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lymphodoema anyone??

(7 Posts)
doublecakeplease Tue 09-Apr-13 20:26:58

Looks like i have lymphodoema in my left leg. Had symptoms for years (I'm only 35 now!!) - pain, swelling etc. Been fobbed off by 4 different doctors about it being water retention etc. My feet and lower legs have always swollen up in summer but my left one has been permanently swollen and painful since i was 13 weeks pg with DS (who is now 14 months)

I feel awful moaning as i know others have much worse problems but it's truly making me miserable. It's painful constantly, i can't wear any remotely nice shoes (even Evans widest fit hurt for 'night out' shoes) i dread the summer coming as i know it'll get worse and i've recently been put on bp meds which are making it worse!

I need to lose weight - which I'm working on - but is there anything else anyone could recommend whilst i wait for my lymphodoema clinic appointment??

Edlyu Tue 09-Apr-13 20:32:13

I have arm lymphodema and manage it with a lot of light massage up towards the heart.

I wear sleeves which are horrid but do keep it under control.I did have some long socks given to me when I had a problem with leg swelling but it turned out that I was just eating sitting too much and was temporary.

Have a look here for a starting place for information.

doublecakeplease Wed 10-Apr-13 09:39:20

Thanks for the reply and the link - will have a good look at it later on. Can i ask - does it bother you?? I really hoped it was something more 'treatable'. I hate how my leg looks already, can't wear anything nice... Sorry, pity party mode. Will snap out of it.

trice Wed 10-Apr-13 10:05:52

I have it in my right arm. Loosing weight and increasing the muscle mass reduced the pain dramatically. Massage and elevation never seemed to help me.

ermahampton Wed 10-Apr-13 10:14:11

Yes. I was warned that this could happen after removal of lymph glands and two months after radiotherapy noticed the swelling in my left leg. The sooner you make your appt and get to a physiotherapist who is trained in lymphatic drainage the better as you will be treated and taught how to do self massage to keep the swelling under control. I wear a pressure stocking during the day but am fine without it if I have a 'skirt occasion'. I've got used to the stocking and do the self massage morning and night. If I don't I definitely see and feel the difference in the leg. Use this health information forum to discuss more.

doublecakeplease Wed 10-Apr-13 10:17:24

Thank you so much for the info. I just wish it had been picked up years ago. I've avoided holidays / nights out for years because i know I'll feel ugly, be uncomfortable then in pain. Waiting for referral but there's quite a waiting list i think.

larlemucker Wed 10-Apr-13 10:23:52

My mum suffered with it after breast cancer and a mastectomy. She also used massage and a sleeve. If you have someone local they may be able to loan you a machine to do the massage.
Check out the lymphodema support network

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