Lymphedema Issues

[vlcarr]

I developed lymphedema during radiation in 2009. It's been a long and frustrating journey for me but I am able to keep it under control. I use compression sleeves, gauntlets and gloves consistently. I started having what felt like nerve pain in the affected arm. I spoke to my doctor about seeing an acupuncturist at the intergrative health center that is part of the hospital. She said although it goes against everything we know about lymphedema she fully trusts the doctor so right now I'm going weekly.

I've had many many sessions with lymphedema therapists and even pay myself to have a certified therapist work on me on a regular basis. I am not wearing compression all the time anymore. I measure my arm frequently. Since I've backed off compressin the nerve pain has greatly improved. I'm not saying the acupuncture is curing it, but I've had some pretty amazing results with pain relief related to surgery.

I would recommend seeing a certified therapist and discussing the problems with your sleeve. They are no fun but you will get used to them but maybe you don't have the right size. I've had problems with getting the wrong size and if I had not checked I would not have known. I've even had the box say one thing but the tag on the sleeve didn't match the box.

I also have a Flexitouch machine that I use pretty much every day. I watch and have learned to read my body better but it's taken a lot of time and energy.

I feel I could go on and on. Feel free or send me a message if you would like to talk sometime. I would be happy to share my experiences. I think the treatment for lymphedema could benefit from some personalization as well. Over time you should get a better feel for what works for you and what doesn't.

Were you given a night sleeve? These can be very helpful as well.

Best wishes to you and hang in there.

[Jackie07]

I developed lymphedema in the right arm during chemo in fall, 2007 due to a tiny (invisible) bug bite to the finger (which developed into cellullitis - was put on IV for it) while picking figs in the back yard. At first the physical therapist wrapped my arm (and showed me how) with three different fabrics (the middle layer was soft cotton). After several weeks, I was fitted with a set of compression sleeve and glove.

I had obtained the third set of sleeve and glove earlier this year (was charged the full price even though it was supposed to be a replacement set because the previous one was a terrible fit) But I'm happy to report that I have not had the need to use them for many months now.

(Altogether I've had 11 lymph nodes out and cancer cells were found in two of them.)