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Having trouble finding good treatment for lymphedema
Lymphedema | Last Active: Jan 9 8:47am | Replies (3)Comment receiving replies
Hello @janchan, I was diagnosed with lymphedema in my legs 5 or so years ago at Mayo Clinic Rochester and was suggested wearing 20 to 30 mmhg knee high compression socks. They did send me down to their medical store to get my first pair of compression socks and teach me the basics of how to put them on and take them off which was a struggle for me. They didn't recommend any PT for me other than exercising and walking more along with elevating my legs more when I'm at home not doing anything. Another thing that I have found helpful for reducing the swelling overnight is to elevate my legs in bed. It doesn't have to be high but just a little higher than your heart according to the doctor that diagnosed me. If you haven't done any research or reading on the lymphedema condition and suggestions for treatment and management, you might find the following sites helpful:
-- CityofHope.org: https://www.cityofhope.org/patients/life-during-treatment/dealing-with-cancer-side-effects/experiencing-lymphedema
-- National Lymphedema Network: https://lymphnet.org/page/patient-resources
You can buy zippered compression socks online and I've found them much easier to use that the regular ones. My PT did show me how to use legs wraps if I decided I didn't want to use the compression socks but I found the wrapping even more of a pain that putting on the socks. I did get a right knee replacement a couple of years after I was diagnosed and wasn't able to wear my compression socks for a short period of time. During that time I had to do a lot of pre and post surgery leg exercises to help build the leg strength which I think really helped with a faster recovery and more leg strength.
My right leg swelling was a little more than my left leg but both would swell up during the day but not always return to normal the next day. Elevating the legs at night really helped for me. Does the swelling get worse for you during the day?
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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!