is everyone else fed up with not being able to wear wh... - LSN
is everyone else fed up with not being able to wear what they want because of their condition?
yes, yes and yes again! But there are stylish clothes out there for all shapes and sizes; many peoople's lymphoedema is mild and they can still wear the skinny jean uniform. Other's are not so lucky and lots of clothes don't sit well over the fabrics the manufacturers use today. However, it does help if we keep our weight within a healthy range though; not only is it better for the lymhoedema but easier to find decent clothes. There are days when I use it as an excuse and eat the wrong foods; but i try to rise above those feelings of low self-esteem. NNE
yes i have lymphoedema in one leg so all i can wear baggy jogging bottoms and shoes with extra straps on them.I make excusses not to go to parties or social gatherings. i feel like a social outcast.
I'm just 27 so yes I completely understand it really affects me, especially when going out with friends, high heels, fashionable clothes and summertime! I used to comfort eat and almost give up on myself but have decided to fight my bad habits and am now healthy eating and exercising and plan on losing a stone this year. I think this will really help. Its hard though, very hard! I live in my garment tights with black leggings. I find coloured or skinny jeans shows the difference in leg size too much. I constantly wish things could be different every time I get dressed! Hoping the weight loss will help. xx
I sympathies with you completely! I don't feel I can dress up anymore and I have lost my confidence.
my 18 year old daughter had bit of a melt down on holiday a couple of years ago, hot climate, frustrated about things! We resolved to find an eating plan that suited her, which we did,& just loosing 1/2 stone made enormous difference. Also did some bandaging at the same time. Got her leg measurements down, (clinic really impressed, she had lost the equivalent of 1& 1/2 liters of fluid from her legs, one mostly) now with smaller stockings & sometimes bandaging she seems happier with her shape. She's very stylish & also likes to wear various leggings, she gets them in fabulous patterns & colours. I don't think people notice the difference in the size of her legs, although it is still significant. She' had it since she was a baby, & people seldom seem to notice. She went through school without most kids ever commenting. Hope this helps, I know she has had some very dark days & seems so much happier at the moment. Good luck X
The only way I can find shoes wide and deep enough is to order from online companies. This is most unsatisfactory as you do need to try shoes on. This would entail an expensive trip out of London by rail and probably a night in a hotel, and then have to spend a lot of money on several pairs - shoes, slippers, weather boots. I have been unable to find a suitable outlet in or near central London. Does anyone know of one? I am old and semi-disabled with an arthritic back and hip. I have found the shoe company very unhelpful when I asked them about nearby cheap hotels or bedsits. They have never bothered to reply. The lymp. is exacerbated by BP medication's side effects which causes more swelling.
Hi there, I may be in the minority and very lucky but my GP referred me to the Orthotic department at my local hospital. They have measured me feet (only have lymphoedema in one leg and foot) and made 2 pairs of shoes to fit. It did take quite a few fittings and them being sent backwards and forwards to get them right but we got there in the end. They then do a repair service as well. They are not very stylish but they fit and keep my feet dry. It may be worth asking if this service is available in your area. Good luck
Yes indeed!! got my compression stocking in Nov, so both legs look the same with black leggings on, my foot is ok, dread to think of the summer, have left my stocking off now and again for a day here and there, this will be my first summer with lymphedema, missed my winter holiday in the sun because of this wretched condition due to endometrial cancer op three years ago, so totally relate to what you are saying, big hugs to you, take care xx
totally fed up with out being able to wear what i want this is why i find it easier not to go out at all sad i know but thats the honest truth
So sorry to hear that you feel it is easier not to go out. Fortunately my lymphoedema is slight in my right arm but I do have problems finding tops with sleeves which are wide enough to go over my compression sleeve. If I am wearing short sleeves out at night, I do tend to take off my sleeve but not during the day. Please do still try and go out as that, alone, will make you feel better. Just forget about what other people think - I'm sure your friends would prefer you to be out with them than not. I find everyone is sympathetic.
Hi Chissie2, I also have arm lymphoedema. Mine is in my left arm. I can't wear a watch or a wedding ring on the correct arm. I LOVE tops with long sleeves because they hide my swollen arm (i too take my sleeve off on a night out), but i can't get my hand into them - esp the really pretty ones with beads on the wristband.
