moving beyond the gold standard...

computermouse
computermouse Member Posts: 16
edited June 2014 in Lymphedema

Hi,

In addition to wrapping/compressing and MLD, it seems like there are so many ideas out there for control of LE, and it can be tough to figure out which ones are worth trying given the time/effort/money. I would love to discuss which additional methods have benefitted us most with the least intrusion into our lives -- or the most benefit to other parts of our lives, such as getting down to our ideal weight. Maybe a slightly different spin on simply 'what works.'

Here's what I've been trying:

swimming

Worked amazingly until one day it actually caused swelling. My therapist suggested compressing for a couple hours afterwards.

Lifestyle impact: a lot of time and trouble to drag myself to the gym every day, but I started really loving it after I got into the routine. I do worry about the chlorine, but it would be a lot of effort to get to the one pool in the city that's ozone cleaned.

riding my bike to work

Two hours a day of moderate exercise with sleeve kept my LE under control but then winter hit. There's no way I would have time to spend 2 hours a day in the gym.

dry skin brushing

With soft natural bristle brush ($10 at a health food store) before showering in a.m. Just started. Minimal impact on my time....no idea if it will help but it does feel good! Bonus: it's supposed to reduce cellulite!

digestive enzymes

Again, just started. Theoretically it should help with energy levels too. Minimal cost.

testing for underlying aggravating conditions such as food allergies, leaky gut syndrome

This was hundreds of dollars not paid by insurance. I've heard there's some theoretical connection between leaky gut and LE (i.e. protein escapes from the holes in your gut). It's a simple urine test to find out, but most doctors probably won't do it for you. Allergy testing was through bloodwork, not the prick test. The results should allow me to fine tune my diet. I guess if it's useful I'll see improvements to allergic conditions such as eczema. Will keep you posted if anyone's interested.

acupuncture

I know this one's controversial. I've had good and bad experiences, including blood gushing from my LE arm, causing massive bruising. Now I don't let anyone touch that arm, but still do it in remote parts of my body because I think it can support my overall health and healing.

horse chestnut

My doctor wouldn't let me take this in oral form due to estrogen and toxicity concerns. But I tried the cream on my arm, and it seemed to give me a rash. I ordered it online...it wasn't very expensive. Have heard great things.....

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  • computermouse
    computermouse Member Posts: 16
    edited February 2011

    Sorry, I forgot to add:

    There are some other things I would love to hear more about, especially in the context of how these or other methods impacted your life for the good or bad:

    Switching to a raw diet (or doing regular raw food detoxes)

    Eliminating 'inflammatory' foods like meat, wheat and dairy

    Cutting out caffeine and sugar

    Not wearing a bra (or is there a certain type of bra you can wear?)

    Chinese herbs (a Chinese herbalist told me he could 'cure' lymphedema if he could get to it within the first year after surgery...)

    Thanks!

    CM

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Computermouse: since LE is an inflammatory condition, there is this book out by a psychiatrist who has had two bouts with brain cancer, and I read it, and found it well researched--it's not specific to LE, although he cautions women with breast surgery in his chapter on exercise, but has a lot of information on ways to "clean up the terrain" and eat an anti-inflammatory diet:

    He had a full site called anticancerbook.com--but its currently suspended--he is doing research with MD Anderson.

    Here's a link to the book on Amazon:

    http://www.amazon.com/Anticancer-New-Way-Life/dp/0670021644/ref=sr_1_1?ie=UTF8&qid=1297519067&sr=8-1

    Also, the no bra thread was very pro no bra--we put up a lot of the comments at stepupspeakout

    http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Camisoles_vs._Bras_for_Easing_Lymphedema_Swelling

    Women on the board swear by no caffeine.

    Personally, with this terrible weather, I ride the exercise bike every day--it's boring, but better than nothing.

    Re: leaky guy--my daughter has celiac diseae, so we're used to watching out for gluten in our house, although she's married and lives an hour away, but visits a lot. You can try to eliminate gluten, milk products.

    Personally, I take bioflavinoids, ginger, fish oil--and try and follow the antiinflammatory diet-not totally successfully.

    Kira

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  • computermouse
    computermouse Member Posts: 16
    edited February 2011

    Thanks Kira...it's really helpful to hear what you do above and beyond the standard care. On the bioflavinoids, do you take rutin or some other one?

      I guess I've really started to think about not just what helps and what might help but what changes might deliver the biggest bang for the buck (and I don't just mean money but time and emotional energy). I know this is totally subjective -- for some, cutting out coffee is nothing, for others, a major sacrifice. That's why it would be great to hear about any and all fairly simple things -- simple for the individual in question -- that have produced surprisingly good results.

    CM

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  • hymil
    hymil Member Posts: 826
    edited February 2011

    Cutting out meat, milk, bread and tea - i would starve! That's quite a tall order - Egg-noodles with spinach, anyone? I did try going no-bra for all of two days - and the side of my ribcage seemed a whole lot softer by the end. Sadly not realistic except for duvet-days, as good-booby still needs adequate support if im going out in public.

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited February 2011

    I've got to say, when I see a long list of food prohibitions I tend to look away because I like to indulge in what I like to indulge in.  It would take a whole lot of science to get me to say no.  But thats me.

     Exercise wearing compression garments is a fantastic help, I've found.  It provides the pump for the system.  But everyone seems to vary with respect to what they can tolerate. 

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