Manual lymph drainage not helping

I've had Primary lymphedema in my left leg for fifteen years. After my second child two years ago it spread to my left leg. In February I was hospitalized with massive, all over swelling. The only thing they could figure out was that it was caused by my lymphedema. I have been getting manual lymph drainage now for three weeks and I'm not seeing a lot of results. In fact, it appears to be in my arm and abdomen now. I also have a swollen, hard node behind my left ear. Plus, my right breast is also swollen and there was some fluid coming out of the nipple yesterday. My lab work is fine. Any suggestions on test I might can get my dr to run or anything at all that might help me?

13 Replies

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  • Hello. I know how frustrated you must feel! I pray things get better for you.~~~

    Are you taking asprin? That can make symptoms worse. Are you able to do any light exercises? Can you do breathing exercise? There is so much!

    How about self massage...oh, your nurse taught you. Well I think sometimes it is just slow going. Just

    Never give up.

  • so sorry for your situation, its extremely frustrating and many people don't understand the effects of all the swelling. It took me nine months to reduce the fluid. I wore below knee stockings Activa grade lymph 2. In between used compression bandaging, and taught manual massage which I try to do every day to maintain it, Unfortunately ive been told there is no magic answer and a lot of well intentioned medics don't know anything about it, Take care,

  • Hi try to stick with MLD its early days it took a good few sessions before i felt it was helping me. Contact LSN you can order a dvd to teach you how to self massage its helped me along with the deep breathing.I cycle and that really helps push the fluid up my leg whilst wearing compression tights. That may seem a chore when your feeling so swollen maybe doing a few mins twice a day on a indoor excercise bike may help. Good luck i do hope you get sorted out soon i would imagine your feeling down with all you have to cope with keep smiling and know all us lymphies are here for you when you need support take care

  • Thanks so much guys. This is so hard. I will try getting the DVD so I can learn to do it myself. My therapist thinks I should be responding better than I am, and that worries me. I feel like I should at least not be getting worse, which is what is happening.

  • I have replied to Staceykat via private message - she lives in the US, so I've pointed her in the direction of some support services and information sources on her side of The Pond!

  • Ask to see your GP right away re node behind left ear and fluid from nipple of right breast as these may not be LE related. I do hope that MLD gradually begins to have an effect as your situation sounds very difficult.

  • I have an appointment in the morning, I'll let you guys know what he says. My therapist is also concerned and says we need to rule out any underlying conditions

  • Yes, I will definitely look at the dietary reccomendations. I've had about nine sessions of the treatments now, with improvement noted at first but now worsening on the left side and now the swollen breast, arm, and abdomen. I also have lipolipedema is what they have said recently. I'm hypothyroid and take medicine, I think I have lost weight but it's hard to tell how much because of all the fluid

  • I have lymphodema in right leg I get mld now and again and approx every 12/14 week 2weeks of pressure bandaging I only see little reduction too dont last long only temp pain lesser too have wear compression stocking everyday too :( had this from age 16 ,'37 now still cant come to acceptance anyone else like this?

  • I understand. This is so hard to accept. I was ok when it was just my legs. But now that I'm swelling all over I can hardly stand it. I'm going to try to learn the way to massage myself and see if doing it everyday helps. I'm already spending two and a half hours a day three days a week getting treatments and wraps.

  • It must be very difficult to know how to address this if you have widespread fluid, but I would definitely emphasise the deep breathing. You can find out about deep breathing techniques by searching online. My son (who has primary lymphoedema in his legs), says that singing and playing a wind (or brass) instrument has been hugely helpful to him as you concentrate on breathing from the diaphragm, which really gets the deep lymphatics draining. After he's been playing or singing for a few hours, his legs feel noticeably more comfortable.

  • NOVEL SURGICAL TREATMENT FOR LYMPHOEDEMA PATIENTS IS NOW AVAILABLE IN THE SOUTH EAST OF ENGLAND lymphoedemasurgical.com/blog/

  • NOVEL SURGICAL TREATMENT FOR LYMPHOEDEMA PATIENTS IS NOW AVAILABLE IN THE SOUTH EAST OF ENGLAND lymphoedemasurgical.com/blog/

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