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sheri56
sheri56 Member Posts: 39
edited June 2014 in Lymphedema

I had an unilateral mastectomy in Oct 2010. A week later had an axillary lymph node disection with 12 nodes removed. Developed lymphedema within 2 months. I was treated by a certified lymphedema therapist. I faithfully wore my glove and sleeve for almost a year. The lymphedema seemed to settle down and it seemed to be under control. My arm told me when I was doing to much and when I needed to go back to my self-lymphatic massage for a few days.

Well, this week out of the blue my arm started to swell slightly again and it's become "achy". I'm having trouble sleeping as I can't find a comfortable position. Any idea what may be causing this? I fear if I go back to the therapist I will have to start from square one with all wrapping etc. I work in a small office and it's very hard on my co-workers when one of us is gone just for a few hours.

Has any one else experience something like this? Any suggestions for me?

Thank you in advance for your response.

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited April 2013

    Sheri - my advice would be to go back to your therapist and nip this in the bud.  If you let it go it may well get worse necessitating even more therapy sessions.  If you go now, you may be able to get away with just a week or two of "maintenance" sessions.  While self-MLD is great, your therapist can do a much more thorough job of MLD and really move that fluid along.  Also, your therapist may suggest getting you fitted for something like a Tribute night sleeve which you can use during these flare times.   

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

     Any idea what may be causing this?

    Could be many things.  Possibly a change in weather ?  Nats advice is spot on and please do consider your  twice daily MLD in the meantime.

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  • carol57
    carol57 Member Posts: 3,567
    edited April 2013

    I agree with NatsFan and Purple--nip it in the bud.  And I think Purple may be onto something with the weather.  My LE is normally pretty mild, just a dull ache that I can tune out most of the time. I wear a night garment (Tribute) that helps enormously, so I wake up with a happy arm every morning and don't usually start to feel the ache until later in the day.  Except this past week, when the weather has been bizarre.  I went to the basement a few times this week, because of tornado-friendly conditions and enormous thunderstorms, and every single day of icky weather, I have had an ache that is beyond my usual, so I'm back to MLD'ing more often and wearing my sleeve more often.

    I'd say make an appointment, which may take a few days to come up on your therapist's schedule, and in the meantime, if the problem is weather related, you may find relief.  You could then go to the appointment for a check-in and check-up to make sure your LE management strategies are up to date.

    Good luck--hate to hear that anyone's swelling is causing grief.

    Carol

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  • sheri56
    sheri56 Member Posts: 39
    edited April 2013

    Thank you for your replies....I know in my heart I need to go back to the therapist. Why is it so hard for me to make those dr appts? Putting them off usually only creates more problems.

    We did have some damp cool weather this week. Today the swelling is down but the "achy" feeling is still there. I did the MLD this morning and will do it again before bed.

    I have a night garment but have a hard time wearing it...I will give it a try again tonight.

    All in all, I guess I was taking my lymphedema too lightly. It's something that needs daily attention. I was taking it for granted.

    Thanks again for your suggestions. This website and this forum in particular have been a God-send for me.

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited April 2013

    Sheri - we all float on "De Nile" River now and then about our LE, so you're not alone in that one at all!  We've all been there - we try to ignore it, but LE has a way of reminding us that it can't be ignored for too long.  Yell  And I agree 100% about this website and the LE forum - I don't know where I'd be without it.    

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  • carol57
    carol57 Member Posts: 3,567
    edited April 2013

    It's total bliss when, for whatever reason, we get a honeymoon period, meaning time without in-your-face LE symptoms!  I think we all get periods when it's better, and periods when it's worse, and lots of times it doesn't seem like we've changed our routines, at all.  Just the nature of the beast.  Don't beat yourself up over trying to forget about LE, just do what you've done, which is to re-start your self care and do what you need to to put your LE at bay again. 

    I have 'met' some of the most amazing women in this forum.  A few, I have met in person, thanks to a job that has me traveling around the country a good bit.  Every single person who chimes in here adds incredible help and value to our LE community. 

    Carol

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

    It's something that needs daily attention..

    That's the ticket, sheri

    Hang in there - one day at a time.

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  • sheri56
    sheri56 Member Posts: 39
    edited April 2013

    Thanks once again for the replies. One more concern...

    When I was dealing with lymphedema before, my arm and wrist were swollen. But I don't remember having too much pain. This "flare up" is very painful. My arm aches terribly. I have shoting pains up and down my arm and it radiates to my shoulders, neck and back. My fingers are also tingling. I have any appointment with the doctor and lymhedema specialist on Tuesday. But how do I deal with this pain between now and then. HELP!!!!

    My cancer treatmensts were almost two years ago but things keep lingering on and on...........I try to be strong but it is so hard.

    As purple said, "hang in there, one day at a time".

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