RE: edema

[Guest guest]

thank you for the advice, will try the swimming pool and elevating my legsTo: neurosarcoidosis Sent: Wed, June 1, 2011 7:51:31 PMSubject: edema

& Sam, I'm sorry that you are having to deal with this miserable situation. One thing to remember about edema caused from water retention is that water runs downhill. So elevating your legs & even using the stockings & wraps doesn't get rid of the water, it just helps it move somewhere else. Have you discussed changing or increasing your diuretics? One thing that can give some temporary relief of edema by causing diuresis (peeing out the fluid), is immersion in water. Most bathtubs are not deep enough, as you need to be immersed up to your neck, for 30 min. or more. If you have access to a swimming pool or hot tub, try that. I've seen women lose 5-6# overnight, just from fluid loss. When I was a kid, I always had to pee a lot when we were swimming, but I thought that it was because I swallowed a lot of water (I wasn't a very good swimmer as a kid!). When I became a nurse I

learned about the diuretic effect of water immersion. As I said, this would provide only temporary relief; you still need to find the root cause. Edema is a symptom, not the disease itself.

When you use the stockings or leg wraps, be sure to put them on before you get up walking around.

, the fluid you describe sounds more like lymph fluid, from the lymph glands. There is a specific type of massage, lymphatic massage, that helps to get the lymph glands draining. You might look into that. We've had people on this list who talked about it. It's been awhile, so I don't know if you could find it in the archives. Might be easier to just use your web browser. Find a good site & see if the description fits what you are experiencing.

And , I love your sense of humor & empowerment! said: odd and surprising life of a neurosarc "powerhouse"

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Wed, 1 Jun 2011 21:21:37 +0000Subject: RE: RE:

: I also have bad edema that no one, despite diuretics (tie me to a toilet, please!!) -- 90 mg daily of Lasix/furosemide, plus daily dose of Dyazide can seem to control; I have even been hospitailzed and on IV Lasix for three days, with some relief but once back home, back to my "poofy" self . . . .This swelling creates additional pain / neuropathy in the feet. hands, etc.I know I need to drink -- esp water -- to keep meds running through, but have also been advised to watch fluid intake -- Catch-22 anyone??Perhaps someone out there has better advice for and I, and anyone else with perpetual edema.AS well, , perhaps you can explain what you mean by agressive treatment: what meds are you on, and dosages, and what have you tried without success?I, too, am into my second year, and am so frustrated; I just saw a picture of myself from three years ago, almost to the day -- I

am no longer that person, physcially or emotionally. I have gained nearly 80 lbs; I am easily fatigued, etc and no longer able to work, but keep hoping I can return-- some days I wonder if that will ever be possible. (I held --hold?? a senior position in local government .. .)But--each day I go to bed believing that -- like Scarlett O'Hara, tomorrow will be a better day -- and it is, because today is always better than yesterday, and only half as good as tomorrow. There's always hope -- and it's one of the few things in life that's still free.So, keep in touch with people here!!While family and friends are a help t hey don't always understand; my husband is now quite ill himself and only just starting to realize that it's different to look at another person who is not well, even someone as close as a spouse, and to be that person; it's different from the inside out than from the outside looking in, if you know what I mean.So hang in

there: this disease can be beaten!! (We can not only put men and women on the moon, but they can now live in outer space and return -- anything is possible!!

To: Neurosarcoidosis From: ggmback@...Date: Wed, 1 Jun 2011 12:02:54 -0700Subject: RE:

Hello. I am having problems with my ankles swelling really bad, my pain is in my back, butt and legs. sometimes I cant get out of bed. The meds make me feel worse than the pain. It's been 2 years. The doctors keep telling me that it will get better. They are treating the disease agressivly. What can I do to maintain a quality of life with this disease? I feel life is passing me by!

