Im with Lymphedema since I was young

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Im with Lymphedema since I was young

Postby Monica » Fri Aug 27, 2010 10:52 pm

Hi there

Its good to find this forum, someones that could understand me :lol: .

Its all started when I was with 7 years old or less, my foot got swollen when I was travelling long distances.
Year after year, very slowly its appeared. But only in long distances and in very hot weather.

I learned to hide my feet when they're hyper swelling, to escape the questions of people of what happened.
I did several tests, cardiac (normal), circulatory (normal) and Varis (also normal). I'm overweight, but I've seen people much fatter than me with skinny ankles.

Till 37 years old I thought that I was the only person in the world that surfer with this trouble. There I found one woman, I just looked her lags and I recognized the ankles. She told me that she had a good and a bad news for me: The good one was that it was just an visual effect and the bad one was that it had no cure.

Some year after this I was travelling across the Europe by buss, and my legs were so swollen that I began to feel difficulty to feel my foot fingers. And I went all travel with they up, but without results. After this I went to a doctor that said to me to put my lags up when I was sleeps. I did it for years but with no results. When I put them down they swollen automaticly.

In other travel I discovered by myself that if I compress my feet I kept the dimensional control of it. Then I always use a shoe tight on them, during the travels.

I leave in Brazil and I speak portuguese, dont have that option in this forum :P .

Well when the weather is cold I, sometimes, forgot that I have this lymphedema, I feel normal, I can see my ankles bone :) , but when the hot weather comes my whole body becomes swollen :oops: , starting of course with legs, taking my hands, like today, I could feel till my face swollen. (with just one hot day, and we are in the end of winter time, the hot time just begin) Well, I fell that its worsening. Im with 44 years old now and the only thing that can hold the leg swelling are those terrible socks ( I over hot with them) and the cold weather. I really have no idea what I could do better then this. I gave up to put my lags up, because its doesnt work with me. The swollen just leaves my legs and goes to my hands and face. I joked with my friends that I have a drain problem, that my lymph climb down and it doesn't know how to climb up.

Today I really thought to take a diuretic. And I started to search in internet if it was good for lymphedema trouble (all the people who knows me suggest this) and, takes God, I found this forum that told me for don't do this.

Any idea, or we have to let it go on and become conformed with this swelling situation?
Ill translate all your forum, someday, I have a little difficulty to understand some terms but Ill get it.

Its good to know you. I hope that we can exchange ideas and experiences.
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Re: Im with Lymphedema since I was young

Postby LymphedemaGirl » Sun Aug 29, 2010 7:12 am

It is true what you have heard, do not take dieuretics!
Yes, the compression stocking is terrible, but it does help.

Are you recieving MLD (manual lymphatic drainage) from a therapist? If not, perhaps you should look into it. I had a sample last week and is having my first full session MLD next week, feeling quite excited about that.
You can learn how to do MLD on yourself.

When my leg feels extra built up it sometimes helps to lie on my bed with my legs up the wall while exercising the ankles and/or deep breathing.
You can also try jumping on a mini trampoline, I feel that it helps a little bit.

I hope this was helpful.
Last edited by LymphedemaGirl on Tue Sep 21, 2010 7:39 am, edited 1 time in total.
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Re: Im with Lymphedema since I was young

Postby patoco » Sun Aug 29, 2010 4:03 pm

Hi Monica and Lymphedemagirl :)

Super welcome to our family here and I do hope we can offer helpful information and encouragement. Special thanks too, to lymphedemagirl for her reply. Monica, she is absolutely right in not taking diuretics. Eventually, they will cause the lymphedema to worsen.

Also, manual lymphatic drainage (MLD) is the gold standard for lymphedema treatment and management. I'm not sure where exactly you live in Brazil (it's a huge country :) ), but there should be lymphedema therapists available. If you have any difficulty in finding one, let me know where you live and I'll be more then happy to help find one. You would be amazed at the results I've seen in lymphedema with this treatment.

One other thing is that some lymphers actually raise the foot of their bed so that their feet are slightly elevated when they sleep at night.

I'm glad to hear you had those other tests to make sure it wasn't cardiac or circulatory> Many lymphedema patients get frustrated at their doctors when they want to do them. But, they really are important, so kudos for having them.

You may also want to read through our page on leg lymphedema. It's quit comprehensive and has info not only about leg lymphedema, but possible complications, exercises, self care etc.

Leg Lymphedema

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

Also, be sure to check out our "Wiki" section as there are literally hundreds of pages of info about everything imaginable on our condition.

Again, welcome and please feel completely free to post any questions or concerns. Remember, your not alone and we are all here for each other.

My best to you :!: :!:

Pat
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Re: Im with Lymphedema since I was young

Postby blubrdfrend » Sun Aug 29, 2010 8:22 pm

Welcome Monica, We are so happy to have you join us. I am new to this site also. You will find much information here. You are not alone and we care about you. Your English is wonderful.
Betty
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Re: Im with Lymphedema since I was young

Postby Monica » Mon Aug 30, 2010 9:37 am

Thank you for this welcome, I fell part of family now. :)

I leave in São Paulo city.

I have afraid to take manual lymphatic drainage (MLD), because in the last year or year before, I went to beauty salon ( not to a lymphedema therapist) and I start one MLD but they never ever heard about lymphedema and I was the first one. Well, I didnt compress my legs after MLD too and I had a bigger swelling legs than ever. And it let me afraid about that, but you are saying that its works, Ill try again.

