Any good advice for lymphedema?

[Latisha]

I was diagnose with lymphedema on my right foot and leg something that I never heard before I'm trying to learn to live with it but it's hard and not knowing anyone that has it that I could talk to it makes me frustrating any good advise from anyone

[shirty67]

go to the doctors and let them refer u 2 a lymphoedema nurse i have lymphodema for 11 years and only found out 6 months ago that i could help and the help i had is excellent

[naominorthenellis]

Are you seeing someone through a local lymphoedema clinic in your area? They should be able to put you in touch with other people who are living with lymphoedema or advise of a local support group. At first it feels very isolating but this is a great forum for asking any questions or concerns you may have and you are most definitely not alone. NNE

[LymphSuppNetwork Partner LSN]

Hi Latisha

Welcome to the forum - there is loads of good advice on the LSN website lymphoedema.org including patient experience stories and advice form the experts.

[morganite]

your experience is not unusual. I had the problem for years but no one accepted it until it was so bad the legs were leaking excess fluid and I couldn't walk, I was put into compression bandages and it took 14months before I went to a clinic. in the mean time I lost my nursing career and couldn't get any financial help. However initially the treatment should be compression of some sort, looking after your skin and keeping limbs when your sat. I wish you well, Im now well controlled, wear compression knee lenthg socks which I get on prescription,. Don't give up there is a lot of ingnorance about this condition, WE ALL NEED TO SUPPORT EACH OTHER.

[Latisha in reply to morganite]

Thank you

[lovesradio]

Hi latisha I would just like also to welcome you and echo all the good advice given by other posters!

[Latisha in reply to lovesradio]

Thank you I see now that I'm not alone on this

[Ginsing]

Hi I too have it but in both legs it is something I find we have to look after our selves. I wear Farro wraps usually as my back is bad. At the moment I have tripple bandages from toe to knee.

Have you a clinic you are being supported by or some one who is looking after you?

I have a practise nurse who luckily has had experience in dressing legs so she helps and measure them for me. I see the hospital every 4 months .

Do see if there is a support group near you

Good luck

xgins

[Pepsidiner]

I had Lymphoedema during childhood but was not "diagnosed " until about four years ago, at the age of 61 after a lifetime of covering up my legs and arms. I have Lipoedema/ Lymphoedema in my legs and Lymphoedema in my arms. I also have hyper-flexibility and arthritis. This causes my knee joints to slip when I walk.I was assessed for a knee operation about five years ago and was told to attend a weight loss program. I failed to lose any weight during the six week course and careful dieting. I now know that i didn't stand a chance as Lymph fat cannot be removed by exercise and dieting. I never had my knee operation needless to say.

However, on a more positive note, there are some very supportive groups on Facebook that you can join for information and support. Look for the private groups as they tend to discuss things more openly. I belong to "Talk Lipoedema" . We share information in files, pictures, what to take to your appointments and so on, as well as adding a dash or humor and supporting each other. The support gained is wonderful !! .....Why not give it a try !

[kharimata]

Hey! I have le primary for ten years now in both feet. Recently -due to a small injury- it got worse in my calf and upper thigh….

It is off course depressing for a young ambitious girl. But I refuse to give up and you should too. I believe in the future we will benefit from novel therapies - other then the prehistoric time and money consuming therapy now available-. That is my hope to do everything I can to keep it from worsening in the mean while.

Some tips: don't gain weight: go swimming (tried all kinds of sports but this one is the best for lymphedema and weight loss and less risk of injuries (which is no good at all for lymphedema!).

eat healthy: i don't eat meat, and avoid processed food like bread. I eat lots of vegetables, preferable green food and cabbage family food. I juice a lot: green again: celery with spirulina , lemon juice, cucumber en flat parsley. It is a lot of work but I start the day with this, feel healthy and want to keep it that way. It is good for your immune system (which is the lymph system), hormone balance and water problems …

Go to the physiotherapist for manual lymph drainage and wear your stockings to keep the result.

The early it is, the more result. When you leave it like this, it will harden and not go away anymore.

Be aware that your immune system is not working well in lymphedema areas. Be very careful with bites, scratches and sun burn… this might cause infection and it might worsen.

Please don't let all of this drop you in a bad mood… It will be hard but try to get a 'habit ' or a daily routine in this and focus on the nice things….

You are not alone in this and fortunately we live in better days for lymphedema help!

Good luck

[dorih77]

Have you been in Belgium for lymphedema surgery?

[fredrickkimama]

Am a newly diagnosed case of lymphedema right leg and foot,

kindly advise and help me.

Fred.