Book: Lymphedema & Lipedema Nutrition Guide

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glennie19
glennie19 Member Posts: 6,398
edited September 2016 in Lymphedema

Just wanted to start a thread about this book. I'm currently reading it and I know Frill is also. Anyone else? Thoughts on the content?


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  • glennie19
    glennie19 Member Posts: 6,398
    edited August 2016

    https://www.goodreads.com/book/show/29853296-lymphedema-and-lipedema-nutrition-guide-and-supplements?ac=1&from_search=true


    Here's a link to the book.

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  • mary625
    mary625 Member Posts: 1,056
    edited August 2016

    anxious to hear about the book. Having done a high protein, low carb diet earlier this year and feeling it was much easier to maintain, i am wondering if the book makes that recommendation before i purchase it.

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  • glennie19
    glennie19 Member Posts: 6,398
    edited August 2016

    We were talking about sodium intake on another thread,, can't remember which thread. This book recommends keeping sodium intake at 500-1500 mg/day.

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  • SusanRachel
    SusanRachel Member Posts: 68
    edited August 2016

    Not currently reading it. My first questions with things like this are 1) who are the authors/what are their backgrounds and 2) what peer-reviewed research have they done on the topic (or have others done)? There are so many things that sound promising but aren't. It is important to maintain skepticism.

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  • Melgirl
    Melgirl Member Posts: 165
    edited August 2016

    Curious if there are any other book recommendations?

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  • dAd
    dAd Member Posts: 94
    edited August 2016

    Hi everyone - Another book that I'm really interested is "Living Well with Lymphedema" by Ann Ehrlich. Is anyone familiar with it? I'm thinking of ordering it but as it's fairly expensive it would be really helpful to know whether anyone else has used it. Although I have slight lymphedema in my arm it's much worse in my breast.

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  • Frill
    Frill Member Posts: 311
    edited September 2016

    I haven't heard of Living Well with Lymphedema. I'm curious to see if anyone else has read it. To update everyone on my LE and attempting to follow the guidelines in the book - I was thrown a major curveball. I was put in the hospital Aug 17 for 8 days for "severe septic shock, febrile neutropenia, and cellulitis" (our bff). They weren't completely sure about cellulitis, but I did have a mosquito bite on my hand and a fever and at some point during the evening at the ER my arm was red and hot. That was soon replaced by an all over rash. Anyway, my bp dropped, so they literally put 8.8 POUNDS of fluid in me that evening in the ER. My hand reached a new record of 20cm and I got to see pitting first hand. (Lol, get it? It wasn't on purpose!) Talk about freaking out.

    I got out on the 25th and I believe I drove home on the 28th. During that time I was eating a very plant based diet, I probably ate meat 2-3 times, had dairy probably that many times also. I tried to stay away from bread, too. None of that got my arm down. My last 3 days in the hospital I was able to get MLD and wrapped, still nothing. Once I got back home to Louisiana - 3 days after being released from the hospital, I was back with my FlexiTouch, wrapping with foam, the whole bit. I still had the big fat hand.

    It kept nagging at me how one day I just woke up and my hand hand shrunk, what should I be doing to replicate that. Here I was once again, even MORE following so many things to try to shrink this paw down, and now on top of everything else, there's funky skin and pitting.....

    I did the FlexiTouch. That shrinks my hand down, undoubtably. It wasn't in the original above equation, but with the pitting business, that had to be included. The wrapping was not helping, in fact, I was waking up with my hand aching to the point of me being in tears some nights. My circulation wasn't being cut off, it just HURT.

    So I just threw caution to the wind and wrapped my hand only - the rest of my arm responds super well to compression and shrinks back to normal quickly. It's just my hand. But I only wrapped it with the white bandage, not with the comprilan over it. I propped my hand and arm up high and literally went to sleep thinking about lymph draining down. I woke up the next morning and my size 4 1/2 ring went over my knuckle and almost all the way down my finger.

    I haven't seen my regular LE therapist yet to report the new findings or have official measurements taken. I have no explanation for why this is working. I don't know if this time diet helped eliminate the massive fluid build up. I literally gained 20 pounds in 4 days. Then pitched a fit and got two Lasix drips and lost 15 pounds in 3 days. Now I've just got the last pound to go. But I still had the big hand after Lasix.