I COMPLETELY agree with your advice to get out and not sit in feeling alone. Their friends will DEFINITELY want them there.
At my Christmas night out with the girls, i wore a sleeveless dress and was very self conscious about my swollen arm and hand. HOWEVER the sight of a woman dancing and enjoying herself seems to be very attractive to men - FOUR men chatted me up! SO PLEEEEASE my advice to everyone is go out and enjoy yourself. chances are no one will notice but you - and if they do - i dont think they will mind x
i agree totally, I wear below knee compression stockings so I never wear a skirt or dress anymore, im not that tall so long things don't do me any justice, im fed up in trousers and leggings but I suppose there are people in a far worse situation, shoes a nightmare, get wide ones now my toe nails are going yellow and ridged and I cant bear shoes near them, its so unfair. but im supposed to be working and cant get any help, how can I work with no shoes on most of the time. I was a nurse so cant do that, we all have our gripes but at least we can say here without being judged. im not totally sad, I make the most of what I can do because if I don't it wont happen, I don't think all the people out there realise how we are compromised . good luck all
I am a young 37 year old and I feel like an outcast! I suffer from lymphoedema in my right leg and never wear skirts or anything that shows my legs. I can't get any shoes except ballet pumps or Ugg type boots on! I live in baggy trousers (not good if you short and not a size 12 - which I am not!!!) nice to know others feel the same but life is so unfair!!!
There are some lovely maxi skirts out there which are stylish and practical, also I buy my shoes from dbshoes.co.uk or cosyfeet.co.uk.
Hope this helps
Hi everyone. With my Lymphodema is upper clothes with sleeves I have difficulty in buying - outer coats in particular as there isn't much 'give' in any of the materials used. And these days they seem to use less material than ever (to cut costs I expect) meaning the sleeves are narrower than they used to be. I'm always SO embarrassed when trying to put my coat on again when out in public - as in a restaurant, as I have such a struggle to get into the coat or jacket. My sympathies to everyone with lower body lymphoedema as you have a different set of problems to my own - but at the end of the day a large percentage of us Lymphodema sufferers, upper or lower body, are deeply unhappy and disappointed when it comes to clothes and shoes and gloves.
Hi there, I too struggle with this. I too don't feel I can dress up nicely anymore and I buy most of my clothes online as browing shops IRL is no longer fun. On my blog LymphedemaGirl I share when I find something that works or see something that might be helpful to others and I have a page about shopping for Lymphedema wear as well as a shoeguide. Please stop by and see if any of my tips might be helpful.
I too have probs with shoes I have over 15 pairs of new shoes in my wardrobe.5E wide 6E wide and cannot wear any.
My GP was visiting one day and I showed him 3 pairs which I had just had delivered. He said he wld refer me to orthotics. Months for an appt. eventually the length of my foot was measured Nothing else. Months for a follow up return appt. and a pair of cloth shoes were taken out of a box, it would not go on, would not fasten over my foot they were picked from a catalogue. He dropped them back in the box and said they will have to go back. I was given enormous black overshoes, the kind your given when in plaster cast and I tripped up about 3 times getting back to the car and I nearly had an accident, the shoe was so wide I was treading on the accelarator and the brake at the same time. I took them to my next GP appt and showed them to him. I told him I am going to be confined to the house.No response, nothing. The consultants,lung and heart, will not give the ok for multi layer bandaging and my legs and feet are the biggest they have ever been. I join the ranks of the fed up members on this page. What do I do now??????? scottymeg
Totally fed up over here in australia. Both legs affected and buying anything a nightmare. Shoes are he'll on earth to shop for. Virtually no options if u need wide and deep and long as I have big feet. Sick of wearing mens joggers, I never go to weddings. Etc as only have mens joggers. Have a pr of ugly shoes on order about $500 and so far been waiting 3 months for them and may not fit.very frustrating as a young woman with little money and energy. I end up living like an 80 yr old hermit.
It is hard, especially in summer, when everyone wants to know what I have done to my arm. Belovely do a very nice stretch shrug with flattering sleeves. Chic Compressions do really lovely coloured and patterned compression sleeves. I also have a business, Sleeve Stars, selling Arm Candy coloured covers for compression sleeves. All things that help a bit. I noticed also on QVC that Kim and Co does tops with 'Angel' sleeves which looked a good possibility.
