No changes...., should I keep doing all of this stuff?

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mnmbeck
mnmbeck Member Posts: 313
edited June 2014 in Lymphedema

I have mild LE.  I have a great CLT/PT who has been trying everything, it seems, to help me.  I am doing Lebeds, MLD, wearing compression garments (as much as I can....experimenting with some every day to find some that I don't have a skin reaction to), fist pumps, elevating arm, drinking lots of water, etc., etc., etc. 

I have been doing some measurements on my arm/hand.  I have marked spots (7 of them) and measure them several times a day (for the last 5-6 days).  Before and after MLD, before going to sleep, after waking up, after and before compression garments for the day, etc.  I rarely see ANY difference in my swelling, no matter what I do.  I am starting to wonder if it is worth all of the effort? 

Is there a benefit to doing all of this stuff if I'm not seeing anything positive from it?  I am supposed to be doing MLD 4 times a day....today and yesterday I've only done it twice. Just hard to motivate myself when I've never seen ANY improvement!   

Comments

  • toomuch
    toomuch Member Posts: 901
    edited January 2014

    mnmbeck - I' be never heard of anyone being told to do MLD 4 times a day. I think it's better to set achievable goals! Has your LET (therapist) ever done measurements before and after MLD. This may be a good way to evaluate your response to it. My LE improves more dramatically after an MLD session with my LET then after self MLD. Much as I try, I don't seem to master the speed and lightness of touch required. Deep breathing and fist pumps can usually be done throughout the day without inconvenience but I say no way to MLD more then twice a day.

    How far out are you from surgery? When I was first getting my LE under control I kept my arm wrapped 24 hours/ day for 7-10 days. I still get the greatest results from wrapping. Does your LET wrap you?

  • mnmbeck
    mnmbeck Member Posts: 313
    edited January 2014

    Yes, my CLT does measurements before and after MLD.  She was doing the same thing for awhile, and then decided to try some different pathways (across my back instead of front).  I just don't see any difference.  But, when she measures, there is some small differences in measurement.....very small....in fact, so small that I wonder if it isn't just the difference between 2 measurements.  2-3 mm? (sometimes .5cm). 

    I have not been wrapped.  My LE is so mild and I have been having skin reactions to anything that is put on my skin (including compression garments), which is of course NOT good for LE.  So, she is not planning to try that anytime soon.  These skin reactions are really complicating things!!

    The last couple of times, we have tried light exercise.  The first time I did it, I will admit, there was a decrease....up to a cm in some places.  I was willing to admit that could be a difference.  We did it again today without a noticeable difference, but the plan is that I am going to move forward with some consistency....very light exercise.  Soooo.....we'll see!

    And, to answer your question....my surgery was Oct. 24.  My initial 'flare' was on mid Dec.  Thankfully, I was already having PT, and since my PT is also a CLT, she did measurements on my arm before she addressed the issues I was there for.  So, she had baseline measurements, which I am so thankful for!  After that initial increase in swelling, it has pretty much remained the same, which very, very little fluctuation, no matter what I do. 

  • carol57
    carol57 Member Posts: 3,567
    edited January 2014

    mnmbeck, I wish I had some suggestions, but all I can offer is my empathy.  How incredibly frustrating!  Just curious, though--have you tried a long-sleeve compression shirt, such as UnderArmour?  It's not medical grade compression and is not gradient compression (it has the same compression the full length of the sleeve, compared to our sleeves that put progressively less compression from wrist to upper arm). But I wonder if you'd have the same skin reaction with such light compression.  If you experiment, you'd run the risk of hand swelling, however, without wearing a gauntlet.  Arrggh!

  • toomuch
    toomuch Member Posts: 901
    edited January 2014

    When you wrap you put a stockinette as the base layer. I don't think that you would have a reaction to that. Then there is a layer of foam and finally the bandages. The bandages don't come in direct contact with your skin so you may be better for you then garments. It's possible to wrap in the evening and then unwrap during the days. There are some women who are able to control their LE this way and not wear garments. 

    Finding what works is so individualized. I hope that you find what helps you soon!

  • LynnInColorado
    LynnInColorado Member Posts: 28
    edited February 2014

    Hello,

    I'm sorry you are having problems.  When you say "Mild Lymphedema", which description below (from this web site), do you fit into? 

    • Stage 0 (also called subclinical or latent): There are no visible changes to the arm, hand, or upper body at this point, but you may notice a difference in feeling, such as a mild tingling, unusual tiredness, or slight heaviness. You can have stage 0 lymphedema for months or years before obvious symptoms develop
    • Stage 1 (mild): The arm, hand, trunk, breast, or other area appears mildly swollen as the protein-rich fluid starts to accumulate. When you press the skin, a temporary small dent (or pit) forms; you may see this referred to as “pitting edema.” Such early-stage lymphedema is considered reversible with treatment because the skin and tissues haven’t been permanently damaged. When you elevate the arm, for example, the swelling resolves.
  • mnmbeck
    mnmbeck Member Posts: 313
    edited February 2014

    to be honest, I  don't k ow how my CLT is classifying it.  We chat a LOT and she has said many times that it is so, so, so mild.  She cannot/will not make any promises, but at the last appointment she said that she feels like this is going to reasolve (clear disclaimer that she doesnt k ow that for sure).   People swear they can't see a bit of swelling.  If I point it out, you can see a bit more "droop" of my underarm fat, and .my forearm has a fuller spot.  I mostly notice the worst of it as a "cottage cheese" looking forearm...again...I seem to be the only one who thinks it is obvious besides my CLT.  No pitting edema.  I suppose this would be grade zero?    I keep massaging.  I think I have found 1 (maybe 2) compression garments that are not bothering my arm.  So I am wearing a sleeve/gauntlet.  I am honestly seeing some mild fluctuatuons in some of my measurements over the last couple of days but cannot figure out why!  Sometimes higher after MLD, sometimes lower after wearing compression.  Sometimes neither and sometimes a little of both!  Still looking for a pattern!  Never consistently good or bad after waking up, even though I sleep with my arm elevated.   It's always a surprise!

  • LynnInColorado
    LynnInColorado Member Posts: 28
    edited February 2014

    I'm Stage 1/2.  I can sometimes see the swelling, but never any pitting.  Looks like you're a nurse too.  SmileI went to a PT six times and now do the self massage and some prescribed exercises at home.  No measuring because I can feel the areas of lymph pooling are bigger/smaller.  

  • mnmbeck
    mnmbeck Member Posts: 313
    edited February 2014

    I should say that my CLT is not asking me to do measurements....she is surprised I am doing it actually.  BUT...I really want to figure this out, and seeing somebody once or twice a week isnt going to do it for me.  So, I have 7 spots on my arms that I have marked and measure 1-4 times a day, depending on the day.  I have learned one big thing. ......... I dont know as much as I thought!  When I feel like I am visibly swollen, I am often NOT.  It is giving me good information!Not sure yet how to use that information, or what good it is, yet.  But, hoping it will all come together someday!!!

  • Meggy
    Meggy Member Posts: 530
    edited February 2014

    For me it is all worth it because once I got really depressed and did not do the manual massage for two weeks and I swelled a  lot.  By doing this, you may only be maintaining your current size but if it is mild, that is a success.

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