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Feeling a bit miserable about lymphoedema :-(

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Hatts
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Re: Feeling a bit miserable about lymphoedema :-(

Hello everyone
Thought I would just update you. I finally got to see my lymphoedema nurse yesterday as I am still having problems with my hand. The bad news is that the antibiotics didn't work and I still have an infection. Even worse, I have a glove - ahhhhh! She felt I needed all out war on the infection which means another dose of antibiotics and compression sleeve and glove to help the drugs to get to the infection, plus massage and exercise. The good news is that the glove is hopefully temporary. I am going back in a month and if it's better, the glove can go so fingers crossed!

I also had fun in Spain so that's good! Hope everyone is ok.

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Re: Feeling a bit miserable about lymphoedema :-(

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Re: Feeling a bit miserable about lymphoedema :-(

I suppose it has to be the michelin man..? 😞

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marjay12
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Re: Feeling a bit miserable about lymphoedema :-(

Hi Hymil,

Many thanks for the welcome, its nice to know that there are a number of us in the 'gang'.
In answer to your question, yes my arm is ok at this moment in time however, very aware of the risks as it is my right leg, left breast and I am left handed so trying very hard not to put that side under to much stress as I don't think I could cope with the arm as well.
I really like the idea of my club badge and t shirt, maybe they will arrive with my new compression bras!!!! I think I will need a little something else for my husband to look at given the sexy nature of my under garments at the moment!!

Maggie xx

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Re: Feeling a bit miserable about lymphoedema :-(

Welcome MarjayMaggie! Sheesh we are popular, someone tell those surgeons to take a rest while we go make some more club badges and tee-shirts! Although it's good if it means that the word is getting out and people are finding us. Welcome, and although we are sorry you are in this pickle with us it's a pleasure to have you here. Im not surprised you are fed up, with all those different issues. Is your arm actually OK then? cos arms, legs AND breast sounds really unfair 😞

One of the first breastcancer sisters I ever met, had horrendous lymphoedema, a really huge arm, so pardon me if I go on about it too much or out of proportion for my own mild swelling, but she taught me not to ignore it even in the early stages.

marjay12
Member

Re: Feeling a bit miserable about lymphoedema :-(

Hi all,

Do you mind if I join the "gang" as diagnosed yesterday with breast lymphoedema and feeling really fed up, plus I also have leg lymphoedema from diep surgery and chronic nerve pain from back. Just feel I am begining to swell up in all sorts of places!!

Maggie

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Re: Feeling a bit miserable about lymphoedema :-(

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Re: Feeling a bit miserable about lymphoedema :-(

Welcome Beenie. Lymphoedema is a lifelong condition unless you have node sugery which I heard is coming for some people in the future, if they can mend the system then the lymph can start flowing again but until that we're stuck with it. The system has been blocked by removed lymph nodes and somehow we need to divert the fluid another way round, that's what the massage is all about; if it hangs around in the tissues you have a raised risk of infecton from bites stings scratches etc and also the tissues can harden which makes it harder to do the massage effectively. That's Q3!

Flying: I travelled by air recently, a fairly short hop, no big problems, I was more worried about the beanie-boob and the scanners... I got a few questions about the sleeve ("It's to help my swelling, Consequence of surgery from last year" answered most of them) and lifting stuff into the overhead locker was out of the question but other than that is was fine. I know I couldn't have done the seat by the wing-exit where you have to be the one to open the emergency hatch. Also you should stay well hydrated, well I noticed those cups of tea are miniscule so take as much water as they allow and remember to drink it!

Types of sleeve: yes there are lots, best be guided by your nurse. I don't know the waiting time in each area but I would say to wait, but while you wait, watch the you-tube video below on lymphatic drainage; Macmillan also have a very good DVD about it. There are websites that sell the sleeves, try Haddenham medical supplies or Johnbell, but because in the UK they are normally selling through the NHS, they struggle to get you a price. There are overseas sites too, Lymphedivas a US site have really pretty ones and the german section of Mediven. But they really do need to be the right size and compressive strength in order to do the job. It's quite an involved subject, guess that's why we need specialist nurses.

