Swelling from compression? Please help!!!

alrz1980
alrz1980 Member Posts: 47
edited June 2014 in Lymphedema

you may have seen my previous posts regarding preventative care for the one lymph node I had removed (no breast surgery). Yesterday I wore my sleeve and gauntlet for 2 hours, the longest I ever have. During that time I was stretching, jumping on trampoline, and doings 1 LB weight exercises from my PT. Then I kept the garments on for another hour while I was on the computer. When I took them off I thought maybe my upper arm and shoulder might look fuller. I tried to measure myself which is a joke. My measurements found the very very upper arm to be about .5 cm larger. Needless to say I freaked out because this had never been the case before. I did MLD, tried to reach my therapist which I couldn't, and contacted the compression fitter questioning my sleeve being a poor fit. The arm felt fine but the measurements didn't go down. My husband measured several hours later and there was still a .5-.75 difference. I admit he struggles with accurate measurements because it's different every time . Now I'm scared to exercise today and wear the garments. The arm measurements are back to normal or pretty close to the same depending on how accurate I am. My PT plans to release me in two weeks . That's the next appt she has . I plan to call again and talk to her Monday. She is do nonchalant about what I should do if I ever swell. She said try to manage with mld cuz you don't want to come here everyday . I have a 3 year old and no sitters so there is no way I could go everyday and that part scares me. I'm freaked out and depressed thinking I triggered LD. I picture my life without daily summertime walks with my daughter, no going to the pool and no outside fun in the heat. I feel like I ruined my 3 year olds life. Thanks to my doc for telling me this was not a possible side effect and encouraging the removal. I can't picture my life with compression 24/7. They drive me crazy for 2 hours. Sorry for the venting. I'm sad and feeling hopeless and I have no one but you wonderful ladies to turn to. I am also high risk for BC and am scared that one day god forbid I might need more lymph nodes removed . I wanted to get pregnant soon... I guess that's out of the question too. Thanks in advance for your thoughts and support. 

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Comments

  • vlnrph
    vlnrph Member Posts: 1,632
    edited February 2014

    Deep breath - helps with anxiety AND lymph flow!

    It is hard to measure some areas. Relax. None of us enjoy compression but you might not require 24/7: I only use it on airplanes. 

    Water exercise in a pool is good (hydrostatic pressure on the limb) so don't give that up.

    Take a break, get off line for a little while and go play with that darling three year old.

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  • mcgis
    mcgis Member Posts: 291
    edited February 2014

    alrz1980, I feel the same way! I do have lymphedema where I have to wear compression on a daily basis but I'm struggling with gloves and the right compression now that my hand swells in my glove too. It's so frustrating. I hope you can figure out something that can work for you so you can continue your lifestyle. Lymphedema certainly doesn't fit into my lifestyle either but I do plan to go to the pool, but perhaps later int he day when it's a little cooler, people with Lymphedema run marathons so there is hope. I get your frustration! Hang in there.

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  • Marple
    Marple Member Posts: 19,143
    edited February 2014

    I'm sorry this has happened.  I'd be questioning your therapist and if she seems nonchalant about this..........time to find someone else.  I'd take it easy on your arm until you get this swelling  sorted.  I wonder if she's encouraged you to do too much too quickly?  This too shall pass but it's hard not to freak out when swelling occurs or gets worse.  We've all been there.  But yes, give your arm a break this weekend.  Elevate if you can.  Drink lots of water.  If your sleeve seems too tight, don't wear it.   

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  • Kicks
    Kicks Member Posts: 4,131
    edited February 2014

    Are you seeing a CERTIFIED LymphEdema Therapist or some PT that claims to know all about LE?  Makes a huge difference.

    The fit of your garment may be wrong or it may be the wrong level of compression - garments come in different levels of compression. For me, it has to be light/low compression, heavy compression swells me up rapidly.  

