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Do we have EDS?
Posted: 07 March 2012 10:15 PM   [ Ignore ]  
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My 6 year old daughter has been complaining of back pain/discomfort for 8 wks.  MRI & X-Ray were all fine, no scoliosis, but blood work came back with elevated ANA levels….  Dr. refers us to a rheumatologist to explore arthritis & Lupus.  Scared breathless, I started educating myself and stumbled across EDS.  Strangely, that shoe may fit our family and as a newbie, my goal is to figure out what’s next for she and I?  So many of the things associated with EDS seem to connect the dots of some personal health things that I just assumed were not connected.

If you need to be super-sick to have EDS, that ain’t us.  My sympathies are with all that are.
1) Beighton Scale.  I think I am a 4 to 5.  She is easily a 7.  I’ve always been Mr. Flexible, hypermobile in most major joints (wrists, elbows, knees, shoulders).  Aside from being a 7, for pain relief she arches her back against the grain at the l3/l4 40 degrees.
2) I’ve always bragged “my skin is like a babies butt,” and it is elastic.
3) While I don’t pass all the stretch tests, my shoulders and knees constantly sublux on their own and I have TMJ.  Gave up all impact and repetitive motion activities 20 years ago because of joint instability (e.g.  knees blow up after running 1 mile).  Every joint cracks and pops (fingers, neck).  Luckily, I am generally pain free.
4) My vision has always been bad and I am getting more and more nearsighted over the years.  Think Mr. Magoo.
5) IBS for years.  Bloating occasionally.  Formed stools are a rarity for me.
6) Last winter I got my first prolonged sickness ever (3 months) and have had the same unshakable symptoms for the last 10 weeks this year.  They include.  Lightheadedness, periodic headaches, constantly clogged ears, post nasal drip that never stops, bad breadth, and I generally feel somewhere between 60%-90%, but never 100%.  Allergies and Sinusitis have been ruled out and the Dr. is now suggesting GERD?
7) I have self-described for years as a “salty snack guy.” 
8) Never have been able to put on real muscle mass or tone despite lifting weights for 20 years.  My muscles can lift far more than my joints will allow (e.g. shoulder blowouts).
9) Salty snacks aside, I drink absurd amounts of water (e.g. at dinner, waiters may refill my glass 6 times).
10) High anxiety type.  Massive stress case.  Irritable/moody. 
11) I can focus for abnormally long periods compared to most people, however, at times, i cannot absorb anything at all.  I might as well be deaf because it is like I couldn’t hear what was said.
12) Degenerative disk at L3/L4.

Do we sound like EDS candidates or something else?  Please help.

 

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Posted: 08 March 2012 11:49 AM   [ Ignore ]   [ # 1 ]  
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A rheumatologist or geneticist would be able to diagnose you. I just found out that I have a type of joint hypermobility between EDS type 3 and Benign Joint Hypermobilty Syndrome. My other family members should more like you. I ended up getting POTS and then cascade of other medical conditions. I am really sick, but not from the joint hypermobility. The joint hypermobility issues just causes joint pain and it can he harder some days to weight lift. My joints give out before my muscles.

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I have POTS, NCS/NMH, IBS, GERD, GP, erosion of esophagus, hiatal hernia, cholecystitis (will have gallbladder removed on the 27th), microulcers, degenerative change of spine, levoscoliosis, anemia, recurrent bladder infections, polyuria, atypical complex migraines, osteoarthritis in lower back/hips region, hypermetropia, restless leg syndrome, alternating insomnia and hypersomnia, and I will be tested for EDS on the 21st, which I am sure I have.

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Posted: 08 March 2012 11:51 AM   [ Ignore ]   [ # 2 ]  
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I’m on my phone typing and I make a lot of mistakes. I meant to say that my family members sound like you in the list you provided.

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I have POTS, NCS/NMH, IBS, GERD, GP, erosion of esophagus, hiatal hernia, cholecystitis (will have gallbladder removed on the 27th), microulcers, degenerative change of spine, levoscoliosis, anemia, recurrent bladder infections, polyuria, atypical complex migraines, osteoarthritis in lower back/hips region, hypermetropia, restless leg syndrome, alternating insomnia and hypersomnia, and I will be tested for EDS on the 21st, which I am sure I have.

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