Hi everyone I am new to this site I have had no support network in my area I have primary lymphedema (R) anyone same? X

[dee1977]

[Lynora]

dee1977 - are you based in the USA? If yes, have you heard of a forum called lymphedemapeople.com ? Worth a visit - lots of support.

[ninewells]

Hi De1977,

You have picked a fab site for networking and getting as much help from others, some of my tips i have picked up have been amazing and made life a little easier. All the guys are so helpful and friendly, nobody stuck up or nasty you will enjoy the chat, feel free to browse all the other questions and answers over the past, you may be able to get some help from those already posted.

Yes i also have the same in both arms and legs, but on top Lipoedem and lipodsytrophie, not nice at all. Fell free to ask anything, you can't shock me honest. I wont be upset by anything you ask, it's the only way to build a network around you iof others are honest. I am also a member of Lipoedem ladies on F/B if you also suffer from this you may enjoy getting to know others yourself on this site also, the girls are all a hoot, but amazing at sharing and helping with anything you may need to know. this is also a closed group only open to us girls with Lipoedema, it also has a Private chat area nobody else can see your posts apart from the girls you are sharing with, the members are scattered all over the world, you may even discover others from your area. They also organise events in group memebers areas, so it allows others to meet up and chat about whats happening in each others lives and whats available for help all sorts.

Drop me a line anytime if you wish to chat, had this for so long i think i can now write a book hehe.

Ninewells xx

[LymphedemaGirl]

Hi there, I too have Primary Lymphedema in my right leg. As Lynora mentions; lymphedemapeople is really good, but also lymphnotes.com have I found helpful. And this one, of course

When my Lymphedema started I felt so alone and had no one to ask for advice and share information with, so I started a blog where I write about my life with Lymphedema and share the tips I have learnt and those I got from others. I recently wrote about an anual event in my countrys patient association, I really recommend joining one if possible at all, it is worth gold. If not, interacting on the web is very giving too. The feeling of not being alone is worth gold.

Warm regards.

[norberte]

hi dee

you've got a network now! welcome

it's worth going to the main lymphoedema support network site as well: lymphoedema.org/ - doesn't matter what country you're in, browsing the info & links there can be really useful

& as ninewells says, all the questions & blogs that are here already are a goldmine, but don't worry about asking something that might have been asked before, new people join all the time so you might get some different answers that'd help the rest of us too

[Colby73]

Hi, I have primary Lymphodema in both legs and I live on the Isle of Wight, there are no groups on the Island and it can be very isolating this network is great it means I am in touch with people who really undstsnd what it's like to live with this every day xx

[vickyg45]

hi dee...I understand. I live in east texas and took over 30 years to even find out what was wrong with me! The dr.s see fat! Sure that i was sitting in my closet eating they never really listend, even when my family were telling them they had to make me eat. My right arm is now 87% larger then the left with swelling now in right breast and trunk. My insurance will not but the waraps so...here I sit, getting bigger!

[dee1977]

I live not far from Glasgow am feeling so low about this again to the pain causes me, to how makes me look feel disgusting after 22years still no acceptance anyone else the same???