Lymphedema Support Group

Lymphedema is a condition of localized fluid retention caused by a compromised lymphatic system. The lymphatic system (often referred to as the body's "second" circulatory system) collects and filters the interstitial fluid of the body. Lymphedema has been barely recognized as being a serious health problem; however, this is slowly changing due to education and awareness.

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eml16 09/11/2011

Hi, I seem to have primary lymphedema -- no surgery, no nothing. Had an episode four years ago that I left for a year and was then diagnosed as varicose veins, wearing a pressure stocking helped and then I stopped wearing the stocking, things were fine for two years. Last November it came back and hasn't gone away. Have been tested for DVT, had abdominal CT, everything negative. Have been going for once monthly massage, doing it at home and wearing compression stocking. It's only on one leg.

Now I've just had cellulitis, which landed me in the hospital (I live in Japan). Am trying to figure out what to do next -- bandaging? stockings again? Things weren't bad enough for bandaging before but now there's extra swelling at the top of my leg so I'm not sure. What do people recommend, bandaging or stockings? Also, how do you keep from getting cellulitis again if you can get it without even seeing a wound? I like to travel in Southeast Asia a lot, but does this mean I can't do it anymore? It's all confusing and kind of scary.

lerog83 10/04/2011

I have secondary lymphedema as a result of cancer (had surgery and radiation). At first, it was only my right leg. But, since the last bought of cellulitis a couple of years ago, I've developed lymphedema in my left leg. I bandage at night, if I've been on my feet all day working. Or, if i notice an increase in swelling. I wear prescription stockings during the day. Although my legs are not like they used to be, this seems to control the swelling pretty well.

deleted_user 12/02/2011

I have stage 3 Lyymphademia and cellulitis.I have gone to the hospital to get my legs shrunk but went back this time and the Lymphademia is really not going away.I have 2 big sores on the outside of my legs and they seep and seep and I change the bandage about 3 or 4 times a day. The sores stay wet and now a new development where I have a blister on each heal and has burst and that is 2 more sores to deal with.She is running out of ideas. I'm getting depressed cause I think I'm going to die from this. I know I won't but when you can't do what you want you feel like that.There is 1 more idea and that is go into the hospital as an impatient and see if they can dry everything. In the mean time I pray a lot.

Kimberly

deleted_user 12/11/2011

Hi there, I would say to wear a compression stocking during the day and if you need to you can wrap your leg for the night. Do not sleep with the stocking on, it is designed for movement.
Don't give up travelling! I too love Asia and this time last year I went backpacking in Thailand and Laos for a month. It went allright with the leg although the swelling did go up a bit due to the hot climate. That's what I think caused it. Earlier this year I travelled in Korea which was fine, no extra swelling. The climate there was sort of cool at the time. Don't give up travelling but try to find out how you can do it and still look after your condition. We must not let this akward condition rob us the things we love. I hope this was helpful.

deleted_user 12/19/2011

You should use your lymphedema compression hose during the day (never at night!) and wear your bandages at night. Even if your lymphedema is not severe, you are better off wearing the hose and the bandages to prevent it from getting worse, and possibly damaging the skin. You can also do lymph message yourself, BUT you must be trained and do it correctly. Hope that helps. Michele

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