Hypermobile Joints - Ehlers Danlos

[ravenwoodglass]

This is mainly out of curiosity, I have noticed that in my family these two ? genes seemed to manifest together. I was just wondering if it is more common in us gluten intolerants. I know I suffer less with sleeping (feet and ankle) dislocations and stuff when gluten-free. I believe it has to do with fluid build up in the joints making them more prone to shift. It got better when my general edema did. Was just curious if there are others like me.

[Timber4est]

Well, I have always had hypermobile joints and this in and of itself has caused a few injuries. My daughter, who was diagnosed with Celiac friday also has hypermobile joints like me. Caused by Celiac? No clue, could just be another trait you passed down.

On a gluten free diet, I don't have nearly the swelling I did, but I am not long into the gluten-free diet yet, more time will tell.

Deborah

[TCA]

I too have hypermobile joints and lots of body/joint pain. I went gluten-free in Sept. since I was nursing our celiac dauther and have never felt better. I had no idea celiac disease could cuase all of this, but I haven't hurt in months, except last week when I got glutened and I felt awful. I guess they get it from me. I never thought about the hypermobility issue being connected until now.

[Becky6]

My mother, daughter and I are all hyper mobile. All of our joints ached. Now since my daughter and I have been gluten-free we don't have the pain anymore! I could barely move and it is all gone now!

[Ursa Major]

I also have hyper mobile joints (meaning for instance, very unstable ankles, I've sprained them many times, and fractured the left one four years ago). My wrists are also not very strong. The awful pains went away after going gluten, lectin and salicylate free.

[tiredofdoctors]

I have hypermobile joints, too ... never been diagnosed with Ehrlers-Danlos. I do have the cigarette-paper skin, though. You can actually see all the tendons in my wrist (palm side, too) and it goes all the way up into my arm -- you can see where the muscle begins. There is a ligamentous laxity scale that is scored 1-9. The scoring goes as follows:

Can you put your thumb down to your wrist? (1 point for each side that you can)

Can you pull your pinky finger back so that the bottom joint is less than 90 degrees? (1 point for each side)

When you straighten out your arms, with them at your sides, palms facing forward, are they completely straight from the elbows down? (1 point for each side)

Can you lock your knees back so that they look backward vs. forward? (1 point for each side)

Can you interlock your hands, and bend down, with your feet together, not bending your knees, and put your palms on the floor (1 point)

I THINK the scoring goes like this: (my office stuff is still in boxes after having to close)

1-3 points: No risk for ligamentous laxity

4-5 points: Moderate laxity -- use caution when performing vigorous activities, sports

6-9 points: Severe laxity -- at risk for multiple injuries, sprains, strains, and for females, at risk for bladder & uterine prolapse

Don't quote me on the scoring table, but I know the testing things are absolutely right. I tested all my patients that came in.

Maybe there is a link . . . . That's a really good question.

[Nancym]

Wow! What timing. I just went to the Rhuemy on Friday and he diagnosed me with "hypermobility syndrome". I had already read up on Ehlers Danlos and asked if it could be that. He said "no". However... I think he ruled it out too soon. There's a lot of degress and variations in it. I have the easy bruising, the multiple underskin fatty tumours of it. I have it in a LOT of my joints, ankles, knees, hips, elbows and I'm having reoccuring muscle and joint pains just about everywhere. I don't have the super elastic skin though. He's thinking I might have Sjogren's or potentially malabsorption.

But I didn't think to ask him what I should do to keep my joints from getting damaged. Would yoga be potentially too stressful on someone with hypermobility? I know they're always encouraging you to take the stretch as far as possible, which in people like us might be too far.

[ravenwoodglass]

I have hypermobile joints, too ... never been diagnosed with Ehrlers-Danlos. I do have the cigarette-paper skin, though. You can actually see all the tendons in my wrist (palm side, too) and it goes all the way up into my arm -- you can see where the muscle begins. There is a ligamentous laxity scale that is scored 1-9. The scoring goes as follows:

Can you put your thumb down to your wrist? (1 point for each side that you can)

Can you pull your pinky finger back so that the bottom joint is less than 90 degrees? (1 point for each side)

When you straighten out your arms, with them at your sides, palms facing forward, are they completely straight from the elbows down? (1 point for each side)

Can you lock your knees back so that they look backward vs. forward? (1 point for each side)

Can you interlock your hands, and bend down, with your feet together, not bending your knees, and put your palms on the floor (1 point)

I THINK the scoring goes like this: (my office stuff is still in boxes after having to close)

1-3 points: No risk for ligamentous laxity

4-5 points: Moderate laxity -- use caution when performing vigorous activities, sports

6-9 points: Severe laxity -- at risk for multiple injuries, sprains, strains, and for females, at risk for bladder & uterine prolapse

Don't quote me on the scoring table, but I know the testing things are absolutely right. I tested all my patients that came in.