4. Exercises, yes there are, now where are they? New window time...

Good luck with the nurse on thursday.

Ok, here's a few links then:
http://www.lymphnotes.com/
http://www.lymphnet.org/
http://www.stepup-speakout.org/
http://www.youtube.com/watch?v=a9FPhFDOB8E&feature=related

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Re: Feeling a bit miserable about lymphoedema :-(

Hi ladies

I have the beginnings of lymphoedoema and am seeing a nurse on Thursday. I was feeling miserable myself about it all when I saw the title of this thread and thought I would ask a few questions.

1) I am flying in mid September. Has anyone here with lymphodoema found flying a problem?

2) are there different types of compression sleeve and how much do they cost? My nurse is not NHS. Would I be better to go via my GP to get this sorted or is the wait very long?

3) does it go away eventually, or are we stuck with it for life?

4) are there any exercises I can do for myself before I see the nurse? My hand is tingling and stiff.

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Re: Feeling a bit miserable about lymphoedema :-(

my lymphoedema has come on since rads, but im not going to stop doing what i do. grrrrrr. good luck to you all.

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Re: Feeling a bit miserable about lymphoedema :-(

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Hatts
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Re: Feeling a bit miserable about lymphoedema :-(

Good to hear your comments about the glove MNC.

I have finished my antibiotics now. They did seem to help but I am still getting some intermittent pain in my little finger and the knuckle so I am at a loss as to what is going on. I have an appointment with the lymph nurse on 5th Sept so I'm hopeful that she may be able to shed some light on it. I am not wearing my sleeve til then!

Off to Spain tomorrow - yipee!

🙂

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Re: Feeling a bit miserable about lymphoedema :-(

Sadly, looking for a liberty bodice on ebay seems to be the quickest way to draw out all the pervs for miles around. I'm not going there again.

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Re: Feeling a bit miserable about lymphoedema :-(

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Re: Feeling a bit miserable about lymphoedema :-(

Welcome mnc 🙂 Exercises are good, aren't they? Great when you find something that works! I'm not as good as I should be with the moisturising but then I'm not a sun-baby. I do use moisturising shower-gel. It does sound like you have a good selfcare routine going. The glove/sleeve is certainly a good reminder to self and others that you are more vulnerable, need to take extra care and are exempt from certain tasks. So much for trying to help!

Norberte, if I ever see an old-fashioned fleece-lined liberty bodice, that will do me fine. And before you ask which century I'm from, No, I never had one first time round, I think I was still in nappies when they went out. My older friend had one but she was the youngest in a long hand-me-down family, and was saving up so she could buy her own bras. I have found some help from a sleeveless tight-stretch tee from Primark for a ridiculous figure - £2.99 and size 10 respectively! Which, with my size 18 bottom and only one boob, is definitely a bit ridiculous if I emerge from the bathroom with nothing else on my top half. You gotta laugh.

I'm a bit worried about this high pitched whine you get though, does it crackle at all? Sounds as if you could have an air leak somewhere and that's not good. But no, under my arm is very non-specific, the tag where it should be flat and isn't is at the medial end of my Mx scar. It's not bad enough to make me want to go near a surgeon yet, just annoying, and also not lateral enough to get compressed by the beanyboob. It's not flat and it's not even a cleavage either.

mnc
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Re: Feeling a bit miserable about lymphoedema :-(

Hi. I've had mild lymphodema for a year ever since a banged my hand on the bracket on a car roof box when I was trying to help my complaing husband put the rubbish out.

The lymphodema nurse told me to wear a sleave and a glove but the sleeve made my hand even worse so I just wear the sleeve and have got used to it. I treat myself thought now and again by not wearing it when I go out and I definately don't wear it at job interviews!

I sleep with my arm propped up on a pillow and in the morning it is almost back to normal again. I also squeeze my hand into a fist and then push my fingers out a bit like if you were counting in fives fast. I move my wrist in circles for several minutes and sometimes I think I feel the swelling going down there and then.

I also religously moisturise my arm and hand every night with aequeous cream.

I almost think of the glove as protection for cuts and insects bites as well as safety from getting knocked again.

