What helps what doesn't ?

Hi I am getting a little downhearted as I can't seem to work out what keeps my swelling down in between treatments. This time it had increased double from the time before between treatments but I don't know what was different. I often wonder if it depends on what time of month it is as this time I was on monthly cycle so both legs were bigger the lymphedema side more than normal side. I do all the things I should in between, wear grade 4 every day, walk every day, do other exercise ie my jogging swimming and metafit, riding. I have Mld once a week. It's frustrating not knowing what is helping and what is not. I was so hoping it had held its own in between again.

7 Replies

  • You are so very very lucky to have MLD every week! Im lucky for it prescribed 1nce a year

    How i wish my PCT would let me have ample if not needed treatment!

    How or what can i do to get the same? Therapist in London charge 120 an hr for MLD!

    Heart broken Mummy to 2 previous babbas of a primary sufferer who's like urself disillusioned ; ( xxx

  • £120 an hr? thats extortionate!! and for once a year ?? im not sure if that would even be effective to treatment

    I highly recommend the lady on here


    or checking on this site for other practitioners who may be closer to you


  • Hi KMDB, Sorry to hear you're having such a hard time. I know how frustrating it can be sometimes :-(

    How long have you been on your exercise, bandaging schedule ?

    It took me a good 3 months of exercise, good diet, bandaging and compression garments to notice an improvement. This was mainly because i lost some weight and my body became more efficient at moving around my lymph fluid.

    I swell up more during my period as well but I was told that this is normal because of the hormones shooting all over the place. I have primary in the left leg and what has worked is keeping the leg guessing so I alternate between full length stockings and knee length tights, Ill take a day or 2 off in the week from bandaging at night and just bandage during the day time if im home all day and walking around. Unfortunately my leg isnt a fan of routine ( like myself :-) and once something works, i will need to change it up after a few months or else the benefits will stop being evident.

    You're doing the right thing by keeping active so dont be disheartened you will find the right combination that is perfect for you.

    Good luck!

  • Hi my leg swelling was brought on by may Thurners which is a compression of the iliac vein that runs to your femoral vein in left leg. I have stents fitted last may and the blood flow is all fine. There is a suspected primary problem also as the swelling has not receded on its own hence the treatment. It came on in may 2011 when I was 8 months pregnant. I started treatment in nov 2011 for the swelling. But it became really effective once the stents were in may 2012. I wear compression from the minute I get up to the minute I go to bed. Grade 4 medi one leg panty. It's only my left side. I have a pillow under my side of the bed to elevate my legs. I get bandaging every two months and I pay privately for Mld every week. I'm just so baffled by why it's up sometimes and not others. I went for bandaging in January and it lost near a litre in two weeks, then in between up to march it only put on 150ml which was great. But in march bandage it only lost 450ml not the litre. And then between march to may it's put 500 ml back on. I was hoping only 150 back on again. I am just frustrated as I can't see what I have done differently between treatments. I was hoping you may all say it's because it was measured this time on a menstruating day and everyone swells a bit then. Any advice would be good.

  • hi kmdb

    aaargh, it just does get you down sometimes, doesn't it? what i want to remind you is that we all go thru phases when it just feels impossible to stay positive, & there's nothing wrong with that (but it doesn't feel great)

    well, did you get measured on a period day??? sounds like you might have answered your own question there ...

    i think you might also be expecting your lymph to be reasonable - you know, you can say to a lot of other bits of your body 'if i do this, i know you'll stop hurting / be able to do more etc'

    your little one must be coming up for 2 now? so you know what toddlers are like - you just think you've got a routine together & suddenly they stop co-operating with it for no reason that you can work out at all

    so maybe it'd help to think of your lymph as a bit like a toddler! sounds like chetanna's worked out that she has to sneak up on hers with something unexpected to stand any chance of being in charge at least some of the time

    & i know i have to negotiate with mine aaaaall the time - if i do this will you puff up? ok, how about if i do 1/2 the job, then do some sld, then do the rest?

    you've got 2 toddlers to look after, & i bet both of them are going through a 'no' phase (you know what i mean? whatever you say, before you've quite finished they go 'NO'!) & you must be completely exhausted! no wonder you're feeling demoralised - you really are doing all the right things you can think of, & it's still not behaving, & it's simply not fair

    if you'd spent all that money on violin lessons for your real toddler, she / he'd be a world famous child prodigy by now

    but the lymph doesn't learn, it does need constant managing, & it is ok to feel really fed up about that sometimes

    not sure if that helps - i'm an arm & torso lymphie but i'm sure the leg lymph experts will be along some more with practical ideas soon

    i'm sending you a virtual hug

  • I have had primary all my life. My Mother

    is 95 - she was called Fat Legs at school.

    Up till 3 weeks ago hers was so bad it

    stopped her walking. Her fingers couldn't

    pull on the stockings, and short stockings

    puffed her knees up till they bulged like

    mini thighs.

    MLD and bandaging made only a temporary

    difference. We paid £40 to a very well

    qualified nurse.

    NHS allowed series of treatments with

    applications each time. Between applications

    we paid.

    Now we have literally CHANGED our

    lives with compression machine. These

    are on prescription in the USA, and maybe

    here now the system has changed.

    Our machine came on free loan from

    BODY BRILLIANT in Henley on Thames.

    They are the UK Agdnts for Mega Afek the

    Israeli firm who manufacture it.

    We have returned the machine now and

    ordered one for ourselves. My mothers

    legs were measured by the nurse before

    and after approx 8 hours ( one hour daily)

    treatment . Total of foot puffs, ankles,

    calf, knee, and thigh is a loss of approx

    20 centimetres.

    The company makes attachments for

    all parts of the body.

    We have trialled the Haddenham machine

    previously. We were charged I think

    £200-0p just for the trial. Their system did

    not work as well for us as the lymphapants

    from Body brilliant.

    I have mild LD in one leg. Whilst I was using

    the machine I could leave off the stockings.

  • Hi there, Lymphedema is mysterious and we can not be sure of how it develops. I am sure that the time of the month can affect the swelling. Also, some are more sensitive than others to certain foods, f.ex. salt which binds the fluid to the body. It is often said that Lymphedema patients should go easy on the salt. I have a poll on my blog where especially salt and alcohol but also sugar seems to affect the swelling.

    I am wondering if you use a nightgarment? Perhaps you want to consider it. I have one and getting up in the morning my leg looks quite good. It fills up during the day though but I feel that it somewhat maintains the size, although it could still be better but I would probably need more than my grade 3 stocking.

    Kind regards,


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