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extreme SI joint hypermobility-need info!

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:22 AM in Lower Back Pain
I have severe SI problems, pelvis twisting with unequal leg lengths, pelvis twists easily/spontaneously causing leg length discrepancies to switch sides within minutes!

31, Female. I have (suspected) Ehlers Danlos Syndrome, Hypermobility type. I also have vonWillebrands type 1, Mild to Moderate.
This means I sprain/strain/subluxate easily and spontaneously. When any joint injury occurs, microbleeding is always present in muscles and surrounding tissues and blamed for extra damage and a longer healing time. Nearly all joints are affected, to differing degrees of severity.

SI history: problems since adolescence, frequent SI inflammation, sacral/lumbar spine soreness. Chronic mild to moderate back spasms. Because of frequency of other joint injuries, SI problems not addressed.

Recent catastrophic severe, month-long back spasm (with periods of total "lockdown"), no apparent cause, originating sacral/lumbar area led me to PT who discovered SI dislocated, pelvis twisted, one leg shorter than other by ½ inch. She attempted to “put back in place” with raised, bent leg resistance manipulation. It went back in very easily, a ¼ inch or more. Two days later, the OPPOSITE LEG is longer, again by like ½ or ¾ of an inch. This time the PT used the “stick method” to correct. Worked too easily again and was too extreme I think, caused lots of pain and swelling of SI areas for days.

I learned how to check leg length differences for myself, and have discovered the legs can switch lengths within a matter of minutes. ie: I checked leg length, right leg longer by roughly ½ inch. I laid on the floor, did my kegel/abdominal strengthening exercise (all they will let me do right now) and spent some time laying on back, then on each side. Checked leg length again, now left leg is longer by maybe ¼ inch.

From my reading/research, it seems like my SI ligaments have been “out” or sprained or subluxated, or whatever long enough that they have stopped healing. Guess my pelvis is just basically floating. This is leading to very bad back pain for over a month now. Everything makes it worse. The PT makes it worse. Apparently in severe or gross instability like this, no amount of core strengthening or targeted exercises can help.

Right now, taking Valium 3x/dy, HATE IT, but when I try to stop, back muscles “lock down” again. Use tems unit, pain meds, ice, heat, ect. Have been on Flexeril, then Soma, then Valium (not all at once!) plus painkillers for over a month now, have to get past this crisis mode!!!

I have run the gambit of disinterested doctors and all that, over the last six years. I still think they have the wrong diagnosis with the EDS, but treating the symptoms is all that matters anyway. Have had chronic knee problems (diagnosed after 5 years as knee “tracking improperly” due, of course, to hypermobility). Have also had chronic foot problems, lots of pain, extremely high arches. Also have had severe pain/swelling from subluxation/dislocation of rib/sternum joints (also fits ‘costalchondroitis” diagnosis). I have permanent knots there that don’t show up on any scans.

Now I wonder how many problems are based on the pelvic instability. I don’t think conventional PT core strengthening exercises are going to do it. My abdominal muscle strength was at 4 minus when we started, and PT said it should be a 5. She said not that’s not that bad, (not bad enough to cause such pelvic instability?),.

FYI: no money for prolotherapy or other alternative therapies. Also aggressive treatment is frowned upon because of excessive bleeding (due to vonWillebrands) and severe scarring and/or poor healing due to Ehlers Danlos Syndrome. Also I cannot take any NSAID or other anti inflammatory that interferes with clotting.

Any specific feedback would be appreciated. It’s hard to find any literature on extreme hypermobility in the SI joints/pelvis. I have pretty much exhausted Google and other medical research engines, but may be missing something.

Thanks for bearing with me, this was the short version!
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Comments

  • karenckkarenc Posts: 104
    edited 08/01/2014 - 9:02 PM
    Hi,

    I have hypermobility but not as bad in the pelvis area then you but I do still have had severe problems with the SI joint and I am scheduled to have an SI injection on Wed. They are going to do it using a xray to make sure they get it in there in the right spot and (after sedating me) they will put numbing meds and cortizone in that joint on the right side. They said that they can't do both sides on the same day. I am guessing it would be too much on your body. Can you bend your fingers back and touch the back of your hand? Or kind of twist them around in ways not many others can? That would be me! I used to be able to do all that but since my RA has kicked in hard I can't do that anymore. But I can sit in my chair, cross my feet, pull my crossed feet back towards me and it will pop my lower back/SI joint. No one else in my family or anyone else that I know does that. So I am the odd ball but it makes it feel better any way. You are more than welcome to PM me if you want!

    Have a great day!

    karenc
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