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Lipodema

i've been told i have lipodema, an abnormal distribution of fatty tissue between the waist and the ankles. that really cannot be gotten rid of by dieting or surgery.  It mainly occurs in women and has a genetic component. 

 

Does this ring a bell with anyone?

 

preloon preloon 61-65 5 Responses Oct 18, 2008

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I was diagnosed with lipodema 5 years ago. I have tree stumps for legs and have gone through the archaic treatment to take the fluid down. I have the pressure stockings to help keep the fluid from coming back but they are hot and burn my skin (I seem to be alergic to everthing). <br />
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The first thing I have to say is you can live with this. It is ugly to look at. It is uncomfortable and painful at times but you will live. Find a good doc and occupational therapist. Don't be afraid to question your doctor if your gut tells you he or she is snowing you. There are occupationa therapists out there trained to get the fluids out of your legs. The treatment is archaic and uncomfortable but effective.<br />
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There is also hope. I recently heard of another treatment. It is called the Wright Linear Pump. It is used on lymphodema patients to remove the fluids from their limbs. They are treated the same way we are. Why wouldn't it work for us. I am seeing my doc about getting on for me. It you are interested you can contact them at 305 High Tech Dr, Oakdale PA 15071 or call 800-631-9535. I called they will work with my insurance and my doctor. It is worth a try.<br />
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Good luck You won't need it. Keep fighting.

HI,I WAS TOLD 2MONTHS AGO I HAD THE SAME PROBLEM,FOR YRS I CUDNT UNDERSTAND Y I HAD A LUMP OF FAT UNDER 1 KNEE N NOT THE OTHER,MY OEGS ARE HORRIBLE,IM VERY ACTIVE N GO THE GYM EVERY MORN FOR HR N HALF,N ITS STILL THERE,IVE PAYED THREE N HALF THOUSAND POUNDS FOR LIPO N STILL ITS NOT WORKED,IM SO LOW N FEEL UN ATTRACTED,FEEL VERY FAT AND I WISH I CUD CHOP MY LEGS OFF,I HATE THEM I IF I WAS TOLD I HAD MONTHS TO LIVE IT WUDNT HAVE A AFFECT ON ME,IM RUNNING OUT OFF IDEAS,MASSAGE IT COST 45 EACH TIME N NEED AT LEAST TWICE A WK,I CARNT AFFORD IT,ALL I WANT IS SLIMMER LEGS,I CARNT WEAR SHORTS OR SKIRTS SO WEN SUMMER COMES ITS JEANS R TRACKYS,IM ALWAYS LOOKING AT OTHER WOMANS LEGS N SOME TIMES I CRY AT NITE INTHE BATH,I HATE LOOKING AT MYSELF,AND AVOID GOING OUT,IM 40 N LIVING LIKE IM 70,I DO TRY TO ACCEPT BUT ITS JUST NOT WORKING,ITS REALLY BOTHERING ME NOW,I WUDNT WISH IT ON MY WORSED ENEMY,

I am so sorry to hear about your lipo - I have the same condition at stage 4 and have had it since<br />
I ws 12 - I am now 59! There is not a lot you can do other than compression bandages or stockings<br />
dieting won't help. It's hard sometimes to keep your spirits up and feel good about yourself. I hope<br />
you have good support from your family as this can make it easier to bear- Good luck!

Hi Preloon I haven't got time right now to say much but I see your post is quite dated and wonder how you are getting on with your Lipodema. I'm interested to hear what has been happening with you.

wow. i'm sure sorry. i don't have it, but i've seen it, and i understand the pathophysiology. it's sure weird, the things that happen to us in our lifetime. it's so unpredictable. i hope you can be treated successfully. good luck.