Just Diagnosed

Hi I am new on here, I am 48 and just been diagnosed with lipoedema. I am at stage 3 and I have had this all of my adult life without any knowledge. Unfortunately the doctors are not really aware of this condition and just brush it off. However the nurses seem to be more aware. It was a nurse in hospital that asked me if I have been tested with regards to my legs as they are very big. no I said the doctors put it down to obesity. I am overweight and it does not help your lipoedema if you are overweight. Over the years I have lost more than 6 stone, however there is not much difference on my arms and legs. I was told by my nurse that unfortunately losing weight with lipoedema will not work.

I am not sure this is true, I think certain foods can help, and I am going to try this for a few months to see if this works. I am not giving up as I cant walk properly and the pain can be really bad. I am one of the lucky ones at least I am still mobile.

The main thing I hate is the support stockings they are dreadful and I find it very hard to use these. I have to try anything, the last resort is liposuction and that cost over £35,000.

My doctor tried to get me a grant but I was turned down.

Anyone who has any ideas to make life easier please let me know!

Thanks

De

3 Replies

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  • I am 68 and have had Lipodemia all my adult life but was not given a diagnosis until I went for knee replacement surgery about 4 years ago and was told no because my thighs are to big. I am obese according to my BMI,my upper arms are bigger than other peoples thighs! my legs are huge shapeless tree trunks but my hands and feet are small, my ribcage can be easily seen and felt and my waist is about 20 inches smaller than my hips. This, I am told is typical of lipodemia and all I can and must do is to keep as active as possible as being sedentary can lead to complications as the fat can get hard and very painful. I also bruise very easily and my limbs are tender when touched.

    I do not wear support garments as I find them restrictive and very uncomfortable, I find that swimming and twice weekly aquafit sessions help keep me mobile, I was told by my specialist that nothing will shift the lipo fat, it is extra fat cells which keep replacing themselves. Liposuction does work but only as a temporary measure, as the fat cells get replaced they will be back in around 5 years. And of course it is both expensive and invasive surgery.

    You right in looking at your diet , try not to eat processed foods and cut some sugar and salt eat high fibre low salt/ sugar and it should help a little.

    Good luck and best wishes

    Jill

  • I think I am In a similar position to you (could be wrong) and also think there must be a solution and despite trying for a few years now can't seem to find anything that makes a difference but will continue to run tests on myself.

    Things on my list to test:

    Lower fat input (current test): have just started to measure and am approx 50grams a day and would like to get that down to 30grams (using MyFitnessPal ). Am also trying to track vitamins.

    Swimming - I used to do this and it made a massive difference. Wore swimming leggings to cover legs. Gave up for no good reason...chap made a comment. Need to get over that and start going again.

    Rebounding - this helps a bit too.

    Hillwalking if I can find a way to alleviate knee pain I have at the moment (going to try bananas, evening primrose, apple cider vinegar, turmeric, ginger to se if any help). Only time my legs were thin n my life was when i went travelling for sixmonths and was trekking a few days a week (all day!!)

    Weight training: don't know much about it but think worth investing

    My Physio does ask me about liposuction but I think I would prefer to try other means first and no if I have lost all surplus weight.

    Would love to have other things to try.

    Ann

  • Ps have cut down sugar to less than 10% calories and cut out processed food and lowered sodium levels to 1000mg per day. My thinking is y tests will make me healthier even if I don't sort out lipedema.

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