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bones popping


Guest veryblue

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Guest veryblue

Does anyone else have bones that pop on here. I have lost a lot of bone mass when I was aneroxic but that was years ago. Now after I develpoed POTS symptoms my bones pop all the time...why would this be? At first I thought it might be EDS but I know that 90% of those patients are blonde hair blue eyes and fair skin...I have tan skin, dark brown eyes and dark brown hair...the complete opposite. Plus nobody in my family has it on either side, nobody has ever had any POTS symptoms what-so-ever to be exact. Maybe this isnt POTS realated but it might prove something else to be wrong with me which might be causing my POTS symptoms...any ideas????

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If you have concerns that you might have EDS, you should see a rheumetologist. The diagnosis is made using the Beighton scale, which you may read about here:

http://ednf.org/nosology.html

For most people, joints will make noises as they age. People who've had previous injuries to joints may also have noises as the cartilage may no longer be smooth. This isn't necessarily problematic. However, for people with EDS (like myself and Michelle), joint instability is an issue--inlcuding dislocations. Mine make almost no noise when they dislocate--although when a I've dislocated my jaw I could hear the joint snap out of place, probably because it's just below my ear. I've partially dislocated knees and hips--no sound other than maybe a muffled click of the bone moving out of the groove.

Nina

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My joints have always popped really loudly ever since I was a kid. I don't know if it has any relation to all the asthma meds and prednisone I was on or some genetic thing that is also some how related to the POTS. The joints that pop the loudest are my knees hips and elbows.

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I've never read a statistic that said "90%" of EDS patients have light hair/skin/eyes. I have heard Dr. Grubb say EDS/POTS patients tend to have light hair, eyes and skin, but that doesn't exclude people who have darker skin/hair/eyes. I, personally, have light skin, but light brown hair and brown eyes. My joints do sometimes pop. As Nina said, if you think you do have EDS you should see a doctor that treats this type of disorder.

Michelle

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My bones pop big time! I can pop my ankles, toes, fingers, neck, elbows, you name it lol :D

More and more I am learning that I have classic signs of EDS and yet my doctor told me I am "borderline". What does this mean? I am in between doctors right now, seeing a new physician on August 3rd and hoping that I can get some new insight on this. I am tall and thin, definite hypermobility that I just found was noted at Mayo Clinic in my medical records, light skin and light hair/eyes, long fingers & toes, bones pop, stretchy skin, easy bruising, joint pain that recurs in the same places frequently, and of course POTS...maybe I am just looking into it too much though...

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Guest Julia59

I have noticed that all my joints are loose---and when I get up from a lying down position my shoulders, neck, base of my skull makes noises. I don't know how to explain it---I can hear it, but it's not like a typical joint popping that most people get. My jaw bones are unstable---I can't remember wht they call that when they shift around like that. However, I have never dislocated my jaw-----------THAT would really be nasty---OUCH. I know you've been there Nina.

My whole upper body is unstable, and my hips, knees, ankles all slip---but i have never dislocated. I have almost dislocated shoulders, just from bracing myself to get up from a chair. My neck is so unstable---i'm afraid that if I ever get into a fender bender...........well I just don't want to go there...........

I have brought up EDS----but apparently I don't fit the blond hair, blue eyed profile. And i'm not real thin----not heavy---but not thin. I was thin most of my life until the POTS meds. Anyway, I truly believe they need to look beyond this profile used for EDS. I believe too many people will go undiagnosed with this profile.

I'm just not a person that is taken seriously-----for what ever reason---i'll never know. Docs don't take me seriously, my family, and most of my so called friends. Dr. Grubb, Dr. Heffez, and hopefully Dr. Milhorat and Bolognese have been the only Docs to help me put things together.

Keep trying to get answers---don't give up.

Julie :0)

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Hi All!

For what it is worth...here's my 2 cents.... When I was diagnosed by Dr. Grubb with POTS and EDS (hyperjoint mobility), he said that those with EDS are 'often' fair, blue eyed, and light skin....he also said, 'you look like you all could be cousins.' I have also read this in some research articles too.

FYI...at times I will hear my joints pop out of place and sometimes I am not aware they are out of joint.

The biggest problem I have is the collagen holding my veins, so they can help constrict the veins, is the 'wrong' type which is a part of the Hyperjoint mobility (EDS III) problem.

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