lymphoedema - New LSN Member

[AMcL]

Hi, lymphoedema in right leg, had it since birth (does that make it a primary?)

, now 37.

Manifested in swollen leg in my mid-late teens.

I'm fairly lucky that I had a very active childhood, lots of running, cycling, football, kicking people etc. so I have fairly athletic legs but right leg is pretty big compared to my left.

No discomfort but I very often struggle to get trousers to fit and NEVER wear shorts uness i'm going swimming - which I hate.

Glad to find this website. I assume there are others here in a similar situation?

I stopped wearing my supports literally decades ago because I found them very uncomfortable. and I have basically ignored my condition - which isnt a good thing to do!

I'm 37 now, need to start taking proper care of this issue. So hi to all.

AMcL

[AnneBury]

Have a look at the website of the Lymphoedema Support Network lymphoedema.org This Health Unlocked site is supported by the LSN and only a tiny part of what the LSN does. It does sound as if you would benefit from managing your lymphoedema more as you get older. I have had it since childhood and have put much more effort in as I have got older!

[bigleg]

Hi AMcL - my lymphoedema reared its ugly head when I was a teenager - in my left leg. At the time, I also was very active as my sport was riding and all that goes with keeping horses. I am now 72, which gives an indication of how limited the support was back then. I was told, because I spent so much time in jodhpurs, they probably acted as compression for me, but even then I had to have them made to measure because of the size of my left leg. For most of my life compression garments were not covered by the NHS or health insurance companies. Health Insurance because it was an existing condition once I was an adult. When I returned from living overseas for 10 years, things had improved thanks to the many victims of the cancer industry providing a much larger patient base for the suppliers of these garments. At that time Denise Hardy was incredibly helpful through email.

I managed to find a wonderful specialist masseur who helped me get 5 1/2 litre reduction in the leg and started me using a Medi stocking on the bad leg and then Jobst Tights over - thanks to the NHS now supporting the use of these wonderful garments. (Medi Class e and Jobst Class 4 Compression on the bad leg, 3 on the riht leg). Using that model for around 15 years now, my leg has never been in better condition. Getting dressed every morning I call 'my early morning work out!'

At night I have always slept with the mattress on my side of the bed well raised at the end of the bed to help the leg drain overnight.

So yes AnneBury, I have a lot to thank LSN for.

[Katem25]

Hi, Lymphedema since birth, must have been hard on you as a teen. I know the compression wraps or stockings are uncomfortable, but don’t stop wearing them. I wear mine to bed, not every night, since they are annoying, but I wear them. I was looking at pictures of people who did nothing & on some their toes were barely visible

[AMcL in reply to Katem25]

Thanks Katem25, I’m going to see the clinic soon. They were great but I haven’t been there for 15 years. Very unwise.

Trust you are doing well.

Regards

AMcL