To think I might have lipedema? Anyone know anything about it?

[GentleGiantOctopus]

I’ve read around 10% women have lipedema, many of whom go undiagnosed.

Ever since puberty, I’ve always had very flabby upper thighs and large buttocks compared with the rest of my body. I’m skinny on the top half of my body, but my bottom half is really wobbly. My muscles aren’t strong but if I bulked them up, the fat would still be there - I know this because I have been a stone underweight in the past when I compulsively exercised and ate barely anything (unfortunately I was anorexic as a teen, but thankfully have been well for around 20 years now). Even then, I could grab a whole handfuls of it, which is part of what kept me in the grip of anorexia until I realised it was too miserable living life like that and started

My thighs currently look very similar to the attached image (insta pic of a young woman who has lipedema). I also have an awful lot of cellulite - the kind that practically throws shadows in places!

Exercise-wise now, I walk a lot, but don’t run (bad knees) or go to the gym. In the week I don’t tend to walk over 8,000 steps a day, but on weekends it can easily be above 20,000 each day. I walk swiftly every day so as to get my heart rate up and always run up the stairs at home.

My ankle on one side has a swelling that my GP previously said was a lipoma, but now I’m wondering if this is part of a bigger issue. I also have optic nerve drusen (fat deposits on the optic nerve) and a cholesterol that is on the higher side of normal, despite a healthy diet.

My BMI is around 19.5 (so I am still on the slim side) and my upper half looks skinny which I don’t like, but I never gain weight there. I also have slight bat wings under my arms.

I had liposuction around age 20 to remove my saddlebags on my outer thighs (plus a revision surgery). They are still there a bit, but considerably less noticeable than they were. They were very prominent prior to surgery and looked rather odd compared with my bony top half - they looked very like this: www.instagram.com/p/CEHrDM2gt1N/

As I get older, I have stopped wearing normal socks as I get a huge sock line at the ankle that lasts for hours. I wear trainer socks now. My legs get slightly bigger by the end of the day, but probably only I would notice. When it’s really hot or I have eaten something really salty, they swell as well (especially with the latter).

My query is, could it be lipedema if I have no pain? The ‘lipoma’ on my leg aches a bit sometimes, but nothing major. The rest of the flab is not painful.

Or am I just ‘skinny fat’? I am conscious that if it is lipedema there are things I need to be doing to prevent its progression. Problem is, I have a feeling it would be very hard to get a diagnosis because right now I don’t look particularly out of proportion - a passer-by might only look twice if they saw me in a swimming costume (which will be NEVER, haha) and I have read that most GPs don’t know much about to the condition.

Thanks and sorry for the long post.

@problembottom

Personally, I think because the condition is under-recognised, it's worth being diagnosed so the range of the condition can be seen as well as getting a better idea of how many people it affects across the UK.

It might even be good to get advice on how to self-manage the condition eg through light compression/anti-inflammatory eating/lymph movement.

My mum has oedema in her legs and my grandmother had huge legs and arms. By the time my grandmother passed away she had serious issues with leg oedema. This is why I want to be seen by someone for it because it can be progressive and seriously restrict your mobility.

The reason I started noticing mine was the lumps and legs not decreasing in size when dieting and exercising, in fact my knees seem to be getting larger.

I’ve never been able to buy boots for instance, above the ankle as they won’t do up over my calves. This was even an issue when I was 11st and a size 12.

I have only noticed the pain more recently (it is painful if a child or dog sits on my lap, or random pain unexplained) but I’ve been noticing bruising and cold skin for a long time.

I know there is a stage 1, maybe you are more at that point now, keep an eye on it?

That's really interesting thanks. My mum is now 80 and her legs are fairly huge and painful despite her trying to stay relatively trim. And I have always had the same problem with my calves. The only time normal knee length boots fit me was when I was a size 6-8 in my 20s.

Might be worth a chat with someone then.

It might be yes, it’s really difficult unless it’s obvious I think, which is not right as by then it’s probably causing issues and I know women struggle to be heard. I definitely mentioned my family history of leg oedema to the GP. I tried not to really mention how I felt about it cosmetically, more that I wanted to try to stop progression. Cosmetically I try not to think about it as I get upset. I try not to even look at them a lot of the time. I never swim, don’t wear anything above the knee and I know my partner doesn’t really understand why.
you need to be careful about weight gain I believe as that’s when it can creep up on you. I had major surgery last year and that’s done it for me with the early menopause. I was off my feet for ages and gained weight

So glad I've found this thread. So nervous of going to the doctor, just like some of you have said. I suffer from depression and I'm worried they are just going to think this is another thing just in my head.

How is everyone getting on now?

Hi @SheilaWilcox! I've just been to be measured for compression at my local lymphoedema clinic. Just waiting for them to arrive.

The Talk Lipoedema charity has some very helpful information on their website, which includes a video and download to help healthcare professionals diagnose lipoedema.

That sounds positive. Have you tried some on before? Are they comfortable? Available privately to buy from Amazon etc.?

When people mention hypermobility, my ears prick up. I've recently started Pilates and the instructor recoiled when I was doing a move with my leg up in the air because she said what I could do was freaking her out. I had mentioned lipoedema to her in the past, but like GPs, I don't think she knows anything about it. My swelling/cellulite etc has definitely got worse because I had an accident in January and did very little exercise, not even walking, for quite a few weeks. I've had to wear compression socks for a few years now, if I don't the pain in my lower legs stops me from sleeping when I go to bed. I also don't want to wear sleeveless clothes any more, my upper arms are so saggy and look so lumpy from the back. I saw a therapist who specialised in Manual Lymphatic Drainage but she said because it looked more like lipoedema than lymphoedema she didn't think MLD would help. I've still not contacted my GP about this, I just can't face them.

I don't really have anything below the knee so I've been measured for Spanx/bermuda shorts-style. I've never tried it before so keen to see how it looks under dresses/trousers.

I love been wearing flight socks up until now and I've very little swelling around my ankles. I think the made to measure stuff is pretty expensive to buy privately.

I was referred to the clinic in January and just had my appointment in early April.

I’ve seen quite a difference since I started walking a lot and losing weight.

They look overall visibility less lumpy but it’s not gone away. they aren’t dramatically smaller but some of the knee swelling is better

I drink a lot of water and have lost 1.5 stone. I don’t know what the point is where I can’t lose any more yet. I am waiting to see a vascular surgeon apparently