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From Extreme to Acceptance...

As told by Sam...

I was diagnosed in December 2006 by a Lymphoedema Specialist Physiotherapist. I had been referred to her by my GP surgery after the nurses there thought I had Lymphoedema. The GP had referred me to the nurses within the surgery, not because he was concerned about the shape or size of my legs but because he had previously not bothered to examine a point on my leg where fluid was leaking from and it had now developed into an ulcer. I then was seen by the Lymph physio who immediately diagnosed it as Lipoedema. I tried thigh length compression stockings but never really got on with them so gave up.

At the time I was very morbidly overweight from having had binge eating disorder and after having had hypnotherapy to stop that I then embarked on trying to lose that weight. I started using an online weight loss site and proceeded to lose 12 stone by calorie counting and exercise.


Three years ago I became obsessed with trying to exercise not only to lose weight but to try and make my legs look nice! I was running every day, building up to running for an hour at a time and at weekends I would go on a long bike ride, a minimum of 30 miles building up to 50 miles and 4 hours in the saddle!

However, I then for whatever reason and I’m not sure what it was, something made me realise that I was never going to get those nice legs I so desperately wanted and this led to me having depression, and also a return to binge eating and consequently a gain in weight.

Since getting the depression sorted and out of the way I then read the Daily Mail article which prompted me to request that my GP refer me to Prof. Mortimer. So a few months later I ended up seeing him and then having Lymphoscintography & ultrasound scans done on my legs which show that I do indeed have Lipo-lymphodema and less than 10% of my lymph fluid returns to my lymph system, so no wonder my legs are so swollen at the end of the day! I also have lipoedema in my arms.


I have been back to the Lymph physiotherapist to try compression hosiery again and am currently able to tolerate Class 1 knee high flat knit socks. I tried full length round knit tights which made me cry because they hurt too much when I put them on, plus they fell down even when I was using skin glue, I have also tried Class 2 compression but they are too painful too and felt like I had a tourniquet around my ankles.


The letter to my GP from St George's recommended that I go swimming to help and suggested I had that on prescription so I now have subsidised membership to my local leisure centre. However I haven’t been swimming much yet; partly due to me generally feeling too tired when I get in from work and now mainly because I have worries about showing my legs. But fingers crossed I might be able to find someone to come with me so I can break down that barrier and I am considering aqua aerobics.


Until I have the confidence to go swimming I have been using the gym and I had been busting a gut down there still obsessed with losing weight and getting fit. I would have the equipment on the highest of levels etc. so that I would burn as many calories as I could! But since having read everyone’s posts on LUST I have now managed to convince myself that there is no point pushing myself to extremes because I am never going to achieve what I want; which is to be a slim size 12 and have nicely toned legs! So I have now changed my focus and have reduced the levels on machines and now do light exercise with the focus on keeping myself mobile; I don’t want to have to use walking aids or even worse end up in a wheelchair. I do thirty minutes on each; the exercise bike, the treadmill and the cross trainer.


At the moment I only make it to the gym once a week, but as I am active on my feet all day at work I now accept my legs need to rest up as they have a hard day too.


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