Maybe there is a link . . . . That's a really good question.

The scale is pretty cool, I'm a 6 using it but it's weird it doesn't list a couple of my most mobile joints - shoulders, ankles. Gym teachers always went 'huh' when we did wing stretcher excercises in gym. I find it odd that each family member has differnent joints affected and my DS is the only one with the stretchy skin. We call it the frilled lizard look . I was a real challenge for the PTs when I was young. I'm just glad being gluten-free has helped the dislocations and pain and glad to hear it has for others. I really did not expect as many replies as I've had. Makes you go hummmm

But I didn't think to ask him what I should do to keep my joints from getting damaged. Would yoga be potentially too stressful on someone with hypermobility? I know they're always encouraging you to take the stretch as far as possible, which in people like us might be too far.

I would ask to be sure but when I was younger they had me do yoga and ballet. They both helped with core strength and also helped to tone the muscles that support the joints and the ballet helped with balance issues. A excercise ball, the real big ones might help too. You also might ask for a referral to a PT who can show you how to excercise so you get benifit from it. Many of us with different joints affected need to modify stances and stuff to actually get a stretch or a work out.

[DonnaD]

This is mainly out of curiosity, I have noticed that in my family these two ? genes seemed to manifest together. I was just wondering if it is more common in us gluten intolerants. I know I suffer less with sleeping (feet and ankle) dislocations and stuff when gluten-free. I believe it has to do with fluid build up in the joints making them more prone to shift. It got better when my general edema did. Was just curious if there are others like me.

We have hypermobile joints in our family. My sister is worse than me, she can put her hands flat on the floor when bending down. We all have hypermobile knees and elbows and shoulders but not really that noticable we only found out when seeing a rheumatologist who though we had developed fibromyalgia because of the hypermobile joints. some of my toes are double jointed. My knees make an awful noice too! I had never heard of Ehlers Danlos before seeing your post! My 2 daughters also have slightly hypermobile knees and elbows. Is there a link to chronic back neck pain?

[Ursa Major]

I can't bend my thumbs back, but got all the other points. But my knees bend way back, I've never seen anybody else being able to bend their knees backward as far as me. And my chiropractor has to adjust both my feet and ankles every time I see him (twice a week), and will comment on my feet and ankles moving way too easy and far (which of course causes them to be out of whack so often).

I always thought it's normal to be able to see all my blood vessels and tendons on my hands.

[tiredofdoctors]

The thing with yoga is this: I herniated two discs in a place where you normally don't get herniations (first two lumbar) because of doing "the plow" in my 30's. I'm NOT the best person to ask about yoga, for that reason.

As a practitioner, I think that any consistent, SANE, easy stretching program is a MUST for people with hypermobility syndrome. The reason is this (and I had a patient who was research on this very thing): my theory is that people with hypermobility syndrome have too much elastin in their ligaments -- the things that connect bone to bone. But that doesn't necessarily mean that their TENDONS -- the things that connect muscle to bone -- are the same. In fact, I asked this girl if people with hypermobile joints could have too much COLLAGEN in their muscles, making them much less elastic. THAT was her research project. (She was a PhD in biomedical research) She said, at that point, everything led to "yes". I asked her if it was genetic -- she said that they could only say that it was "familial" because they did see it running in families, but couldn't isolate an allele on a gene to say genetic.

All that said, the point is this: If you have hypermobile joints, and your MUSCLES are too tight, the joints have to continue to stretch to compensate for the decreased amount of length in the muscles. Also, every time you work a muscle, you increase the diameter of the muscle fibers -- which INCREASES its size, but DECREASES its length. That's why you should ALWAYS stretch after exercising.

Okay, I'm off my soapbox. Hope this helps, but sorry for the rant . . . .

Sorry, had to add more: NEVER -- NEVER stretch past what feels like "Oh yeah, this feels really good." That stretch until you can't push any further and it's hurting -- all you're doing is causing micro-tears in the muscle. They then heal, with a little scarring, which makes them SHORTER than when you started -- so you've actually set yourself BACK. Okay, NOW I'm finished.

