Just diagnosed with Lymphoedema on xmas eve- mild at the moment but worrying nonetheless. my arm had felt really tender from the elbow up and a bit achy and now i seem to have some slight swelling (i think) and weird pitting when i bend my arm back. My doc has made a referral to a lymphoedema nurse but i’m not sure how long that normally takes to be seen by them and what i should be doing in the meantime in case it gets any worse. Am trying to sleep with my arm raised and not wear anyting too tight but not sure if i should be doing anything else. Just after an idea of what to expect when you are referred (although what i would really love is just some reassurance that this whole thing is not actually as bad as i have in my head it will be!! Have been paranoid about it since my mastectomy - gutted now i have it! Had even given up my beloved long hot baths after the op…
DGW
x
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Hi i know it is horrible, I can remember how i felt when i found out I was distraught to think about wearing the sleeve every day and it took me about a year to feel like tough i dont care. on a plus point thought although i still have it but 2 years later im on a trial without sleeve and i am careful but the reduction has been really good and not as traumatic as originally thought and im now facing a future where i may not have to wear the sleeve, yippee…xx
Me too
Got my sleeve two days before Christmas. My lympho is mild and my BCN says although I am unlucky to get it so soon after surgery ( April) it is best ti treat it when it is mild as you can prevent it getting much worse. The sleeve is ok at the moment. Mine is not beige, but a sort of greyish colour. So American tan can be avoided. I treated myself to some expensive moisturiser for each night, to massage and cheer myself up. I also have the DVD on massage techniques, but I have to admit with Christmas I haven’t watched it yet. Just taking it a day at a time at the moment.
Good luck
Debx
I was formally diagnosed with mild lymphodema in November. I waited about 4 weeks for an appointment as the nurse was on leave. I then had a sleeve that wasn’t working and waited another 2 weeks as I was on holiday.
I don’t think in the scheme of things a few weeks makes much difference. The nurse I see is great and now fits me in if and when I need to see her.
As Norberte says try to avoid getting cracks in the skin by using moisturiser. Also if you get scratched put some antiseptic on and cover.
You should continue with the arm exercises you were given post surgery as they are important to help with lymph drainage. The lymphodema society have leaflets on the exercises you should do too and those are the ones my lymph nurse gave me. They also do a DVD for £12.
I’m still trying to get my head around it all. It’s not too bad because it’s winter but I’m not sure how I’ll cope in the summer. It’s so reassuring to know that people can have trials without sleeves and that they do help.
My main aim for the new year is to lose weight as I understand it’s easier to control lymphodema if you’re not carrying around excess fat! Better finish off that Christmas cake then…
take care, Elinda x
Hi everyone
i had a mastectomy and 30 nodes removed about 4 weeks ago and am now suffering from swelling in the armpit area - this seems to get worse after doing the exercises. Does anyone know whether this is normal. It is also not too bad in the mornings, but gets worse throughout the day. Could this be the start of Lymphodema? As i’m sure your all well aware, it is a little bit difficult getting any answers over Christmas. i don’t no whether i should be continuing with the exercises or leaving it untill i can speak to some one. Flip, i don’t know how i’m going to get through the next 6 months of treatment - i’m already fed up with it. Any advise will be gratefully received (even if it’s to tell me to stop moaning lol)
thanks x
There is an American website think its called lymphodiva which has the most amazing colourful and patterns, make a real statement.
Hi mazbaz,
Sorry couldn’t help with whether your condition is lymphoedema. Mine is a bit of a strange one because didn’t have any op. I was told that during treatment (chemo / rads), no massage, but continue with mild exercises. I completely agree with you about the Christmas - holidays do have their downside!
My arm started to swell a few weeks after my initial dx (June, 09), but didn’t do anything about it until a few months ago and got my glove and sleeve in Oct, 10. Yes, it’s a bit heavy and uncomfortable, but with all the chemo and rads, I can’t be bothered with it!!! BC is more urgent than lymphoedema to me!!
Elinda, completely agree with you, not sure what’s going to be like in the summer. I’m finding it a bit hot sometimes even in winter!!
lisaf, I’m quite interested in the trial you mentioned. Could you please give me a bit more info?? PM me if you prefer. Thanks a lot.
norberte, one of the most laughable comments I got from my friends (she knew I’ve got BC) were “hmm, what’s wrong with your hand/arm, was it arthritis?” - “hmm, no, what do you thinking? I’m only in my 20s!!”
DGW, I had lots of info at my appt, too. They measured both my arms to compare the percentage and I tried lots of different sleeves/gloves on. The 2 nurses were lovely, too. Hope your appt goes well.
Take care xxx
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My goodness - Father Crapmas certainly has been busy dolling out all these unwanted gifts this year! It certainly wasn’t on my christmas list though- would much rather have had a selection box.
Thanks all for the replies / advice and to find others in the same boat (titanic?!) Makes me feel a wee bit better! although it probably hasn’t sunk in that this isn’t going to just go away. will be a bit more real when i have my appointment no doubt.
Sorry to hear you have cellulitis too norberte - i’ve been looking out or any signs of redness on my arm too but OK so far. Wasn’t sure if / when you were meant to take penecillin but will ask about having an emergency stock just in case. I had already bought some antiseptic wipes and cream a while back and been paranoid about cuts etc but i’ll actually have to make sure i take them with me now rather than them sitting in the cupboard!
