Help! So many lymphedema questions...

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finallynow
finallynow Member Posts: 27
edited June 2014 in Lymphedema

Hi everyone,

How can I tell if I have a mild case of lymphedema?  My arm has been feeling "different" and hurting from under my arm to my hand (feels like cording but I haven't had that feeling since I saw a physical therapist a year ago to help stretch the area) for almost two weeks.  Sometimes I have an indentation from my watch band or from my clothes on my skin that seems to take longer than usual to go away but if I press my skin with my finger, it does not stay pitted.  I have been measuring my arm circumference and if anything, it has only changed a very little bit.  I can still get my ring on my finger.  I just want to make sure if I am getting lymphedema, I get it under control before it gets worse.  So is it time to wear a sleeve and gauntlet?  I have one but everytime I put it on, the upper part slides down my arm and ends up between my arm pit and elbow.  It just won't stay up.  Any ideas?  How far up on the arm is it supposed to go also?  And when is it time to see a lymphedema-trained therapist?  I saw one for a few months a year ago but I did not have lymphedema at that time, it was more for learning, range of motion help, etc.  I just want to make sure I am doing the right thing!  If I wore my sleeve but the problem was cording and not lymphedema, would that cause a problem?  I know what to do about the cording, I just wouldn't think that would be an issue (again) a year later.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2013

    Hi Finallynow,

    While you wait for the ever-helpful advice from the others on this forum, you may be interested in checking out the main Breastcancer.org site's extensive section on Lymphedema, with info on signs and symptoms, reducing risk, finding a therapist, and much, much more!

    Hope this helps!

    --The Mods

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2013

    Wow, Finallynow, that is a lot of questions! And all of them are excellent! Good for you for jumping on this so quickly!

    The time is NOW to see a lymphedema therapist. You can ask for a referral from any member of your team. The sleeve you describe doesn't sound like a good fit, so probably best just to start over with an evaluation and therapy, then get new garments that fit properly. (But in answer to your question, wearing a well-fitting garment with cording won't cause Lymphedema problems.) You might want to remove your rings for now so that an unexpected flare-up doesn't result in having to have them cut off.

    Besides what the Moderators posted, there's lots and lots of information here:http://www.stepup-speakout.org

    And for specific ideas of what you can do until you can see a therapist:
    http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while waiting

    The best news of all is that catching these symptoms early and getting prompt treatment will make therapy quicker and easier, and on-going self-care much more manageable. YES!Kiss

    Cording, BTW, can return, so that's not an impossibility. Cording information here:
    http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

    Please stay in touch, and tell us how we can help!
    Gentle hugs,
    Binney

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2013

    Hmmm, the full links don't seem to work today. From the StepUp-SpeakOut.org home page, view the top bar to find the section called "How You Can Cope" to view the "while you wait" information. From the home page top bar, click on "Axillary Web Syndrome-Cording" to view the cording page.

    Sorry about that!Surprised
    Binney

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  • finallynow
    finallynow Member Posts: 27
    edited March 2013

    Thank you, that's exactly the information I needed. Will let you know what happens!

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  • purple32
    purple32 Member Posts: 3,188
    edited March 2013

    Sometimes I have an indentation from my watch band


    Pls remove the watch until you are properly evaluated.

    Good luck to you !

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited March 2013

    Hi, I have mild LE bilaterally in the arms and hands, and truncal. I can tell because I will feel swollen, I will feel a heaviness in my arms, my medic alart bracelet needs to be adjusted, I will feel some pain (but I have post mastectomy pain syndrome nerve damage), I will feel like my body parts are a water ballon and sometimes the balloon is feeling squeezed. I have no pitting.

    I would definetely see a therapist, a certified one if you can as soon as possible. Keep a diary till then of physical feelings, times, dates, etc. The more specific you can be, the better it is for the therapist.

    Did someone evaluate you and measure you for LE? I know there are different sleeves for different stages of LE. They do  make sleeves that have little rubber dots at the top to hold the sleeves in place. I am learning that not all sleeves work for me the same.

    I have learned that just because you can wear your ring, may mean that you don't have LE there, but only a doctor or therapist can evaluate that.

    I have LE in different parts of the arm and hands and fingers. One part of my arm may not feel swollen, but another might.

    You don't say if you had a lumpectomy plus nodes removed, a mastectomy with nodes removed, or if you had a bilateral node removal. That information would be helpful for us.

    I had a bilateral mastectomy with sentinel and axillary node removal, so I refuse blood pressures and  needlesticks on both arms.

    I would suggest that you refuse blood pressures and needlesticks on the affected arm, both if you had bilateral sentinel or lymph nodes removed. I learned that both can trigger an LE flare up.

    I hope this helps you. There are other ladies on here that know so much more about LE than me. But I think to start, see a certified therapist, don't wear the watch. Refuse blood pressures on needlesticks on the affected arm,hand,finger(s).

    Maybe Kira or Binney can comment on wearing the sleeve. Personally, what I know now, I wouldn't wear a sleeve unless it was ordered for me based on my LE conditions. 

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  • finallynow
    finallynow Member Posts: 27
    edited March 2013

    I had a bilateral mastectomy and an axillary lymph node dissection on the side that I am concerned about.  I have two sleeves and just discovered that they are two different sizes!  I was fitted for one and tried it on at the office to ensure a proper fit and then ordered another.  I have been using the one that I ordered (and did not try on at the office) and had no idea that they accidentally gave me the wrong size.  So the original sleeve seems to be the right fit.  Glad I figured that out.  I am not wearing jewelry or a watch anymore.  I see a physical therapist currently for other issues and will have a consult with the lymphedema therapist there.  Thanks for all of the info!

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  • purple32
    purple32 Member Posts: 3,188
    edited March 2013

     I have two sleeves and just discovered that they are two different sizes!

    You should call your fitter and try to have the other sleeve exchanged. Do NOT wear it- if it is too small it can lead to problems. Too big may  prove useless...

    Please consult a certfiied  LE  therapist as soon as possible. You will want hand protection as well.  Did they order a gauntlet with your sleeve ?

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