Just wondering if anyone knows what happens if you refuse a sleeve and all the c**p that goes with lymphoedema and just carry on with normal life. Does the arm just get bigger? Does it get painful?
Any thoughts please?
obviously no one is as stupid as i am.
Fair play.
Hi Hatty,
Sorry you’ve not had any replies as yet, hopefully someone will be along later today for you. The helpline is open if you would like to give them a ring and have a chat? Calls are free, 0808 800 6000.
Take care,
Jo, Facilitator
hi Hatty
You probably need to wait a bit longer for replies, a lot of women who respond will be working, going to hospital, doing other things etc so don’t get disheartened if you don’t get responses immediately.
In answer to your question, who knows? The big risk will be that it worsens and then it would need more drastic intervention such as a higher strength compression sleeve etc. Yes, it can get painful even with mild lymphodema. If you think about it, that’s becuase there is more fluid there and gives that feeling of tightness and pressure. I would also think it would make you much more prone to infection.
My understanding is that you want to get it under control when it’s not too bad as it’s harder once it gets worse. I’m not an expert though and it would be worth speaking to someone on the helpline or your lymphodema nurse. Elinda x
That’s pretty much exactly what they told me too, I’m not inclined to experiment and let it deteriorate with no guarantee I can improve it again… I’m doing all the right things and it still got worse 
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I was told that as it is a protein rich fluid it will start to cause skin changes as well as swelling, so that is also why they like to treat it and keep it as minimal as possible. And with skin changes comes more risk of infection and therefore worsening lymphoedema.
Dryness is the first skin change - then discolouration and cracking if not treated and not moisturised.
It can get painful and movement can get restricted if it gets bigger and bigger as well.
I think I know where you are coming from though - mine is mild and manageable without doing anything - and I wonder if it is worth it?? But after a few days of lifting the kids alone my arm does start to swell more so I know that I do need to do something to stop things getting bad.
I took my kids to a soft play centre today though and felt like a right plonker wearing my sleeve (not to mention the super short ‘just growing back’ hair). But I did end up chasing a 15 mth old up a huge sift play structure and carrying her off screaming - and that would have done my arm no good at all - I hoe the sleeve is stopping damage caused by doing stuff like this!!
I am hoping kinesio tape may help me avoid the sleeve and look more like I just have a sports injury (ha! I am rubbish at sports!!).
thank you all for your lengthy replies it would appear there is no ignoring it then. I have a private massage booked for my arm tomorrow so we shall see how it goes. Lymphodema nurse 8th september.
Hi
I dont think i ignore mine, but I try to keep the faff to a minimum. I moisturise daily, do some mld and exercise every week. I wear my sleeve when I am driving and doing any heavy lifting, or if I am just having an active day ( also wore it on holiday as protection against bites- took two weeks anti bs with me in case of infection). Other than that i dont do much. I notice my hand goes up and down,but I cant honestly see that there is an obvious pattern to this. I dont have any aching and my lympho has stayed the same since I was dx with it nearly a year ago. I dont know if I am not doing enough, but I have my next app next weel so we will see.
debx