Lymphoedema advice please

[Chrimboo]

Hi, I got diagnosed with this at my doctors earlier this year after they thought it was oedema for the last few years but it’s not been responding to diuretics.
I’m only late 40’s and feel way too young for this.
The doctor just said at this stage they wouldn’t bandage my legs up (I didn’t ask) and to buy support socks to try and help.
I know I need to lose weight as my bmi is just over 30 but obviously a lot is the excess fluid. I’m also on anti-psychotics and they really do make you gain weight. They can even make you diabetic! (I get tested regularly).
I do try and walk for exercise but pain makes it incredibly hard.
Has anyone any advice or experience please?

Lots. I'm sorry this is affecting you. Get your doctor to refer you to a local lymphedema clinic and not just brush you off early intervention is the key.
Have a Google for a condition called Lipoedema or even lipolymphedema as these can look similar.

Manual lymphatic drainage might help. Find someone well trained to hell you. YouTube videos can show you what it entails.

Thank you, I’ll have a look at those.
I certainly feel very brushed off with a ‘when it’s really bad we’ll do something’ attitude. I was really hoping early intervention would help. As I said I’ve had it for over 3 years already but without the label.

Crossed posts, I’ll look at that too. Thank you!

The lipo lymphoedema certainly looks possible. I have huge legs but a small waist.
I am quite swollen though and my ankles and lower legs are the worst affected. Having them in the air / raised helps but I can’t spend all day with my feet up!
The self drainage looks interesting. I’ve just had a mini go and it feels quite nice!
I’ve been so fed up over this. It’s just constant and looks awful. My legs look like an old ladies.

Have a look on Facebook for some support groups we can help with how to speak to your doctor and provide literature for you to take with you.

I know this is quite an old thread but I sought it out as I met my friend at the weekend whom I've not seen since 2019 and she's got this. She had a work accident when she slipped on polished stairs and damaged her knee a few years ago, only in her 30s. Not sure if there's a correlation. The doctor is useless telling her they can't do anything and her leg is terribly swollen and weeping. She has to live in wide leg stretchy pants from M&S or joggers. She was told she's too young to be referred to a clinic and she's having to walk with sticks and isn't allowed to go swimming. It broke my heart to see her struggling like this. Any support would help. It was lovely to see her after so long so we didn't focus on this but I can't stop thinking about it.

Just saw this when searching for lymphoedema. I’m truly shocked by your friend’s story. 1) I’d tell her to kick up a fuss at GPS and insist she’s referred on to appropriate specialist. 2) has she thought about claiming from work for the accident?