    I have a tape measure that is designed for use for self measuring that is easy to use.  It was given to me by my CLET Guy 4 yrs ago.  Unfortunately, with the passing of time and use, I can no longer read the printing/name on it (the tape part is still quite clear).  I'll call my Guy Monday to see if I can get the name from him.  Guess I never thought about it before - just thought everyone had one.

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  • Marple
    Marple Member Posts: 19,143
    edited February 2014

    alrz, if you've not been directed to this web site before, it's well worth a look.  http://www.stepup-speakout.org/ 

    To help find a qualified therapist.  http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

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  • Marple
    Marple Member Posts: 19,143
    edited February 2014

    Kicks, what does the tape look like?  I find measuring my arm not the easiest. 

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  • Kicks
    Kicks Member Posts: 4,131
    edited February 2014

    How to describe it so it makes sense?  It is sort of 3 sided hand hold with the tape inside.  Probably  2 1/2" -3" and about 1/4" or maybe a little more but less than 1/2" thick- very light weight plastic. The side that you place against your arm is curved So it goes against it easily.  The 2 ends that go againt your arm are a bit different.  The tape pulls out of one and there is a hole/notch on the other it goes into so it makes a 'circle'.  Pull out enough so it's long enough - it will stay out - to go around the area you want to measure and stick the end in.   Slide it up to the area to be measured and push the retracting button (on hand holding area) and it gently retracts with you being able to easily see the numbers, or slide the end out and look at it while off arm - it won't retract any further until you push the button again.  The tape is soft.  Obviously it's not going to give all arm measurements at one time so you do have to do more than once but it's REAL easy to do with one hand.

    Does that make sense to you?  If not I'll try again. 

        

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  • alrz1980
    alrz1980 Member Posts: 47
    edited February 2014

    hi Kicks,

    Does it look like this?

    http://www.ebay.com/itm/like/360825665598?lpid=82

    Thanks:)

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  • Marple
    Marple Member Posts: 19,143
    edited February 2014

    Yes, it kind of does (make sense).  I can't picture it but I get the gist I think.  Thanks Kicks.  I'd love to get my hands on one.

    Edit to add ()

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  • Marple
    Marple Member Posts: 19,143
    edited February 2014

    By cracky, I think you might have found it alrz.  I'm going to ask my therapist if he can get his hands on one.

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  • Kicks
    Kicks Member Posts: 4,131
    edited February 2014

    YUP - that's it!  It does work great!

    Went back and looked again and the hand part of it is a bit more of a triangle than with the handle out the back but the "working part" looks the same. 

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  • alrz1980
    alrz1980 Member Posts: 47
    edited February 2014

    thank you!!!! I just ordered one from Tigerfitness.com in case anyone else is interested. 1-3 day shipping and it was only $11 total! 

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited February 2014

    I am no expert on LE by any means. I only know what I have learned from some good websites and the people here. 

    I do know from my own experience, that if I over do it/ over use my arms past their current LE activity limits, I can swell. I wonder if you are doing too much for your own LE right now? Perhaps all the PT has you doing is doing you more harm than good if you swelled up after the trampoline jumping and lifting the 1 lb weights. One pound may not seem a lot, but everyone's LE reacts differently.

    It is just something to think about....

    I also have severe nerve damage pain in addition to the LE. I had a therapist (highly qualified and experienced with breast cancer patients), but she had me doing occupational strength training at the time that only made my pain worse. I talked to my pain dr. about it. He asked, "Is your arm strength strong enough for what you need to do?" I said yes. So he talked to the OT and we switched to lighter OT exercises so my pain level wouldn't increase.

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  • mcgis
    mcgis Member Posts: 291
    edited February 2014

    kicks, that's interesting that higher compression swells you up rapidly. i wonder if that if my case too? i have swelling in both the hand and arm but mostly the hand. i'm experimenting today with just wearing a glove. so far, my hand hasn't swelled like it usually does with the glove and sleeve on.

    can't wait to figure out the right compression for both!!

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