lymphoedema

Hi there. I am so sorry to hear you may have Lymphedema. I have it too and have had it for three years. Many people are mis-diagnosed, and I would recommend you to get examined at a hospital/clinic where they deal with Lymphedema. There are various tests to determine whether it is Lymphedema or something else. There are two forms of Lymphedema, Primary and Secondary, they are treated the same way.

The treatment of Lymphedema is made up of compression garments, Manual Lymphatic Drainage and skincare. The MLD is a gentle (and very nice) form of massage where the fluid is lead away from the affected limb. This is probably what you doctor is talking about. You can also get a compression pump to use at home. I advice you to get all the treatment you can. Compressionstockings are very, very helpful, I can not do without mine.

Have hope, you will learn how to manage this! There is a UK message board on www.uklymph.com. Also check out www.lymphedemapeople.com and www.lymphnotes.com.

I have a blog where I share my tips and thoughts about living with lymphedema. You are very welcome to check it out on www.lymphedemagirl.blogspot.com

Good luck.

PS: It can be spelled Lymphoedema (English) or Lymphedema (American).

I have a leg like yours but I also have cellulitis in it and top it off I have Plantar Fasciitis in the heel of the foot on that same left leg!!! There are times I wish I could amputate it....really! It has changed my life. They say it is a life long disease....then why does another Dr tell me it would be so much better if I lost weight? Would it go away? It's too big for a compression stocking but I have to put dressings on it every day really tight and they get totally wet no matter what. I don't really understand except that my lymph glands aren't carrying the waist fluid out of that leg. is that basically right? I appreciate input from anyone..

Ladyjack51

I have a leg like yours but I also have cellulitis in it and top it off I have Plantar Fasciitis in the heel of the foot on that same left leg!!! There are times I wish I could amputate it....really! It has changed my life. They say it is a life long disease....then why does another Dr tell me it would be so much better if I lost weight? Would it go away? It's too big for a compression stocking but I have to put dressings on it every day really tight and they get totally wet no matter what. I don't really understand except that my lymph glands aren't carrying the waist fluid out of that leg. is that basically right? I appreciate input from anyone..

Ladyjack51

Hi

I had bad Lymphoedema 5 years ago and was told to lose weight. After losing 5 stone, it virtually disappeared. Slowly the weight has crept back on so has the swelling 😔 I am back to compression stockings and shuffling along. So the answer is yes, losing weight really does make a big difference x

unfortunately, Laura, there's no way to drain the fluid out. They do sell pumps but hardly come with any high recommendations. There are good lymphedema therapists out there that will massage the leg and teach you how to wrap it. Typically lymphedema rarely goes away. I've dealt with mine for many years and have had terrible run ins with cellulitis infections on several occasions.

What I do for mine is, I try to stay as active as possible. Sitting only makes matters worst. I use garments on both legs. Usually I buy Juzo.. They aren't cheap. About 60-70 bucks on sale. You should be measured by a specialist or therapist that specializes in lymphedema treatment. I also use a Solaris Tribute at night (very expensive) and that helps with the drainage of fluids from the leg.

You can control it also by losing weight, eating healthy and staying away from salts. Keep your legs covered and protected from the sun and insect bites. Also stay away from hot tubs and over-exertion.

Hope that helps. There's no cure for lymphedema and usually caused by a blockage in the lymphatics that can't be located or identified.

Stay well and I hope you feel better.

Glenn