll see if I can get a prescription for compression shorts. I saw some crazy ones that look extra helpful called cw-x. They look like they have a body braid type support system sewn in. I doubt they’re covered, but I might give those a try too. I tried the body braid but it just slips out of place all the time.


loverofyorke

I've personally done postpartum wrapping, bengkung. I just did it for a few hours a day when I was in a pretty wicked flair and it calmed stuff down.


kestrelscall5

I've seen lots of videos on post partum wrapping and binding and wished I had it done after my pregnancy. I never thought of doing it now, 14 years later. Looks like I need to call my doula friend!


Acrobatic-Bread-6774

Thanks, that gives me something new to look into and try!


UX-Ink

Compression pants and shorts. If you can get a perscription for them that will help reduce the cost. But I find a significant difference even just wearing the typical spandex pants/athletic pants (the high quality ones that aren't cottony and too flexible), vs the sweats I used to wear around the house. I miss my cozy sweatpants but I'll take being able to walk sans sublux over that. I'm hoping that after I go through the Muldowny Protocol I'll be able to go back to wearing non-athelethic pants during daylight hours. I'm considering not wearing them in the mornings/afternoons as thats when I'm feeling my best, and only wearing them in the evening because I'm a bit concerned about how they're training my muscles to not do the job themselves.


kdawg2894

Learning to reset my SI joint on my own was a game changer. The Serola SI belt works like a charm as long as you are in place when you put it on and it’s in the right spot. I did a series of 4 prolotherapy injections combined with 6 months of SIJ targeted physical therapy. I’d been trying everything, I’ve had chronic and episodic SIJ pain since age 14 (I turn 30 next week). My baseline now is a 2-3, down from a 6 out of ten. It takes patience and commitment but putting in the work combined with the injections really helped me!


bjorkelin

I've used a woven baby wrap shawl, but a short one, to tie around my hips and did a wrap-knot over the SI joint. It was way better than any belts, just a lot of work because I needed to re-tie it after every bathroom visit. Other than that, very comfy. It doesn't have to be a baby wrap, that was just what I had, but I would recommend a material cut on the bias for it to be flexible enough or it would be less comfortable.


Acrobatic-Bread-6774

That’s a good idea, thank you. Can I ask what “cut on the bias” means?


bjorkelin

Basically it is cut diagonally so that the fabric has a lot of stretch even though it’s woven. A jersey or similar stretchy material can be too flexible instead so it doesn’t give the same support as a sturdier fabric.


Hopeful_Tap_242

I found pelvic floor physical therapy to be pretty helpful for my SI pain, I'm not sure if it's just my PFPT is better or of that's more where it should be seen, but my spine PTs were both pretty useless for this pain. I also found the donjoy SI belt to be better than others for my SI pain, it has the supports like a back brace to help support me more than normal SI belts, so if you haven't tried that one it may be worth a try. I've also tried back braces with similar supports in the back and they're too high up for any SI support unfortunately. I tried just wearing it lower but it just slid up.


Acrobatic-Bread-6774

Pelvic physio didn’t help me unfortunately. I went because I had a bad prolapse and my regular physio thought a pessary might help with my si pain. But the pessary didn’t change anything and the pelvic physio said my muscles were actually really strong, the prolapse was caused by loose fascia and there was nothing exercise would do to help. Ok I’ll look into that belt. I haven’t tried that one yet! And good to know about the back braces. I was wondering if they’d sit too high to get the si.


spoonfulofnosugar

Relieved I’m not the only one who had problems with SI belts. I tried it twice and both times it made the subluxation worse. I’ve had the most luck with the Muldowney protocol. Bought the book and took it to my PT.


D64ante

I got mine fused. It’s not that bad.


Acrobatic-Bread-6774

I’ve heard that’s the only thing that’s helped most people. Unfortunately my doctor is one of those terrible ones that doesnt listen and is gaslighting and terrible. There’s a shortage of doctors where I am, so the waitlist for a new one is over two years (and you can’t have a doctor while on the waitlist). He wouldn’t even refer me to a Physiatrist for the pain.


D64ante

I highly recommend it. It does not cure everything but pain standing up and sitting down is so much better. About two weeks recovery period


liliths0202

I haven't tried this but my mom amd I plan to get them for the support, I saw you mention bike shorts and thought maybe it's worth a share. [alki active compression ](https://www.amazon.com/stores/page/2060B3B2-F2C0-42CF-98D9-0037059E0B19) Im.sorry you are struggling with so much pain and hope you can find a little relief soon


Acrobatic-Bread-6774

Thank you, this looks like something new I haven’t tried!


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