very scared - where does the fluid go with MLLB?

I have MLLB toe to knee on both legs but after a few days the fluid is collecting in my knees/thighs and now my right leg is bandaged toe to thigh. Where will the fluid go next? This is so frightening. I can't do exercise or walk far due to bad back and having to wear uncomfortable footwear for bandaging, and I can't elevate my legs or lie down in bed for long. Has anyone out there experienced this?

23 Replies

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  • Is the therapist applying MLD to your abdomen? This is essential during compression bandaging- if it isn't done, the fluid will find it's way back into the legs.

  • Thanks for replying. I am being treated by tissue viability nurse who only knows a bit about lymphoedema. Seeing GP next week to ask for referral to therapist but there is little or no provision in my part of London. Could the fluid affect my organs? I think I can feel it in my throat ..... so frightened ....

  • I doubt it will be affecting your throat. You have said before that you have other health problems - it may be anxiety causing the feeling in your throat.

  • Do you know where I can get advice about where the fluid goes?

  • If you google 'how does the lymph system work' you will find lots of easy to read information. Basically the system is the body's dustbin. The lymph removes old cells and excess fluid from the tissues, and eliminates it via the usual routes - urine, and some via faeces. Occasionally, in people who have severe Lymphoedema, it can leak through the skin, MLLB helps to stop this, but as I mentioned before, it is really beneficial to combine bandaging with MLD of the abdomen, to help stimulate the larger lymphatic nodes in the tummy.

  • Thanks for explaining. I want to have MLD but will have to pay £90 per visit.

  • It will be worth it to get one session, and learn how to do self massage and exercises to move the lymph in your abdomen.

  • Thanks, I am considering this. Has mld/sld helped you?

  • I'm a therapist. See what the others here say. MLD is great for boosting lymph flow. When in MLLB, you should also be working on the system that is not bandaged.

  • Would it be possible to talk to you by phone?

  • I have sent a PM with my contactdetails.

  • Thanks so much

  • You might like to ask Age UK if they offer subsidised MLD near you - we have it near us and I have it every month aftercancers.com/2016/05/af...

  • Thanks

  • Since September I have been having lymphatic reflexology and my legs have decreased in size drastically to the point I am now able to comfortably wear more normal foot wear.

    It has been a god send for me and completely changed my life for the better. Not only does it help with the lymph it helps with my depression as well.

    PM me if you want more information

  • I am having my leg bandaged up at the moment , it's not a very comfortable treatment!! Speak to your GP to see if you can take and sleeping medication , I've found that really helps to get some sleep . Breath deeply into your abdomen and as you exhale press down just above your pelvic bones. You can move the fluid up from your legs by pressing in your shoulder breathing and lightly stroking your skin from your waist towards your shoulders. There are videos on you tube which show how to do manual lymphatic drainage.

    My leg is almost back down to its normal size now. Cast covers are brilliant for covering the bandages to get into the shower , once my treatment has finished I intend to put my cast cover over my night time compression to shower the rest of my body and take it off towards the end of my shower to just wash that leg as I find standing in a warm shower without compression the leg starts to swell up .

    Good luck I hope it works for you too. X

  • Thanks so much

  • I had problems with both legs. Three layer compression bandages moved the fluid within two weeks. Unfortunately affected my breathing when I lay down at night as fluid was in my abdomen, not draining away quickly enough. Nurses dropped down to two layer compression bandaging and that did the trick. Took a bit longer but definitely more comfortable. Depends on degree I suppose but ask your Nurses. Good luck.

  • Thanks. Are you treated by lymphoedema nurse? Or tissue viability nurse like me? And is your bandaging toe to thigh?

  • Lymphoedema clinic nurses, open toe to knee. Compression stockings that I use now are the same. Essential to rest with legs raised, then a spell of exercise (walking, etc.) then rest again. Try not to overdo the exercise or you will have ants crawling up your veins and down your arteries. lol. Best of luck.

  • Thanks

  • The lymphatic fluid gradually moves through the tiny tubes under the skin upwards towards a place under your collarbones where it flows into the blood circulation, where it joins the normal way in which the blood removes all unwanted 'debris'. This is the normal - those of us who have lymphoedema have a damaged or faulty system that does not work properly, so this is when the fluid collects and thickens our tissues. MLLB helps to move the fluid upwards as do compression garments. If you wear below knee compression but have nothing to help move it up your thighs or abdomen, it can collect in these areas. I wear Proskins high waist tights (one or two sizes smaller than my normal size) which help to compress and move the fluid on upwards. I couldn't wear the prescribed ones, but I find these very comfortable. I really wish you all the very best and hope you find the help you need. I travel up to St George's Hospital lymphoedema clinic in London (takes me at least 2-3 hours,) which is really helpful. It is worth it and only a couple of times a year now.

  • Thanks for your reply. I can't wear any kind of tights or stockings due to bad back and problems with toes. Waiting to try velcro wraps for thighs in addition to lower leg MLLB.

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