Compression Aggravating LE?

Options
Frill
Frill Member Posts: 311
edited October 2016 in Lymphedema

LE is so frustrating. I've talked (complained) about this before, but I'm starting a thread to come back to and report if I find some actual answer.

I feel like I'm doing something "wrong" with my LE if I'm not wrapping. My therapist decided to take me out of the compression garments because the gauntlet was definitely aggravating my hand. My thumb during the day, as well as my fingers, were just swelling out of the tops of it. The sleeve worked great for my arm. My arm responds fine to everything, actually.

Last night I did my FlexiTouch and wrapped, tried to stay light on the hand, and really lighter than I would normally everywhere. I woke up larger than I did beforehand. (beforehand, get it? lol...)

I see my PT next week. I'm going to keep doing MLD every night - Flexi, plus additional on hand. I know hands are a pain with fluid, this is just so frustrating.

· Share on FacebookShare on Twitter

Comments

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited September 2016

    Perhaps a glove rather than a gauntlet is the way to go. LympheDivas gloves have longer fingers (too long for me but probably just right for you) and are more comfy than other brands like Mediven & Juzo.

    · Share on FacebookShare on Twitter
  • Frill
    Frill Member Posts: 311
    edited September 2016

    Ohhhhh, I will ask my PT. I do have longggggg fingers, piano/guitar fingers, lol. Wouldn't that be wonderful if that did it?

    When I wrap with gauze only on just my hand (not gauze, but Moliwhatever) it works, but it doesn't do anything for the rest of my arm. It also does *not* work during the day. So if I sleep with it, I will wake up with shrunken pretty fingers, but if I try to wear it during the day, sausage city.

    Water consumption doesn't seem to have any effect. When I was drinking a gallon a day I was at some of my biggest measurements. I'm not shutting the door on water. I need to get back to usual in compliance quantities back at healthy weight and see what that does.

    · Share on FacebookShare on Twitter
  • SusanRachel
    SusanRachel Member Posts: 68
    edited September 2016

    I have a lot of issues balancing the amount of compression in my hand vs my arm also. I can't do a gauntlet because my index finger swells terribly, so I am stuck with gloves. Try different brands. There are many and they all fit differently. MLD has never worked for me, so I can't help you there. I've tried multiple different "right" ways of doing MLD and my arm just stays the same. I share your frustration. I wish my arm would respond when I do what I am supposed to do.

    · Share on FacebookShare on Twitter
  • floaton
    floaton Member Posts: 181
    edited September 2016

    Frill, I struggled a lot with my hand for a while too. It's still tricky to wrap it right and sometimes it works and sometimes it doesn't. For various reasons, I don't do it very often, and am managing ok. However, I always wear compression during the day. I had many issues with my hand backing up until I started wearing a custom one piece glove/sleeve combo to eliminate gap/double compression. I can occasionally get away with a lymphedivas sleeve and a haddenham microfine full finger glove (there's 2 finger lengths available on lymphedemaproducts.com). The divas gloves unfortunately don't work for me as they bunch up oddly over the day, but they seem to be nicely made.
    · Share on FacebookShare on Twitter
  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited September 2016

    I’ve asked LympheDivas to offer a “small” or half-finger option for their gloves, since there are size options for gauntlets & sleeves. No word yet.

    · Share on FacebookShare on Twitter
  • Kicks
    Kicks Member Posts: 4,131
    edited September 2016

    You might have the wrong compression level. I have to have low compression - any higher causes problems. Also for me gauntlets are bad.

    Higher compression levels cause swelling for me.

    Because of being syndactly (somewhat webbed fingers), I have to have custom gloves (gauntlet do not work). Also I have to have custom sleeves as OTS in low compression available do not fit me, I have to have custom sleeves.

    My night sleeve foes have a gauntlet hand but I have to wear an opera length Isotoner glove under it.

    We are each so unique in how our body treats us - just have to learn what works for us individually - not what some else says it 'right'/'the way to go'.

    Be sure you are working with an LET (someone who is an LymphEdema Therapist) - not just PT/OT who claims they 'know everything' about LE.

    · Share on FacebookShare on Twitter
  • Frill
    Frill Member Posts: 311
    edited September 2016

    Kicks - thank you. I'll talk to her this week about switching the sleeve. And I have webby fingers - well, it looks like it, maybe I need to compare. What you and ChiSandy are saying about the glove vs. gauntlet makes sense. That's one thing I'm surprised my therapists haven't tried. I don't know if the hospital doesn't stock them, or what. That just doesn't seem to make sense.

    I have asked about custom sleeves, but their position is that until we figure out what works and how to get the swelling down in my hand long term, doing anything custom would be pouring money down the drain because it might not fit.

    I do know that they are LETs. When I showed my initial PT my swollen hand, it was a bummer, because I had to switch therapists because she said I had to be with a special LET. The ladies I have now, one went to the Vodder school, and another went to - I can't remember the method, but there's some good natured ribbing occasionally about what's "correct."

    A major problem is insurance not consistently approving PT visits so that we can figure what works and stabilize me. They will literally approve one visit, then three months, then another. My last 8 day cellulitis/mystery infection got me 7 precious visits approved.

    I am noticing better and better results from the FlexiTouch. I am able to get my ring almost all the way on my finger (not wearable, but until recently I couldn't get it over my knuckle, so major progress). Not doing any compression after that though sort of feels like I'm wasting the effort. I am getting fluid out, though.

    I need to get some physical activity back in my world, too. Before all this I worked out every morning. Of course the first workout I picked to do was full of downward dogs and pushups and the LETs were like - NO WAY. I've lost weight though, and maybe if I can get a lighter compression sleeve, I can get some yoga in. In the meantime, walking, just walking would be a great start. I have never been this inactive in my life.

    · Share on FacebookShare on Twitter
  • doxie
    doxie Member Posts: 1,455
    edited September 2016

    Frill,

    Exercise has always helped control my LE. Walking is a great start, but don't walk with your LE arm down and swing it until you know how that effects your LE. At least for me, this causes swelling when my LE is active. I hang onto my clothes or put my hand in a pocket. Also punch the arm above my head from time to time.

    The best exercise I've found for LE was jogging or bouncing on a trampoline. The deep breathing and bouncing movement helps move lymph fluid along. I wouldn't start with these, though. Walking is great for those wanting to get back exercising.


    · Share on FacebookShare on Twitter
  • Frill
    Frill Member Posts: 311
    edited October 2016

    Doxie: When I was in Paris, we walked everywhere and I thought it was going to help my hand sooo much. Of course it swelled like a big blimp. Finally the whole arm down, gravity thing dawned on me a few days ago and you have just confirmed it. Thank you! When walking through the skytunnel at my hospital I've tried to start crooking it, because an angle (like a natural jogging position) seems like it might be problematic? I like your idea of pants pocket.

    Radiation just said - 20-30 minutes of walking every day, which is just what I was looking for. I'm such a rule follower. Well, when I want to be, since I pulled off their tape and their marker drawings that sent me into a body image meltdown got rubbed off. Oops.

    · Share on FacebookShare on Twitter

Categories