Does everyone diagnosed have to wear one of these bizarre sleeve things?! LisaF - good to know that if so we might not have to wear them forever! I shall hope for that too…
XWelcomeX / midge- yes beige / ‘greige’ seems rather disturbing -i wear a lot of black so will see if i can get that too!! might just be able to pretend it’s a t-shirt sleeve although the glove thing if i have to wear one will not be as easy to disguise. Will also check out the webiste you mentionedJanilizi!Will maybe have to get a winter wardrobe of them and a summer one! Also saw a sleeve online that you wore in hospital that informed medical staff not to put drips or take blood from affacted arm in case you were out for the count.
i’ll just have to get used to the michael jackson quips no doubt! Or the arthritis ones m1yu!
Midge - i had my surgery at the end of Feb.Do feel slightly hard done by that it’s happened so soon- just adding to all the rubbishness. We must have all been on santa’s naughty list! Can’t blame you for not watching the DVD- would much rather watch festive telly!
Elinda - i am in the midst of demolishing all that’s left over from Christmas so i can start the new year afresh and go on a bit of a detox. That’s my excuse just now anyway…
Mazbaz - best to ask your breast clinic to be on the safe side. it’s only 4 weeks after your op it’s all going to feel very odd for a good while yet. I did feel very swollen etc post op and like i had a wad of cottom wool under my arm and my surgery bits did get more heavy / uncomfortable towards the end of the day. I went to get my underarm checked out as i had some stitches there that i thought were infected but it was all OK. You do tend to get a paranoid - and rightly so - as you are never sure what’s considered ‘normal’ post op and what’s not!
So not exactly the start to the new year i had in mind but good to know i can call on others for advice / reassurance. I will also try to avoid looking at the more extreme photos of this condiition on the web…! Keep me updated how you are all getting on
Thanks all
DGW
X
Off to practice my moonwalking now…shamon - ooo
Hi girls and Lisa! (from other post)
I was diagnosed 2008 and had a bit of swelling of my hand after surgery for a few months, all then cleared up but my underarm and top of the arm always feels odd like wearing a blood pressure monitor but I kinda got used to it. However just prior to christmas hand started to swell and I had an appointment with Lymp nurse and am now wearing a glove to reduce swelling. The strange thing is my hand appears to swell more when I wear the glove that without it? not sure if that is supposed to happen all very confusing. I find swimming really helps to reduce it though so when you are able to maybe a trip to the pool will help obviously not why there is any sign of infection but as you say wont be so easy in the hot weather wearing it paricularly while having numerous hot flushes.
I have beige gloves but they get so damn dirty when I am at work so thinking of asking if I can have a black one too that wont look so dirty and I do wash the glove every night. All a bit of damn nusiance isn’t it. Good luck all. Bev
Hi all
Bev - know what you mean about the glove. My hand still gets puffy with it but I’m getting an all in one arm and hand glove (wowza)!
Not sure how I’ll manage with cooking though. Managed to get chocolate all over the glove at Christmas so I now take it off when cooking.
DGW - your message really made me laugh. It’s so great we can do that here.
What do you say when people ask you about your sleeve? Since wearing the glove it’s more noticable and a couple of people have asked me what’s wrong with my hand. Others just give surreptitious glances too polite to ask.
Perhaps we should up a lymphodema and moonwalking class - that would really confuse people!
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hi everyone
thanks for responding to my concerns. sometimes you just need someone to tell you what you already know. Am signed up to take part in a study on lymphoedema, so should be seeing the nurses the end of this week. Hopefully i will have my mind put at rest then. Need to carry on with these exercises because it gives me something to focus on and helps me feel that i have, got some control over my own body (flip - that sounds deep) but i’m sure some of you will know how i feel.
Dgw - your right ,you do get a little paranoid. Going to work on this also, it can’t be good for the soul lol.
Thanks again
Maria x x
ive had lymphodemia since 2007. must say the sleeves dont look very fashionable do they ,sludge grey ! i have a gauntlet type and find it does help not having to wear two garments and getting a swollen gap between the arm sleeve and the glove part .as for colour ive got some fabric paints and put some designs on mine ,if i have to wear them full time they might as well look nice ! the ones on the diva site were a little expensive for me hence doing up my own .
i have very bad swelling under my arm but think this is possibly due to where the sleeve ends and pushes up the fluid under the armpit . really wish there was a cure for this but resgned now to being like this for ever ,there are bracelets you can get from your lymph nurse or the web site that warn about blood pressure and blood being taken from affected arm .im 5 yrs along the line now and so grateful to be here ,even though some days i wishg i could go back in time and have the old me back .! lynn .
Hello everyone
Norberte - like some of your suggestions of what to say. I’m going to a drinks thing at one of my neighbours this week and I’m going to remove the sleeve as I just can’t bear the thought of one person after another asking me. A bit cowardly I know. They won’t know what lymphodema is and I can’t pretend it’s a sprained wrist as I’ll probably be wearing the sleeve for a while (hopefully not for ever).
I can’t wear rubber, latex or plastic gloves because it makes my eczema flare up. I rang the helpline and they suggested getting some white gloves (poss.from Boots) to put underneath the gloves. This might be a good tip for anyone with a glove particuarly in the summer.
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Hi Norberte - hope it goes with the lympho nurse and let me know whether you get the all in one sleeve and glove. I’m still waiting for mine to arrive.
got fabric markers from the art shop .they are put on the fabric then ironed to set te coulor ,ive washed mine a lot and the are still ok . good luck xx