I have mild LD in one arm and am religiously following the advice I have been give i.e SLD, skin care, exercise and I wear my sleeve most of the time. The LD is under control, but I am so fed up with doing the SLD. May I ask how often you all do it. At the moment I try and do it twice a day. Morning before I get dressed and evening before I go to bed. Would it really cause much of a problem if I occasionally gave it a miss, maybe miss one or two sessions a week. I just want to jump into my bed now and again without having to stop and do the massage.
Are you all exceptionally good girls and do as you are told all the time?
My lymphodema is very mild and well controlled. I only do SLD once a day which is what I was told. My nurse said I could it twice a day if I didn’t wear the sleeve.
I do it almost every day but occasionally I don’t and haven’t had problems. I’m not doing it today as it happens. I think it’s a case of seeing how it is for you if you cut it back.
When I was first diagnosed and my lymphodema was at its worse, I wasn’t shown how to do SLD until 2 months later anyway. By that time, the sleeve was getting it under control.
oh andie, you sound like the girl who always does her homework who’s desperate to bunk off school for a day!!
i’m pretty lazy with it, probably manage 5 days most weeks, & wouldn’t dream of doing it twice in one day!
some days i can’t physically manage it so i’ve also shown t’wife how to do it - just lying there is much easier!
having said that, i’m in my post-cellulitis being good phase at the moment & am religiously adhering to the routine … but just once a day
think of it like this: every time you do some sld you’re helping yourself & it’s a bonus, but you can’t let the ld run your life
i even know some people (ahem, elinda!) who don’t wear their compression gubbins every day - i do, cos i really notice the extra heaviness & swelling if i don’t, but it’s about getting a balance that’s right for you
so, as elinda says, dare to experiment & then decide how much sld is good enough for you even if it’s not perfect
happy just jumping into bed, & as far as i’m concerned you get to go to the top of the class (along with anyone else who’s so good at doing the right thing all the time) … just please don’t tell me if you’re very thin & have stopped eating chocolate!
It’s funny though how we feel so naughty if we don’t do our SLD or our exercises or where our sleeves.
I’m not blase but I’m so much more relaxed about it all than I was when I first got lymphodema. I think most of us were terrified of getting it and then terrified of it getting worse.
Can I just say for my ‘well behaved’ rating that not only do I not always wear my sleeve but I do also eat chocolate and I’m not thin. I probably shouldn’t 'fess up to this one but I even had a hot bath the other day as my back was aching so much - did make my arm swell a bit but I really enjoyed it.
So I’m probably right down near the bottom on the ratings list. But honest, I am good most of the time…
Elinda x
Thanks Elinda 45 and Norberte
I fell relieved that I don’t have to be ‘good’ all the time. I do wear my sleeve more or less all the time because I find it easier to put it on first thing and wear it all day because that way I don’t have to stop and think about the things I shouldn’t be doing.
Maybe not the recommended exercise but I now walk my grandchildren to school every weekday(about 2 1/2 miles) and do the haven exercises when I remember.
OH decided he needed to loose weight so as the resident cook I refuse to cook 2 different meals and have subsequently lost a bit of weight( not a lot - less than a stone) but I am not stick thin. There is no way on this earth that I am prepared to give up chocolate, that would be madness.
I will carry on with the SLD but cut it back , just don’t tell my LD nurse
Wearing your sleeve is also a good reminder to self and others that you really should not be doing that lifting stuff even if you actually *can* and they should go ask someone else - I find it so hard to remember this myself sometimes after a lifetime of being the one who “well, someone has to”.
Giving up chocolate altogether is probably a step too far. Walking to school is good though - especially if you can then walk away again and not have to go in!! Uhh Andie, if the weightloss is OH’s idea, how about he takes over in the kitchen for a spell? He has all that extra time while you’re out walking… well done the weight-loss!
How long does this SLD take? I am a bit ignorant because in Germany they never tell us about it - we are supposed to get MLD weekly, but I hate it. I only have lymphoedema of the breast, and every morning I try to do SLD, which I learnt from an English brochure, but I don’t even do it for 5 minutes, which is probably stupid.
Just picked up this thread, oh my goodness what’s this about giving up chocolate… the mere thought of it has me getting withdrawal symptoms especially with easter looming and all those lovely eggs:-)
Seriously though, is it really something we should be avoiding? I don’t sit on my sofa every evening devouring boxes of chocolates but I do like the odd nibble every now and again lol
andie, you’re a star! less than a stone is loads!!