Good luck.

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Re: Feeling a bit miserable about lymphoedema :-(

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Re: Feeling a bit miserable about lymphoedema :-(

Guess I'm also a bit glum as my nurse wants me to go to higher level of compression and I tried that before and hated it. Will have to see what sleeves the postman brings. If only it was as simple as giving up salt or something.

I'm upping the ante now, since the sleeve alone wasn't holding it, being promoted to a trial with kinesio-tape: I am going to have to be a contortionist to put that on the back of my own shoulder... thank goodness at least it's my non-dominant arm, I can't imagine having to learn it all left-handed! But apparently it may deal with the axillary flab and the dog ear on my chest. Ah, the challenges. Maybe there's way to spread it out on the carpet sticky-side up and just roll over onto it. That's if I can do that before the cat walks all over it LOL.

Plastic gloves while cooking, it sounds like there's a nasty accident waiting to happen there. Shrink-fit, anyone? Maybe gloves while washing/chopping, but I would be very wary of flammable clothing when near the fire. (cooker/heat source). Especially if it's hard to get off in a hurry.

Like you, I've asked to go for my appointment late afternoon next time. Being first on the list and running to schedule is all very well and good, but isn't the swelling always worst later in the day.

elinda45
Member

Re: Feeling a bit miserable about lymphoedema :-(

Hymil - it is hard sometimes to feel that the nurse understands what it's like to be wearing the thing day in and day out.
I felt like screaming when she said wear plastic gloves when cooking - it's so impractical (I take my sleeve off now).

I was worried how much my sleeve was digging in so I arranged an appointment with her as late in the afternoon after I'd been wearing the sleeve for quite a few hours so she could see exactly how it was marking. She said it was fine - like you, I think it seems to defy logic but have taken her word for it.
Some days it gets very uncomfortable and it feels so tight at the top that I take it off. Usually a very hot day. That's only occasionally though and most of the time it's fine. My skin does mark easily anyway.

If most of the time it's getting very red and indented and/or feels uncomfortable, I would have thought the sleeve isn't the right one for you. It's difficult but I'd keep going back. I don't know anything about bandaging as suggested by Norberte but that would seem to make sense if it's the top of your arm where you have most of the problem.
take care, elinda x

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Re: Feeling a bit miserable about lymphoedema :-(

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Re: Feeling a bit miserable about lymphoedema :-(

But it can't be right that it's digging in at the top and then suddenly a little higher there's no pressure just above that, surely that's wrong? Exactly at the bit of my arm where the swelling is most... And turning the sleeve inside out, that won't change the pressure, it will just make it more slippy so it slides down more... Do any of these people actually ever try to wear a sleeve themselves?

Don't you just want to cry sometimes.

elinda45
Member

Re: Feeling a bit miserable about lymphoedema :-(

The hold up thing is a problem. I think some of it probably depends on how well the sleeve actually fits as the first type I had didn't hold up nearly as well as the ones I have now.

Another tip from my lymphodema nurse is that that sometimes the little white bobble hold up bits get residue on them which stops them sticking so well. She said try lightly scrubbing them with a nail brush. I have found that really makes a difference.

Another suggestion was that if, for example, it's really hot and the sleeve is digging in at the top, she said you can wear it inside out.

Elinda x

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Re: Feeling a bit miserable about lymphoedema :-(

Come down to the library and get free access while your laptop is in drydock.
Was wondering about double-sleeving as i just found my swelling has swelled although I been doing all the right things, feeling a bit down about it all. Also was wondering about these silly hold-up sleeve-tops that don't: has anyone tried using actual old-fashioned suspenders hooked up to whatever bra/bra-susbstitute you're using? my current sleeves have a bra-strap/shoulder extension but I guess the next batch whenever they arrive, may have forgotten this, see experiment #3423...

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Re: Feeling a bit miserable about lymphoedema :-(

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elinda45
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Re: Feeling a bit miserable about lymphoedema :-(

Well it's got to be Option D hasn't it? The least sensible of course but the one we all go for when we know we should be doing something else!

