Newbie from Aus

[Ellie]

Hi all
My name is Ellie, I'm new to the forum but not to lymphoedema!
I'm 21 and from Australia and have lymphoedema in my legs.
Wondering if there are a few people here from Australia aswell?
Take care!

[patoco]

Hi Ellie

Super welcome to our family

We do have members from Australia and hopefully as they drop by and see this they will let you know.

In the meantime, again, welcome and I look forward to getting to know you. Please don't hesitate to post any questions, concerns or thoughts.

All the best

Pat

[burnedoutmom]

Hi.

I am new to this site. I have just been diagnosed with secondary lymphedemia of the leg secondary to complications from a total knee replacement surgery. i have had a swollen leg for over 5 years and no doctor has been able to tell me why my leg would swell and have pain. recently I had a "rash" and when I went to the dermatologist, I was told that it was a mild case of cellulitis resulting from lymphedemia due to damaged lymph glands. I'm happy to know the cause, but I have a lot of questions, with these being the most pressing:

1. I need to lose weight and exercise. Is there any special suggestions on what exercises to do with this problem in the leg?
Is there a special diet to use?
2. Can I apply sun tan lotion to the leg or do you keep it wrapped when out in the summer sun?
3. Is there a secret of how to get the compression stockings on??? The pair I have is sooo tight, I can't even get it on the opposite foot.

I hope to learn a lot here and I would like to be able to share anything that I find as well.

Jackie

[patoco]

Hi Ya Jackie

Super welcome to the family here - look forward to getting to know you and in your participation too

Hopefully, we can provide some moral support and information that can help.

There is no real "special" diet for lymphedema. You may see on the internet that quite a number of people have these
"miracle" diets that help lymphedema, but there simply is no clinical evidence to support any of their claims.

What we do need to do is to eat the type of healthy diet that contributes to over-all good health. Proper nutrition and diet is important to everyone.

What you can do is to work with your doctor and lymphedema therapist to design a good diet for you.

Weight control is essential in helping to manage the lymphedema and infact morbid obesity is the second leading cause of secondary lymphedema. I'm a big fan of the usual low-fat, good protein balanced type of diet - lots of veggies and fruits.

No "junk"food like chips, cookies, cakes etc. I'm a real chipaholic and can do some serious damage to a bag of potato chips.
What I found out was that actually after a bit when I stopped eating them or buying them, I stopped wanting them.

Also, I have a real sweet tooth too. What I do is keep fresh fruit on hand and when I get a craving for something sweet, I just grab some fruit and chow down. Now the key for me wasn't just in going out and getting a lot of fruit. I only buy fruit that I really really like. That way, I know that I will eat them.

Same thing for veggies. I buy my most favorite types. If you think about it, it makes sense to buy the fruits and veggies you most like. To buy them just for the sake of eating some never really did the trick for me.

Also, now days there are sooooo many low-fat, sugar-free snacks available at the store that should help too.

Watch the fat in everything you eat. Try staying away from the higher fat meats. I don't know if you like poultry or fish, but they are great protein rich meats with much much less fat then beef.

BTW, I would stay away from soda drinks - even the diet ones. It's been interesting to see the studies going on regarding the diet ones. There actually seems to be mounting evidence that they actually cause hunger and contribute to being over-weight. There are all kinds of tea available now and I also drink lots of fruit juices. BTW, every time I turn around I hear of a therapist telling patients "don't drink coffee." There simply is no clinical evidence to support this or to support the claim that lymphers should not drink it. I don't see any problem in someone having a cup or two.

As I said too, the encouraging thing about eliminating junk food/fast food etc from you diet is that after a while, you'll find yourself not craving them any longer.

Do stay away from these "starvation" diets. They are miserable, usually don't work and are just bad news.

But, do talk this over with your medical providers some that you can put together a diet specifically for you and your needs.

The same thing with exercise. Exercise is essential for over-all health anyway. Plus, one of the two main ways lymph moves through our bodies is through exercise that kind of helps "pump" it along. So, it is essential in helping to managing the lymphedema.

take a look at our page on exercise:

Exercises for Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

At the bottom of the page is a list of links with articles about all kinds of exercise.

I would specifically recommend starting off with low-impact exercise, flexibility and stretch exercises. Stay away from the higher impact ones unless you are cleared by your doc. You don't want to do anything that will cause problems with the knee replacement. Set aside a specific time each day where you can run through the exercises. Start of slow with shorter sessions. As you build up, you can always increase both the time doing exercise and the type/intensity of the exercise.

Also, if you use compression wraps or compression garments, you should have them on when exercising.

Compression stockings are such a hassle getting on. There simply is no way I have found to make it easier. However, I will say that if they are especially difficult, they may be the wrong size. If you were measured for them, I would go back to the person who did the measuring and then the company that you bought them from. They absolutely will need to correct this.

If they are "off-the-shelf" stockings, there isn't much you can do except try getting a slightly larger size. that's the one major problem with these OTS stockings. It seems it is almost impossible to get ones that reall fit the way they are suppose to. Remember too that stockings that don't fit correctly or are too tight can lead to increase swelling and/or even a blood clot. What every you do, you want to avoid this.