I dont have a good experience with doctors too. I heard that I have filariasis, but I really dont think so. Because if I do, my legs will swell and will never go back normal as they do sometimes. I have one complicate plus, I have izofagite and if I put my legs up, I must put my head up too, for not to drown because of it, I gave up to put my legs up. Sometimes, when my legs are too swollen I sleep with socks. Well, when I said for one doctor that I couldnt put my legs up he told me that he only treat legs not all body and this trouble was not he business !! He said nuts for me (Im not only legs!), and I gave up the convensional doctors too. Im trying homeopatia. But I think that it is not working... I confess I'm a bit daunting, and I'm conforming to wear only socks and let it go..

LymphedemaGirl, Ill try those exercises.

What help me is swim or just go in a pool. But not with hot water, not freezing too, just cold water. Other thing When Im over hot with my socks, I take a bucket with cold water and I put my "socked" feet in ^^.


Thanks God, today is cold, and I ll swell less :D
Last edited by Monica on Mon Aug 30, 2010 9:59 am, edited 1 time in total.
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Re: Im with Lymphedema since I was young

Postby patoco » Mon Aug 30, 2010 9:48 am

Hi Monica

I would sure ask the doctors whether or not you truely have filariasis lymphedema or if it is the one you are born with.

Also, when you go to get MLD, be sure that the person who treats you is trained and certified in lymphedema treatment. Regular massage can be bad and it doesn't work

Here are some pages that may help:

How to Choose a Lymphedema Therapist

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

How To Find a Lymphedema Therapist

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

Lymphatic Filariasis

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

Pat
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Re: Im with Lymphedema since I was young

Postby Monica » Mon Aug 30, 2010 10:00 am

Thank you^^
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Re: Im with Lymphedema since I was young

Postby Monica » Mon Aug 30, 2010 10:23 am

ok Ill try to find a lymphedema doctor and a lymphedema therapist. I have no idea where they are, but I think that they exist here. Im afraid to find Santa Claus before. But Ill try.
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Re: Im with Lymphedema since I was young

Postby Monica » Wed Sep 01, 2010 1:29 pm

I finally found one Lymphedema Therapist here in my town :D .
I'm anxious because tomorrow we will talk about, and I know that he is in one lymphedema team with doctor.
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Re: Im with Lymphedema since I was young

Postby Dosia » Thu Sep 02, 2010 6:52 pm

Monica wrote:I gave up to put my lags up, because its doesnt work with me. The swollen just leaves my legs and goes to my hands and face. I joked with my friends that I have a drain problem, that my lymph climb down and it doesn't know how to climb up.
Monica, please don't give up to put your legs up.

When your lymph climbs up and down - it is good, very good! If the lymph will stay in one place (in leg for instance), then it will fibrosis. Then your leg will be permamently big, and it will grow up more and more. I have one leg with some fibrosis lymph and I know that I can't get rid of it :( . I am very angry at my first doctor, that he didn't tell me, that it will end that way. Now I always remember to put your legs higher then my heart, to wear compression stockings. I even learn how to make a draining massage and I do it, when legs are worse. That all is not sisyphean task, it really works! Now I know how to stop the process of fibrosing lymph.
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Re: Im with Lymphedema since I was young

Postby Monica » Fri Sep 03, 2010 9:01 am

Thank you, Dosia

I really didnt know that when people say leg for up it is up that heart is, I just put up in a chear.

Today Im little down, because Im in a odonto treatment and my right face is swelling, :cry: well I can hide my legs or my hands but my face dont. I hope that its stop but Im fraid. And I will have my first appointment with an lymphedema doctor in 2 weeks. Well, at least is just one side.
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Re: Im with Lymphedema since I was young

Postby Jeanie » Mon Sep 20, 2010 12:22 pm

Hi,

It's really nice to learn that I am not alone. Your story sounds very familiar to mine. My ankle swelling started when I was a teenager. I am 42 now. Over the years, I've been to several doctors and I've never been diagnosed with any thing. The cause of the ankle and leg swelling is unknown. One doctor told me that the trouble was adipose tissue. At the time, I didn't realize that he was calling fat in a nice way. Like you, I've seen many people who are much heavier and they have thin ankles. At the time the doctor told me this, I weighed 142 lbs. and I was 5' 4." I don't like my ankles. It's taken me all these years to feel confident enough to wear a pair of sandals. I remember having a doctor prescribe diuretics for me. When I took the diuretics, the symptoms worsened. Instead of swolleng legs and ankles, I experienced swelling from the waist down. It lasted about 8 months and it was awful. I'm getting a lot really good suggestions from this group. I'm thankful for all of the experiences people are willing to share. I feel like I'm not alone any more.
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Re: Im with Lymphedema since I was young

Postby patoco » Wed Sep 22, 2010 1:27 pm

Hi Jeanie :)

Lymphedema does seem to be the only medical condition where the patient is subjected to such nonsens by the medical world and frankly, I really don't understand it.

With so many many people afflicted with this I also can't help but wonder why it is still called "rare" and why the medical world is just now starting to wake up to the fact that we exist.

I'm so glad you found us too, so always remember you're not alone. You have this big LE family who understands what you are going through and cares about you and how you are doing :!:

Pat

oops...where's my manners too.

Super welcome to the family here Jeanie. Any time you have a question or concern, feel down or just need to blow off steam don't be afraid post :!: That really is what we are here for :) - Pat
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