hypermobility/double jointed?

[manderzpants]

hello, i was wondering if anyone else on the forum was "double-jointed" and has a lot of painful related problems from it? i am 33 and have had pain my entire life, and have always been told by just about everyone that i am "too young" to be in that much pain, etc. which of course i find really offensive and irritating. it's not like i cant tell my body "hey! you're too young! get it together!" and it all just stops.

 

[chickensducks&agoose]

No, but my friend is. SHe has horrible problems with her hips and ankles, and one of her wrists, but she is SUPER bendy, and does gymnastics and ballet, and is a gas at parties.

 

[booker81]

Look up "Ehlers Danlos Syndrome"

Don't get caught up in the "weird" types, just the Hypermobility or type III.

I have it - and it explains a whole LOT of things for me.

A good rheumatologist is what you want to see....

 

[ChooksChick]

Try looking into the disorder called Ehlers-Danlos Syndrome.

My whole family has it, and the double-jointedness (trick ankles, etc.) goes hand-in-hand with it. It has incredibly variable symptoms and all different levels of seriousness, but it may strike a chord with you and help you figure out a way to improve your daily life, if it fits.

Basically it's just a protein disorder in the collagen.

I can do the splits at 40 without ever stretching for a decade. It's really weird!

 

[ChooksChick]

Booker! You type faster than me...or it was the link-finding delay...

 

[Livinzoo]

I am. The biggest issue I have is with my jaw. Because of the loose ligaments I have 2 types of TMJ in each side. I actually asked a dr to remove my jaw. They wouldn't and years later I
glad because I've got rid of most of the pain. My pain was caused by muscle spasms and I started taking magnessium every day and have been pretty much pain free since then. I usually take 500mg a day. But now I'm taking 1000mg a day because I'm pregnant.

You might want to try some magnessium to see if it helps your pain.After 2 weeks of taking it you should notice an improvement.

 

[cparian]

My thumbs are double jointed where they attach to the hand at the skin. I have problems opening large jars because of it. When your thumb bends in you can't get the force you need to twist the jar lid. I also have problems pushing the throttle on the quad. It once again requires force from a stiff joint that I just don't have. After riding a half hour, the pain is so much, I have to twist the throttle around the handle bars so I can grip it with my fingers instead of pushing with my thumb. The only problem with that is human nature is to grab the handles tightly when you are on rough terrain.

 

[booker81]

Hee hee hee! EDSers unite!!!!

This site is more indepth on the Hypermobility type...skip some of the gobbledegook at the top...

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=eds3

I'm a 9/9 on the Beighton scale, have mildly stretchy skin, cruddy scar formation, fibromyalgia, chronic pain syndrome, bleeding and bruising problems and heart problems. Most of my joints partially or completely dislocate, including things like ribs, spine, and once, apparently had one of my skull plates shift.

My favorite position to sleep in usually involves dislocating my shoulders and usually one hip.

I look like a normal person

I'm 29, and functional because I'm on 5 medications for pain management. ETA: My meds are not dopey making meds. Before them, I was nonfunctional and on the losing battle of filing for Social Security. Now, I'm only in mild to moderate pain all day, I lay down to bed, take my meds, the pain starts getting worse, meds kick in, I sleep soundly through the night (with various joints dislocated), wake up feeling fantastic, take my meds that help my brain function and keep my stomach from eating itself, and off on another mild to moderate pain day - that is still very productive.

MUCH better than horrible, debilitating pain, pain that is worse than breaking bones (and I've broken a lot of those), and tiredness that was never fixed.

Don't knock them til you try them.

 

[booker81]

OOO!! I know one fun common EDS thing....can you touch the tip of your nose with your tongue?

http://en.wikipedia.org/wiki/Gorlin_sign

 

[callducklover20]

I have had issues all my life too and I get the same answer as you "YOU are too young to have that much pain"- I get so mad at Drs every time-I dont want painpills I just want to go one day without hurting so dang bad, I hate them acting like I am lying-what the heck, wish they could be in my body for just one day and feel what it feels like to hurt so dang bad!