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Since I don’t have an official diagnosis of EDS (can’t find a doctor who can fully evaluate), I get no advice at all on these issues I’ve had with hips.
My hip joints seem to only like me to sit with my legs straight in front of me with feet on floor (no crossed legs). They only aggravate a little if straight out in front of me up on the sofa (sectional sofa corner allows back support doing this), but I get tingling in my feet after awhile like that. They are fine at a desk, but I can’t sit at a desk all evening at home. How do you sit at home in front of the TV?
My hips really don’t like me to sit cross-legged “indian style” even though I tend to want to sit that way on the sofa. Hips have pain for a long time afterward if I do that.
Only twice I’ve had a significant problem with a hip going out of place, extremely painful and couldn’t walk. I lifted my knee up to my chest and the hip poppped back into place and then I could walk. Both incidents were because of having to sit for a long period of time with my legs together in front of me, but angled to the side rather than straigt in front of me, because the row of seats in front of me didn’t allow enough space for my knees. Once was at an opera and the other was on a small commuter plane.
Sometimes chiropractic adjustments help with the pain, especially in hips, but can make things worse with neck pain. I always surprised the chiros because I’m so easy to adjust. I don’t go often anymore because everything slips back into a bad place so quickly I’d have to go almost daily to really feel good and that would be expensive.
Is this what you guys experience too (though I realize I’m probably a mild case). If so, do you have suggestions for sitting positions?
Thanks -Mary
I have hip pain too but I also have amazing flexibility. I have to keep my feet up or blood pools to my feet. So I sit at my desk either indian style or like right now with my feet sort of tucked under me but to one side slightly. I have to move very often or my hips will hurt later too.
When I’m not at my desk I prefer our love seat that is like a double lazy boy. I always pull the foot rest up when sitting there too.
I have exactly the same problem with chiropractors. They have told me I’m hypermobile and so I stretch too far when they are trying to get me lined up. But it feels like I’m back out of place within hours.
My husband got a video about home chiropractic and he learned many of the basic moves to keep me lined up. He knows how to get my hip back right and has to get my back almost every day.What a nice husband you have! I actually broke down and went to the chiro yesterday because my hips and low back hurt so badly. It worked. Almost no pain there today, which is an even better response than usual so I must have been considerably messed up. Just the rest of my body is still hurting but that’s easier to deal with.
Blood pools in my feet when standing too, or when legs and feet are dangling, and the doctor doesn’t know why. She said she’s never seen anything like it. Her first response was, “That is definitely not normal”. I’d already had Erythromelalgia for several years but that causes an entirely different shade of redness in the feet with hot skin, lots of pain and different triggers.
You might want to have your Iliotibial tract (IT band) looked at. It can cause the popping sound and the pain.
Hi. Did you see the video I made about hypermobile EDS? I describe a way I use to pop my hips back in place. It’s not my IT band, although I can slide that around my hip bone painlessly (and it freaks out my hubby!). I use a rubber ball. I lie on the floor on my back, knees bent. I let my knees fall gently down to the floor. Then as I bring them closer together (feet still on the floor), I put in the ball and squeeze it with my knees. POP! (and a little bit out “Ouch” and “thank goodness”), it pops back. I hope that helps a bit! 🙂
Thanks. I went out and bought a speaker for my laptop just because I wasn’t able to hear anything on your vidoes, but now can try it. I’ll do that this weekend. Sounds like a good tip. I’d love to be able to adjust my own hips back into place when they’re just a bit off. I don’t really think this is an IT band issue but I’m going to google and see what I can find. I don’t remember there being a popping sound when I’ve popped my hip back in place, just enoumous relief of pain and tension and could walk again.
Mary
Thanks. I went out and bought a speaker for my laptop just because I wasn’t able to hear anything on your vidoes, but now can try it.
