Lymphoedema Fashion

Would you like to share your tips on dressing/fashion for lymphoedema? I am 40 and have lymphoedema of my right arm, breast, trunk and both thighs following TUG flap reconstruction. I spend a lot of time searching for clothes, lingerie and other useful items to help me live better with lymphoedema, and thought there may be others who are doing the same. It’s hard enough most of the year, but this heatwave has made it much more difficult to dress for (and made my swelling worse…). I’m not into big floaty kaftans style wise (thanks Vita magazine!) and being a size 12-14 hourglass shape need some definition, not a shapeless tent. I find the combination of needing to accommodate all of my areas of lymphoedema, with the higher-cut soft cupped bras, and wearing a scarf to protect my irradiated skin from the sun quite a challenge. I’ve wasted a lot of money trying things that don’t quite work.

Some things which work for me:
I’ve just tried a lymphediva sleeve and gauntlet from chic compressions, and I’m amazed how much cooler (in both meanings of the word) it is than my NHS Jobst bella-lite sleeve. I’m about to order 3 more, and think I might feel brave enough to bare my arm in these. They are expensive, but they have some in a sale at the moment. I may reserve them for summer and ‘best’.
Bella-lite now comes in black (sleeve and the small handpiece/gauntlet) on the NHS. Hooray! I believe sigvaris also do a black one.
Seasalt have some useful clothes for lymphoedema- I find their Larissa shirts great, as the crinkle disguises the difference well, and means no ironing; they have been very cool to wear in this heat. Probably wouldn’t work for more severe lymphoedema though. They sell long sleeved t-shirts all year. In the autumn/winter they do some patterned ones with turn back contrast cuffs- I can wear these a bit longer to cover my sleeve completely. Seasalt also do some maxi skirts in a lightweight bamboo jersey which hide my swollen legs nicely.
I’ve just got a couple of long sleeved lightweight jersey shrugs by Linea from House of Fraser online. They are in the sale. They mean I can now use some of my pre-cancer camisole’s and sleeveless tops. Again, they would probably only work for milder arm swelling.

Some other useful non clothes items which have made my life easier:
Healthy back bags- Can be worn cross wise.
Jar key from Lakeland- Releases pressure from jars, making them easier to open, only about £3. I then use a piece of Dycem reel to finish the job.
Bionic’s elbow length gardening gloves.
I make my own insect repellent spray, factor 30 suncream and mositruisers as I’m very fussy about what goes on my skin now.
I’ve just had a load of free kit for work via the Access to Work Scheme- You can self refer, just google them to get the phone number for your area. It’s a government scheme to help people with disabilities in the workplace. The kit is free if your employer has under 49 employees, and they part pay if they are larger (unless you’ve only been there 6 weeks I believe). I had a very useful OT assessment, and have now been given special pens, a writing slope, an easier keyboard, phone headset, a special chair with armrests, and some more specialised equipement for my particualr job. It has made my life a lot easier (though I do have problems other than lymphoedema including peripheral neuropathy and restricted chest/should and hip movement).

Biggest Problem area I haven’t sorted:
I can’t find a suitable bra. I need a non wired, moulded/padded one with higher sides, as I need to disguise some minor asymmetry postreconstruction and didn’t get on with a partial prosthesis. I’m using Royce’s Chloe, but my lymphoedema nurse wants me to find one with higher sides. I’m a DD, which limits the choices further, as many styles stop at a C or D. I’ve just got an Under Armour sports bra via Amazon which is fine, but the neck line is too high for most of my tops. I’m awaiting delivery of a Moving Comfort Luna sports bra from Less Bounce, but found their cup too small in my usual size- I’ve ordered one a band size up in the hope that the cup will then fit, but I’m not very hopeful, as the back will probably be too big. So any other bra suggestions would be gratefully received please.
Life post breast cancer is very complicated isn’t it?!!

Bringing this to the top for Erin135

Jo, Moderator

Hi Erin

Great thread and a passion of mine. I agree and commented recently that I didn’t think the Vita suggestions were that great and quite limited.

I like the some of the shirts from East. They are expensive but they do last well. Some are only 3/4 length sleeve but others full length. They are not boring shirts or masculine shirts - very hard to find decent shirts that are pretty too.
I like floaty cardigans in the summer - I’ve got a white one from M&S and some other ones I bought in Brighton that are made of cotton in a very loose weave so not hot at all.
Bras - I know exactly what you mean about the high sides. I’d thoroughly recommend Contura Belle’s silima Lola which comes in black and white. It was a suggestion of my BCN and is by far the most comfortable I’ve found - comes up high under the arm but doesn’t dig in. they don’t do DD but they do a D cup and an E cup so hopefully one of those will fit. It isn’t padded though.
Elinda x

Hi Erin I know you posted this a while back. I’m new to all this. I had trouble getting the right bra. I ended up sending for two from simply be. I am a big girl 38f . The first one I got is front fastening, with 4 hooks and eyes, wide side panels and a sports type back. The second is back fastening , thick padded straps and both are wireless and very comfy.
You may be already sorted but thought it may help
Take care chris x

Hi I have lymphodema in my right arm and have had it for the past 10 years ,where oh where can I buy a coat that I will be able to get my arm through 

My toughest problem is finding a coat or jacket that I can get my arm into I have spent most of this afternoon at Bluewater and not a thing could I buy


Keep up the amazing work, bevlang! Your talent and resourcefulness continue to inspire us all.

Wow, it’s amazing to see your post from five years ago. Your resourcefulness and creativity in dealing with lymphoedema truly stood the test of time. It’s inspiring to know that you took matters into your own hands and created a coat with bigger sleeves that fit your arm perfectly while still maintaining a normal body size.
Your talent in sewing and your ability to customize clothing is truly impressive. I’m sure many people would have found your story and solution incredibly helpful back when you first shared it.
If you’re still pursuing your sewing passion check this article about become a follower in fashion. I think you might find it interesting.