Hypermobility Really Rocks My World!

My name is Susan and I would really like to meet someone with the problems I have to learn how they cope, what treatments work and if their Dr. really understands hypermobility.  I am 52 years old and diagnosed with Hypermobile Joint Syndrome, Fibromyalgia and Osteoarthritis in all my joints.  My Rheumy has not been willing to diagnose EDS because he said he would have to send me for genetic testing and may still not be conclusive.  I will find and visit a doctor familiar with EDS Type III so I can get a conclusive diagnosis.

I've had hypermobility from birth.  As a child, my family remembers I would always sit on the floor with my legs splayed out in "butterfly" style which was odd.  I suffered a fall when I was 30, and my knees have been painful ever since.  Over the past 5 years, my joint pain has increased in severity & to all my joints.  My osteoarthritis has been diagnosed by many doctors in all my joints.  I am to the point that when a doctor comes out from seeing a new xray, they approach me with great concern and say they are sorry to tell me I have significant arthritis in whatever joint they are looking at... and I just chuckle (not appropriate) and say "Thanks.  I know that.".  The severity of my arthritis is advanced far beyond what is expected at my age, which I believe is due to the hypermobility that has taken it's toll on my bones & joint tissues.

Today there are 2 areas of concern for me, my right knee & my back.  I am recovering from a driveway fall in Feb. 2009 when I badly sprained my left ankle disabling my left leg for that instant causing my fall on my right knee shattering my right kneecap.  I know if I was not hypermobile, that whole accident would have been prevented.  I have improved to the point I can walk with a cane & take stairs using both feet on each step.  Physical Therapy to improve my knee functionality had to be stopped last month because of the bad pain throughout my back.  Many of the vertebrae joints of my spine are chronically subluxed (partially dislocated).  Therapy & chiropractic treatments provide only limited relief. 

Fibromyalgia is also misunderstood.  I describe Fibro as a magnifying glass.  Small annoyances for most people are intense & disabling for Fibro patients.  The joint problems I described above, plus tendinits and bursitis problems all cause pain intensified by my Fibromyalgia.

I am a wife, mom, daughter, sister and professional career woman.  Unfortunately, all of these roles are affected by my chronic pain and I've got to get a handle on this to regain an acceptable quality of life.  Thanks for sticking with me until the end of this story.  Have a good day!




SusanRae SusanRae
51-55, F
1 Response Mar 2, 2010

hi, im megan and im 17. i have hypermobility. i have only been diagnosed in the last year, but i have had it from birth. i am also at the minute, trying to find a doctor who knows about EDS because i am showing 80% of the symptoms. basically, i have had problems with my knees since i was 10. it has been misdiagnosed time after time. i am now perminatly in a wheelchair because of it. it has taken me travelling to a hospital in a different part of the uk every week for someone to find this out. it turns out that i have very severe hypermobility in the majority of my joints. i have broken/dislocated 14 bones/joints in 13 occasions in the last 9 months. mainly fingers and toes. my feet are also extreamly flat which means that my legs have been pulled out of place over time. so now my hips are too mobile, my muscles are wasting, knees painful, shin bones are twisted and feet are flat!<br />
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i can barely walk 20m and yet it has taken 7 years for someone to take me serioulsy. because my tests and scans kept on coming back clear, the doctors could tell me what i didnt have but not what i deffinatly had.<br />
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sorry this has been so long. at the minute i am having physio. it hasnt started to work yet though! i enjoy swimming. it also doesnt help with the pain ut it does helpp to build muscle tone and i feel free when in the water. i find that alternating between heat and cold on my joins also helps, as does massage. but i dont know if this will be any good to you as you also have arthritus. im sorry that i cant be more help.<br />
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i hope that you start to feel better soon xxx