    I don't know if following all or a portion of the diet had any influence on this. I think not eating late is helpful as recommended, salt is definitely influential for me, weight has been super influential for me. It's all so individualized. I'm not going to be happy until my grandmother's wedding ring fits normally back on my left hand. It might not ever, but maybe if I keep tweaking things, it will. I'm about 6 pounds from "normal" weight and when I first showed LE signs, I was 30+ pounds overweight. My first big shrinkage happened after losing about 15ish pounds.

    I think all the blabbing is because early on I just did EVERYTHING, EVERYTHING and nothing worked. I was so frustrated. My LE therapists never said - lose weight. I had given up and stopped doing everything. Anyway, now I'm back to combing through you all's posts and picking out little things that affect you and seeing how it applies. Maybe something in this rant/story/whatever will have something useful.

    And the book is so helpful and educational! Even if I'm just eating that way half the time, or it's a goal, or whatever, I think it's useful. I'm going to keep at it and see if those final tweaks get me into that ring.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2016

    Frill, diuretics can't drain lymph fluid because it carries protein molecules, which too large to be eliminated in that way. In fact they're contraindicated for LE, except in circumstances (maybe like yours) where other fluid needs to be drained quickly. So the lasix may have contributed to the difficulty in reducing your hand swelling.

    Have you discussed compression sensitivity with your therapist? Some of us (myself included) are sensitive to compression and need to wrap more lightly, as "normal" wrapping causes rebound swelling.

    I have a copy of Living Well with Lymphedema (in fact, I contributed to it), but wouldn't recommend it for solid information, as it's just a collection of people's reflections on LE and some of their personalized suggestions. A better reference book is "Lymphedema, a Breast Cancer Patient's Guide to Prevention and Healing" by Jeannie Burt and Gwen White.

    Hoping you soon have that hand down to size!

    Gentle hugs,
    Binney


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  • dAd
    dAd Member Posts: 94
    edited September 2016

    Thank you so much - I passed on Living Well with Lymphedema and have ordered Jeannie Burt/Gwen White instead.

    I'm wondering what the experience of those with breast lymphedema has been having mammograms. Although I have slight swelling in my arm, most of the time it is negligible but my breast is another story. It is very swollen, red, hot and heavy and I can't imagine having it squished in the mammo machine. Can anyone help?

    Many thanks. Anne

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  • tsoebbin
    tsoebbin Member Posts: 474
    edited September 2016

    I also ordered the book. Just what I've been looking for. Thank you very much.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2016

    Anne, how long has it been red and hot? Those are symptoms of cellulitis as well as of breast LE (also called truncal LE), so it's important to be sure it's "just" LE.

    Are you seeing a well-qualified lymphedema therapist regularly for Manual Lymph Drainage? That's the best way to reduce the swelling, redness and uncomfortable warmth (as well as pain, if you're dealing with that as well). Compression garments can also help with LE control. There are lots of breast compression options to click on at the bottom of this page:

    http://www.stepup-speakout.org/breast_chest_trunck...

    Some women with truncal lymphedema here have reported problems with flaring after their mammogram (I have truncal LE, but no mammograms, since my surgery was bilateral with no recon--whew!) Be sure your breast/truncal LE is in good control before the mammogram, and make an appointment with your LE therapist for a day or two afterward for immediate help with getting things back in control.

    Please do keep us posted!

    Hugs,
    Binney

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  • dAd
    dAd Member Posts: 94
    edited September 2016

    No I'm not seeing a therapist because I don't have insurance but I have had a few appointments at the hospital clinic where they showed me how to do self massage. The swelling and redness started in April and there hasn't been any improvement. I have an appointment with my RO this month so I will ask her for another referral to the LE clinic.

    My feelings about the mammo are ambivalent as my ILC was only confirmed when a 3D mammo and biopsy was done but my surgeon says I have to have regular mammos.

    Thank you Binney - I can't tell you how much it means to be able to share experiences. This community is a godsend!

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