My Story Lipedema - Claire

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My Story Lipedema - Claire

Postby patoco » Tue Nov 07, 2006 5:51 pm

My Story Lipedema - Claire

I believe my lipodema took hold during pregnancy - prior to that I
would say that I had average looking legs as I remember quite
happily wearing skirts and even mini skirts! That seems amazing now!

I had my son when I was 20 and I gained 5 stones (70lbs) I was about
9.5 stones (133lbs) prior to pregnancy - a healthy weight for 5ft
6". I tried very hard over the next 2 years to lose weight and I
eventually got down to 140lbs and I worked very hard to stay there.
About 5 years later I started studying for a degree and I found that
the combination of a sedentary lifestyle and not being quite as
careful about what I was eating meant that I was soon up to 15
stones (210 lbs) again. I have been trying ever since to lose
weight. I can get down to about 12.5 stones (175 lbs) but that is it
and it reallyis a struggle to get there.

To put the word struggle into context I mean - weighing nearly all
food bar veggies and exercising - a lot. At the moment I am training
for a marathon and I am running between 30 and 50 miles per week -
every week. I have been running at least 20 miles per week since
October 2004! I also walk a lot, cycle to and from work, belong to a
running club, run a women-only running club, and coach a childen's
athletics' club.

I feel I should also admit to having been bulemic when I was
struggling to lose weight. I really did have a big problem with food
as it had become an enemy. I am pleased to say I have been free of
the bulemia for a few years now.

People who have known me for a while sometimes say to me - I have no
idea why you aren't smaller. Sometimes I tell them about lipodema
sometimes I don't - if the Doctors look at you blankly and go on to
patronize you with descriptions of engines and the fuel-in, fuel-out
hypothesis (this is something I have heard several times by Doctors
in relation to food i.e. if you consume less than you burn off in
calories - you will lose weight - HA!).

I also have to tell you another grotesque thing that one Dr said,
and that was - well it (my legs) has to be an overeating issue as
this condition didn't exist in Belsen! - a concentration camp that
starved it's prisoners for those who do not know.

I have been to-ing & fro-ing to different Doctors for many years and
I have been told all sorts of things such as - it is in my head and
I need therapy as I must have body dysmorphic disorder, that I am
just plain overweight, that this is just my leg-shape - live with
it, that there is something wrong with my veins - they even removed
veins from both legs - this made it worse.

Eventually, after really losing my temper with one Doctor - they
sent me along to a lymphodema clinic - this is where I first heard
about lipodema. I had a months worth of compression wrapping and MLD
4 times per week for a month. This made NO difference. I was then
shown some pretty horrific pictures of how my legs could end up as
this is a progressive disease and then I was told to wear
compression garments ( I have no idea why as compression had not
worked the first time around!). I did as I was told and put on the
so -called made to measure compression garments but after wearing
them for about 2 hours they had cut off the circulation to my feet,
when I contacted the clinic they said that they would fit better
once I had lost weight - and these are the people that know
something about lipodema!!!!!!!!!!!!!

All-in-all I now feel pushed around, marginalized, ignored, not
trusted and a fantasist!! I only started out with big legs and
wanting to find out why!

I am in the process of trying every other complementary health in
the hope that something will have the answer, so far I have tried:

acupuncture, MLD, kineisiology, reflexology, homeopathy - ongoing,
cranial osteopathy - ongoing, massage - deep and sports,
hypnotherapy - helped me to feel better about my legs, MBT shoes,
earth shoes - I shall keep trying different things until I find
something that helps. Sometimes I think even if all I am doing is
trying these things in vain - well at least I am still trying and I
haven't given up. The only thing that ever stops me is the money -
ah well it is not as if I have a fashion habit - are they wide
legged - then I will take them!!!

My story is a bit scattered compared to others but I guess this is
how I feel about lipodema - sometimes it really bothers me and other
times I forget all about - almost.

Thanks for reading



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