Lymphoedema Sleeve nightmare: Hi I'm new here. I have... - LSN

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Lymphoedema Sleeve nightmare


Hi I'm new here. I have arm lymphoedema following breast cancer, paying for private treatment and learnt SLD, getting plenty of exercise but need a sleeve now. Going to NHS clinic who take my arm measurements and send for a sleeve. I've tried 5 different ones in 5 months but all of them are making my arm sore, creased and are too tight. Beginning to feel like a freak so took photos of my arm after wearing latest sleeve for just 2 hours to show them. They seem reluctant to order made to measure (too costly I suppose). Has anybody else hit this stumbling block?

5 Replies

You can ask your private therapist to measure you for a 'made to measure' garment - it can be ordered via your GP, as most are available on prescription.

Lymparmy in reply to Lynora

Thanks I will. NHS have been treating me for breast lymphoedema and that's when they said I needed a sleeve. They don't treat limbs, only trunk, head and neck now as their area has increased in size. I only hope the doctor will agree to prescribe because I wonder if it would come from her budget? Owe my life to the NHS but it seems to be in such a mess.

Lynora in reply to Lymparmy

I have sent a private message

HI Yes I was put in xs off the shelf round knit garments for 7 years as I didn't know I should be in made to measure flat knit. My leg went from 4% bigger to 28% bigger than my good leg . I now have no functioning main lymphatic channels in my left leg as its broken down. I paid privately to be measured and have lymphatic drainage. I get the measurements and codes and then my Gp write a prescription which I post to a company who order the garments from Germany. It takes about 10 days to arrive.

It also might be worth asking if you could use a barrier cream called cavilon on the creases in your arms to prevent sore patches.

Good luck.

Hi Lymparmy - I'd go back to the private therapist and see if you can get a flat-knit sleeve - you can get off-the-shelf flat-knit - and if that doesn't work, you can get custom. If you have the funds, go for it. Once you know what works for you, then you can go back to NHS for the re-orders in the future. You want something that is comfortable and easy to put on. Sounds like they are mucking you around and this is all taking too long. Do you know how to bandage your arm? Keep an eye on your measurements and watch that they are not going up (like with Niktcx).

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