Eds And Dislocations

[houswoea]

I'm just terribly curious,

I know many of you have EDS, and I was reading something about it in a text book for school (yay for summer credits). I was reading the markers of the hyper-mobility type, and this is why I was curious. Most of the things on there surprised me because I thought everybody could do them! Like hyper extending knees and arms, making your fingers touch the back of your arm, ect. I am still surprised that most people can't do that, to the point where I'm not convinced they can't.

So naturally, I asked my brother to try to do the things on the list and he couldn't do it.

So... my main question is this: do all you folks with EDS of this type have trouble with dislocations? I ask because I've always been freakishly flexible... but I was a dancer so it worked out well. I've never dislocated anything though, not even after 15 years of dancing. I developed POTS just this last September.

Just trying to figure all this stuff out, because I've certainly found my doctors can't on their own :-P

Elizabeth

[juliegee]

Heavy duty summer reading! Medical school?

My son & I are DXed with an unknown connective tissue disease. We aren't hypermobile, BUT he experienced a severe cervical subluxation once while running. He simply turned his head to look at the moon. He was immediately unable to bear the weight of his head & experienced severe pain, hospitalization- scary.

I'm going through a weird phase now where my hips are popping out of joint daily. I am a runner & I am suffer repeated injuries from this. During one orthopedic visit, they were so shocked by me that they took photos. Apparently the dislocation caused one leg to appear 2 inches longer than the other & I was still trying to run- OUCH. I have to do PT 3 times a day just to keep my hips in place. Frustrating.

We've both had bones in our feet lock up and/or dislocated as well. I've been meaning to ask others about this. Anyone else deal with this?

Julie

[Crow]

I have classical EDS - type II - I have small joint (fingers) and large joint (elbows, knees, shoulder etc) hypermobility but I've only dislocated once (finger).

I sublux all the time. And joints pop, crack, grind all the time. I've had that foot bone moving around / locking up until I get it in the right place thing happen too.

I really had no symptoms until age 40 then my body started falling apart LOL.

[houswoea]

Okay thanks! I'm a special education major... sometimes they give a name of a common disability or condition and then have a reference in the back with a little more detail. I was interested because I know alot of people with EDS get POTS, so I read about it!

Thanks for the info!

[mkoven]

I am somewhat hyperflexible, but not extremely. I am some type of connective tissue disorder, possibly atypical hypermobile eds. I injure very easily, and Julie, my hips are driving me NUTS. Constant subluxing. And I've popped and/or injured most joints at some point. Julie, what exercises are you doing for your hips?

[juliegee]

I am somewhat hyperflexible, but not extremely. I am some type of connective tissue disorder, possibly atypical hypermobile eds. I injure very easily, and Julie, my hips are driving me NUTS. Constant subluxing. And I've popped and/or injured most joints at some point. Julie, what exercises are you doing for your hips?

They're a little hard to describe.... Here is a link ti my PT's office: http://www.horizonphysicaltherapy

Click onto "Home Exercise Program," then the lower body series. I do the self correction & hip sway Additionally, I have to put a dowel (like a large sharpie wrapped in a soft cloth) under the left side of my sacrum while I'm lying on the ground with bent knees for 3 minutes at a time. They only take about 5-7 mins, but feel like a hassle. If I do it 3 times a day, my hips stay in place & I can run pain free. Otherwise, my hips dislocate. Lots of injuries have ensued from this, like a severe groin strain, severe gluteous medius inflammation, and even injuries to the tendons above my ankles from one leg being longer than the other. I've had to get repeated steroid shots and lots of other treatment.

Do your hips pop out too? Mine used to sound like champagne bottles being opened if I moved the wrong way, but I'm getting better. Anyone else?

[mkoven]

Hi Julie, Unfortunately your link didn't work. I'd love to know the maneuvers. I pop and slosh. Very disabling, I can't consistently fire my glutes, because everything is so unstable.