[tarnalberry]

The thing with yoga is this: I herniated two discs in a place where you normally don't get herniations (first two lumbar) because of doing "the plow" in my 30's. I'm NOT the best person to ask about yoga, for that reason.

I've not been diagnosed as hypermobile, but my PT's have all noted that I'm unusually flexible. I've been doing yoga for five years, and plan to start teaching this year, and wanted to comment on this particular point:

Yoga is a serious exercise!

Ok, Ok, I know it sounds like I'm being whiney, but tiredofdoctors is *absolutely* right that - like any other activity, sometimes moreso - you can get seriously injured doing yoga. Granted, just about every person I know who's done yoga seriously for a number of months/years, can put their palms on the floor with straight legs, but it's not all fun and games. (Those are the only two points I get to on that chart - and not even that one first thing in the morning. ;-) ) A good yoga practice focuses on being aware of the body's limits - as was mentioned, not getting to the point where it hurts. Unfortunately, in too much of western yoga, particularly as teachers try to make it less 'frou-frou', this mind-body connection is less emphasized, and you get people going through poses methodically as normal (which gives you the *time* to more hurt yourself) and mindlessly (which gives you the *opportunity* to more hurt yourself). And when you get competitive people into a class... ugh! It's not even worth talking about.

As I've learned through my practice and my PT's, the hypermobile (or even just the naturally flexible) MUST bein EXTRA vigilent about their yoga practice - especially until they develop the muscular strength so that they can rely on their muscles instead of tendons and ligements. The back and the knees are two spots where this is particularly easy, requiring core strength throughout even the smaller muscle groups that most exercises don't provide without specifically targeting.

A good teacher will talk to you about your strength and lead you through less demanding poses first, working with you to guage where your limit is and then extending it *safely*. And a good teacher should make it clear that taking a stretch "as far as you can" *ONLY* means taking to the point where you first feel the stretch, and working *carefully* from there, avoiding pain. As my teacher often used to say "If it hurts, it's not yoga." This isn't done instantly, over the course of a single class, or even in a month. It takes months and years of practice.

Of course, I don't mean to discourage anyone. It can be a very rewarding practice, and I certainly love it.

[tiredofdoctors]

OMG!!!!! Tiffany -- you get it!!!!! And so do your teachers!!!!! I could only hope that you would move to Louisville, KY and start teaching here!

You are going to be an OUTSTANDING teacher. You are so right on every point that you made. As a PT, I am SO EXCITED to FINALLY hear that from someone who is going to be a teacher.

Keep getting the message out -- YOU ROCK ! Lynne

[tarnalberry]

And so do your teachers!!!!!

You're sweet. :-) And you hit the nail on the head - I can only thank my teachers. All of them. The actual yoga teachers, the other students, and the PT's I've had.

[nogluten-]

This is mainly out of curiosity, I have noticed that in my family these two ? genes seemed to manifest together. I was just wondering if it is more common in us gluten intolerants. I know I suffer less with sleeping (feet and ankle) dislocations and stuff when gluten-free. I believe it has to do with fluid build up in the joints making them more prone to shift. It got better when my general edema did. Was just curious if there are others like me.

I have hypermobility and degenerative joint disease. I think it's from having malabsorption for so long without a diagnosis.

[paw]

I get all your points and a few more not listed. I had uterine prolapse at age 28 (severe), my hips just "pop" right out of place. I have learned to put them back myself. I have extreme flexibility in all joints. I have fibromyalgia. I broke my ankle years ago. I have sprained ankles multiple times. I have knees and elbows that bend too far when in the "locked" position. Mom and one sister have hypermobile joints too.

In Sept 04, I had severe injury to both shoulders, they dislocated and joints were damaged. I had surgical repair to the right one and it was suggested to wait a year and fix the left one. Well the healing year was up a few weeks ago and the right shoulder still dislocates when I do things like pick up a cup of tea or anything that I reach out to the side. I am not getting the left one repaired because the right one did not really fix the problem. (The right was a lot worse and it HAD to be repaired.) I had one of the best shoulder specialists in the country -- he does not see injuries like mine much and people usually recover better. I should have full function now and the pain should be minimal -- but it is not.