Hope this at least gets you started.

BTW, you may find these two pages helpful too:

Leg Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

Cellulitis

http://www.lymphedemapeople.com/thesite ... ulitis.htm

My very best to you

Pat

[kittybet]

Hi

Also new to forum and from Aussie. I live in WA up north- very hot here. Good to "meet " you Kittybet

[Ravenfiree]

Hi Ellie

I'm also from Australia and recently found this site

i know this post was back in feb this year so any news or luck on finding anyone or clinics in Aus?

Alot of doctors are clueless over here and im sure you agree

[patoco]

Hi Ravwenfree

You are so right, most doctors are clueless still when it comes to lymphedema.

I really remain very very puzzled about this as the number of people with LE is literally in the millions. What other medical condition can you think of that so many people have a condition, but it remains in the dark.

We do have some pages for Australia, but really needs to be updated. With my pwn health, it is getting harder and harder to update things, so please bear with me.

Australia does have a number of organizations:

Lymphoedema Organizations Australia

http://www.lymphedemapeople.com/thesite ... tralia.htm

and therapists:

Lymphoedema Therapists Australia

http://www.lymphedemapeople.com/thesite ... tralia.htm

You can go through the lists, just as always if you find someone near you, be sure to phone them first to see if they are still in business.

Pat

[LymphedemaGirl]

Burnedoutmom, about getting the compression stocking on, I use something called an Easy-Slide. It really helps. They sell them in prosthethic shops here, but I buy mine online. I am about to get a new one as the old one is finished and I think this place here has a good price:

http://www.lymphedemaproducts.com/produ ... slide.html

See this video of how to use it:
http://www.youtube.com/watch?v=r30gYWjL ... re=related

What I do is turn the inside of the stocking half way out, use the Easy-Slide to get the stocking on just till over the foot and then pull the rest of the stocking up (the part that is folded over) bit by bit, perhaps 4-5 bits all in all. I think I posted a more acurate description on this forum, but can't seem to find it now.

The little aid that comes with Medi stockings is also allright, but the Easy-Slide is better.

I hope this was helpful.

LymphedemaGirl

[aliciaslocomb]

Hi! I am very new member to this forum (as in 1 day), but love some of your questions.

I was diagnosed with Primary LE 26 or 27 years ago (at this point, who is counting?) when I was in high school. I have worn a compression garmet every day of my life since that point. That includes when I'm at the beach or pool... I just use my old ones that I fold down to let some of my let get sun. (I have LE in my lower right leg.. primarily toes, foot and ankle). Part of that reason is because I've found that my foot is very sun-sensitive, and as I love being near water in the summer, I want to protect my foot at all costs. And if I happen to be on vacation and my compression stocking is getting a little worn through, I will use sun screen on my foot as well.

My advice is also to keep your weight under control as much as possible. I'm in no way as thin or as in shape as I was in high school, but I can tell in both my foot and my jeans when the winter weight needs to get under control.

Watch for paplimoas that might form on your toes. (These are little blistery things that burst and then ooze.) I had a period a few years back where I got two bouts of cellulitis in a year (only second and third time ever), so I sought out a good therapist who taught me the manual massage, and helped me get connected with a jobst dealer who measures me 2-3 times a year for a "toe cap"... think a 1/2 sock with individual toes. Not exactly fashionable, but now I won't go without it because I'm otherwise very uncomfortable (except near water... those suckers run around $150). I also wrap my foot every night, again, not the most exciting sight for my husband, but tough tooties!

Lymphedema sticks the rotten one, but it's managable if you're able/willing to always wear a garmet, and try to find a good therapist who can help you learn how to do the self massage and wrapping. I'm just waiting for the compression garmet idea to become fashionable... so far, no luck!

[Katica21]

Hi there

I am also a newbie from Australia (Melbourne). It was so nice to find this forum and I'm surprised I've never come across it before as have been searching for years for information.

I am a 35 year old female and I have primary lymphoedema, in both legs, predominantly in the left. Was diagnosed about 5 years ago after 10 years of specialist appointments, tests, blood, sweat and tears. I was in a denial for a while after being diagnosed as couldn't understand how it couldn't have been diagnosed earlier if it was that easy!

I wear compression stockings (admittedly, not every day) as really struggle to wear nice clothes for work and socially when feeling so limited with what you can wear to hide the stockings. I have MLD every few weeks by a trained therapist which I find helpful.

I struggle with exercise, keeping the weight down and try and do aqua aerobics classes and pilates weekly. Walking is painful and when I get so frustrated with my lot in life and try and push myself, I last about 30 minutes and then I can't feel my legs.

Looking forward to searching through all the valuable information on this forum.

Kat

[patoco]

Hi Kat

Super welcome to our family here

I'm a primary lympher as well. Mine first appeared right after birth - so I have been "dealing" witth it now for some sixty years.

Even though you struggle with exercise, I am glad to see you still try it. It is a great plus in helping not only to manage the lymphedema, but to stay fit as well.

Don't hesitate for a second to post any question, concern or otherwise.

That's why we are all here

Pat