Yes, it is a huge pain and can be very depressing. I find wearing stretch cotton trousers fit over my swelling. Definitely try to maintain the damage that already exists and eat less, exercise when I feel able to. All I keep thinking is that you can't let it beat you and rule your life, you can have control over the swelling. Do the things the clinic tells you, keep healthy, remember those less fortunate that you.
Hi, there is a company that i have purchased boots through and they also do shoes. Not sure they will work for those with more severe swelling in the foot though; but it may be worth looking at the website. duoboots.com
NNE
Hi all my lovely correspondents. I wish I could wear sleeveless dresses, vest tops etc and occasionally I shed my armsleeve and glove on nights out at home and on holiday but need to take care as I can't go long without arm getting uncomfortable. I bought a range of nice wee M&S cardis/shrugs over 3 summers so now have black, white, lilac and blue versions that go ok with most colours that I wear and cover my upper arms! Good luck with finding clothes and shoes and gloves that have enough room in them and with keeping weight within a healthy range.
In response to lots of people being fed up no being able to wear what they want to ......I have always been very interested in fashion and beauty long before i had lymphoedema and for a while now have been thinking of starting a fb page with hints and tips for everyone to share....... anyone interested?
Hi - there is a fb site "Lymphoedema Fashion"
I liked the remark about an 80 year old hermit. I think I fit that description. I still get out a bit but what I will do when my huge old short boots and sandals wear out, I don't know as the shoe problem is the same for all the big footers. It seems there is a huge demand for a proper foot service and the NHS should do something about it. I shall certainly mention everything to my GP. I do manage to keep cheerful and thank goodness have a 75 year old husband who does bits and pieces of shopping. I have other food delivered as it would be impossible otherwise. Having to be in so much sends up the heating bills, and I do a lot of my own cooking.
New page up and running ladies its called lymphoedema with mags its on fb and i look forward to hearing all your tips and hints
There are 2 good fb sites already - both started through UK people. One is "Lymphoedema fashion" and the other is "Lymphoedema is part of who I am".
Ok i will take your negative comments but here was i thinking that we could all do with a kind of upbeat site rather than a place to moan i dont know about anyone else but this site is not always cheery and its not the first time ive switched off feeling down after hearing peoples woes i know what we all have is miserable for us but we cant let it ruin our lives
Sorry grannymags - I am not meaning to be negative. I competently agree about having upbeat sites - I am just trying to say that 2 fb sites exist and they are both upbeat, positive & helpful("Lymphoedema Fashion" and Lymphoedema is part of who I am"). There may be more but too many just makes for dilution of info and sharing (in my view)
i CAN ONLY WEAR ONE SORT SHOES from Cossey feet nothing else ugh so infuriating so limiting.
Yes, it's heartbreaking even though I am in the 11th year of remission from breast cancer and grateful to be alive my Lymphoedema makes life hard. I did not have reconstruction so high necks and kimono sleeves are the only way to dress for me .My swelling is very very bad as I have Lipoedema too so no treatments work due to the fatty nature of my swelling. I am deemed appropriate for liposuction by Proff M but I also have swelling on my face and in my leg from falling which is what happens with my dual diagnosis. Another F B page for us would be welcome by me. Last winter I had to buy a cape as none of my previous buys would accommodate the increment in swelling from the year before so I have a lot of redundant clothes and find the whole thing hard and quite expensive too.
I dont let it stop doing thing but make does stop me which is a shame! But I wear trousers and that is grand and I love to have a good laaugh even though my shoes are he ugliest things I have ever seen and there is no alternative. xgins
Gosh - yes sometimes this creates a problem. I wear predominantly trousers now but even get fed up of this. I wear compression socks too. I have started buying maxi dresses as you do need something different at times for functions. I don't like the appearance of my legs when I look in the mirror.
Footwear has been an issue for me. I wear the 3-way opening shoes which I find comfortable as this can be adjusted. Boring as there is no fashion change but it works, and have a pair of men's trainers (doesn't matter these days). 
I found a good shop in Marlow called Jacu - they do cool, unstructured clothing in larger sizes - they also have a shop in Brighton and somewhere like Weybridge I think.
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