Lymphedema Support Group

Hi everyone my name is Laura. I have had lymphedema in my right leg for about 20 years. I wear jobb stocking on my leg. It helps a little bit but not much. I was just wondering if I can get any suggestions on anything I can do to make it easier. I can't find a Lymphedema doctor where I live. If any of you have any suggestions please let me know. Thank You and I look forward to chatting with you all.

HI , I too have lymphendema in both legs and now up into my groin and lower stomach also . I was diagnosed in 2003 . I use ferrow wraps everyday to keep the swelling down as much as possible. I was told by my therapist that elevation and swimming helps alot . I try and elevate whenever I sit . And I just recently got a swimming pass and Ive been going everyday for an hour . I am in the process of getting the flexitouch pump. Which they say is right now the best treatment for lymphendema .This group is small But i hear more and more about lymphendema all the time .So hopfully it will grow . NIce meeting you . Have a good day

hi,thanks for replying,all i have is a jobb stocking for my right leg,it helps some though not much especially when i am at work on my feet for 8 hours.how much are them flexitouch pumps,i know i need to do something to help because my leg is so swollen all the time.does the ferrow wraps help exactly what are they.well thanks for writing me and hope to hear back from ya

HI , I have an estimated 150 lbs of water weight which includes my legs ,groin , and stomach area . The ferrow wraps are velcro wraps that i wear 24/7 . Unless in the pool or on the pump. I have a foot peice to wrap my feet and ferrow wraps for both legs. YOu can look them up on line at i think i went to ask.com and put in ferrow wraps . AS for the flexi touch pump . It is very expensive .However the other pumps they have tried for me has made my condition worse . I used to only have it in my lower legs. My insurence wont cover this until july 2010 ...BUT DVR (dept of voc rehabilitation ) is helping me with these . The flexi touch system is aroound $7,300 ....you can check into it online also at flexitouch.com.I dont have this yet but i have heard wounderful things . So I am hoping for the best . good luck talk to you soon .

Hi Laura! I have mild case of lymphedema of both legs and up to my stomach as well. I very much agree with sherbyrd's post about swimming. I have found that swimming for about an hour, 2-3 times a week (or even once a week), mostly in the deep end of the pool, does wonders. I plan to write alot about it in my diary or blog to tell others how I found out about swim therapy and how it is going for me so please look for that soon. I can tell you so far so good! Please check with your doctor and see if you are able to start a swim excercise and he/she can monitor your progress first before doing it. It really is working for me! I hated the bandages and felt they were not the right therapy for me. In my desperation to find other therapies, I found out that swim therapy is best for my case of lymphedema. Bandages may work for some, but for me it did not. Everyone's case is unique I am sure. I do recommend to try swimming if your doctor gives the okay to do it and monitors you and your progress! Hope this helps! ((HUGS))

Post edited by: summergirl, at: 12/30/2009 08:48 AM

Hi Summergirl,

I read your post about swimming, and you said it has done wonders for you, in what respect? what has it actually done, I am very interested and may even start swimming, the only thing that concerns me is the chlorine in the pool.. please drop a note and let us know what improvements you notice... You have given us a new hope

Thanks Sandy

I am a two year breast cancer survivor and did everything that I was told to not have a shot in my right arm or have bp taken because of lymphedema.

My mastectomy site has been swollen almost from the day of the surgery. I had additional surgery to remove whatever was causing the swelling. I have consulted with my surgeon (who aspirated the swelling twice), my plastic surgeon (who did the second surgery) and my oncologist. This has been over a two year period. Finally, my oncologist sent me to a physical therapist who is a Board Certified Lymphedema Therapist.

I have lymphedema in my right arm, mastectomy site, midriff and belly. She removed two pounds of water from my arm in three days.

Doctors do not know anything about lymphedema and that is such a shame. I'm not really sure that they want to know anything other than the basic stuff.

Yes, I'm angry about not knowing how bad lymphedema is and can get. There is not medication or cure for it. Wearing this bandage on my arm is driving me crazy but I know I will have to adjust my thinking on that.

I'm new to the forum and somehow my above post jumped from one topic to another. Sorry for the different aspect.