Lymphdemia

bazaar1982

Qny sufferers on here? My mum and nan have severe hereditary lymphdemia in their legs, my nans legs are HUGE. I do not want to head down that route but I've already got little puffy pockets at my ankles.

Ay one else successful controlled it? Was it by exercise, weightloss, diet? Ay tips appreciated!

bazaar1982

anyone

schpanks

Have you talked to a doctor about it? I know some people wear compression stockings to help with it, but I don't know if there is anything that really prevents it.

bazaar1982

yeah, he was completely useless, said that losing weight would help. He knows nothing about it - mum was a size 8 all her life and still got the legs of a heffalump.

there are specialists but he wont refer me until its more serious.

mem50

Tried this once. did not work. ( Machine timed out on me)

Yes. Get a new doctor!

Restrict sodium intake.

Get a pair of compression stockings. Insurance will cover 80% on a certain number of pair a year. Or just go pick up a couple of pair if he won't give a scrip for them.

Massage. Start at ankle and with firm pressure work your way up the leg.

Hot and humid days keep them elevated as much as possible.

Weight loss did help me. It only flares up when I have to do 10-12 hours on my job. (On feet all day) That is if I don't wear the socks.

Best of luck

bazaar1982

Tried this once. did not work. ( Machine timed out on me)

Yes. Get a new doctor!

Restrict sodium intake.

Get a pair of compression stockings. Insurance will cover 80% on a certain number of pair a year. Or just go pick up a couple of pair if he won't give a scrip for them.

Massage. Start at ankle and with firm pressure work your way up the leg.

Hot and humid days keep them elevated as much as possible.

Weight loss did help me. It only flares up when I have to do 10-12 hours on my job. (On feet all day) That is if I don't wear the socks.

Best of luck

thank you - am trying most of the above, so will keep at it. sadly I'm in the UK so you have a local doctor (GP) and thats it (I live in a tiny village with one practice!) so don't get to change!

its just so frustrating that even if I loose the weight, I still seemed destined to go the same way as mum and nan. There are lymph transplants available in the US now, but noone will touch heriditary lymphademia, only the type caused by lymphoma. All i need is a surgeon who is willing to trail it on me (oh and the money to do so!)

Clarevmb

my mum has this and the only thing that's really helped her is the compression stockings.
She was also advised keep active, keep healthy weight, low sodium and whenever sitting try to keep feet at waist height
(including having them on a pillow or two at night) - all mentioned before.

We're in the UK and apart from the stockings there doesn't seem anything the GP is willing to do.
If you're really concerned you could always google for a private specialist but this is bound to be around
£120-140 for a consultation. You would also need to find out if this covers any preliminary tests.
However could be worth it as most consultants, if you're straight with them, and explain you don't want to go
privately and you're not in an insurance scheme will write back to the GP with recommendations (if there are any).
Also a specialist in this area will be aware of any trials/research studies going on if you're willing to take part

bazaar1982

my mum has this and the only thing that's really helped her is the compression stockings.
She was also advised keep active, keep healthy weight, low sodium and whenever sitting try to keep feet at waist height
(including having them on a pillow or two at night) - all mentioned before.

We're in the UK and apart from the stockings there doesn't seem anything the GP is willing to do.
If you're really concerned you could always google for a private specialist but this is bound to be around
£120-140 for a consultation. You would also need to find out if this covers any preliminary tests.
However could be worth it as most consultants, if you're straight with them, and explain you don't want to go
privately and you're not in an insurance scheme will write back to the GP with recommendations (if there are any).
Also a specialist in this area will be aware of any trials/research studies going on if you're willing to take part

agreed about the GP - the only thing he'll do for any of us is the stockings. my poor nan can;t walk due to it now. Ive not been to a specialist but mum has, and he basically refused/cannot do anything - the only trials he knows of are the lymph transplants but they are generally only in masectomy paitients following lymphoma.

its not at all like greys anatomy where they take on hopeless cases! I think its a case of 'let it be until its so bad that its too late to do anything'

will keep an eye on my sodium levels though, as I CRAVE salt, have done since baby number 2 - no idea why, but I purposely keep it as low as possible.