Living with primary lymphoedema (left leg)

Hi All,

I have been a member of the LSN for few years now but this is the first time I have been on this forum. I guess I have now finally accepted my lymphoedema I have primary lymphoedema in my left leg mostly affecting above my knee and all the way up to the top of my thigh. I feel I am ready to speak with others and if I can maybe help others and give advice. I was diagnosed when I was about 23 and I am now 30 so lived quite a few years with it now at first it was probably the most hardest thing I have ever had to deal with but now I guess in a way I have just adapted to it and my stockings are now a part of me they are like apart of my underwear!

All ladies and young girls out there I really want to be able to help and give out advice when it comes to fashion and living with lymphoedema because don't let this beat you! You really can wear what you want and its just about confidence and the fashion now is so versatile and anything go's!

I have always loved clothes especially vintage and I have found through the years I started to love vintage as I realised most of the clothes were long, and actually very comfortable. I know vintage clothing isn't for everyone but all high street stores do some lovely stuff!

My biggest problem in the past was when SUMMER comes along OH KNOW WHAT WILL I DO!! My biggest problem was the fact even if I wore a long skirt people will still see this horrible beige stocking!! Not anymore as some great person who I would love to give a big hug too has invented so many styles of sandals now!! So for the past few summers I have felt so much more confident going out!

I am happy I have joined this forum today and it will be lovely to hear people's stories, advice and how they cope living with lymphoedema!

xx

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  • Look for pages/friends on Facebook too i find that a more daily responce to on here though i check both daily! ; )

    Im the same but have it in right leg, v bad from knee down

  • It is good to have the reassurance of others who have coped with the various problems. Those first weeks of wearing compression stockings (socks?) brought severe pain and irritation that were made bearable by hearing, from you who knew, that it would pass - and learning ways to relieve the symptoms. So welcome to the gang, en30. I read more than I contribute, but what I learn is shared outside this forum by those who 'don't join that sort of group'! So - anyone got any suggestions on where to buy nice shoes, preferably in the Manchester area. I have ordered several pairs online but they are usually too 'shallow' - it's always the fastenings that I have trouble with - they don't meet. Even when described as 5x width fitting. I know there is a good and helpful shop in Grimsby but it's a long way to go for personal service, surely in a city there must be somewhere?

  • I am 25 and had my Lymphedema since I was 13 - I too really struggle with fashion! I thank the lord for maxi skirts, dresses, and wide leg trousers!!!!

  • Any fashion advice regarding shoes would be greatly received, especially sandals! I initially thought it was a bit shallow of me to worry about what I was wearing but I now think it's so important, if I feel confident in what I'm wearing it changes my outlook on having lymphoedema completely, I almost don't think about it at all. The fact that anything goes these days is a massive help I think.

    Thank you for your post,

    Vicky

  • There is a Lymphoedema Fashion facebook page which has some useful fashion ideas posted from time to time. Have you tried Evans for shoes. (the chain for larger ladies)? I discovered their shoes a few years ago and what a difference it has made for sandals/mules (I am primary - both legs/ feet since I was 12 - in one leg and aged 30 in the other). Because my footwear options have increased then my clothing options have increased - again particularly in the summer. Some of Evans shoes are not the quality I would wear but others are just brilliant - and you need a reasonable size shop/branch. When I discovered them I bought 4 pairs of mules, open toe and closed toes and black and brown. Also have black and brown roman type sandals - I was like a child in a sweet shop! I have also found Duo Boots excellent for boots. I go to their Covent Garden store (they are mainly online) and got boots sorted they do a sort of made to measure service (on line explains it best). My other realisation over the years was to buy mens trainers/trekking shoes - and forget trying to get into womens ones.

  • Forgot to say that although both feet/lower legs are swollen one is bigger than the other but I usually put up with the fact that one shoe/sandal will be a bit big - and I seem to have learnt to deal with walking like that over the years. That was where the Roman sandals were really good as I do one ankle up much more than the other - although I did have to get a hole punched into the ankle strap on one of the pairs I bought

  • My legs have gotten worse left one more and wear only knee highs stockings as the compression hurts to the touch. I have terrible back problems so it is impossible to massage my legs..have been living on Advil for pain and go occasionally to an acupuncturist which helps..Dr's are very little help in Miami but will start on physical therapy next week

  • Hi there, even after more than four years I still struggle with fashion - I feel that my options are very limited and I feel sad that I can't show my legs and wear dressy shoes. My compression stockings has pads sewn into the sides of them to maintain shape on the foot and the pads take up a lot of room. Anyway, to other who struggle too I have a page on my blog with a few tips about dressing with Lymphedema: lymphedemagirl.blogspot.dk/...

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