To drink or not to drink (water)?

[LymphedemaGirl]

I have Primary Lymphedema in my right leg, I was diagnosed a year and a half ago, and am still trying to come to terms with it, as well as finding ways of managing this condition. I am confused as to fluid intake. Some say to drink loads of water to flush out lymphatic waste, but others say to drink as little as possible to not overload the already challenged system. Does any of you lymphers out there have experience with this? Thank you.

[patoco]

Hey lymphedemagirl!

LOL...sure do, lots of experience with this considering my fluid collection all over. The consensus with the medical community who treats lymphedema is in agreement that you should be drinking the normal amount of fluids or water. Believe it or not, you can actually become dehydrated even with lymphedema. This dehydration can have a disasterous effect on your health.

If you severely limit your fluid intake, then your body will start trying to "save" or store water (fluids). This, of course, aggravates swelling.

Plus, it is this fluid intake that helps the body flush out toxins, waster etc , so drinking enough is critical to our over all health.

In my own life, I find what I drink and what I eat much more important.

Personally, I avoid soda drinks. LOL...I know...and I do like them too. But, they are nothing but masses of sugar with absolutely no nutritional value at all. Also, it kinda bothers me that you can clean the corroded battery posts in your car with coke. If it cleans those posts, imagine what it does inside you.

I also try to make my fluid count as much as I would my food.

I focus on fruit juices, milk (if you are able heartwise), tea and of course regular ole H2O.

BTW, many many people claim you should avoid caffiene, stop drinking coffee etc. Hogwash! There is absolutely no clinical evidence that having a good cup of java harms you in any way. That mount of caffiene in a cup is totally safe for a normal person. It is the excess of anything that winds up causing us harm, be it coffee, or any other type of fluid.

Alcohol - This is a strictly personal decision based on the specific individual. Some people have medical conditions that prohibit them from drinking any alcohol. Others are on medications that make drinking even small amount of alcohol dangerous, so the combination must be avoided. Others can't stop drinking once they have started and this group must avoid drinking any amount.

I have limited my alcohol consumption the past few years because of my medications. I may have a glass of wine on the holidays and/or a glass of champagne on new years. I use to enjoy a cold beer now and then, but not any more, again because of my meds. There is nothing clinical that give any evidence that we should never drink just because of lymphedema.

Notice on all these fluids, it is the amount you drink that can harm you or cause health problems. Moderation and common sense is the rule of thumb.

MSG - I have enough concerns over this that I try to avoid buying foods that have it. I also never use it in cooking. While there is no hardcore clinical evidence that it is actually dangerous, I just have enough questions that I avoid it.

SALT - Here is another hot bomb in LE. Many many people claim you should be on a severely restricted salt intake.
Again, the key here is moderation. The recommended amount of salt per day is slightly less a teaspoon and you will get this from normal food consumption, thus you really shouldn't need to add salt to what you eat.

Apart from the other health issues caused by too much salt, salt can really aggravate edema so it would be wise to use as little as we can.

Lymphedemagirl, there is one question I always will ask anyone who says we should or should not eat or drink anything and that is "Where is the clinical evidence to support your claim?"

Hope this helps clear up some of the confusion.

Pat

[LymphedemaGirl]

Hi Pat,

thank you for your thorough reply Sorry for the late reply.

I have gone back to drinking more water (though not enough yet) as I think you are right. It sounds logic too that water helps flush out the toxins and waste.

I almost never drink soda drinks, the fuzziness somehow doesn't appeal to me unless it involves alcohol so I guess that's good. I like your comment about coke being able to clean a corroded battery, he he

I don't drink much alcohol, just a glass of wine every now and then, and I haven't noticed anything different in my leg when I do. Coffee will be the very last thing to give up, as I really do enjoy it, though I only drink little of it. I think you are right about us having to listen to our own bodies. I have found that because doctors are so ignorant about Lymphedema, one has to take what they say with a grain of salt. The stories one reads about Lymphedema patients encounters with doctors, hospitals etc. are sometimes horrifying!

Pat, I hear what you are saying reg. clinical evidence of various claims, but I feel that because of the many unknown factors of Lymphedema, the lack of focus and research and the ignorance of doctors one must be ones own doctor, scientist, crashtestdummy. I feel that just because there is not (yet) clinical evidence it doesn't mean it can't work (for some). Perhaps I am fooling myself for trying different things to make my situation better, but imagine if one of us discovered something that helped and subsequently it "got the stamp" by doctors, scientists etc. that it really did work. Everything has to start somewhere, eh?

Pat, I want thank you for your tremendous effort to help us lymphers all over the world, I don't know how you do it. How you cope with your very serious health issues is beyond me, but aweinspiring. Your kindness and positive attitude is so comforting. Thank you.

[patoco]

[quote="LymphedemaGirl"]Hi Pat,Pat, I hear what you are saying reg. clinical evidence of various claims, but I feel that because of the many unknown factors of Lymphedema, the lack of focus and research and the ignorance of doctors one must be ones own doctor, scientist, crashtestdummy. I feel that just because there is not (yet) clinical evidence it doesn't mean it can't work (for some). Perhaps I am fooling myself for trying different things to make my situation better, but imagine if one of us discovered something that helped and subsequently it "got the stamp" by doctors, scientists etc. that it really did work. Everything has to start somewhere, eh?


Hey Lymphedema Girl

I understand and which of us hasn't tried something to help. The sad problem though is that so many of us seem to choose
things that have actually been proven "bad" for us (the body) - contradicts other mediations they are on etc etc. Plus, they don't inform their doctor of jack squat. All this rolls up into some potentially bad outcomes.

If it is done with some wisdom and forethought - and is safe, I would understand the person doing it and wish them well, sharing their hope that it might help.

Others, like myself too have to take medication which normally would be a no-no for us. For example due to the massive fluid accumulation in my chest, lung cavities and abdomen, I am on large doses of diuretics. I cringe every time I take one, but without them I wouldn't last a month. LOL, after warning people of diuretics, here I am taking a hefty dosage.

I've read your posts too in other places, and something tells me you would think carefully before doing anything.

I am so glad you posted your note and appreciate your response as well!!!!!

Pat