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Hi there- I just thought I would take you through some changes that have occurred since my last post, in that the other evening, after my bath and evening massage, I sat with my legs elevated and noticed my calves and shins seemed a little larger than usual. There appeared to be a greater area of Lymph fluid collection in both of them, but it was more evident in the left than the right.

After sleeping with a pair of knee highs on, I had my morning shower and massage, put my compression tights on and did a double take. I stood in front of the mirror… turning this way and that…yes, those ankles were looking slimmer and further up my leg!

Let me explain…. Its almost as if the bottom half of my shin and ankle area are tighter and slimmer, with the fluid trapped in a smaller area than usual. Is this the compression garments result? I don’t know… I will keep observing.

I know black gives a slimming effect, but here’s what I saw…

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And then, blow me, a couple of days later, the swelling re-appeared on the top of my left foot. My toes felt enormous and the sensation was disconcerting and quite painful. I walk everywhere and I needed to be able to get some shoes on.. I persevered with my comfiest pair of desert boots to walk the dogs and then the bandages had to be deployed. I was forced to rest a while until my foot went down and it was less painful to walk, but it seems that for me, even a gentle skin stroking massage ( my MLD technique must be flawed) encourages additional lymph fluid production, so I’m a little cautious about doing it too much, too often. I will try spending longer clearing the pathways higher to the exit points. Again, I will observe and listen to the messages my body is giving me.

Today, I managed my usual 2 hour morning walk, but I can feel the restrictions of the fluid creeping back. It’s so frustrating! But I’m sure you all know that feeling, so no use in dwelling on it… anyway, whilst I’m resting, I thought it was time I had a closer look at Lipoedema. I didn’t realise I had this until Dr Shim diagnosed it at my consultation. As I read on, a few more things became clearer.

http://www.lipoedema.co.uk/ lists the symptoms for diagnosis as follows:-

  • Disproportionately larger/fatter legs and hips compared to the upper body
  • Swelling is symmetrical (both sides of the body are affected equally)
  • Hands and feet are not affected
  • Loose, floppy connective tissues around the knee joints
  • Fat that looks like cellulite and feels soft
  • Tenderness/pain and easy or spontaneous bruising to affected areas
  • Skin of affected areas may be pale and cold
  • Upper arms may also be disproportionately fatter
  • Patients may report increased swelling in hot weather

I fit all of those….my knees remain distorted and sport fresh bruises daily from kneeling to clean ( a good excuse to stop!?) The top of my arms are very large with a distinct ‘line’ like an additional layer of fat is being laid down.

Most alarming is  the last one about increased swelling in hot weather- that’s precisely what happened last summer, here in Korea… I couldn’t get into the clothes I’d brought from England…and we are here for another summer..

I needed to know if I had done something wrong in my past to get like this and if there was anything I could change. On http://www​.bigfatleg​s.com I found these words of wisdom…

Lipedema is a predisposition to store carbohydrates as fat in the lower part of the body.  Sufferers cannot lose weight through traditional diet and exercise. While our doctors see and (mis)treat us as non-compliant, obese, food addicts, the lipese often starve themselves and over-exercise.  We lose weight, but the areas set aside by our bodies to be dumping grounds, will not respond to ANY traditional method of weight loss. In fact, the more a lipese counts calories, the less weight he or she loses in areas designated for unusable carbs.  Disproportionate thighs, butts, hips, calves and ankles are considered to be the classic lipese figure, but we now know that stomachs, upper arms, backs, and chins can be carbohydrate graveyards as well. There is therefore no classic size, distribution of fat, or weight. You can be a size 4 or a size 4x. You can be a woman or a man, and lipedema often “runs” in the family.

Lipedema has little to do with obesity though many of us are considered “morbidly” obese. Lipedema is, rather, an inflammatory reaction to our environment, processed foods, high carb diets, hormonal events such as pregnancy and menopause and chronic, everyday, or event related stress.  Because much excess weight is inflammatory, lipedema can cause 5 to 10 pound weight shifts in one day.

Intense pain in legs and joints, good days and bad, and a progression of  symptoms are all a part of lipedema.  Because weight in any area of the body is blamed on the sufferer, social isolation, chronic traumatic stress syndrome, body dysmorphic syndrome, and eating disorders are also common.  Many of us are anorexics in fat suits being prodded by our physicians to lose more body mass.

So, THAT’S why I have thighs like this! And on becoming a teenager, I thought my big thighs were due to all the cycling I did- and then when I had my children, they seemed to get worse- and now- the menopause!  I eat fairly healthily, cooking from scratch and try to avoid putting carbs on my plate. But some days, I’m just plain hungry and if it’s cold, I do need some carbs….

When I was in the hospital in Seoul- each of the 3 meals a day had white sticky rice served with them.. carbs… I ate it once per day, but knew I couldn’t have any more. I had 5 litres of me extracted and lost no weight. For 2 weeks, my diet was restricted to western refined style cereal and milk for breakfast, but the rest was healthy Korean food and fresh fruit. Weight loss? Nope.

So, the weight watching is to continue for the rest of my life, I accept that, having done that since the age of 16 anyway, but the following diet is very similar to what I’m having now, which is most reassuring- I’ve found my own way on food.

But I wanted to know if is there a connection with Lipoedema to Lymphodema? Oh, yes…one begets the other! This happens most frequently in the later stages of the disease when the fat obstructs the lymphatic drainage leading to a mixture of lipo-lipoedema and lymphoedema.

However, in the early stages, Lipodema gets mistaken for Lymphodema.

In my case, the Lymphodema arrived after an operation on my legs.

This site lists the differences. http://www.lymphoedema.org/Menu7/Index.asp

And here’s some other useful sites.

http://www.xojane.com/healthy/lipedema

http://www.curelipedema.org/

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

My next post will be a closer look at the story of the ‘cured’ patient I met at my last follow up appointment.

In the meantime- Spring is on its way to England! A picture sent to me by a friend of the woods near our English home- full of snowdrops!

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