Lymphedema?

ptsmiles
ptsmiles Posts: 511 Member
in Motivation and Support
Hi everyone! I have been having some minor swelling in mainly my right lower leg and ankle, sometimes in my left, for a few years now. One doctor wanted to put me on a water pill, and one ran blood test to check my liver and kidney enzymes. The blood work came back fine, but they said I may always have swelling. This past weekend I noticed the swelling pitting and got nervous. Yesterday, I went back to the Dr. and she kept throwing around the word Lymphedema. I am so scared. They told me to watch my salt, which is fine with me and they also told me to get compression socks that are knee high. It is warmer weather and I am very self conscious to start with and to throw some knee highs in the mix isn't going to help. I don't want to leave the house with shorts and knee highs, I'll look ridiculous. I know it sounds shallow, but I'm always worried about people looking at me. Now that I have lost some weight, I was finally starting to feel a little better about myself and now this. I told my husband, but he doesn't seem to understand how scared it makes me. She said if it gets worse she will refer me to a vascular specialist. She never came out and said you have lymphedema, but she kept using the word, so I got the feeling that this is what it is. She said it will probably get worse and not to worry. How am I not supposed to worry? I'm trying to get healthy and am healthier now than I was a couple of years ago, so why this? Sorry for babbling, but not really sure who else to talk to. Anyone else going through this? Everything I read online scares me even more. I just want a normal life with my kids and husband. I don't think that is a lot to ask.

Replies

  • Shirley61
    Shirley61 Posts: 7,758 Member
    So sorry you are going through this. I know some people who have it and it seems to be
    something that stays with you. A water pill might help to keep the fluid down and drink lots of
    water to flush anything out of your system daily. Knee highs are not good because they constrict
    the legs unless they are diabetic knee highs because its the band that constricts. Listen to your
    doctor and if you need to go to a vascular clinic, go. I have been to one for another reason and the
    testing is okay. This is the only advice I can give, I am not doctor but I hope it helps.

    Good luck !
  • ptsmiles
    ptsmiles Posts: 511 Member
    So sorry you are going through this. I know some people who have it and it seems to be
    something that stays with you. A water pill might help to keep the fluid down and drink lots of
    water to flush anything out of your system daily. Knee highs are not good because they constrict
    the legs unless they are diabetic knee highs because its the band that constricts. Listen to your
    doctor and if you need to go to a vascular clinic, go. I have been to one for another reason and the
    testing is okay. This is the only advice I can give, I am not doctor but I hope it helps.

    Good luck !

    Thanks Shirley! I guess I should have been clearer and said that they were knee high compression socks.
  • Shutter_bug03
    Shutter_bug03 Posts: 35 Member
    Hi, I'm new here and I also have Lymphedema. Water pills are highly discouraged for LE patients. You definitely need compression garments and usually those are knee high IF your swelling is in your lower leg (mine is my lower left foot, and starting in my right, ive had it since 2010 that i know of). Diabetic knee highs will probably not work for the type of compression that you need. They need to be very tight to move that fluid. For me, the knee highs just push the fluid to my knee/thigh then when I take them off, it goes back to my foot. So, i am planning on getting some that go up higher. I know a lot about LE, but not everything, because I live with it every day. Feel free to ask questions.

    OH and another thing, do not gain weight. It will exasperate the problem. And find you a good LE therapist to teach manual lymph drainage. It's something to not FEAR, but learn to manage so that you can keep the fluid moving and stay healthy.
  • ptsmiles
    ptsmiles Posts: 511 Member
    Hi, I'm new here and I also have Lymphedema. Water pills are highly discouraged for LE patients. You definitely need compression garments and usually those are knee high IF your swelling is in your lower leg (mine is my lower left foot, and starting in my right, ive had it since 2010 that i know of). Diabetic knee highs will probably not work for the type of compression that you need. They need to be very tight to move that fluid. For me, the knee highs just push the fluid to my knee/thigh then when I take them off, it goes back to my foot. So, i am planning on getting some that go up higher. I know a lot about LE, but not everything, because I live with it every day. Feel free to ask questions.

    OH and another thing, do not gain weight. It will exasperate the problem. And find you a good LE therapist to teach manual lymph drainage. It's something to not FEAR, but learn to manage so that you can keep the fluid moving and stay healthy.

    Do you have to wear them everyday? How do you manage wearing summer clothes with those on? I feel like I'll look like an old person with them on. What was your prognosis? How do you manage without getting depressed? I see pictures of people with horribly disfigured limbs. The doctor said don't get scared if it gets worse. How can I not? I feel like I've lost weight and I want to be able to show it off, but if it is covered with those stockings, I can't wear shorts, dresses or bathing suits without looking ridiculous.
  • Shutter_bug03
    Shutter_bug03 Posts: 35 Member
    Well yes you are suppose to wear them every day, put them on before you get out of bed and if you take them off at any point during the day, don't put them back on --not sure why? but my doc specifically told me that. I just go ahead and wear shorts and whatever i want with them, but i often wear maxi skirts a LOT. It bothers me a little bit but i figure people know something is wrong. Some people have asked me if i'm hurt, but no one has ever been rude to me or tried to humiliate me. You just have to get to the point of caring more about your health than what others think! Even though that's hard. And during the summer is when you need wear them more than any other time bc the heat causes the swelling to be much worse.

    Yes, it is scary, but I try not to think about it. I know what COULD happen, but as long as I take care of myself and manage my weight and don't become morbidly obese, then I really dont worry about it getting bad. My doctor told me that my case isnt very bad. I feel like it is bc i can barely get a shoe on at a times, but I know if i control my weight, i wont get disfigured.

    Do you have a therapist yet? What state are you in? I'm in Oklahoma.
  • ptsmiles
    ptsmiles Posts: 511 Member
    Well yes you are suppose to wear them every day, put them on before you get out of bed and if you take them off at any point during the day, don't put them back on --not sure why? but my doc specifically told me that. I just go ahead and wear shorts and whatever i want with them, but i often wear maxi skirts a LOT. It bothers me a little bit but i figure people know something is wrong. Some people have asked me if i'm hurt, but no one has ever been rude to me or tried to humiliate me. You just have to get to the point of caring more about your health than what others think! Even though that's hard. And during the summer is when you need wear them more than any other time bc the heat causes the swelling to be much worse.

    Yes, it is scary, but I try not to think about it. I know what COULD happen, but as long as I take care of myself and manage my weight and don't become morbidly obese, then I really dont worry about it getting bad. My doctor told me that my case isnt very bad. I feel like it is bc i can barely get a shoe on at a times, but I know if i control my weight, i wont get disfigured.

    Do you have a therapist yet? What state are you in? I'm in Oklahoma.

    I'm in Vermont. I don't have a therapist yet. My mom really wants me to seek a second opinion at another nearby hospital where they have vascular specialists. She does medical coding and reminded me that sometimes doctors forget that not everyone went to medical school and sometimes they throw terms out there without realizing it. She has swelling as well and she said that mine doesn't look any worse than hers. She has never been told that she has lymphedema. She said that she has heard it used as a blanket term for swelling. Tomorrow, I'm going to call and talk to one of the nurses and see if she can check and verify that this is the diagnosis and set me up with a referral as soon as possible. Do you shower with them on or do you put them on after you shower? I'm sorry for all the questions, but I'm curious. Do you ever go without them? What do you do when you go swimming or to the beach?

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