very scared - where does the fluid go with MLLB? - LSN

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very scared - where does the fluid go with MLLB?

20Sycamore profile image
25 Replies

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?

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20Sycamore profile image
20Sycamore
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25 Replies
Lynora profile image
Lynora

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.

20Sycamore profile image
20Sycamore in reply toLynora

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 ....

Lynora profile image
Lynora in reply to20Sycamore

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.

20Sycamore profile image
20Sycamore in reply toLynora

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

Lynora profile image
Lynora in reply to20Sycamore

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.

20Sycamore profile image
20Sycamore in reply toLynora

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

Bijingo profile image
Bijingo in reply to20Sycamore

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.

20Sycamore profile image
20Sycamore in reply toBijingo

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

Bijingo profile image
Bijingo in reply to20Sycamore

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.

20Sycamore profile image
20Sycamore in reply toBijingo

Would it be possible to talk to you by phone?

Lynora profile image
Lynora in reply to20Sycamore

I have sent a PM with my contactdetails.

20Sycamore profile image
20Sycamore in reply toLynora

Thanks so much

veriterc profile image
veriterc in reply toLynora

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...

20Sycamore profile image
20Sycamore in reply toveriterc

Thanks

rother profile image
rother

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

Niktcx profile image
Niktcx

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

20Sycamore profile image
20Sycamore in reply toNiktcx

Thanks so much

PenelopeW profile image
PenelopeW

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.

20Sycamore profile image
20Sycamore in reply toPenelopeW

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

PenelopeW profile image
PenelopeW in reply to20Sycamore

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.

20Sycamore profile image
20Sycamore in reply toPenelopeW

Thanks

Mon1caM profile image
Mon1caM

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.

20Sycamore profile image
20Sycamore in reply toMon1caM

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.

fear does not help... yes it is scary....breathe... research as much as you can

find a diet to help release fluids... lemon water. soups without salt variety of fruits and veggies .. no processed foods... minimal sugars /salts our bodies can heal themselves find the right formula but not easy.... keep a journal and discuss with this website and drs.... good luck... I felt the same way long ago and when it gets worse it is scary uncomfortable... have to go back to square one..

20Sycamore profile image
20Sycamore

Thanks

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