Lipese Lifestyle Challenge

First, I need to say that because of the magic of the Internet and of, yes, Facebook, I met many wonderful ladies suffering from Lipoedema from all over the world!

We have support groups on Facebook, some of these women have websites, blogs and we are building up a strong community!

On the Lipese website...the idea came of starting a Lifestyle Challenge, which is all about making some changes in our eating habits, exercising, experimenting with supplements, treatments, etc...that can be resumed in 3 words: MANAGING OUR LIPOEDEMA.

My own personal changes started in November 2012, when I decided to go wheat and sugar free. Thought I would go nuts and end up like "Grumpy" but hey, was I in for a surprise!! I lost 10 pounds in a month!! Of course I had withdrawal symptoms: diarrhea, headaches, abdominal cramps but I persisted and now if I have something sweet I go "NAH!...this is WAY too sweet". Never thought I would pronounce this words in my sweet teeth's life!

My January challenge was to give up all grains!! At this point, in time, I no LONGER have bowel issues, no more loose stools, no more massive abdominal cramps. I had all of these even before giving of wheat!

I exercise 3 times a week too. And jog on my mini-trampoline. So far, this month, I have lost another 4 pounds. My non-lipedemic fat is melting!!

I also go to me MLD treatment once a week and do regular SLD! 

I'm really proud of myself! Never thought I would have the determination to do all of this.

http://www.lipese.com/index.html

What is Lipedema/Lipoedema?

This is a question that has no definite answer yet to this day. 

The medical community is still unsure what causes Lipedema, they still don't know what is abnormal to begin with, the increased fat or the lymph vessels and system not working properly? And what to say about the role of inflammation in it?  

Now, where does that leave us? What do we know then?

Lipedema was initially described by Allen and Hines(1) in 1940; as mention before, its etiology remains unknown and it remains under-diagnosed. 

So far we know that it is a condition affecting mostly women and consists of a bilateral and symmetrical enlargement of the legs with minimal involvement of the feet. Arms can also be affected in 30% of the cases. The body seems to have a pear shape. The trunk is much slimmer than the lower part of the body and the enlarged legs can be painful, easily bruise, and sometimes, an hypothermia of the skin is noticed on the affected areas. The excess fat can not be exercised away and is not affected by caloric restriction. Lipedema also consists of 3 stages.  Since there is more to say about it, I recommend you go and read the following websites where you will find more information from the medical community and also from women suffering from the condition:

http://www.lipomadoc.org/lipedema.html

http://www.ofa.de/en-GB/understanding-the-health-issues/understanding-lipedema/?id=15682

http://www.bigfatlegs.com/

http://www.lipese.com/index.html

http://lipedema-simplified.org/index.html


Learning you have Lipedema, can be overwhelming at first but there are things you can do to manage the condition. Proper eating and exercising helps to slow its progression, there are therapies like Manual Lymphatic Drainage that helps with flushing away the toxins and accumulated fluid out of the tissues, bandaging is often prescribed and compressive stockings can be worn as well. Since the fat deposits, however, often can not be reversed by means of this Complex Physical Decongestion Therapy,  some patients have for some years undergone successfully surgical adipectomy (liposuction) to remove these deposits and thus improve body shape.



1.   Allen, E. V., and Hines, E. A. J. (1940) Lipedema of the legs:A syndrome characterised by fat legs and orthostatic edema. . Proc Staff Meet Mayo Clin 15, 184-187

Lipoedema and me!

Have you ever wondered how it would feel to have healthy and beautiful legs? I sure did! More than once! Legs like dancers…slim yet muscular. Being short, I knew I would never have those long legs but I thought I could at least have slim ones. No matter how much calves or thighs exercises I did my legs would remain the same. I just thought I had huge legs muscles!  But as I grew older, I looked more and more like a pear. Had no idea why I was slim on top and that round on the bottom part of me!

To be honest, as long as I can remember, I always had a disproportion between my upper body and my legs! I would bruise easily too and for most of my life, I would try to hide my big thighs and was quite ashamed of them. At times, boys would make hurtful comments, which made me feel even more uncomfortable about they way I looked. I became to feel really uncomfortable about going around in a bathing suit in the summer and started wearing only skirts during the hot season! I was envious of all the others teen girls and what seem to me their “perfect legs”! Funny I was attracting guys…could not understand why though and credited my killer smile for it!

I did get married in my early twenties, had three pregnancies and the last one was the most difficult for me, health wise since my legs swelled a lot. Since I was pain free back then, I just thought it was something having to do with hormones and that the swelling would go away after the delivery. And it did. Many years later,  in 2009, after some serious family problems, I ended up in depression and took a medication called Remeron. While taking it, I put on some weight. Even after stopping it...the weight gain continued and my thighs got bigger, my tiny waist was gone and my upper arms got bigger too. I had no idea why this was happening because I was not eating like a pig so I blamed it on the medication!! My GP would only tell me that I was getting fat and that I needed to do something to loose weight since I had gain over 35 pounds in less than 2 years....I tried dieting, and nothing worked. To top it off, I felt tired all the time...I can't even remember when I did feel full of energy. I also had lots of headaches.

In October 2011, while being at a friend's birthday party, something changed for me!! A friend of my dear friend was there as well and he heard me say to a lady friend that I had gained a lot of weight since 2009 so he came to me, told me he was a massage therapist who specialized in treating people with lipoedema and lymphoedema and he asked me many questions about my legs, then he explained what was lipoedema and suggested I went to his clinic. He said that he was quite sure I had lipoedema and I started having the Manual Lymphatic Drainage there at his private clinic after that. I was not diagnosed by a doctor because here, we don't seem to have any specialist for that in Montreal, Canada. At first, I felt both discouraged and relieved, at least, someone seemed to believe me and did not think I was "Fat" and all the symptoms I had over the years (constant fatigue, bruising, inability to loose the fat on my thighs) were all related to lipoedema! Summer of 2011 was tough, had a lot of pain in my legs but this summer, not much at all...

I went to my GP again with all the information I could find on lipoedema, she had no idea what I was talking about. Lately, I spoke with a PT who treats women with lymphoedema and she suggested I call a vascular surgeon in Montreal that may be able to "confirmed" the diagnosis but she is not sure about that though. My MLD therapist was trained in Germany, he is treating lymphoedema and lipoedema patients, he uses the Vodder technique and he told me that if I ever want to have a liposuction, I would have to go to Germany to have it because here, the surgeons could do more damage to my legs than benefits. 

From different support groups on Facebook, I have met ladies suffering from lipoedema, from USA, Europe, Autralia and Africa and I have gained more knowledge about lipoedema, what I should avoid eating and so much more. I no longer feel alone and this makes a huge difference for me. I'm exercising and   I'm off wheat and follow a low-carb diet. I have my mind set on doing everything I can to not only manage this condition and to do my part in helping others suffering from it and I'm sure that with effort, more knowledge and time, we will be able to find a cure! I would post more about diet and exercises in another blog!

If any of you, have a similar story to mine, KNOW that you are not alone!