49, female, Just diagnosed P.L. legs/arms/face. Just started manual massaging. Now have sudden upper-body sweats 5-10 x day. Is this normal?

Since 14yrs, I've complained to doctors re my ankle swelling condition. Only ever been told it's edema and nothing can be done. I even had liposuction privately at 25 to ease pressure.My condition now visibly affects my legs/arms/face. Noticed my daughter has similar problem. By chance found article on internet by Prof C. Campisi who diagnosed me. Sent my communications with him to my 'now'doctor who agreed Now has reffered me to Vasc consultant. I'm in despair, Is there anyone out there who I can talk to.

6 Replies

  • Please join up with the group on FB - they are very friendly and helpful with support and information . . . they respond quickly too . . .


    Good luck,



  • And you can also get lots of lovely support from the LSN peeps and also this site. Could the upper body sweats be unrelated to the lymphoedema but be menopausal symptom? Might be worth checking this with GP.

  • ps. having blood tested 7/11 to check thyroid. Will get results 2 weeks later.

  • Hi, thank you for responding. 7yrs ago I had a medical incident. I was rushed to hospital with what was eventually diagnosed as a swollen spleen. As a consequence I had what they call 'sudden menopause'. So no, my sweats are not related. I have since discovered via my doctor that the reason for my spleen swelling was due to a build up of the toxic fluids I have been carrying around due to undiagnosed PL. The news of this came much later despite the now obvious signs that I had a lymphatic problem.

  • Dear Ferguson1. I'm very sorry you didn't get a diagnosis sooner. It would at least have put your mind at rest over some things. It is not at all pleasant to have PL. I've had it for 54 years. It started in my ankles when I was 16 after being started on hypothyroid drugs. Mine also is whole body PL. I can tell you there is what is called "manual lymph drainage" which is very beneficial; however, depending on your condition you may need it very often and it is not cheap. I was told I should have it twice a week but could only afford it once a month as in my case it is not paid for on insurance. Two things I've learned over the years - don't ever take diuretics which some doctors insist you take. I had a very good doctor who told me 27 years ago - don't ever take diuretics. The other things is you must eat whole foods; no processed foods at all. These things will help you. Your won't get rid of the problem but there are things you can do in this way that will benefit you a lot. Standing is bad. Walking a lot is bad. So you have to get used to your own pace. If there is anything I can help you with, please send me another message. Keep happy. Helen.

  • Goodness honey what a horrible difficult time you have had. I do hope your thyroid isn't acting up too much. Best wishes

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