Has Anyone Had a Prickly Feeling From LE?

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cinnamonsmiles
cinnamonsmiles Member Posts: 779
edited June 2014 in Lymphedema

I am just wondering if anyone has ever had a prickly feeling from LE?

Thanks.

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  • toomuch
    toomuch Member Posts: 901
    edited February 2014

    I get a prickly feeling in my breast sometimes. I'm not sure if it's secondary to my trunk LE (which is more significant than my arm LE), radiation or post mastectomy pain. It's a prickly painful sensation that travels along the side of my breast. It's not the kind of pain that takes my breath away just that I take notice. I'm sorry I can't be more helpful. I hope some other women respond with their experiences.

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  • mnmbeck
    mnmbeck Member Posts: 313
    edited February 2014

    I have tingling.  I do get a 'prickly' feeling when I wear compression garments, but I've come to the conclusion that it's because I have skin reactions to the garments!  (redness, etc). 

    Is the prickly feeling you are having painful? 

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  • Momine
    Momine Member Posts: 7,859
    edited February 2014

    Yes, usually the first sign that I need to pay attention to it.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited February 2014

    I am the same as Momine, It means I have to pay attention. It's a dull prickly at the back of my armpit or breast, Almost a slight bee sting feeling with it. If I put back on my shaper it takes care of it and the feeling subsides.

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited February 2014

    Thanks for the information. I was actually inquiring for a woman who posted getting prickling feelings and a rash sometimes and it seems to come and go. I thought I would see if LE was a possibility. I posted on her discussion what you have told me.

    I really thank you for all the information!!

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

    Hey all, I'm toying with the idea of using Survey Monkey to put together some surveys to gather information about topics just like this.  Not for anyone's official use, and it would never qualify as scientific research, but it might be interesting to get an indication in some way that we can tally of the various symptoms and sensations of LE, and maybe some way to capture relationships we observe between events like needle sticks and LE flares.  This kind of thing is only useful if lots of people take the surveys, though.  I would host them on another website and the answers would be totally anonymous, and I'd report results on that website.  Just curious: would anyone here participate? It would not be connected to bco in any way, but hopefully there could be lots of links to the surveys so people could find them and participate if they wanted. If mods are seeing this...any conflict with terms of use here in the wonderful breastcancer.org?

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  • toomuch
    toomuch Member Posts: 901
    edited February 2014

    Carol - Right now, we can probably learn as much or more from each other as we can from the medical community! Count me in.

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited February 2014

    Carol: I will certainly participate and would love to take the results along with me to doctors who don't understand LE, don't understand about LE because they are jerks or poo poo LE.

    I think it would be important to include how many sentinel or lymph nodes were removed.

    I went for a consult with a breast surgeon who graduated within the last five years and told me that she didn't believe I have LE because I "only" had sentinel nodes removed and 1 axially node removed. She said that the odds of me getting LE in one arm, let alone both were so low she couldn't believe that I had LE in both arms (after that comment I didn't bother to tell her I had it in the chest as well).

    Very Good Idea Carol and I commend and applaud you for taking on all that work!!!

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

    Well, I need some time to work this project into my work-dominated life, but I've been mulling it over for a while and I really want to see what we can do with simple surveys.  Thanks for the support of the idea!

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

    Carol, you Survey Monkey! You could be starting something very interesting. Citizen Science is the term I heard at a conference of epidemiologists & researchers last fall...

    Some of the lobular ladies have been contributing to a thread on that forum called "ILC - The Odd One Out?" started by MmeJ a few months ago. Momine brought up the idea of data collection there but so far it's mainly been several of us telling our stories. It's difficult to determine if we are seeing trends or maybe we're just observing and sharing coincidences.

    Curiously, a month ago I signed up for a study at the cancer center allowing my information to be pooled with others in an effort to establish statistics on diagnoses, tumor characteristics, etc. I was surprised they weren't already doing this. The more we know, the bettter.

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

    We shall see!  SurveyMonkey is quite inexpensive and you can do a lot with it.  I'm wondering if I might find a doctoral student somewhere--someone working on a medical research degree of some sort--who might help guide the effort, or at least the design of the effort.  Meanwhile, my work is keeping me prancing all over the country and that means I have a lot of time to think (hotel rooms, airports, airplanes....) but not enough time to DO.  

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