dunno how old your grandchildren are, but if they’d enjoy a game of all of you swinging your arms up & down (especiallly up as far as poss) - perhaps whilst singing a jolly song (!) - that’d be great for your ld
i know some people have talked about nordic poles on here - they’re long walking poles that you hold quite high up so your arms are up and swinging
if you put nordic poles in a search you’ll find the posts - can’t remember who it was who described how you use them in quite a bit of detail but it sounded fun & perfect for helping the lymph out of your arms
& you kept the walking marathons quiet, missis - i’m going off you & skulking back to the back of the class with elinda, where the bariatric chairs & chocolate are
margaret, 5mn isn’t stupid but a good sld, assuming you’ve just got it in 1 or 2 arms / hands, would taake more like 15
i think you might find the video really helpful - postage to germany wouldn’t be that much - & it’s at lymphoedema.org/Menu5/Index.asp#VIDEO
right, i’m off to put loads of rings on over my gloves again ( v naughty!)
ps - sunshine, the official advice on weight is that lymphoedema is managed best if you’re at the low end of the ‘normal’ range of bmi, which is 18 - 24.5
(shove ‘bmi calculator’ in a search & it’ll do it for you)
personally, i was last in that range about 25 years ago … a little of what you fancy does you good & small amounts of dark chocolate are good for you
(so’s slobbing on the settee but there’s less clear scientific evidence for that one)
yup, i’ve got it in both arms & hands, & trunk, & i do the version where you’re encouraging the lymph down towards your groin nodes (that’s not as horrendous as it sounds & it’ll make sense when you see the dvd!)
good luck with it - really is worh getting if you haven’t had anyone to show you
& haven’t there been other people in germany who’ve been to rehab centres where you get loads of mld & get taught all this stuff? i remember feeling v jealous
My nurse weighs me every time I go for a sleeve fitting and each time I say I’ll lose weight but don’t. I don’t know if anyone saw the Horizon programme yesterday but makes you realise why it’s so hard.
I have discussed the amount of SLD I do and not wearing the sleeve on occasions with my nurse. She is very strongly of the view that lymphodema shouldn’t rule lives. Knowing I can give those things a miss sometimes really has helped me psychologically. Bizarrely I probably wear my sleeve more now I know that I can leave it off sometimes.
I do SLD for about ten minutes every day first thing in the morning before I get up. I have a tv in the bedroom and put on breakfast tv so I can time what I’m doing. It is rare for me not to do the SLD but the odd occasion missed certainly hasn’t caused me any problems. I would always do SLD though if I wasn’t wearing my sleeve.
The biggest problem for me is actually gardening which I love and cleaning which I hate! Both of those seem to cause some swelling but I try to rest up a bit afterwards and the swelling usually goes down within a day or two. I might do extra SLD on those days.
Norberte. The grandchildren I walk to school are 10 and 8 and already think I am slightly mad. The thought of walking swinging our arms high made me laugh. We walk along a busy main road so I can envisage the strange looks we would get. I do however keep my affected arm slightly raised by holding the strap of my shoulder bag and on the way home while plugged into my iPod I open and close my fist in time to the music. Daft but it works for me.
My long term aim, and I do mean long term, is to achieve a BMI of 22.5. Depends how long OH decides to stay on his diet.
My LD nurse has never weighed me, are they supposed to? In fact she tried to discharge me the last time I saw her. OH stood up to her and insisted she keep me on her books
When I asked how long to do the SLD she was noncomittal and replied “as long as you feel is necessary” Not the most helpful of answers.
The lady I see for MLD said with LD you have to think outside the box and I fully agree with her
Norberte, yes, I get the massaging towards the groin from my therapist every week.
I went on a three-week stay at the oldest lymph clinic and I was really unlucky. The therapist was great, and after getting MLD and compression twice a day for three weeks everything was wonderful, but what I wanted was a long-term improvement, which this wasn’t, and some advice. The doctor I saw was new, and at the beginning when I asked whether the inflammation in my breast had anything to do with the clips left from the OP, she said she’d consult a colleague, so that all went OK. But at the end of the three weeks she tried to get me diagnosed with severe arm lymphoedema and completely ignored the breast. They measure the arms before and after, and both my arms lost exactly the same amount of fluid, so that proved I didn’t have a lymph arm, as indeed the head doctor told her, who fortunately attended the last session. I still got a sleeve, which I never use, simply because it had been wrongly prescribed. I also got a weighted prosthesis for the breast, but got the feeling that pulls it down and worsens the lymphoedema, so haven’t been wearing it. There was a talk every three weeks on looking after lymphoedema, but I missed that because I was not told it was on an hour after I arrived, and I left before the next one. SLD was not taught. I did get a lot of ideas from the therapist though. But have not bandaged myself because I find it so hard.
I went to the wrong lymph clinic. I also missed the lymph talk at the cancer rehab. I went to. I know these are a luxury - I think Germany is the only country in the world that has these clinics after breast cancer - but I didn’t want to go, but I realized eventually that only there would I get any information about treatment after OP etc. (since my gynaecologist puts all side effects down to my weight and age, long story, didn’t know you could get MLD for the breast, doesn’t believe people put weight on during chemo, doesn’t believe side effects of Arimidex even if they’re listed in the package, I could go on).