lymphodema

[carly1]

has anyone had lymphodema , and if so have you managed it ok?

[Carakeel]

Hi carly1, I haven't had this myself, but foudn this info for you. Have a look at : http://www.uklymph.com/ Hope it is of help. Best wishes. :o)

[shopper]

Hi carly. I have had lymphodema in my left arm for about the last 8years. I see a lymphomema nurse every few months, and she gives me a special elastic sleeve to wear that drains the fluid away. I wear it all day at work. which involves a fair amount of lifting. I take it off in the evening. If I find my arm swells up more than usual I do exercises, and gentle manual massage of the lymph glands, shown to me by the nurse. Sometimes the swelling is higher than other times, but overall it stays under control, and it hasnt stopped my doing anything I want to do. Sensible precautions have to be taken not to get infection in the skin. Wear gloves for gardening etc. It has only happened to me once. I could see the redness going up my arm. Visited the doctor straight away, antibiotics cleared it up. The only other thing I can think that affects lymphodema is flying. Always make sure you wear a sleeve, because the cabin pressure can make your arm swell. Hope this helps.

[shopper]

Ive just realised that I am assuming the lymphodema is in you arm, same as mine, but it could be somewhere else. Have you had any medical help or advice.

[sunflower68]

My grandmother has had this condition for as long as I can remember (she is 94). Her legs are massively swollen and painful and I think she takes water-reducing tablets that make her need the loo. I would say her case is far more severe than most and she is often in pain.
One thing I would say, however, as shopper has said, is that regular exercise would help. I hate to say it but I don't think my grandma did enough of this in her younger days.
I am sorry if you are connected with someone with this condition and remember my grandma's age means her symptoms are probably a lot more severe than most. As she is unable to get about these days she is in a no-win situation to help herself. x

[Shire]

Hi carly1,

I have had lymphodema in my lower legs for about 3 years now. To be honest my GP was less then helpful about the situation - I think he may have been one of those who do not accept that lymphodema exists - and basically told me that I had to put up with having odd-shaped legs. As my Dad also has this condition, I knew that that wasn't the case, so I asked to be referred to the lymphodema clinic at the local hospital, and although my GP was reluctant to refer me, I kept on asking until they did. I now wear compression stockings that go from knee to foot, and go for annual checkups to measure the size of my legs. The clinic also sends me out two new pairs of stockings every 6 months.

It really doesn't bother me now, I'm not in pain, and it doesn't stop me from doing anything I want to do. As shopper says, I take care not to get any cuts on my feet / legs, and rest with my legs up whenever possible. When I fly, I make sure that I wander around the cabin frequently and also I ask for an aisle seat, or, even better, a seat by the emergency exits, so that I don't have to climb over people all the time. The stockings aren't the most attractive garments in the world, but I don't really notice them now. I mainly wear trousers anyway, but if I do want to wear a short skirt, I wear knee-length boots, and nobody can see them. The only major clothing problem is that they make wearing shorts a bit pointless, but it's not that often that it's that warm here anyway!

I have a sheet of exercises that I try to remember to do daily, and I also think my legs are a bit better since I took up boxing training earlier this year, as this has helped me to lose a stone in weight.

The specialist I saw at the hospital tells me that not a lot is known about the causes of lymphodema, although there is a possibility of a hereditary link (my Dad also has it in his right leg).

Best wishes xx

[carly1]

thanks for replies , yes it is in my arm and was caused by cellulitis. i have seen the nurse and have a sleeve , go back next week to see if the swelling has gone down, just hate the thought of wearing a sleeve all the time ,