questions

ziggypop

I have mild lymphedema - my index finger is swollen all of the time, sometimes (especially when I do yardwork or something where I am using my hand a lot) my hand gets swollen too - not a lot, but enough that the knuckles sort of fade out). I've been seeing a PT & she wants me to wear both a sleeve and a glove always during the day. This seems like such a huge thing to prevent what might never happen - also when I wear them, the swelling seems to get worse not better. Any suggestions? I'm terribly sorry that so many people have to go through real awfulness dealing with this - my situation is minor so I feel a little ashamed about eveb asking - just don't want to go through something unnecessarily.

Thanks.........

Kicks

See A CERTIFIED LymphEdema Therapist - not some PT.  There is so much more involved than just "getting a sleeve" when dealing with LE.  Among things involved is that not all can use the same level compression in their garments or fit can be wrong.  For me, I have to have light compression as heavy makes it much worse.  Also have to have custom garment as off the shelf will not correctly fit me - especially hand as my fingers are somewhat webbed.

carol57

ziggypop, it's been said that the highest risk women for developing advanced LE are those who already have minor LE, so it's great that you're taking your minor LE seriously. I agree with Kicks on the PT credentials...does your PT have special LE training? If you've been poking around in this forum, perhaps you've seen links to stepup-speakout, which is an online resource created by some of the wonderful women here. If you've not discovered it, here's a link to the page that explains how to find a qualified LE therapist: http://stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm and here's their page on how to know if your sleeve/glove fit properly: http://stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

Swelling in your fingers sure does signal a need for a compression glove, but as Kicks experienced, sometimes off-the-shelf garments do not work and you need a custom fit. If your swelling worsens after wearing the glove, it can certainly mean that your fit is poor. As for the question of wearing a glove and a sleeve all the time, that's where a truly experienced LE therapist can help you decide what's best. The sleeve can be an important part of your hand treatment, because its gradient compression helps make sure that the fluid trapped in your hand does not get subsequently trapped in your arm. I know several women whose LE is only in the hand, and after some time spent doing trial-and-error experimenting, they wear only the glove during the day, but they wrap the arm + hand using LE bandages at night; or sometimes night wrapping is so effective that it buys them a garment-free day. But it's best to do any such experimentation while staying in touch with a qualified therapist.

My LE is minor, too, and fortunately not in my hand. I rarely have visible swelling of my arm, but oh my, can I ever feel the effect of the LE, which is a heavy, achy and sometimes burning sensation. Give some thought to how your arm feels, because even if you're not seeing swelling, and the PT may not have found it with a tape measure, you can have up to 30% added lymph in your arm without any visible sign of LE. If your arm has Stage 0, or latent LE as this is called, you certainly want to treat it, including compression, to keep it from progressing! That doesn't necessarily mean you'll be in compression all day every day; I wear my sleeve when I'm particularly active, and when flying, and when the arm is simply bugging me a lot. I am always looking over my shoulder, so to speak, checking for any hint that the LE is progressing so I can step up my compression use if needed, because I know I'm fortunate to have a mild case and really want to keep it that way.

Hope that helps! And please never hesitate to ask questions here. Minor LE or well developed LE, we're all in this together and the collective experience of the women in this forum is (in my opinion) ten times more valuable and useful than what most of our medical providers can tell us.