Some Understanding

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Some Understanding

Postby LauraLynn » Wed Jun 09, 2010 2:38 pm

Hello,
This is my first time here. Well here goes, I am 21 and have chronic swelling of the legs since I was 15 years old. I get unexplained pain and find myself with awful looking spider veins. A few months ago I went to a speciality doctor and they said I had primary Lymphedema. I was soo relieved to know what was wrong; but, more fraustrated to know that there was "no cure". I sit and cry sometimes because I feel that people do not understand how this affects my life. I do not wear shorts, dresses, and often question how I look because of feeling like I have fat ankles. I had tried support socks; but, they just cut off more circulation and cause more pain. They gave me fluid pills and this does not help either.

When I went to the doctor that diagnosed me, there was a discussion about some method of draining the fluid. However, he never got in detail about it or where to go. This was the same for thedeep tissure messages and wrapping (confused). The doctor I felt was uncompassionate. I knew this when he looked at my legs and said this is a women's problem and that I am getting old and this is why the spider viens are appearing. I left very upset and feeling like I did not get the answers I was looking for. It is hard with me in school and having a boyfriend. So, I am hoping to find support here and to get a different outlook and advice.


Thanks

Laura
LauraLynn
 
Posts: 4
Joined: Tue Jun 08, 2010 3:05 pm

Re: Some Understanding

Postby patoco » Thu Jun 10, 2010 9:23 am

Hi Laura

Super welcome to our family here :!: :) I'm going to load you up on some pages that hopefully will bring some answers. Also, if you do have any, please don't hesitate for a second to post them and you will get answers.

I've had doctors like this and it really makes you wonder why they chose to be one.

What we need to do is get you to a certified lymphedema therapist for both an evaluation and a treatment program.
The massage treatment is referred to as either Compreshensive Decongestive Theraphy of Manual Decompression Therapy. The page below will explain exactly what this is.

MANUAL LYMPHATIC DRAINAGE (MLD) and COMPLEX DECONGESTIVE THERAPY

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

I can really do wonders and it is the gold standard for both the treatment and management of lymphedema. There is hope Laura, even though the condition is at the present time not curable, and you can lead a full and successful life despite it.

Also, just wanted to mention that diuretics (water pills) will only make the condition worse. Most doctors, even those who know of lymphedema are not aware of this and continue to prescribe it.

This page will give some input on that:

Diuretics are not for lymphedema

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

Also, please don't let them just put you on a pnuematic compression device. While they too will help remove fluid, in the long run they can cause further damage.

Compression Pumps for Lymphedema Treatment

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

Why Compression Pumps cause Complications with Lymphedema

viewtopic.php?t=327

It really is almost impossible for anyone to understand how this condition effects you - and how it effects just about everything you do. People just can't imagine either just how much emotional pain you go through because of LE. Most of us here have "been there - done that." I've been doing that for over 57 years now.

Look forward to hearing from you and in getting to know you too :!:

Big hug to you too

Pat
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Re: Some Understanding

Postby annelicious » Thu Jun 10, 2010 11:51 am

Welcome.

I just joined this group. I can relate to what you are going through. I am also in my 20s, i am 28 yrs. I have been living with primary lympedema of both legs and feet , i was also diagonised when i was 15. People around me also do not understand what lympedema is.

Good luck
Annie
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Re: Some Understanding

Postby LauraLynn » Thu Jun 10, 2010 3:29 pm

Pat and Annie,
Thanks for replying. It is really helpful to get feedback from others who deal with the same condition. Pat, I will look at those links, you posted!! I am very greatful to have found this site and to gain a support system :D This means a lot because this will help me in finding the resources I need in order to start a postive and healthy treatment plan.


Laura
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Joined: Tue Jun 08, 2010 3:05 pm


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