Hey dana.i also have a constant pain in my left knee exactly the way you describe it.mine occured after surgery.and i dont find any explanation for that.it got better now from acupuncture of my neck which is really weired.
I get this in the knees alot and sometimes the elbows and finers. It like they just hurt from the inside out. I describe it like a bad rubberband stretching, or sometimes it huts like a toothache...as you describe. To my knowledge I do not have EDS or Sticklers, I am however still awaiting some testing. I like you have a compounded cream. Did you have to get it from Proffesional Arts Pharmacy ???? That stuff is AMAZING !!! I also find that ice makes it worse for me. But sometimes I use those heat patches and they do tend to sort of help. My hands and fingers shake 24/7. Makes my bow making and sewing a total nightmare. Hope that you start to feel better soon :)-
I have to agree with Mel...EDS is something that can really affect us and I was told u can have a low # and still have EDS as EDS is not all hypermobile joints and that Beighton test is just looking at joints....Do keep pushing this issue as it can affect u more then u know.
I think it is harder to find qualified EDS doctor than it was to find chiari Dr. Dr Oro diagnosed me with EDS but I have been told by my rheum there was no reason to do genetic testing as I do not have vascular type and so we would only treat symptoms. I still feel EDS is a huge issue. I know it causes pain and for 1 example I have severe bilateral paraseptic (sp?) emphysema caused from EDS I don't smoke. If it is affecting my lungs that bad (connective tissue) what else is it doing to my body.
Use biofreeze alot lol.
As for eds and other related conditions, drs keep telling me i score a 2 out of 10 andd never do further testing. I believe its a possibilty but no one listens. I bruise easily and also dont heal fast. My nl says i am very flexible on whole left side. Hmmmmm
I too get the joint pain biofreeze does not work for me but I also have EDS. I had tried physical therapy before they discovered what was wrong. Hang in there.... For me it is different things at different times hips do it and sometimes fingers kill me.
I have elbow pain all the time...but I also have Stickler's syndrome (like EDS, it's a connective tissue disorder). It's the inside of the elbow that hurts like a toothache!! I have a special compounded pain cream from the amazing Dr. Francomano that works (thank goodness!!).
I've also heard that an over-the-counter pain remedy called "Biofreeze" works for some people...have you tried anything like that?
Yes, I had this in my elbow and had xrays to make sure I did not have a hairline fracture from a drop attack....I didn't....later, I was dx'd with EDS and was told that was the cause of my joint pain....not sure that is urs, but it is something to check out.