Discussions By Condition: I cannot get a diagnosis.

bipedal edema etiology unknown

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: cherylmcknight
  • January 24, 2009
  • 08:54 PM

When I was sixteen I started having bipedal edema with no known etiology. Also, at that time I was in a phys ed class, practing a gymnastic form which included my body being supported horizontally at lower back by laying on base person's feet which are at 90 degree angle straight up. Once I was balanced I arched my back down and had to hold my legs parallel to the floor. It was a very demanding demonstration and when I was lowered to the floor I almost passed out.
I was seen by various physicians who did various tests including a high aspirin regimen which made me sick so had to discontinue, an IVP which showed negative, and most recently in the last few years was referred to a physical therapy office for "wrapping" which I did for about 6-8 weeks which did finally reduce my edema (but not totally) but after that started having plantar fasciitis pretty bad, so eventually had to abandon the wrapping (which I doubt I would have continued for long because of the heavy support "pantyhose" I would have had to wear year round in addition to wrapping every night for the rest of my life). With the really painful fasciitis, that wasn't possible.
Nobody has been able to diagnose a cause for the appearance of the edema. My father's side of the family does have feet problems - my paternal great-grandmother had edema and I have pictures of her legs in pictures that look like treestumps in ankle-high lace-up shoes. My nephew had to have an operation on both his feet to reposition a pronation problem. And here I am in my generation of the family with edema in both legs to the point that I cannot wear knee-high boots (my feet will swell so much that my ankles become taut in the boots and I can't even bend my ankle to go down stairs).
Even is this is a genetic problem is there anything that I can do? I don't drink a lot of water but I'm trying to force myself to greatly increase my water intake. The edema is normally worse in the summer and gets quite bad, and swells up clear to my knees which it doesn't do in the winter. Oh, I've tried diuretics as well and they didn't help. Is there any information around on possible treatments for this? I think it's an issue with either nerves in my lower back or my lymph system in my lower back got damaged from the PE gymnastic demonstration but I don't know if there are any studies that can determine that and even if they did find something, what could be done? It really has taken a toll on my self-esteem and self-image. I hardly wear dresses any more because of it.
Is there anyone who can help me?
thanks!!!

Reply Flag this Discussion

3 Replies:

  • Edema is almost always due to a problem with the heart,liver,or kidneys.I assume all three have been ruled out in you.In that case you might have idiopathic cyclic edema,meaning that no cause can be found.
    richard wayne2b 1232 Replies
    • January 25, 2009
    • 00:12 AM
    • 0
    Flag this Response
  • If that is what you have,captopril,a blood pressure medication,plus gingko biloba have had some success in treating it.
    richard wayne2b 1232 Replies
    • January 25, 2009
    • 00:19 AM
    • 0
    Flag this Response
  • Have you been evaluated by a cardiologist? How old are you? Are you a female? Are your legs better in the morning? When it all started, were both legs eqally bad?
    Felsen 510 Replies
    • January 25, 2009
    • 08:15 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.