Just a few hours, see how you get on?

hymil · February 2011

I'm looking for information and advice here please. I know when they diagnose LE and give you a compression sleeve, the standard seems to be that unless you hit problems of restricted circulation or signs of possible infection, you wear it all day, every day, (except in the pool, when the water compresses you instead) but not usually at night. So if you are told, for practical reasons, well maybe just try the mornings, or, let's see how you do without it most of the day for three days a week, do you really need to wear it all day, yeah, sure why not wait till i get cellulitis and then worry? Maybe i'm being too black and white here, but getting really a bit confused. It's to prevent deterioration, right? So we don't know how much is too much, untill we hit not enough? By the time you see my arm getting worse, Oops well that wasn't quite enough - but the damage is done.... I didn't wear one last month, so i don't NEED to wear it now?? Like, so would one hour a day be enough? Could I take it off for a few hours in the middle of the day and then bung it back on later?

Or should I be more assertive and saying No I am meant to use it 7am-11pm seven days a week. Whether anyone else can measure symptoms or not. Any views?

kira66715 · February 2011

Hymil, everyone's need to compression varies: the gold standard is to reduce swelling by wrapping or night garments, and then retain the reduction with compression during the day.

Compression works by increasing interstitial pressure and bringing more lymph into the vessels.

Some of the women on these boards only wear it when exercising, some only when their LE is acting up, others will swell if they take it off for a short while.

Some women on these boards do night time wrap/garments--and others don't need it.

So, just to really confuse you, 100% compliance is wearing compression while awake, but depending on your lymphatic system, you may not need that.

Do you notice that your arm swells if you don't wear compression all day?

I'm going to ask Binney to explain this better--and correctly.

Kira

Binney4 · February 2011

Hymil, I don't know that I can add anything. When you're going to experiment with backing off on compression, it's a good idea to start when everything is in control and take it off for an hour or so at first, at a time when you're not overusing the arm. Try it for a few days and then increase the time. Just wearing it, say, three days a week, seems sort of indiscriminate -- swelling usually depends on what we're doing with the arm more than the day of the week. Just for instance, I take mine off for a few hours in the evering if I'm not going to be doing anything strenuous. Tonight I have a class, and I'll have to take notes by hand, so even the compression garment won't be enough and I'll be wrapping my arm before I go.

Basically, we have these tools (wrapping, garments, MLD, exercises, Swell Spots, and so on), and we each learn how to use them effectively as we live with this stupid condition. Slow and easy just makes sense.

Keep us posted, and be well,
Binney

hymil · February 2011

So I'm hearing, start from full on and then very gradually consider pulling back? Thank you both - I can see it's more of an art than a science, and a very imprecise art at that! I got a small toolkit, only exercises and sleeves, for what is deemed to be a small problem, and Yes i have seen very bad arms and legs, mine looks basically normal alhtough it doesn't feel right. But I aim to keep it that way, not precipitate trouble by reckless behavour. I could have these arms another thirty-plus years yet, I would like them to work!

CarolT0214 · February 2011

Hi everyone......I am new to this side of things. I just received my glove/sleeve on Friday. I managed to wear it for about 5 hours before I couldn't stand it anymore. Saturday I made it to 12 hours....not sure what I will do today. I have noticed though, that it seems to be pooling on the back of my hand. Is that normal? The sleeve appears to be leaving an indentation at my wrist....so today, I put the wrist of the sleeve over the end of the glove to see if that helps. I don't see my PT until 3/10.....but I have emailed her for advice as well. Any information would be helpful as I try to figure this out!

Thanks so much!

Carol

kira66715 · February 2011

Carol, you don't want to push fluid up to the hand--and unfortunately, it happens all too often. I'd advise holding off on the sleeve/glove combo if it's doing that.

The wrist indentation is common as well, and wearing the sleeve over the glove can help.

But you sure don't want to push fluid into the hand--let your PT know what's going on. Poorly fitting compression can cause problems.

Here's a link to proper fitting of sleeves and gloves. Sometimes even well fitted garments can be problematic.

http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

It takes some time to get it right, but a good fitter and a good PT can help.

