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Having trouble finding good treatment for lymphedema

Lymphedema | Last Active: Jan 9 8:47am | Replies (3)

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@johnbishop
Thank you for the good information, John. I've been wearing compression socks since 2019 when I had endocarditis that affected my heart, so I'm very familiar with using them. My biggest concern is that I'm getting conflicting information and direction from my doctors and PTs. Like you, one of my legs swells more than the other. For years, I'd been told that was because a vein had been harvested from that leg to do a bypass when I had endocarditis. Wearing compression socks helped, but didn't always reduce the swelling as much as doctors wanted. They would accuse me of not taking my lasix medication, and when I assured them I was, some even went so far as to tell me I was lying. Thank goodness, I now have a cardiologist who listens and connects dots I never knew existed. When I told him about my frustration with taking lasix and wearing compression hose, then being accused of not doing that because the swelling didn't go down that much, he ordered a vein mapping when it was discovered that any venous insufficiency I had was minor and in a different location that the swelling in my leg. That was when my lymphedema was revealed. The NP who read my vein mapping said the lymphedema ranged from mild (on the less affected leg) to moderate (on the most affected one). She said that most likely, my lymphedema was caused by the overload of toxins in my body when I had endocarditis (it was a severe case), and told me that lymphedema doesn't respond to lasix well, so the mystery was solved--yes, I was taking my lasix, but it was the wrong treatment for the cause of my swelling. To your question about swelling while I'm sleeping or if elevating my leg helps, I sometimes (rarely) wake up with swollen legs. And yes, elevation helps and I do that as much as possible. Now, here's a point of contention. I've been told not to wear compression socks because they are acting like a tourniquet and making my swelling worse not better, but no one is telling me the solution to that, so I'm assuming that there is none. I also research this a lot on the internet. I'm just frustrated and wish I could find a doctor who can provide me with clear guidance and who seems to take this as seriously as he would expect me to take it. Thank your kind response and helpful suggestions. I hope you are feeling well!

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Replies to "@johnbishop Thank you for the good information, John. I've been wearing compression socks since 2019 when..."

@janchan, I don't really like wearing the compression socks but I know they help with the swelling and I just have to ignore and put up with that "tourniquet" feeling of my legs being squeezed all day 🙃. The other thing I do when I take off the compression socks at night is to rub a moisturizing cream/lotion on my legs to help with the skin/nerves. I've been using regular moisturizers but I think I'm going to switch back to LifeFlo Magesium Lotion because it always made my legs feel a little bit better.