Because of this I don't drive unless I HAVE to (severe pain from steering the car), I don't cook because picking things up like reaching for a plate in the cupboard or filling a saucepan with water will dislocate me. I don't shop much because I can't push a cart or pick up items off the shelf. I have learned to put the shoulder joint back in place (or pretty close) from the physical therapist and I try very hard not to do the things I know cause it to come out. I don't sleep much because of pain. It is very limiting. If anyone has ideas that will help, please post them!

Most of the physical therapy exercises designed to strengthen the shoulder just made it pop right back out of place. I did about 5 months last year and I don't want more therapy -- it was expensive too.

[sillymomx3]

I have Ehlers-Danlos type 3 with overlapping symptoms of other types. My 2 year old son has been extremely hypotonic (floppy) since birth. He was dx with Ehlers-Danlos type 3 at 16 months old. He also has extreme overlapping of symptoms. It was him that led to my dx. My niece, sister, mother, and maternal grandfather (passed) all have EDS 3 also. My MGF died of spontaneous organ rupture at 49. 39 years later a sweet baby boy led us to undrstanding the "quirky oddities" of my family.

I have celiac disease as well as my oldest (7) year old son. He has blue sclera, pectus excavatum, and a tricuspid heart defect all symptoms of EDS but he is not at all hypermobile. Very interesting. Not sure where the Celiac comes in. My mother, sister, niece, all negative. My other two children have the genetic markers for Celiac. My dad passed away 9 years ago before all this came about but I remember him always having tummy trouble and he was so little!

Christi

[Fiddle-Faddle]

I get all your points and a few more not listed. I had uterine prolapse at age 28 (severe), my hips just "pop" right out of place. I have learned to put them back myself. I have extreme flexibility in all joints. I have fibromyalgia. I broke my ankle years ago. I have sprained ankles multiple times. I have knees and elbows that bend too far when in the "locked" position. Mom and one sister have hypermobile joints too.

In Sept 04, I had severe injury to both shoulders, they dislocated and joints were damaged. I had surgical repair to the right one and it was suggested to wait a year and fix the left one. Well the healing year was up a few weeks ago and the right shoulder still dislocates when I do things like pick up a cup of tea or anything that I reach out to the side. I am not getting the left one repaired because the right one did not really fix the problem. (The right was a lot worse and it HAD to be repaired.) I had one of the best shoulder specialists in the country -- he does not see injuries like mine much and people usually recover better. I should have full function now and the pain should be minimal -- but it is not.

Because of this I don't drive unless I HAVE to (severe pain from steering the car), I don't cook because picking things up like reaching for a plate in the cupboard or filling a saucepan with water will dislocate me. I don't shop much because I can't push a cart or pick up items off the shelf. I have learned to put the shoulder joint back in place (or pretty close) from the physical therapist and I try very hard not to do the things I know cause it to come out. I don't sleep much because of pain. It is very limiting. If anyone has ideas that will help, please post them!

Most of the physical therapy exercises designed to strengthen the shoulder just made it pop right back out of place. I did about 5 months last year and I don't want more therapy -- it was expensive too.

Oh my gosh! I was hit by a car last month (sorry, long story) and dislocated my shoulder. The PT I'm seeing is very concerned because it STILL seems unstable after 5 weeks. I'm pretty upset, too-it's not a good injury for a violinist to have. It's been popping out while I'm sleeping (I assume I must be rolling on it). But I've never been hypermobile or hyperextensive--only the last joint of some of my fingers are double-jointed, and maybe my thumb.

My PT is having me do only specific strenghtening exercises (the ones that help hold the shoulder in place), and we've stopped the range-of-motion stuff exercises, too until the shoulder is stronger. She also thinks I should have an MRI so that we can see what is really going on in there.

Most of the people I've talked to who have had shoulder dislocations had close to a YEAR of PT before they were back to normal.

Paw, How did you injure BOTH shoulders? (I feel guilty complaing about one, I don't know how you are managing!)

[SandraB]

This is mainly out of curiosity, I have noticed that in my family these two ? genes seemed to manifest together. I was just wondering if it is more common in us gluten intolerants. I know I suffer less with sleeping (feet and ankle) dislocations and stuff when gluten-free. I believe it has to do with fluid build up in the joints making them more prone to shift. It got better when my general edema did. Was just curious if there are others like me.