Let us know how it's going.

Kira

CarolT0214 · February 2011

Thank you, Kira.........I expect to hear from my PT tomorrow and will also call the place where I received my sleeve/glove. I took them both off this evening and I won't put them back on until I know it is safe. Hopefully I can get this taken care of quickly as I am flying out of state next month.

I'll keep you posted.

Thank you,

Carol

CarolT0214 · February 2011

My PT sent me back to the place I got my glove/sleeve. Now they are going to order me a dorsal pad to put additional pressure on the back of my hand to see if that helps. I am wearing the glove but not the sleeve at this point. I can't seem to get any real answers from anyone (PT or glove/sleeve fitter) as to whether or not to continue to wear the glove/sleeve or glove by it self. It seems to be pretty much trial and error and it's up to me to choose what to do. Very frustrating to say the least!

Carol

Binney4 · February 2011

Aaaaaaaargh! Do-it-yourself lymphedema Yell !

DON'T wear the sleeve. You can try wearing the glove alone, but if it's not a good fit it'll continue to trap fluid in your hand. (On the other hand, if that's working for you it's a good interim measure -- but if it's working that would indicate the sleeve is a bad fit.) You can wait and try again with the dorsal pad, but the PT/fitter team still needs to deal with the wrist problem. Since they've essentially put you in charge of this INSIST on getting a fit that doesn't cause you any of this grief.

Until you can get this all sorted out an Isotoner therapeutic glove might be a better bet for your hand -- it'll keep it from swelling more but not create enough pressure to give you problems. They're not expensive, so maybe worth a try.

It's amazing, isn't it, how all this gets foisted off on us, the patients? Tongue out

You're not alone -- we're all here for you!
Binney

CarolT0214 · February 2011

Thank you Binney.....I appreciate your help and support. I am wearing the glove only at the moment....if it becomes a problem before I get the dorsal pad, I will look into the Isotoner therapeutic glove. I am sorry anyone has to deal with any of the stuff that we do...but grateful to have people with the knowledge to help when we need it.

Carol

BeckySharp · March 2011

Binney,

You mentioned Swell Spots. What is that?

Becky

hugz4u · March 2011

Been browsing this site for a while and couldn't help feel for Hymil. tisk tisk, I feel bad for you. Sounds like you have the ill fitting sleeve,glove senario. (check out my Saucy name to see how disappointed I am in sleeves) I too am frustrated as can be. I am now into my 2nd custom sleeve which won't stay up without glue and then there is the problem with bunching in the inner elbow and outer elbow(ouch, took it off and nearly gave it to the neighbours dog!) I am in preventive mode and I believe the bunching causes a slight swell, certainly was irritated.

Told my fitter than I can't do that 2nd sleeve either and can't wear it anymore. Waiting for her reply. I have a silky material sown into the inner elbow part but still, the nagging, grinding, gonna kill my mother pain! Any Ideas and nice knowing you SWELL girls!

Have to run but will check back for any responses tommarrow. Hymil we need to wear our sleeves or our arm is going to blow up like the good year blimp!

Binney4 · March 2011

Becky, hi,

Swell Spots are foam-chip filled fabric "bags" that are stitched in a pattern to match the direction of lymph flow. They're made by both Solaris and Jovi-pac, and some therapists stitch up their own. Here's a page about them and how they're used:

http://www.stepup-speakout.org/foampadding_swellspots_lymphedema.htm

Sickly, welcome! Sorry your sickly sleeves have brought you here, but glad you found us. There are lots of garment makers, and unfortunately the hunt for the right one for you can take a lot of trial and error -- maddening! Tongue out You're right not to wear a sleeve that causes you pain, because pain makes our bodies respond by sending more lymph fluid to the area -- definitely not what you want!

By "preventive mode" do you mean you don't have lymphedema and are using garments to help lower your risk? If so you might want to check out the Juzo Dream Sleeves or the Solidea Silver Wave. [For some reason that name always reminds me of the name of a roller coaster at an amusement park Woo-hoo, I want to ride the Silver Wave!] Both are lower compression/containment and would be unlikely to cause you any pain at all, but they're not custom.