Feel lots better soon! Elinda x

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elinda45
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Re: Feeling a bit miserable about lymphoedema :-(

Love this thread! Good to have a moan and rant sometimes isn't it?

Feeling much better although that's it no more After Eights. I had some on holiday and they became my latest guilty pleasure. My stomach rebelled!

Norberte - did you know that peppermint can cause reflux? I miss my fruit probably most of all. I love summer berries and can't eat them.

Marli - I have heard that about Vit B1 although there doesn't seem to be much evidence to support. However, if it works.......

Sandra - do hope you're arm is improving. Horrible when it affects what you want to do. Love the idea of hiring out a pipe smoker - I think I need one full-time, would there be special rates?

Hatts - is your arm improving yet? At least should be settled by the time you go to Spain which is definitely something to look forward to.

Elinda x

marli
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Re: Feeling a bit miserable about lymphoedema :-(

Re. insect bites. My husband attracts them and has some really nasty ones esp. in England. For a trip to Vietnam I bought Vit. B1 from Holland and Barrett only cost about £3 for a 100. Not one bite while he was away so something worked. They smell horrid but if they do the trick!!! Good luck. xx

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Re: Feeling a bit miserable about lymphoedema :-(

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Re: Feeling a bit miserable about lymphoedema :-(

OOh well I'm feeling miserable about my lymphoedema now......it has been relatively well behaved for two years but after doing the market on Wednesday,hmm does involve lifting heavy bread baskets and puting up a stall,but I was wearing my sleeve, my arm swelled alarmingly and was itchy,started on the stash of emergency antibiotics just in case and swelling has gone down slightly but ooooohhh it's aching from the top all the way down to my fingers.Not a happy bunny as I know it is prob one of those things but it did stop me from doing Friday market. Very p***ed off that it has stopped me from doing something as I have to be sensible about it. GRRRRRRRRRR. Maybe being sensible doesn't suit me ! Hey ho, just had to have a moan.

I'm Scottish,though live in Wales now and when I go back "home" I get eaten by the midges. Have tried everything going including avon skin so soft and it didn't work for me. Best thing I have found is to sit next to a pipe smoker,though those are in short supply these days.....maybe that will be my next business venture....could hire them out by the hour !!!

Hope we are all feeling a bit more cheery this week and you are much better today Elinda.

Hatts
Member

Re: Feeling a bit miserable about lymphoedema :-(

Funny you should mention Avon Skin so Soft Norberte as my mum has just given me a bottle of it. It's in the form of bath oil and apparently, if you add it to your bath, it really helps to avoid bites. I'd never heard of it. I am going to Spain in a couple of weeks so I will give it a try.

As for the doc and the lymph nodes, it is quite funny now I think about it. At the time, I didn't even click immediately as I am so used to my consultant prodding me in that area! It took a few seconds before I said 'oh, no point feeling up there, I don't have any lymph nodes'!

Elinda - I hope you are feeling better. Poor you, sounds like you had a bad night.

elinda45
Member

Re: Feeling a bit miserable about lymphoedema :-(

Yes, Teatree sounds a good idea too. I don't know if I'm imagining it but I recall seeing it in a smaller rollerball (like a pocket size deodorant) which would be very handy.
I like the savlon spray because I'm lazy and all I have to do is spray, no need to look for anything to apply it with.

Quite honestly Norberte I don't think I'd ever keep insects at bay. One year I covered myself in insect repellant and they found one tiny spot that I'd missed and bit me to pieces there.
I live somewhere that has all the things needed for lots of insects: woodland, streams and water, and a nearby pig farm. I've never seen so many different species of insects and spiders in my entire life as those I've seen since we moved here.

I'm feeling very subdued today as I had a horrible acid reflux attack last night and was very sick. So no more tantrums - I don't have the energy. Think I'm in self-pity mode today.