[juliegee]

Sorry! Google Horizon Physical Therapy in Athens, GA & follow my above directions.

I'm also sorry to hear how loose your ligaments are too. I never realized that I was actually dislocating my hips until my PT proved it with X-rays and photos. I get it now. The exercises REALLY help. I can actually run as long as I do the therapy before.

Let me know if it helps YOU-

Julie

[mkoven]

Thanks, Julie. Those actually look like exercises to correct the pelvis (sacroiliac) rather than the hip joint directly. I come out in both places. I think pelvic instability is quite common, hip instability less so.

[juliegee]

Thanks, Julie. Those actually look like exercises to correct the pelvis (sacroiliac) rather than the hip joint directly. I come out in both places. I think pelvic instability is quite common, hip instability less so.

Live & learn; there's a difference ????? Here's a blurb I just read to educate myself: http://www.faqs.org/sports-science/Ha-Ja/H...Physiology.html

I guess it's my pelvis that's extremely unstable, BUT, my legs to pop out of my hip joints with loud "pop" sounds too. Not sure which causes the leg length discrepancies??? Regardless, those (rather simple) exercises have strengthened BOTH issues. Since I've done those exercises regularly, I can't even get my hips to pop out- Yay. Hope they help you too

Julie

[mkoven]

Thanks, Julie. I'm going to Saint Louis to see hip specialists. I'm unstable at si joints, the pubis, and hips (where femur goes into acetabulum.) Can barely walk now, as left leg is so unstable. Trying to avoid surgery, but I've had lots of PT. Willing to try anything short of surgery.

[juliegee]

Thanks, Julie. I'm going to Saint Louis to see hip specialists. I'm unstable at si joints, the pubis, and hips (where femur goes into acetabulum.) Can barely walk now, as left leg is so unstable. Trying to avoid surgery, but I've had lots of PT. Willing to try anything short of surgery.

So sorry I'm just experiencing a fraction of that & it's been so painful. I can't imagine... I pray the St. Louis docs can help. Please let us know.

Julie

[Rachel]

I have hypermobile EDS, but I haven't had any complete dislocations. One of my biggest problems is loose ligaments in my feet. It was those loose ligaments that sent me to the doctor a few years before POTS ever did. I now have more loose joints that I have to be careful with. They sometimes feel like they are slipping if I'm not careful.

Julie, I have problems with my hips (pelvis?) too. I'm not exactly sure what it is. I don't think it is a complete dislocation because I can put it back in place on my own. Quite often something will be wrong in the joint, and I lose my range of motion. I can move my leg forward a little and backward a little, but I can't move it to the side at all, and it is extremely painful if I try. To fix it I bend my knee, pull my leg up toward my chest, pull my pelvis back, and then turn my knee outward. Then I hear popping sound, and my joint is comfortable again, and I am back to my full range of motion. I don't know exactly what is going on, but something gets loose and then gets put back in place. It is one of those things that I've never asked my doctor about because it is a small nuisance in comparison to other things. I'd be willing to try the exercises you mentioned if that might help to keep things in place.

When I was 12 and was first told that I was too flexible, it didn't seem like such a big deal to me. I knew a lady who was also hypermobile, and she told me that it would cause a lot of problems down the road. And, yes, it definitely is causing more problems as I get older. And I'm still in my 20s! (just barely, but I am!)

Rachel

[juliegee]

I have hypermobile EDS, but I haven't had any complete dislocations. One of my biggest problems is loose ligaments in my feet. It was those loose ligaments that sent me to the doctor a few years before POTS ever did. I now have more loose joints that I have to be careful with. They sometimes feel like they are slipping if I'm not careful.

