Share this:
jilly

LYPMHEDEMA!!!!!

Posted by @jilly in Cancer, Jan 16, 2012

HELP! I have been looking around the site and there is very little discussion or info. about lower extremity lymphedema! Mine is a result of surgery, i had a DVT in my left leg from the groin to the knee . My leg is completely shot! the skin is rough, thick and scaly, also it is larger than my fight one! I also have had numerous incisional hernia repairs and a full hysterectomy as a result of uterian cancer, all happening after tthe gallbladder surgery which caused the dvt. I now have abdominal lymphedema also. I have gained 120lbs since 2007 and am on a 1300 cal. diet! Nothing seems to help w/ the weight issue since i can not exercise. I also had PE"S in both lungs & my lower right leg in 2007. I am getting ready to start treatment w/ the flexitouch machine, hoping this will help! It would be nice to share thoughts with someone else who has the same challenges i have!

Tags: mental health, Skin Conditions, Other, Cancer

kathys

Posted by @kathys, Feb 2, 2012

Hello Jilly πŸ™‚ 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 πŸ™‚ 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 πŸ™‚ and I do hope that you are doing okay and learning how to maintain and keep your swelling under controll. Kathy S.

jilly

Posted by @jilly, Feb 10, 2012

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!

kathys

Posted by @kathys, Feb 10, 2012

Hello again Jilly, so nice hearing back from you πŸ™‚ 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!!!

jilly

Posted by @jilly, Mar 4, 2012

howdy! πŸ™‚ 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:)

okami0ninja

Posted by @okami0ninja, Feb 12, 2012

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.

kathys

Posted by @kathys, Feb 16, 2012

Hello πŸ™‚ 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!!!

okami0ninja likes this
okami0ninja

Posted by @okami0ninja, Mar 3, 2012

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

jilly

Posted by @jilly, Mar 4, 2012

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!

Help4rmAngels likes this

Please login or become a member to post a comment.