Just searched for anyone else with this - both my children have clear hypermobility and can twist and cllick their skeletons like something from the Addams family. I also remember being able to bend my joints quite a long way back as a child - have stiffened up since. I am not diag. celiac but I have been gluten free for several years since I discovered I reacted to it strongly after reintroducing gluten after 6 months on Atkins. A cousin's child on my mother's side is diag. celiac however - we have bowel cancer and hypermobility up the female line. I was eating gluten while pregnant and had been doing so for 40 years. Hmmm.

Hypermobility is genetically inherited. Does look as though they should be researching for possible links.

Try searching for Hypermobility Syndrome Association on Google, it has more on the syndrome though not on links with celiac.

Thank you so much for the post.

SandraB

[ginghamkim]

I'm so glad that someone else has wondered if there is a connection between gluten-intolerance and joint issues. I have dislocated my knee (then surgery), dislocated shoulder 6 times (then surgery), dislocated my thumb (then surgery) all before I was 20 years old. This all happened from normal everyday movements. I was scared to step wrong or reach for a book on a shelf.

I'm not a doctor, but if your lactase enzymes are damaged (b/c your villa is damaged) and you're not absorbing the calcium for your bones from dairy (b/c pre-gluten intolerance this was the only source you knew or cared about), it makes total sense that joints would be weak. Hummmm. Sorry if this is a repeat.

All I can say is that I have had 3 orthopedic surgerons in my lifetime and not one of them has ever asked about my calcium intake. They only could say that I have weak joints but never sought after the source.

Very interested if anyone else has had different experiences with orthopedic physicians.

[Michi8]

Interesting. I have hyperextension of some joints, especially fingers/thumb, shoulders, arms, touching the floor, etc. but this has never been discussed with any doctor. I just figured it was one variation of "normal," along with being able to see veins so well through my skin. I never did think easy bruising was normal, but didn't connect it to hyperextension either. Now I'm beginning to wonder. The connection to prolapse is interesting too.

Whenever I do yoga or pilates, I only stretch to a comfortable level (and never bounce/pulse further into a stretch...unlike they encourage us to do in Synergize class (ouch!)) However, that comfortable level is beyond "normal" rotation of joints. Guess I'm lucky that I've not experienced dislocation because of it...perhaps all my years of dance provided the muscle strength to properly support my joints.

Michelle

[ravenwoodglass]

Hi, Just a note for everyone that replied, thanks. It sure does seem there may be a correlation. One thing that I want to point out for safety sake is that there is a syndrome called 'Hypermobility Syndrome' that will effect only the joints.

For those of you who are hypermobile and have doctors that have not addressed it, if at all if possible you should ask your doctor to find out genetically whether it is hypermobility only or Ehlers Danlos.

Some of the Elhers Danlos sub types have concurrent effects on other parts of the body. I have sub type 4, this makes the tissue in my intestines as fragile as other subtypes make the skin. It results in widespread diverticuli and increases the possibility of intestinal rupture. If you have had a colonoscopy and extensive diverticuli were present ask your doctor to type you and if you start to bleed after a severe glutening don't assume it to be hemmies.

[anerissara]

My son appears to be "double jointed"...that is, his joints are really, really flexable. He can pretty much tie himself up in a ball with both legs behind his head and roll around...does the "human jumprope" where he laces his fingers together and jumps through both arms, then raises them over his head and 'pops' his shoulders, all without opening his hands. Does this sound like hypermobility? That seems to be the only symptom he's got, and it doesn't bother him at all (in fact he loves showing off his human tricks). He's never sprained anything or hyperextened something to the point where it hurt, and hasn't complained of joint pain. I keep telling him not to do the 'tricks' too much though, because it *looks* painful and I know it may be an old wives tale but I've heard it could cause arthritis...no idea if that's true but it looks like it should cause something to go amiss. Also, his shoulder blades sort of stick out like chicken wings when he flexes his back.

[bluejeangirl]

Thanks for the info raven. I have loose ligaments and especially right before my period it gets bad. I think its the same hormone that's released at the end of the pregnancy? I'll wake up with neck and hip pain just if I don't change positions alot.

Even though I can bend further then most people it doesn't mean its good for me cause it does cause joint pain if I do it. I wish the muscle would do the stretching instead of the ligaments but I never figured out I needed more calcium and magnesium then what I was getting. I wish I knew more about this. I'll have to explore it.

Gail

[tiredofdoctors]

Addendum: I saw the geneticist about a month ago, and I DO have Ehlers-Danlos. Should have known . . . . . .