Julie, I have problems with my hips (pelvis?) too. I'm not exactly sure what it is. I don't think it is a complete dislocation because I can put it back in place on my own. Quite often something will be wrong in the joint, and I lose my range of motion. I can move my leg forward a little and backward a little, but I can't move it to the side at all, and it is extremely painful if I try. To fix it I bend my knee, pull my leg up toward my chest, pull my pelvis back, and then turn my knee outward. Then I hear popping sound, and my joint is comfortable again, and I am back to my full range of motion. I don't know exactly what is going on, but something gets loose and then gets put back in place. It is one of those things that I've never asked my doctor about because it is a small nuisance in comparison to other things. I'd be willing to try the exercises you mentioned if that might help to keep things in place.

When I was 12 and was first told that I was too flexible, it didn't seem like such a big deal to me. I knew a lady who was also hypermobile, and she told me that it would cause a lot of problems down the road. And, yes, it definitely is causing more problems as I get older. And I'm still in my 20s! (just barely, but I am!)

Rachel

Definite pelvic instability (worsens with babies ) and maybe your hips really are popping out too. I can't believe how much those exercises help- especially BEFORE any physical activity. Try the PT and see if it helps.

I have bones in my feet that lock up and slip out too- the talus and cuboid most recently. Frustrating.

Julie

[comfortzone]

Hi -- I wasn't diagnosed with Hypermobility Syndrome aka EDS-HM till 51 years of age. It was all the bizarre joint pain all over my body while recovering from bilat knee replacements that had me seek out what was going on. I had hip replacements as well a couple years earlier than the knees.

On exam I have a Beighton score of either 4 or 6 depending on which opinion you read in my med files. My revised Brighton score is really high -- so it becomes kinda cut and dry when you use either of those 2 quite widely accepted criteria scales. But to my knowledge I have never had a frank awareness of any dislocation. It's kinda late to tell if my knees hyperextend - but my hands do all the tricks and wrists and spine....I was told my hip sockets were shallow - which is common for this -- yet I wasn't aware of them ever popping in and out of place ... but yet my surgeon pulled out 80 year old hips during the surgeries. I do not have any of the soft velvety skin or stretchy skin issues some have.

The best book I've read about this is Dr. Brad Tinkle's book (from Cincinnati Children's Hosp) - Issues and Management of the Joint Hypermobility Syndrome and Ehler's Danlos Hypermobile Type -- It's a smallish book - clear and concise. A new book by him to follow up on that one is the Hypermobility Syndrome Handbook or EDS Handbook -- It just came out -- I'm going to order it on Amazon it's 19.99 I think - And the other book was about ten dollars. Dr. Tinkle writes and compiles data nicely -- does our country a great service in tackling our bendy issues. I've emailed him and he's sent a quick note back...He's the keynote speaker for this years EDS Conference in Baltimore....it either just took place or is about to.

Anyway lots of people are bendy -- what is the mystery is what makes a person who is hypermobile suddenly develop the painful pain in the rear "syndrome"......... For many it was precipitated by some kind of major stressor such as pregnancy - in my case the surgeries.....in others something else.

I can sublux things - and physical therapy usually makes me "worse" = such as recently I had "hand therapy" to help with painful hands and developed full on trigger fingers on both hands that required cortisone injections to quiet down.... It's just this sort of thing that frustrates the PT's and OT's and makes life challenging. They simply MUST listen to the patient -- they usually know what will work or what will make them worse. We're famous for getting all the "itis" things - tendonitis, bursitis, etc.

Now I'm investigating the dysautomia stuff as in some studies up to 70-80% of EDS patients have POTS or related issues -- and I seem to run at a high adrenergic state -- tachy etc... Blood pressure issues etc........

[issie]

I have always been double jointed in my ankles. I could turn my feet up on edge and rotate them out on edge. I can without stretching bend down with legs crossed and put my hands flat on the floor. I do believe that the EDS caused my recent fall and the breaking of my ankle (basically off my leg). Even though I fell over a concrete parking block, the way I fell over it and how I got broken up - seems to be EDS related. Also, I have osteopenia and this is another symptom of EDS. My knee caps dislocate all the time and I hyperextend my knees.