Lymphedema Questions

Doris1933 · March 2012

You people are so knowledgeable on this message board and I have learned so much from reading your blogs. I have a question concerning the lymph in my hand (and arm probably). My right hand has very mild lymphedema. In January I got my first compression garments. I have a Juzo Class 1 Size 4 glove and a Juzo Class 1 Size 5/xl sleeve. At first I wore them only a few hours a day, then gradually wore them all day a few days a week. Then for several weeks I haven't worn them at all. I seem to keep the puffiness down during the day with a little MLD and no garments. I've kept measurement records and recently have stopped because they never vary more than 1/2 to 1 centimeter. The reasons I have stopped wearing them are: (1) the glove irritates the delicate skin on the back of the hand even with starch powder and also cream - do they make a softer glove?; (2) when I first put the glove on, it is snug but in just a few minutes, it has folds and feels too big; (3) recently, a few times when I took off the glove, my hand puffed up rapidly and it took a while to get it down again. What should I do?

OK, here is my concern: At night the fluid goes away and I wake up with very wrinkled hand and arm that looks almost the same as the good left hand and arm except for the wrinkles. Are the wrinkles created because the skin was stretched from the fluid - will they ever go away? Where does the fluid go - does it find another route and it gets processed through to the kidneys? (Is that why I have to"go" 2-3 times during the night?) After I am up and around for an hour or two the fluid is back again. Is this the same old fluid that was present the day before and drained during the night, or is this a new batch of fluid overflowing into my hand? It's not that much and a casual observer does not notice it, but the hand is usually a little puffy until I take time to sit down and massage it. This cycle is repeated every day. Sometimes my hand looks entirely normal.

I'm sorry to be so detailed, and I thank you so much for reading this and hopefully give me some suggestions. I've especially been wondering about the same old fluid being sloshed back and forth.

Thank hou so much for listening...................Doris in West Memphis

Outfield · March 2012

Doris, I don't have answers for all your questions, hopefully the truly knowledgeable folks will be along shortly.

I got to the point measuring my arm that it never varies from day to day. That, to me, is well-controlled. I can feel swelling before it's measurable, and I'm so skinny I can also see it because my veins are less obvious. 1cm would be a lot for my arm, which isn't very big around, to change. Not knowing how big your arm is, it's hard to know what 1cm means. I guess what I'm saying is I don't think numbers like that taken in isolation are worth very much.

Untreated, which thankfully wasn't for too long, my lymphedema was consistently best in the morning. That makes sense. Fluid in an arm lying on a bed has a more advantageous pressure gradient to return against than fluid in a dangling arm. It doesn't have to flow uphill. Elevating the arm in bed was even better.

Lymph is fluid that is normally always be in motion, circulating in the body. The swelling that recurs in your hand after you've been up a while is almost certainly new fluid that has been brought to your hand by your circulation, then can't make the return trip so starts to accumulate again.

I don't have a good understanding of the swelling after or during compression that you are describing, but I know other people on this board have experienced similar things. Hopefully some of them will have ideas for you.

I have a super-soft Barton-Carey glove. It's silky. I don't wear it often - don't often need it often, and I don't think it will be durable. My fitter says there are several companies that make similar products. I ended up with it because they manufacture them a different way than Juzo that is more able to accomadate the metacarpophalangeal joint of my thumb, which is huge from an old injury.

I am so sorry you're having to deal with this. Do you have a good fitter?

kira66715 · March 2012

Doris,

Outfield gave a great explanation.

I also tend to avoid compression, as it tends to trap fluid in my hand. The solution for me was to get a custom glove, a Juzo that goes to the mid-forearm, but I tend to wear it intermittantly. There was a time, when I flared a few years ago, that I was primarily in finger wraps to control hand swelling as the gloves were useless.

As the control of your LE improves, you will possibly need less compression, but if you're still visibly swelling, I'd suggest going back to your fitter/LE therapist and working with them for a better glove/sleeve combo.

Couple of questions: do you have arm swelling? If not, the sleeve can push fluid into the hand.

Lousy compression traps fluid, and that swelling of the hand after the glove comes off--it's something I've experienced--and it suggests fluid trapping.

Great for you that you don't swell at night and that everything goes down. The wrinkles are from stretched skin over an area without a lot of fatty tissue benigth it--the "dorsum" of the hand. Our arms are full of fat/muscle and don't tend to ever visisbly wrinkle, although when they have retained lymphatic fluid, they swell, feel full, look lighter and feel "dense".

Compression garments and good fitters require trial and error, and right now, it sounds like error, and time for a trial. And you may not need them all day long--it sounds like you're doing better without them right now, as they're trapping fluid.

I'd suggest a call to the LE therapist/fitter.

Hope that helps

Kira

Doris1933 · April 2012

Thank you, Outfield and Kira, for responding to my post. I'm so glad to learn that the fluid that recurs in my hand after I get up is new fluid. I don't think I have arm swelling - its measurement never changes.
I compared right hand measurements against my good arm and the right hand never varies more than 1/2 to 1 centimeter more than the good arm. Also, something I don't get, is that when my hand looks a little puffy, the measurement is the exact same. It's so frustrating to me when I don't understand how things work. You've cleared up a couple things for me, and the internet has helped a lot.

I understand Medicare won't pay for another set of compression garments until next year (10 mos. from now), and neither will Aetna. Not sure about Aetna, I need to call them. I'm just going to stop wearing them for a while - that's what my surgeon and onc said I should do anyway. Besides, my fitter doesn't seem to be very accomodating and won't let me try on any glove/sleeve except the one she ordered for me. I think I'll try someplace else. My therapist and I communicated by phone and e-mail and after about a month she said I didn't need to call her anymore because I didn't have enough swelling. I feel somewhat abandoned. Thanks soooooooo much for helping me. Doris at West Memphis

Doris1933 · April 2012

Thank you, Outfield and Kira, for responding to my post. I'm so glad to learn that the fluid that recurs in my hand after I get up is new fluid. I don't think I have arm swelling - its measurement never changes.
I compared right hand measurements against my good arm and the right hand never varies more than 1/2 to 1 centimeter more than the good arm. Also, something I don't get, is that when my hand looks a little puffy, the measurement is the exact same. It's so frustrating to me when I don't understand how things work. You've cleared up a couple things for me, and the internet has helped a lot.

I understand Medicare won't pay for another set of compression garments until next year (10 mos. from now), and neither will Aetna. Not sure about Aetna, I need to call them. I'm just going to stop wearing them for a while - that's what my surgeon and onc said I should do anyway. Besides, my fitter doesn't seem to be very accomodating and won't let me try on any glove/sleeve except the one she ordered for me. I think I'll try someplace else. My therapist and I communicated by phone and e-mail and after about a month she said I didn't need to call her anymore because I didn't have enough swelling. I feel somewhat abandoned. Thanks soooooooo much for helping me. Doris at West Memphis

Binney4 · April 2012

Doris, I'd say you're VERY abandoned. Frown You need a "second opinion." Here's information about how to find another well-trained LE therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

It's a real shame that we have to do so much of this for ourselves. Sadly, most of us have had to face the same kind of abandonment you're dealing with, so we for sure hear you on that. Please do keep working on getting the help you need and deserve. It's a slog, but worth every bit of it when you finally connect with the right providers.

In the meantime, we're sure here for you; tell us how we can help!

Hugs,
Binney

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