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 :frowning: I hate having 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:


Living with lymphoedema after breast cancer:


These can be either ordered or downloaded from the site.

I hope you find them a useful read.

Best wishes


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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.

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

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!

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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.

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…

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…!

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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

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.

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.

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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

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

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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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