lymphorrhea all over!: I was recently diagnosed with... - LSN

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lymphorrhea all over!

irisong
irisong

I was recently diagnosed with lymphedema with lymphorrhea .Although the edema is in my legs the fluid is leaking out all over my body. It is in my hair, covering my teeth, and skin everywhere. It is clear, very itchy and sticky. I can't wash it off although I have tried many things such as rubbing alcohol and various oils and wipes so it keeps accumulating.The doctors and the therapist find this very strange but are no real help. Has anyone else experienced this or have any suggestions as to how to remove the lymph from my skin?

4 Replies

Are you in the US? You could try the following groups for advice and support:

inspire.com (put NLN in the search box)

clt-lana.org

lymphedemapeople.com

If you are in the UK, call the LSN helpline - (10am-4pm Mon-Fri) 0207 351 4480

irisong
irisong in reply to Lynora

Thanks so much for sending me to inspire.com, Lynora. I found another woman who has what she calls "global lymphorrhea" very similar to mine which she has been dealing with for 15 years. She has done much research and has a wealth of info for me. Just wanted you to know how helpful you have been.

I have this too - it leaks from my tummy - I thought It was just sweating at first- but it’s so sticky 😀

Thanks for the reply Annie! Are you able to clean the lymph off your tummy or does it congeal and accumulate as is my experience? No amount of soap and water or anything else I've tried will take it off. This is particularly a nuisance in my hair and on my fingertips. Where idoes your main lymphoedema occur?