Lower limb lymphedema

Hello Jilly 🙂 I too have lymphedema in my right leg. My lymphedema showed up 2 years after I had a complete hysterectomy. I did have a lymphnode biopsy done during the surgery, thus....my lymphedema. A great source of information comes from The International Lymphedema Society. You can google this and find out more. I believe I found this website by going into Mayoclinic.com and looking up Lymphedema. A great source of information as well. I live in California and I found a fabulous physical therapist who specializes in Lymphedema. She has taught me how to do my own Manual Lymph Drainage massage by going to her clinic. She is in Sacramento and her business is called Motion Recovery, her name is Amy Flynn. I am sharing this with you because if you haven't been able to find anyone (therapist) maybe by calling her, she could help to point you in the right direction. Also the website that I referred to you above. I have been living and maintaining my lymphedema since 2007 or 2008 can't remember now which year it was. Anyway with learning more about this condition and trying the best that I can, I have and am learning to keep life as normal as possible and take this one day at a time. I hope since you created this post, that you have found out more about this condition. I wish you the best 🙂 There are many of us such as you, that have the same condition, you are not alone. Keep in mind that Knowledge is Power. The more we can learn about this condition, for our maintaining the quality of every day life, the happier we will be. God Bless You 🙂 and I do hope that you are doing okay and learning how to maintain and keep your swelling under controll. Kathy S.

Hello Kathy, Thank you so much for taking time to reply!!!! I live in Indiana and there are few who do lymphedema here! i am fortunate enuff to have had 2 wonderful ladies helping me w/ therapy, my 1st one helped save my leg, but after 2 yrs what she did quit working, i stopped responding to compression, then in 2008 i was told that i had uterian cancer! After my hysterectomy and incisional hernia repair # 3 i kinda gave up, in 2011 i was put in touch w/ my new therepist she discovered that my lymphedema had progressed to my abs even after her doing massage therepy i was still slow to respond, thats when she recommened that i get the flexitouch pump for home use! it took 3 months of argueing w/ insurance but finally it got approved, i have only been using it since Jan. 3 2012 but already am noticing some improvement! At times i really struggle with the emotional side of things! i went from working , riding horses, running w/ friends to totally disabled!!! i am on warafrin for life so that cuts horses, andi have gained 135 lbs which is not helping! somedays my fluid build up is extreme enuff to make daily chores impossible! Do u deal w/ cellulitis also? its rather a common occurance for me. Again THANK YOU for taking time to chat! May God Bless And Keep You Safe! Jilly:) ps i highly recommend the flexitouch pump by tactile systems!

Hello again Jilly, so nice hearing back from you 🙂 I do understand how different life can be and the adjustment to just learning to how to do things different. You sound like you have been through alot. I am so happy that the flexitouch is working for you and yes I do know of this, but as of now I do not own one. Maybe in the future I will look into one for me as well. One day at a time right? Are you able to get some exercise? Hopefully you are and this will help with your weight and always helps circuation and fluid retention too. Sounds like you have some good support in your life. God Bless you and have a wonderful weekend!!!

Hello. I am 17 years old and have had Lymphedema since i was 10 months old. I've been living with it my whole life and it is nice to know that I am not alone. It's hard to talk to my family or friends about it because no one can relate. Even if it is not much, it is nice to know you are not alone. I have never used a compression machine. I excercise daily and am on a 1000 calorie diet. I am constantly watching my weight and always have been. I wish you the best with your Lymphedema.

Hello 🙂 so nice to read your post! Yes there is something "wonderful" about knowing there are other people out here that do understand. So...you have had this your whole life...sounds like you are being very responsible and doing what is best for this condition, good for you!!! Reading your post has brightened my day, you are 17 and have your whole life ahead of you. By doing what we are suppose to do, we too can experience "quality of life" One Day At A Time right? I am sending you hugs and smiles today okamOninja I hope you are having a wonderful day!!!

Thank you! I hope your day is even more wonderful!

Bless Your Heart!!!!!! Thank you for replying! I totally get it about knowing you are not alone! I have just recently changed my entire eating habits and it seems to be helping!!! ABSOULTLY NO SODA and as little processed foods as possible, in one week i have lost weight(water) and feel sooo much better, i have also cut out bread completely and limited amts of taters! I drink mainly evian and have 1 cxup of green tea w/ stevia for my caffeine fix! lol Iwas drinking a 8pk of small bottles of diet coke daily! my leg is feeling stronger and alot of the discomfort is subsiding! I don't refer to this as dieting it is a lifestyle change! My hubby & i are both diabetic, he is on meds i am not, this is another reason for this change hopefully he will be able to wean off his meds in 3 months! There is a hormone called leptin which i believe is responc. for my not losing weight, i don't know if weight is an issue for u ?? you might what research about it or ask yoyour dr. when i was on a 1300 cal. diet i gained! soooo frustrating! Good Luck!!!! I'll be praying for you!

howdy! 🙂 hope this finds u well! i have stumbled onto a new take on food! while researching how to help my hubby get off his diabetic meds i have come across the book THE 30DAY DIABETIC CURE! Fab book its more of a lifestyle change then any thing, but in just on week i have noticed a difference! so we r keeping our fingers crossed! lolololol the flexitouch is helping but also causing some problems w/ my joints! evid. it aggrav. arthritis! yippy sippy! heehee! take care, jilly:)

thank you for the information..I do not feel so alone in this struggle.

@perry1 Tell me about your struggle, if you would? I have lower limb lymphedema, caused by failing kidneys and perhaps my multiple myeloma [undergoing chemo for that].

What have you done for your lymphedema, curious to see if it might be helpful for me! I limit the amounts of fluid intake everyday, and work hard at getting out for a walk or at least moving around, even when my energy level is not very high. A 20 minute walk at a slow pace is better than nothing! No carbonated drinks, as low sodium intake as possible.
Ginger