Hatts - hope you're arm is starting to improve.

take care both, Elinda x

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Hatts
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Re: Feeling a bit miserable about lymphoedema :-(

Oh no, I hope the tantrum was short lived! It is impossible to avoid any type of injury. I went to Boots today and bought some antiseptic wipes for my handbag so I am well prepared for all eventualities, especially as I am cat sitting next week! I like the sound of the Savlon spray. Might need to make another trip to Boots...!

elinda45
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Re: Feeling a bit miserable about lymphoedema :-(

Norberte - you say the kindest things, thank you. Good luck with the new sleeve, hope that you it will be okay in black this time. My first poor fitting sleeve was a horrible pale beige and very noticable.
I'm lucky now that my well fitting sleeve comes in caramel which is almost an exact match for my olive skin, it hardly shows. Of course, that doesn't apply to young children who can always spot things and always ask!

I'm over my tantrum for today. Have wiped away the tears and washed my face but still a bit grumpy.

Hatts - sorry I misread you as being Louise. I'm glad that you've found out why and hope it settles soon. Do you always keep a savlon spray to hand? I often get scratched by my cat who is very playful not vicious and I always spray that on straight away.

At the moment my non-lymphodema arm is covered in the most horrendous insect bites. They're huge, swollen and weeping. Thankfully I only got one on my lymphodema arm which I'm keeping heavily savloned. Do you know what I even got bitten through the sleeve!
So much for avoid insect bites and scratches - do we need to live in bubbles....

Oh oh - I can feel another tantrum coming on....

Hatts
Member

Re: Feeling a bit miserable about lymphoedema :-(

Thanks Nortberte! I am, indeed, enjoying the fact that I am now legitimately not able to wear my sleeve until the infection goes! I saw a young GP who didn't look too convinced. She even started to feel the lymph nodes in my armpit until I pointed out that I didn't have any! Anyway, managed to convince her to give me the antibiotics which is all that matters.

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Re: Feeling a bit miserable about lymphoedema :-(

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Hatts
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Re: Feeling a bit miserable about lymphoedema :-(

Thanks Elinda.

Have been in touch with Lymph nurse via email and she is fairly sure that I have a low level infection. I was scratched by a cat around the time it started so I think she is probably right. Off to the GP in the morning! Feeling happier as two weeks of antibiotics is definitely better than a glove!

elinda45
Member

Re: Feeling a bit miserable about lymphoedema :-(

Hi Louise

It could be that it's got worse because of the heat. You may find as things cool down it will get better.

In the meantime, how about doing self lymph drainage twice a day and the exercises once a day? My lymphodema nurse suggested that for any days I don't wear my sleeve.

I'm sure things will settle even if means wearing a sleeve every day to start with or a bit more than you have been.

I hate lymphodema too. In fact feel like I want to stamp my feet and have a temper tantrum about it sometimes and say 'it's not fair' - which it isn't.

take care, elinda x

Hatts
Member

Re: Feeling a bit miserable about lymphoedema :-(

Thanks Norberte - your post made me laugh! It is definitely a bad part of the 'journey'!

I finally contacted my lymph nurse, only to find that she is away until 4th September!

Thanks for the info Louise.

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Louise_BCC
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Re: Feeling a bit miserable about lymphoedema :-(

Hi Hatts

I thought you might be interested in a couple of our publications on the subject of lymphoedema. I've given the links below to our factsheets:

Reducing the risk of lymphoedema:

http://www.breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/...

Living with lymphoedema after breast cancer:

http://www.breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/...

These can be either ordered or downloaded from the site.

I hope you find them a useful read.

Best wishes

Louise
Facilitator

Hatts
Member

Feeling a bit miserable about lymphoedema :-(

I've had lymphoedema for about 3 years now. It's been really mild. I started off wearning my sleeve religiously but, for the last year, I haven't warn it because it didn't seem to be making any difference and I never had any discomfort. Also, I hate wearing it, if I am honest.

But, over the last few weeks I have had swelling in my hand, which is uncomfortable. It aches and is stiff. I put my sleeve back on (up to the knuckles sleeve) and my hand swelled up even more.

I'm feeling pretty miserable about it as it is now causing me problems and the only way seems to be down. I have emailed my lymph nurse to make an appointment but know that I will just be told off for not wearing my sleeve and exercising. I also know that she will suggest a glove and I really don't want to have to wear a sleeve and a glove 😞 I hate having lymphoedema.