My PT gave me advice but I'm not sure I fully trust it

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elise24601
elise24601 Member Posts: 155
edited February 2019 in Lymphedema

She suggested an anti-inflammatory, gluten-free diet to help my LE. (There's a popular book on this that seemed to have convinced her).

I'm a very research-oriented person (I'm a grad student!), and I did not find ANY evidence in the current medical literature to back up this suggestion.

What I found was just basic common sense nutrition - drink water, maintain a healthy weight, limit salt, get enough fiber. (I already do these things, maybe have a bit too much sodium when I snack. Low BMI).

Thoughts?

I think she was trying to figure out why my LE continues to progress despite the fact that I go to PT for MLD twice a week, wear my clean, fitted garments all day, wear a custom night garment, use my pump at night, avoid triggers, get enough exercise, and basically do everything "right" yet still have gone from stage I to stage II LE. Is it just inevitable that I would get worse over time? She was trying to find something to blame (gluten).



Comments

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    You might be a candidate for the lymph node transplant surgery. I don't know what the surgery is called but I know someone on BCO had success with it.

  • elise24601
    elise24601 Member Posts: 155
    edited January 2019

    Interesting you should mention that - I saw a PS who agreed but my insurance is refusing to authorize it (I posted separately about this issue on this forum a few days ago). I'm going to do everything I can to get it covered.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019
  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2019

    There is increasing thought that lymphedema is an inflammatory response disease, and not just structural in nature - always meaning less nodes causes restricted lymphatic flow and swelling. This may account for why some people develop lymphedema and others don't, even in the same circumstances.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5297803/

    https://medicalxpress.com/news/2016-10-inflammation-lymphedema.html

    There are some trials going on now that are researching medication that aims at reduction of inflammation to treat lymphedema. Here is a link:

    https://med.stanford.edu/news/all-news/2018/10/anti-inflammatory-drug-effective-for-treating-lymphedema-symptoms.html

    I was diagnosed with lymphedema during chemo in 2011. My symptoms wax and wane, but have never been well controlled until I adopted an anti-inflammatory diet. I eliminated corn, soy, gluten, sugar, eggs, dairy, and peanuts. These are foods that commonly increase inflammation through sensitivity or allergy, and when I followed this diet there was noticeable reduction in arm swelling and discomfort. I realize that this is a study of one, but I thought it might be useful info.

  • couragement
    couragement Member Posts: 114
    edited January 2019

    I developed truncal LE after my bilateral mastectomy and have found that inflammatory foods definitely increase the pain and discomfort. I have found that gluten, sugar, and dairy all increase the discomfort. It took a lot of trial and error for me to finally find the triggers. I don't believe there is much data on this.yet... we shall see if anyone does any controlled studies in the future. I do look at anecdotal reports on this, as it is bothersome enough that I am willing to try things that have worked for others. That is my little study of n-1.

    May we all have some relief :).

  • gb2115
    gb2115 Member Posts: 1,894
    edited January 2019

    Gluten no, sodium maybe. Maybe try eating lower sodium and see if it helps.

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited January 2019

    I believe your problem is xeloda. Mine too. Stayed bandaged most of the summer. Couldn’t get wrist small enough to wear a sleeve. Didn’t have this problem a tear ago. Nothing else has changed. However I have great scans so I’ll have to live with it.

  • elise24601
    elise24601 Member Posts: 155
    edited January 2019

    oh I’ve been off the xeloda since radiation ended almost 2 years ago! Didn’t even have LE back then.

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited January 2019

    so much for my two cents. Hope you find a solution

  • BeckySharp
    BeckySharp Member Posts: 935
    edited January 2019

    I am a Lymphedema patient. I have gone to four NLN conferences, six Lighthouse Lymphedema Network Conferences, Congress World of Lymphology Conference and the Harvard Symposium Conference. Many of the doctors and CLTs presenting now say CDT should have a fourth component and that Is diet. So your CLT is getting the message somewhere. They are now realizing LE is an inflammatory condition and can be aggravated by some foods. Several foremost doctors and therapists, some of whom have LE themselves, wrote a book called Lymphedema and Lipedema Nutrition Guide. Dr. Karen Herbst is one of the authors. They also talk about the leaky gut syndrome which may be contributing to swelling.

    Many lipedema patients have been getting pain and swelling relief from The Ketogenic Diet. It helps stall the possibility of their lipedema from turning into lipolymphedema. Leslyn Keith, a CLT I think in CA, has done some research on the ketogenic diet with Lymphedema only patients and got good results. She presented her findings at 2016 NLN. Her presentation is on YouTube.

    More and more research is going on

  • ksusan
    ksusan Member Posts: 4,505
    edited January 2019

    As a fellow empiricist, I'd probably try it for 8 weeks and see if it made a difference. If you're having trouble, you might as well test some not-too-hard-to-try, not-way-out-there variables.

  • 2ndGenBCA
    2ndGenBCA Member Posts: 40
    edited February 2019

    Thank you for your post Betty! I just bought this book after becoming a patient at Dr. Herbst's practice. I was diagnosed with lipedema and lymphedema as well as fibromyalgia. I am following the treatment protocols - having a challenge with the diet part more than anything. 

    To add to my concerns is the thyroid ultrasound that I got last week (different doctor) showing Hashimoto Thyroiditis. I realize this is a "common" auto-immune disease, but this condition is causing some of my troublesome symptoms, I believe. I'm reading that this condition can be improved with a gluten-free diet (this second doctor said nothing could be done besides a very low dose of T4 synthetic hormone - so that's yet another issue). But as far as dietary guidelines, gluten-free and keto are the directions I must go. I'm a bit confused as to how to meld all this and if I must fully confess, I'm a sugar addict. I like carbs and I like sugar. I need help. Am I the only one who has such trouble with this?

    Trying to keep a good attitude - but, crap, it's scary.

  • hapa
    hapa Member Posts: 920
    edited February 2019

    I agree with ksusan. Why not try it? It's easy and costs nothing and is unlikely to give you side effects other than maybe some weight loss. If it doesn't work, go back to your current diet. I eat a plant based whole foods diet, no fried foods, processed foods, meat, dairy, flour, sugar, or alcohol. I will occasionally eat fish if my blood counts are off from treatment or something, and I eat eggs on rare occasions. I was eating like this before cancer so I am under no delusions that it is going to stop recurrence, but I feel great eating this way so I keep doing it. Just give it a shot.

    BTW, I had ALND and radiation and no signs of lymphedema yet, so your PT might be on to something.

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