Ehlers-Danlos syndrome

[SeanArenas]

I just saw an orthopedic doctor who mentioned as a side note that I have Ehlers-Danlos syndrome. He said to look it up when I get home to learn about it, and that I have the Hypermobility type.

I was at the ortho to have my ankle checked out, and he noticed that my ankles are very flexible. I mentioned that my wrists are very flexible too, and at a mere glance (just holding my hand normally) he said they don't look right. He then asked me to bend my thumb towards my arm, and it can touch it easily - have been able to do that since I was a kid.

I then showed him that I can dislocate my shoulder painlessly and pop it back in with no problem. He shuddered and said not to do that in front of him. I didn't mention them, but I can also selectively bend only the last joint on my middle fingers (although it's uncomfortable), and can bend my right thumb back at a 90 degree angle at the joint.

It's strange that during my 18 years with a bad back, many chiropractors (who I know are not necessarily MDs) commented on the flexibility of my joints, but not one mentioned EDS. Also, no doctor has mentioned it before, although I have had several ankle injuries and issues with my wrists.

So - now that I know (well, apparently hypermobility eds is hard to definitely diagnose, so I should say "strongly suspect") I have this thing called EDS which explains my strange flexibility and some of my joint pains over the years, what can I do with this knowledge?

Also - there's no "cure," but are there treatments and things I can do to make the symptoms more manageable? Wrist, ankle, and shoulder pain are my most prevalent symptoms, but the doctor said they get worse as we age.

[Nametag]

Genetests.org, a website sponsored by the NIH, has produced this summary of treatment for EDH:

Management. Treatment of manifestations: physical therapy tailored to the individual; assistive devices (braces to improve joint stability; wheelchair or scooter to offload stress on lower-extremity joints; suitable mattress to improve sleep quality); pain medication tailored to symptoms; appropriate therapy for gastritis/reflux /delayed gastric emptying/irritable bowel syndrome; possible beta-blockade for progressive aortic enlargement; psychological and/or pain-oriented counseling. Prevention of primary manifestations: low-resistance exercise to increase muscle tone for improved joint stability; appropriate writing utensils to reduce finger and hand strain. Prevention of secondary complications: calcium, vitamin D, low-impact weight-bearing exercise to maximize bone density. Surveillance: DEXA every other year if bone loss is confirmed. Agents/circumstances to avoid: joint hyperextension; resistance/isometric exercise can exacerbate joint instability and pain; high-impact activity increases the risk of acute subluxation/dislocation, chronic pain, and osteoarthritis; cautious use of crutches, canes, and walkers, which put increased stress on the upper extremities.

A more complete discussion of this summary can be found here.

[si_blakely]

I have hypermobile joints, which I passed on to my daughter (and get regularly yelled at for, when she injures something). While it can be a pain, I do credit it with preventing some pretty damaging injuries over the years.

Case in point: I was moving our wheely bin down the drive when I put my foot on the edge of the drain and went over on my ankle. With the weight of the bin plus my own weight, I should have done some serious damage - torn tendons or broken ankle. Instead, it really hurt, and I had some bruising and tenderness, but only took a few days to settle down. I am also prone to subluxation of the shoulder - I did this while skiing a few years ago. Again, it really hurt, and took a few days before I was able to load the shoulder up again (ever try to use ski tows with only your non-dominant arm?), but I avoided a full dislocation which would have really ruined my week.

My best approach for avoiding problems :- get fit and work out, but build up slowly, concentrate on technique and don't ever go for a maximum lift. Running/cycling/rowing helps build up and support the ankles, knees and hips, Swimming/hand bike/rowing/shoulder press and chest press develop the shoulders and wrists.
Of course YMMV, IANAD, and you should discuss this with your primary healthcare professional and a professional exercise consultant before starting any exercise regime.

Si

[CandidGamera]

Huh. I have some unusual flexibility, myself.. I wonder..

Nah. It's probably just because I amused myself in my younger years by bending fingers back to touch the back of my hand.

