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Question for those of you with EDS

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Hi all,

I know Michelle shares similar issues to the ones I have with teeth (oy... :) ) probably due to EDS, but I have a question about your smaller joints--feet and hands.

I have been having a tough time with pain in the joints of my feet and hands. I went to my podiatrist, and she made orthotics to help stabilize my joints in my feet, but I can't wear them in sandals. So, the other day, and I don't know how, but I hurt one of the joints in my toes. Hurts like heck to walk on. I've done similar things to my hands trying to open a jar or other simple action. Does this sound familiar to anyone? I'm trying to decide whether or not I should go back to my orthopedist.

I'll be away for a few days, so don't panic if I don't reply right away. Nina

Edited by MightyMouse
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Nina -

i actually don't have EDS myself but have a friend who has it and she has all the issues you're describing. i don't know whether that does or doesn't merit a trip back to your doc, but just thought i'd let you know that all the additional "fun" can definitely be part of the EDS picture...she sees one of the top EDS docs as her primary care doc & is quite the expert herself, so despite the fact that it's third party, i think (and hope) i'm passing on pretty valid info...

i'm also curious what you're referring to in terms of teeth issues? i've been having some weirdness myself so you peaked my interest.

hope you have a good trip!


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Guest Julia59


EDS can cause pain all over, but I think you already know that.

Joint pain in my hands and feet are not severe, but I do have it. I can still open jars. It's a family trait(big hands/long fingers-(better grip) ---we all have vice grip hands----LOL. Arm weakness is the worst---pushing/pulling---lifting. My wrists hurt and pop out sometimes----usually while pressing down on something with my hand.

I was told once that I should wear inserts in my right shoe because my right leg was shorter then the left. Dr. Grubb told me this, and I never really took it very seriously. I should have taken his advice.

I just couldn't figure out how the subject ever came up, and I thought it was odd to be talking about this subject with and ANS specialist. Maybe I told him about my right hip pain. Dummy me---he was givng me added bonus advice. Now my hips bother me more then before----but this could also be the EDS.

I would go to the orthopedist Nina, because not taking care of your feet can affect other parts of your body---i.e.-------> hips. See if the orthopedist knows of any sandals you can wear that won't aggravate the unstable joints. I wear a lot of Clark Shoes and always soft soles. Hard soles aggravate my upper back issues---and kill my feet.

Clark has some really nice sandals, step ins.---shoes--ect.

I know the shoe inserts are important, but i'm thinking the right shoes help too.

I don't have any experience with an orthopedist. I should go see one---but I cringe at the thought of another doctor. I love my skechers. My joints in my feet aren't very unstable though, and I can wear step ins. For the most part my hands and feet are pretty good right now.

Julie :0)

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You peeked my interest in the teeth too because I thought it was more the Dysautonomia then EDS but there are times that either all my uppers or all my lowers just ache. Its the weirdest thing and extremely painful.

As far as the joints. I've been dealing with joint pain for a very long time and my ankles aren't too bad but my knees are horrible. I have more problems with my fingers than my wrists, although my doctor out here had me wearing a wrist brace for awhile for the pain when it was at it's worst. I can rarely peel potatoes or apples for pie anymore because it's too painful.


I've had severe hip pain in the past that was bursitis and they treated me with ultrasound, warm heat to the deep tissue.

I have certain extremities that get very cold and that is sometimes when they hurt the worst.

I haven't seen an orthopedist so I'm sorry no real good advice here just sympathizing with you, sorry.

I've found Neurontin to help with the joints the best. I wouldn't be able to function without it.

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Thanks for all your input. Makes me feel not quite so freakish. :blink:

Teeth...well, not quite sure what the connection is, but I've had all sorts of weird things happen to my teeth, inlcuding a resorbtion of one of my molars. Resorbtion is when the body just...well...takes it back. Kind of digests it. The bone that supported the tooth disappeared too.

I do have the orthotics--they were darned expensive!!! They do help, but they don't fit in many of my shoes. A few pairs for work, and a few pairs for home, but no casual, comfy ones. :(


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