I've just joined this site and I'm happy I did after l... - LSN

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I've just joined this site and I'm happy I did after looking around. I've got Secondary Lymphoedema in both legs, ankles and feet.

daxx11 profile image
8 Replies

I do wear ( sometimes ) compression stockings but after reading here I'll go back to daily usage but my question is, does anyone else suffer from thin skin ? The skin on both legs are like tissue paper now and all that has to be done to make them bleed is a little gust of wind. The stockings do help as a barrier of sorts but is this common as I've no intention of walking around swathed in protective bandages or shin pads as such.

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daxx11
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8 Replies
queryit profile image
queryit

Hullo

I'm sorry you have had no replies! ESP as you just joined.

Only to say - first : I have knee length activa actilymph. The

material is very smooth. second : if you have made to measure

with or without a zip there are finer fabrics now than there

used to be. My mothers skin got really aggravated by the older

rough fabrics. Lastly if the stockings were prescribed they

should have advised on skin care too as your problem is not

uncommon. There should be a skin cream prescribed for you

on the NHS.

LymphedemaGirl profile image
LymphedemaGirl

Hi there, it is important to take care of your skin when having Lymphedema. The more fragile your skin is, the more prone you are to infection (cellulitis) and trust me, you don't want that! If you want to see what it looks like I have a couple of pictures on my blog from a severe bout last year, but be warned, not pretty.

Anyway, you need to put on a greasy lotion before bedtime to keep your skin strong and healthy. One without perfume and other things that can irritate the skin. Also, I find that taking a spoonful of Udo's Choice oil in my homemade juice sort of greases the skin from the inside.

I hope this was helpful. All the best!

LymphedemaGirl

gavinlwright profile image
gavinlwright

I was given steroid cream ,dermovate, but only told to use this for a short while as this thins the skin. My GP told me this not the dermatologist who carried on prescribing it!

My legs feel better for not using it and for using a moisturiser such as dermol 500 or even a 50/50 cream. I was also advised to wash with an antibacterial wash, this is hibiscrub. I have managed to get all of these on prescription and with a prepaid card it has only cost about £30.00 for 3 months of cover for any prescription.

ninewells profile image
ninewells

Dermol 500 is fab, i get this after each op to help my skin heal also. I have asthma and take steroids most of the time for this, my skin is also very thin but keeping infection at bay is a priority, but keeping the stockings or boots on are aslo very important just take it easy getting them on not to tare the skin.

Sorry it took so long to get answers being new to the site but maybe due to the holiday weekend. Lets hope you don't wait long again. Enjoy making new friends.

Ninewells,

morganite profile image
morganite

hello to you, i wear actilymph knee high stockings, bit of a shame in the summer but i put up with it because its better than swollen legs and ankles, the skin does get thin and dry, part of the care regime is to keep moiturised or if the skin drys and breaks you are at risk of cellulittis in these areas. i have double base cream which soaks in really fast and doesnt leave a white film on your legs, get your gp to prescibe something for you, good luck we are all here.

Hexham profile image
Hexham

Hi Daxx

I use Epaderm cream - recommended by my GP. It's fun wearing wraps through airport security - you gets lots of strange looks from the other passengers. Like you, I resisted wearing any wrap/bandage at first, but then I realized I preferred that to having swollen legs, ankles and feet.

Nice to have you on board. I tried to reply at 6.00 am (I'm an early bird) but the system was unresponsive at the time.

Good luck

Seán

norberte profile image
norberte

hi daxx

i'm an arm & torso lymphie - i think we're generally a bit luckier cos we haven't got quite so much gravity to fight against, but keeping skin in good condition is a constant battle

don't be afraid of going back to your gp & saying 'nope, don't get on with that one, let me try something else' (which is where the prepayment card comes in v handy, altho if your lymphoedema is secondary to cancer you can get free scripts for 5 years at a time if your gp or specialist signs a form)

i've just had some surgery to remove stretched skin on my chest where the lymph got totally out of hand, & i'm in v fetching, v tight nylon from shoulder to hip - came here to ask for ideas about moisturisers & i've lost count of how many i've tried now

but at least i got loads of sensible suggestions from here that i hadn't got from anywhere else so yes, this is a diamond place to have found, welcome aboard

daxx11 profile image
daxx11

thank you, all of you for your help, suggestions and support, i only wish i had found out about you sooner ..... no I don't, i had to run into trouble before i realised that i did not have all the answers myself and that this little problem was not going to go away after all, you know head in the sand and why me. the awful thing for me as it may well be for some of you is that i've got an awful lot wrong with other things that are unrelated but are very deadly all on their own and the one thing i keep pushing to sort out is the one thing that millions of people live with which is back pain :) all of my doctors just laugh ( which is good ) but doesn't help. any way thanks again ... i know i'll be calling in from time to time if only to say hello but for now cheerio. john g

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