[SeanArenas]

Argh, clicked wrong button and lost my reply! Why does clicking Post Reply instead of Submit Reply make you lose all of your typed text? That's like the 4th time this has happened on these boards

Nametag, good link, equally as good as the best I googled up, useful info.

si_blakely, I may have avoided the occasional broken bone because of it, but I've also severely damaged ligaments and tendons made already weak by the syndrome. My right ankle is a mess. In 1998, I had an avulsion fracture (chunks of bone ripped out of a bone by ligaments) and my talofibular ligmament was ruptured (destroyed, no longer have it). If my ligaments had been stronger, I might have only strained or sprained it.

Also, opening my front door to my apartment about a year ago caused a major wrist pain that lasted about a month. From turning a door handle. Apparently routine motion can injure EDS ligaments.

CandidGamera, symptoms of EDS are most apparently in children. It's possible you have it and never got diagnosed. I learned that I could touch my thumb to my forearm, bend it back 90 degrees, dislocate and relocate my shoulders, twist my ankles to odd positions, etc., at a very early age. I thought all kids could do it, until they tried and couldn't. Then I figured I was just very flexible. Then I find out that many of my problems could be tied to this syndrome.

[si_blakely]

Originally Posted by SeanArenas

si_blakely, I may have avoided the occasional broken bone because of it, but I've also severely damaged ligaments and tendons made already weak by the syndrome. My right ankle is a mess. In 1998, I had an avulsion fracture (chunks of bone ripped out of a bone by ligaments) and my talofibular ligmament was ruptured (destroyed, no longer have it). If my ligaments had been stronger, I might have only strained or sprained it.

Also, opening my front door to my apartment about a year ago caused a major wrist pain that lasted about a month. From turning a door handle. Apparently routine motion can injure EDS ligaments.

Oh, indeed. Those same loose ligaments that prevented a dislocation have also let go when throwing a tennis ball for my kids, causing a week of pain during the recovery. Those flexible ankles had a habit of turning over just walking. This is why I concentrate on building enough muscle round the joints to support it, and concentrate on using those muscles through risky activities to avoid joint slop that causes damage/pain.

Si

[SeanArenas]

Originally Posted by si_blakely

Oh, indeed. Those same loose ligaments that prevented a dislocation have also let go when throwing a tennis ball for my kids, causing a week of pain during the recovery. Those flexible ankles had a habit of turning over just walking. This is why I concentrate on building enough muscle round the joints to support it, and concentrate on using those muscles through risky activities to avoid joint slop that causes damage/pain.

I had noted at a young age that I had loose or weak ankles, but didn't know there was a syndrome name for it, or what other effects it might have, until yesterday when the doc told me about it.

I started Yoga a few years ago (which 100% eliminated my chronic back pain) and some of the balance exercises seemed like they would be good for me. I had really good balance, but did not have strong enough ankles to maintain the poses, so I practiced those extra. Eventually I got to the point where I can stand on one foot for 3 minutes or longer, in a variety of poses (opposite leg straight out, straight down, arms out or to the sides, etc.). I thought that would help protect my ankles from injury during activities, and probably did, but not enough. The syndrome can be managed, but not overcome.

[CandidGamera]

Originally Posted by SeanArenas

CandidGamera, symptoms of EDS are most apparently in children. It's possible you have it and never got diagnosed. I learned that I could touch my thumb to my forearm, bend it back 90 degrees, dislocate and relocate my shoulders, twist my ankles to odd positions, etc., at a very early age. I thought all kids could do it, until they tried and couldn't. Then I figured I was just very flexible. Then I find out that many of my problems could be tied to this syndrome.

I can just barely manage to pull my thumb down into contact with my forearm, and I can still occasionally bend my pinky or index finger to touch the back of my hand. I can even bend the last joint of my middle fingers without bending the others. I can no longer tuck my feet behind my head, but I can get close.

I can't dislocate my shoulders as far as I know. And I can't say I've noticed any particular problems, what kind of detrimental symptoms would I see?