cording/TE pain am I normal?

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fredntan
fredntan Member Posts: 1,821
edited June 2014 in Lymphedema

chemo ended feb 29. I believe the taxol caused my cording. I don't have much, but enough to just aggrovate me. the one in my axillary is gone, but have been working on elbow cord. now today I feel 2 more tiny cords near the elbow cord. I just went back to work and have really been good. wearing my sleeve at work and when I'm doing something strenuos. Will this pain ever get better? will it ever go away?

then there's the TE. they filled it again 3 weeks ago-last one. It allways takes me forever to stretch out and get comfortable with TE fill. Is it normal for the TE to hurt too. It doesn't hurt much. its just aggrovating too.

I've got the nerve pain from cording going down arm/then the TE pain. Is this pretty routine? my PS NP lady said last time I saw her that it was. 

My PT said I don't have to wear the sleeve all the time. just when I'm doing something physical

I'm just feeling really unsure of myself. Had horrible day at work. And compared to the used to be days at work it was pretty easy. Just not sure if I can do it anymore.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2012

    Fran, I'm so sorry! What a slog this all is!FrownYell Unfortunately, it all does sound, well, not exactly normal -- but usual.Tongue out Do check with your surgeon on the TE pain and make sure nothing else is going on. And is your PT skilled and experienced in dealing with cording? If not, another LE-trained therapist might be a good idea. Cords can hang around for awhile, but getting good therapy can sure ease the way.

    It gets better, honest!Smile Hang tough!

    And please do keep us posted. Hugs,
    Binney

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  • fredntan
    fredntan Member Posts: 1,821
    edited March 2012

    my pt released me a month ago, as we both agreed I could do what she was doing for the cording-which was just massaging it back and forth like paino string. And one did get better using that method. I just hate traveling through traffic for  good therapist. but I guess thats what I got ta do. I don't think she was too skilled in cording.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2012

    Fredntan, do you have the link to the AWS page on stepupspeakout?

    http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

    I'm almost 4 years out from surgery, and still get a cord flare now and then, and they do hurt!

    It sounds like you're in a lot of pain/discomfort and that is just so hard.

    I find if I stretch out the axilla, the cording gets better. And if you can take motrin/aleve, that can help.

    I went through a lot of therapists, and not many understood cording. Unfortunately.

    I saw on your profile that you're a nurse, and I would imagine work is pretty physical at times, so it's not like a sedentary job. I work in medicine, and since I've gotten LE, I'm aware of how many times I push a wheelchair, help a patient get onto the exam table, pull up the exam table, etc. And my job is pretty easy, physically.

    Please let us know how you're doing

    Kira

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  • Tired-Lady
    Tired-Lady Member Posts: 3
    edited March 2012

    Dear fredntan, I thought I was reading about me, I know what you are goinjg through. I had my mastectomy Nov 15th and have been dealing with cording off and on since Dec.  I wa discharged from my OT that works with lymphedema but have not been dilligent with exercises or sleeve wearing (it makes my hand swell, maybe I am wearing it too far down).  Swimming and water exercises if you don't swim are supposed to be great for it. I wonder about the taxol part now becuse I get my 4th and last trreatment of taxol this week and wonder when my cording issues started up again.  I get treated every other week.  I know when I start to getr achy from the taxol it really attacks the side of my expander, before going to my hips and legs. I guess I should be grateful that I do not have trouble with lymphedema but can't stand this cording and pain either, always wondering if I will wake up one morning with a swollen arm. doomed to sleep on my right side with my left arm on a pillow........

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