Confused about self care & massage

wulfgirl4
wulfgirl4 Member Posts: 38
edited July 2020 in Lymphedema

imageHi, my PT dismissed me because my case was mild and she said my swelling was down. I still, however, have burning, achiness and pain. I have a glove and a sleeve.

She gave me these exercises to do at home but I’ve read more info on this forum regarding massage and it seems like there may be more that I’m suppose to be doing but was never instructed to do?

Questions: are these exercises I was given enough? Is there something I need to do before jumping into these (like clearing the axillary area?) Do these exercises need to be performed on both sides or just the affected side? Do I do them before I put on my sleeve and glove? Does it matter?

I feel like a whiner because my case is mild but I have no idea what “normal” is and if I should be able to manage the pain of this or if I need more care.

Thank you for your help! image

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2020

    wulf - That's unconscionable to "dismiss" you because it's a mild case. Is this person a certified & trailed lymphadema PT? Or just a run of the mill therapist?

    My first go-round was mild but my goal was to keep it from progressing. After being pooh-poohed by several DOCTORS, I took myself to the head doc of LE & Wound Care at one of our major medical center hospitals. He did not dismiss me at all - in fact praised me for wanting to be on top of the situation. I saw an LEPT for a couple of months. Then two years later after I'd had ALND surgery, the RO made sure I had orders for MD Anderson LEPT dept. I went every week for several months. Then once a month for awhile. Then once every 6 months for two - three more year for a tune up and to discuss any changes.

    I know there's lots of stuff on the internet, but it's really impossible to get the sensation of the correct touch from a screen. Some of those exercises I was given, and others not. Also every one of us is different so it's hard to generalize, but I tend to trust the medical community over the internet. Maybe you could schedule a "refresher" and ask those questions.

    If you haven't seen this site, it has a wealth of information. https://www.stepup-speakout.org/

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  • wulfgirl4
    wulfgirl4 Member Posts: 38
    edited July 2020

    Thank you MinusTwo,

    After further research, my PT is not certified in lymphedema. 😳
    The problem is I live in a very rural area. I have to travel 2 hours to a specialist. I THOUGHT I was going to a specialist... as she was recommended by my surgeon. I've since found a couple others I will check out. Thank you so much for your info!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2020

    Maybe you could schedule one comprehensive appointment with the long distance LEPT. You could get accurate measurements and some training reinforcement, and then go only occasionally. Good luck.

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  • wulfgirl4
    wulfgirl4 Member Posts: 38
    edited July 2020

    Good idea, I’m looking into it this week! Thank you!

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