[Guest guest]

Thanks, Rose; will check out sources of lymphatic massage in my area; thanks too for the other "pro" tips about leg wraps . . .and I will also look for opportunities for immersion -- never would have thought that being in water would help get rid of it

Cheers,

To: Neurosarcoidosis From: ggmback@...Date: Thu, 2 Jun 2011 07:36:17 -0700Subject: Re: edema

thank you for the advice, will try the swimming pool and elevating my legs

To: neurosarcoidosis Sent: Wed, June 1, 2011 7:51:31 PMSubject: edema

& Sam, I'm sorry that you are having to deal with this miserable situation. One thing to remember about edema caused from water retention is that water runs downhill. So elevating your legs & even using the stockings & wraps doesn't get rid of the water, it just helps it move somewhere else. Have you discussed changing or increasing your diuretics? One thing that can give some temporary relief of edema by causing diuresis (peeing out the fluid), is immersion in water. Most bathtubs are not deep enough, as you need to be immersed up to your neck, for 30 min. or more. If you have access to a swimming pool or hot tub, try that. I've seen women lose 5-6# overnight, just from fluid loss. When I was a kid, I always had to pee a lot when we were swimming, but I thought that it was because I swallowed a lot of water (I wasn't a very good swimmer as a kid!). When I became a nurse I learned about the diuretic effect of water immersion. As I said, this would provide only temporary relief; you still need to find the root cause. Edema is a symptom, not the disease itself. When you use the stockings or leg wraps, be sure to put them on before you get up walking around. , the fluid you describe sounds more like lymph fluid, from the lymph glands. There is a specific type of massage, lymphatic massage, that helps to get the lymph glands draining. You might look into that. We've had people on this list who talked about it. It's been awhile, so I don't know if you could find it in the archives. Might be easier to just use your web browser. Find a good site & see if the description fits what you are experiencing. And , I love your sense of humor & empowerment! said: odd and surprising life of a neurosarc "powerhouse"

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Wed, 1 Jun 2011 21:21:37 +0000Subject: RE: RE:: I also have bad edema that no one, despite diuretics (tie me to a toilet, please!!) -- 90 mg daily of Lasix/furosemide, plus daily dose of Dyazide can seem to control; I have even been hospitailzed and on IV Lasix for three days, with some relief but once back home, back to my "poofy" self . . . .This swelling creates additional pain / neuropathy in the feet. hands, etc.I know I need to drink -- esp water -- to keep meds running through, but have also been advised to watch fluid intake -- Catch-22 anyone??Perhaps someone out there has better advice for and I, and anyone else with perpetual edema.AS well, , perhaps you can explain what you mean by agressive treatment: what meds are you on, and dosages, and what have you tried without success?I, too, am into my second year, and am so frustrated; I just saw a picture of myself from three years ago, almost to the day -- I am no longer that person, physcially or emotionally. I have gained nearly 80 lbs; I am easily fatigued, etc and no longer able to work, but keep hoping I can return-- some days I wonder if that will ever be possible. (I held --hold?? a senior position in local government .. .)But--each day I go to bed believing that -- like Scarlett O'Hara, tomorrow will be a better day -- and it is, because today is always better than yesterday, and only half as good as tomorrow. There's always hope -- and it's one of the few things in life that's still free.So, keep in touch with people here!!While family and friends are a help t hey don't always understand; my husband is now quite ill himself and only just starting to realize that it's different to look at another person who is not well, even someone as close as a spouse, and to be that person; it's different from the inside out than from the outside looking in, if you know what I mean.So hang in there: this disease can be beaten!! (We can not only put men and women on the moon, but they can now live in outer space and return -- anything is possible!!

To: Neurosarcoidosis From: ggmback@...Date: Wed, 1 Jun 2011 12:02:54 -0700Subject: RE:

Hello. I am having problems with my ankles swelling really bad, my pain is in my back, butt and legs. sometimes I cant get out of bed. The meds make me feel worse than the pain. It's been 2 years. The doctors keep telling me that it will get better. They are treating the disease agressivly. What can I do to maintain a quality of life with this disease? I feel life is passing me by!