MaryYikes. Am I speaking too softly? I usually listen to YouTubes with earphones which work well for even the softest voices. But please tell me to SPEAK UP if that’s the case, OK? If you have that great, immediate sense of relief when your hip goes back, I wouldn’t worry about no popping sound. It’s the relief that is worth CELEBRATING! 🙂
I also had similar experiences with chiro. I ended up getting a really fantastic physical therapist instead though who did some manipulation (but so much more subtly) coupled with exercises/stretches that helped the effect last longer. I wonder if your chiro could show you some stuff to do on your own?
In terms of sitting, have you tried using pillows or blankets while in front of the tv? If I’m sitting with my legs folded and to the side, I put something between my knees. I also move around a ton otherwise everything hurts. (Fortunately my ADHD means that moving around every 5-8 seconds has been a lifelong habit.) I often lie down on the couch with one or both legs up against the wall or sit with one leg draped over the arm rest. (My grandmother does the same, so even though it looks sort of silly, I just claim it as family tradition.)
Also, because I can’t seem to shut up today and this stood out to me,
Is this what you guys experience too (though I realize I’m probably a mild case).
If your journey has been anything like mine, or like many of the stories people have been sharing, you’ve had doctors, friends, family, et al. diminish and dismiss your symptoms and experiences. I have no idea if you’ve got a ‘mild’ case or not, but it doesn’t matter. Either way it completely sucks. So no need to qualify your statements. You’re among friends here. 🙂
Take care.
I have no idea if you’ve got a ‘mild’ case or not, but it doesn’t matter. Either way it completely sucks. So no need to qualify your statements. You’re among friends here. 🙂
Take care.
Well said, em. You gave me goose bumps… 🙂
I have no idea if you’ve got a ‘mild’ case or not, but it doesn’t matter. Either way it completely sucks. So no need to qualify your statements. You’re among friends here. 🙂
Take care.
Well said, em. You gave me goose bumps… 🙂
Why you had goose bumps Dr. Diana ?
DrD, that ball trick is how one ortho doc diagnosed and reset my sacroiliac misalignment when I was 20. He did it with me sitting on the edge of a chair though and I squeezed against his elbow and palm and POW! Shocked me but felt better too. That was a quick diagnosis. I forgot or didn’t realize it could go back out bc it wasn’t until my PT diagnosed right SI dysfunction this summer did I remember that diagnosis 15 years ago. Duh!!!
My current PT resents the out SI joint bt having me lie on my back on the exam table, hold on to table, “out” leg puts knee to chest and then push against him hard. Then he has me flip over and lay on my stomach, bend at knees, he tilts then to “off side” and I have to push back towards center while he provides resistance and holds my right SI/ hip down. This part is hard as hell and the more it’s out the more it hurts. Not major pain, just no strength to push at all.
I have major hip issues too. When I sit and watch tv I sit in recliner to avoid blood pooling (thanks POTS). My legs are NOT straight. They twist and turn from the hip down, femur, shin and all. So, when I sit the most comfortable way is in my recliner with back support behind me (fell down steps a few weeks ago), recliner up, right knee will flop out to 45 degree angle and foot at same angle while femur is only slightly turned, and left knee is at about 30 degree angle but foot and femur are both twisted to outside more (about 45+) degrees. After years of PT with “good” orthos who told me if I just strengthened my legs my knee would track straight I realize they must not have ever looked at my bone structure. The ridiculous bows in my lower legs became very apparent when I got cast for my AFO’s. I should have taken pictures of the casts.
And I agree, no need to compare who has it worse with EDS. That is the best part of finding the herd. You are finally among others who truly understand; the daily struggle, the doctards, idiot family and friends, etc. We get it. Don’t ever apologize.
Just to update. I’m now diagnosed with Heritable Disorder of Connective Tissue, NOS and also on mast cell activation treatment. Doing much, much better although every day there are challenges and pain.
Thanks for all the helpful info you all shared with me. It was very helpful. You’re the best!
Mary
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