Edema Anyone???

[mooeeann]

Hi all,

I was just curious if anyone gets very bad edema. One of my main IC symptoms is edema, all throughout my body, mainly my legs though. It gets to be so difficult for me to walk. My legs feel so heavy, pitted and itch. At times it feels also like my feet are burning. Of course, when I was first diagnosed they called it "idiopathic edema", basically saying I don't know why the hell this is happenning, thanks Doc. Anyway, I know this is from my IC since when I first got UTIs I had edema as well. I mean to the point where I have no ankles. Then when I took antibiotics for my UTIs and it went away so did the edema. I am just wondering why is it all throughout my body and in my legs. I have read of the IC belly where there is swelling, but I do not have that. I have tried everything w/o success. It does get worse right after my periods but I basically have this edema all the time. It really is very difficult to deal with. Doctors only want to give you water pills which do nothing for me but make me retain more water and bother my bladder. I have tried every herbal thing out there but nothing. I can't sit for a long time or stand. When I was working it was hell since I was sitting all day long and my legs just pooled w/ water. I know I have low circulation, my hands & feet always cold. I did check for thyroid, but showed normal. I did try taking thyroid pills but it didn't do much of anything and I don't like to mess w/ hormones when there isn't a definite answer. The low circulation thing and feeling cold runs in the family. So, does anyone else get this edema and if so what have you taken that helps?

[ChrissySunshine]

Hello! Gosh, I KNOW your post is old, but I'm experiencing the exact same thing as you (it's not quite as severe as pitting...just real swollen and TIGHT feeling)....have a low grade temp too. Just returned from ER, all labs are normal. Just wondering how you made out with your leg swelling...?

[Silverfox]

I had severe edema throughout my body. This edema actually caused pressure on the peripheral nerves throughout my body and damaged my nerves. All the peripheral nerves are fragile and easily damaged when they are blocked from getting oxygen and nutrients to them. Some examples are the motor nerves, sensory nerves and autonomic nerves, and so you can imagine I had all sorts of problems and many symptoms and some organs began to malfunction. Like my autonomic nerves to my lungs caused me breathing problems, and then there was lack of co-ordination in my hands and feet that led to lack of feeling with arthritic like pains. Motor nerve damage cause me to have ataxia and sometimes fall when I lacked feeling or sensation in my leg or foot. Autonomic nerve damage caused bowel problems with IBS and severe constipation. My sensory nerve damage affected my bladder causing me burning pains. Sciatica nerve pain in the hip and going down the leg to the foot is another type of nerve damage. I could go on with more but I think you have a good picture of life with undiagnosed edema. My Drs tell me that I had this for so long and that the damage is so severe that my nerves will never recover. They have recovered some, and I am very thankful for every day that I see improvement. It may take years for the nerves to heal. I don't have that much time left. So, I am warning anyone who has not had there edema identified they need to get it diagnosed because with early treatment the results are very good for recovery. Don't let anyone cheat you out help for your peripheral nerves.
You say you have cold hands and feet and that is a warning sign to you that you are not getting good circulation to the nerves because of the edema and so while you wait for help slowly the nerves are getting worse.

There are many things that can cause edema, but one of the most common is metabolic disease that goes undiagnosed and undertreated. In my case I turned out to have undiagnosed and untreated hypothyroidism. At first my Dr. told me my tests were normal, but then he did a special Free T 3 test and that came back vey low. T 3 was very critical for me to have and it turn out that I did have the T 4 hormone but it did not convert to T3. My Dr. discovered that I did not do well with T4 alone, so he put me on Armour thyroid that has both hormones and I bagan to feel better. If you have not tried the Armour thyroid brand, you might want to give it a try to see if you feel better. Results are not quick but can take months to years for good results. Some say they tried it for 1 week and did not get well. But you must remember that this might have taken years to get this bad.

Okay, hope this helps. You might wish to try this website www.stopthethyroidmadness.com
or www.thyroid.about.com

Please don't let them put you off, while they allow this untreated and undiagnosed edema to continue. Sometimes you have to fight for good health care. Sad but true.

Good luck old Silverfox

[emilyrose197377]

yep I just got dxed with edema it caused me to have weight gain my ankles are swollen and so is my stomach.

[Judith56]

I have edema from another problem that I have. I do take water pills/diuretics, but that makes the swelling go away, not retain more water like the first poster said. I have mainly upper body swelling in my face and hands. Somtimes the swelling is so bad in my hands that it wakes me up because it is painful. All I can say is thank goodness for Lasix! Judith