Hi my name is Annette .....I live in the New York area....I am new to this site.....I have lymphedema in my left leg ...

[Dojo2927]

I am looking for some information on how some of u deal with their lymphedema n what I do to keep the swelling down......I have the thigh high stocking n the reddi wraps...( the thigh wrap keeps falling down.......if any one has any information I would greatly appreciate it.....

[AnneBury]

Hi. Welcome to the site. I have lower leg lymphoedema in both legs/feet. I have made to measure knee length compression stockings and toe stockings. They are provided through a London hospital and come from Germany. Many years ago I had multi layered bandaging and that reduced my swelling by 2 litres, between both legs. I have maintained that loss through wearing the compression stockings. Also good weight control and exercise have helped. There is an excellent UK charity the Lymphoedema Support Network. Have a look at their website. I am sure others will add their ideas - bit difficult for me as I don't know how things work in the USA. I hope things work out for you.

[Dojo2927]

Hi Bigleg ...I'm using Ready wraps from Solaris n the stocking that comes with it......I'm not sure if u need more infor.....I got this information from the package the wraps came in.....the blk stocking that comes with the wasp are called silver liner.....I want to Thank U for taking the time n helping me.....I'm so glad I found this site.....cause for the past year I felt like I was the only person that had lymphedema .......silly I know......but it's the truth.....: )

[Dojo2927]

Hi Anne Bury......thanks for taking time n giving me some infor......but can I ask I a question .....what kind of exercise do u do......I'm not over weight.....but I know with the lymphedema u have to be careful on what u do......I do swimming about three times a week...n I try to walk daily......but when the weather is bad......I do do anything....so if u can pass along some of the things u do.....that would be great

[AnneBury]

Because my lymphoedema started when I was a child and I didn't have a diagnosis for many years I have always done whatever I have wanted to do but I am not a sporty type person so that has never been extreme. These days I go swimming and do pilates (fairly easy pilates as I am useless at it!).I go line dancing three times a week and that is brilliant exercise. My challenge for any sport/ activity has always been footwear. The most difficult has been skiing because of the compression of the boots on my swelling. If you are looking for exercise to do at home how about something like a dance DVD?. I am aware that aggressive exercise is to be avoided but I would think that something like gentle Zumba should be good.

[Dojo2927]

AnnBury....thank u so much......I think I will try the Zumba....Wish me luck......lol

I'm so,happy I found this site..........

[AnneBury in reply to Dojo2927]

Good luck, Dojo. I see you have made a contact in the USA which should be a great help for using the US health system.

[bikerchic]

Hi Annette, I'm Mikki and I live in Florida. I've had lymphedema in my right leg for 7 years, following radiation therapy after my cncer surgery. Lower limb lymphedema is especially difficult to deal with. I use JUZO compression stockings, thigh high. They are much easier to put on than JOBST. I use 30-40 compression (mmhg). I also purchased a pneumatic compression machine that I use at night. It really helps the swelling. I also watch my salt (sodium) intake, as that can increase the swelling. Let me know if you have any other questions. If you want to email me directly, you can at [e-mail]. Most of the people on this sight are from the Europe (UK). It's good to find someone from the USA.

[bikerchic]

Also, if you want, I can provide you with a website where you can purchase the compression stockings at a discounted price. Also, they do not charge S&H.

[Dojo2927 in reply to bikerchic]

Biker chic........oh my god thank u so much.....I'm in Florida right now......but we r moving back to New York.......in july.......I will most differently email mail.......once again thank u

[bikerchic in reply to Dojo2927]

You are so very welcome. it will be nice to share info with someone in the USA, as well.

[Lynora]

Hello dojo2927 and bikerchic - have you both come across lymphedemapeople.com/ - it is an amazing resource - the brainchild of an amazing guy called Pat O'Connor.

Annette - when you go swimming, after swimming lengths doing a variety of strokes, incorporate about 12-15 minutes of fast walking in the water - feet on the bottom, water up to your neck (if you can manage it without drowning!), and walk using your arms and hands as if you are marching - it won't be easy, but it is the massaging effect of the water on the skin that is having the most benefit!!

[Dojo2927 in reply to Lynora]

Thank u lynora......I will give it a try........I'm willing to,do anything, to get the swelling down......my goal,is to,get back into my jeans.....

[janeA]

Hi Annette, Anne, Lynora and BikerChic!

My name is Jane. I am replying here because I'm interested to meet some people who have similar problems and learn what they are doing. I am a 53-year old woman from Northern California. I developed leg, pelvic and lower truncal area lymphedema last summer, not long after uterine cancer surgery. (I had a large number of lymph nodes removed.) The swelling started on the left side, and by now I've got it on both the left and right sides. I was finally diagnosed this past February (2014).

I finished a hard 4 months of chemo last September and was looking forward to having fun this summer, but am struggling now with this issue and severe peripheral neuropathy. I'm hoping that if the pain decreases over time, the compression garments will be easier to bear.

I have been a lap swimmer for many years, but since my swelling increases after swimming, do not yet feel comfortable doing that. Am wearing 30-40 compression thigh-highs, doing exercises and using a pump every couple of days if not every day.

Am a little blue, but hoping to find my stride again -- whatever that might be! I am happy that I can work from home and have the luxury of being able to change positions a lot (standing, sitting with feet up, walking, etc.).

Would love to get to know any of you just to keep comparing notes!

jane

[beechgirl]

Hi Annette , We live 22 miles from each other according to the new way of finding those close by that this group offered. I live in Douglaston, NY. on the border of Queens/Nassau. I have lymphodema of both lower legs. It took years to get a diagnosis and by now I feel like I'm educating my doctors. I am in the middle of a flare up for the first time since I had it under control. I would love to talk to someone who really understands. I worked as a registrar in ER's and admitting for over 20 years and I still had difficulty finding the help I needed. It can be very frustrating. The older doctors (50+) say they were only taught about the lymphatic system for 20 minutes in medical school. Thankfully now that is not the case. My nephew is in medical school and it was a young dr that made the diagnosis. I am 58 years old and no longer work due to my illness. I can't be sicker than the patients. lol Anyone who would like a pen pal.....remember that? Please don't hesitate to write.

[AnnCarole]

Sorry for the delayed response but I just recently found this site. I'm also in the NYC area and have leg lymphedema from radiation. I use the Wi exercise program It's a CD for the TV. There are all types of exercises on this and you can do it at home. There are exercises from very moderate to very strenuous. I gained about 40 lbs in 4 months when this horrible swelling hit me and I'm having a terrible time trying to lose the weight. I wish you the very best.

[Dojo2927 in reply to AnnCarole]

Hello ann carol....

Thanks for responding back to me.... It's great to have someone close that can relate to me.... My friends try. But they don't have a clue what it is like to live with lymphdema..... Looking forward to talking to u.....

Hopefully we can help each other