Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Hi Tracie, I try to drink water, but I just don't like it. I do drink a lot when I am exercising and out in the sun. I started to drinka glass when i wake up, but couldn't keep up with it. I think that I just forgot what I had to do in the morning. My legs are still swollen, sometimes more and I just take it as is. The real problem is when I wear socks, they always leave an indentation, even when they are suspose to be "loose". my dr really gave no reason or answer, he said it could be due to the varicose viens and operations that i had to remove them. Moish To: Neurosarcoidosis From: tiodaat2001@...Date: Wed, 10 Sep 2008 16:25:26 -0700Subject: Re: liver sarc Moish, Liver sarc can cause some water retention--- and the inflamation in the joints and ligaments are part of sarcoidosis--- not usually caused by the liver issue. It's just part of the overall systemic inflammation. My experience has been that when I'm retaining fluid-- I'm dehydrated. Our body is telling us that it thinks we aren't going to get enough fluids in-- so it's going to save some of what we do drink -- in bad places. Seriously, you should be drinking at least 2/3 of a gallon of water daily, that's about 5 Liters for those of you that aren't on US measures-- and the first few days, you'll not only blow up with extra fluid in your hands and feet, but as soon as your body sees that you aren't depriving it of water, then you start peeing. Within a day or two after the great pees, your urine should be virtually clear, or very, very pale yellow. You will also find that the inflammation in those joints and ligaments and muscles is so much better! The joints should "float" in synovial fluid, but if you aren't getting enough fluids-- you get the compression and toxic effect of the fluid--as it's not getting flushed out and replaced with the right electroylytes to keep it balanced. How are your Liver enzymes--- do your docs order LFT's? (Liver Function Tests). This could tell us alot about what is going on -- as there are certain signals (High Alkaline Phosphatate) levels are significant for sarc involvement, but it can also be high if you are dehydrated. Remember, summer requires even more deligence in hydration than even winter--so drink up-- get the Milk Thistle, (or order LivaTone online) and help that liver to detox. Blessings, Tracie NS Co-owner/moderator liver sarc Does anyone know if liver sarc can cuse swelling in the joints or limbs? Can it cause water to be retained in the body? Voiced Pomy Discover the new Windows Vista Learn more! Invite your mail contacts to join your friends list with Windows Live Spaces. It's easy! Try it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Jackie, I have a mother-in-law whom I adore, but all I hear is you should get outside and get some sunshine (heat intolerance), you should go to the Y and exercise (I go when I can), you should paint this, do that, etc...... Don't you wish they could understand that if you tried you might fall, pass out, not get out of bed for days afterward? When I was on the cytoxan, I was going, doing, cleaning; you name it, I was accomplishing it. Well, try to keep your chin up. I don't understand the water thing cause I drink about 2 cases of bottled water per week (yes, I recycle - I have crappy water that smells like chlorine). But I do understand the criticism of our lack of participation in life. I wish they could just see it is not a choice!!!!! Take care and know we are with you. Terri G.>>>> I really don't know why I am putting all this in writing I just needed to tell someone who would understand. I am around a bunch of "you can do it if you would just try" people. I have a sister who bought a motorcycle so she could go riding with me. I got sick and she got mad at me. Now she needs to sell the bike because she doesn't know anyone else who rides. Damn her I would if I could. I miss my bike something bad. I do have visitations with it but it has been changed so much. My son bought it. lol> Anyway thanks for the shoulder to cry on. Take care all of you. I pray for us all.> Keep smiling and have a pain free week......> Jackie from hills of Wisconsin.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Hi all. I try to drink water too. I just don't like the taste of it. My legs balloon out something terrible. I asked my doctor if she could install a faucet in my legs so when they get full I can turn it on and drain it. Of course she then suggested I see a shrink. lol I do take water pills daily but sometimes they just don't work. I am told if I would walk more that would help. I just suggested we swap legs because mine don't work too good. That went over real well. I am walking more but I get so tired and break out in a sweat. I guess I am working too hard. AAAHHH when I used to just run around for the heck of it. It does take some getting used to and accepting. I am not ready for that yet. If I accept does that mean I am giving up? It feels like it. I really don't know why I am putting all this in writing I just needed to tell someone who would understand. I am around a bunch of "you can do it if you would just try" people. I have a sister who bought a motorcycle so she could go riding with me. I got sick and she got mad at me. Now she needs to sell the bike because she doesn't know anyone else who rides. Damn her I would if I could. I miss my bike something bad. I do have visitations with it but it has been changed so much. My son bought it. lol Anyway thanks for the shoulder to cry on. Take care all of you. I pray for us all. Keep smiling and have a pain free week...... Jackie from hills of Wisconsin. liver sarc Does anyone know if liver sarc can cuse swelling in the joints or limbs? Can it cause water to be retained in the body? Voiced Pomy Discover the new Windows Vista Learn more! Invite your mail contacts to join your friends list with Windows Live Spaces. It's easy! Try it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Moish, what I've been able to do is get the Propel (Gatorade) as well as the decaf herbal teas and make that my drink of choice. I actually love a cool glass of water, but I find that if it has flavor added, I'll drink even more. Even with you having had surgery to remove varicose veins-- you shouldn't have constant edema in the extremities. (That's the lines from your socks). Get the Milk Thistle and give you liver a break-- and hydrate--- with our meds, any amount of dehydration isn't going to help at all. (Lecture over!) How is your wife doing? Know she's in our prayers, as are you. Sincerely, Tracie NS Co-owner/moderator liver sarc Does anyone know if liver sarc can cuse swelling in the joints or limbs? Can it cause water to be retained in the body? Voiced Pomy Discover the new Windows Vista Learn more! Invite your mail contacts to join your friends list with Windows Live Spaces. It's easy! Try it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 Jackie, It does not mean that you are giving up when you don't "try" to do all that you used to do. Part of the challenge we all face is learn to accept a "new normal." We know that you'd be on that motorcycle if you could, and you know that you would be a danger to yourself and others if you did. I know that lately I too have had to deal with the changes that the sarc monster demands of me. Just today, I got down to Costco, and was on one of their pitiful electric carts, when one of the ladies I go to Spiritual Growth classes with, walked up and caught me in the cart. I felt like a deer in the headlights. I so hate to admit that I've had to resort to a machine to get around. The neuropathy in my legs turns to bare electrical wires shorting out along the outside of my calf muscles, and it only gets worse when I go for a walk, even thru the grocery store. Her husband has been on a cart for years, and I did run into him, and challenged him to a race-- he'd blow my socks off, I think they have speed monitors on those carts..... But no-- you are not giving up! BTW, it takes more courage to start to accept these changes than it would to give up-- so my friend, you are a warrior!!! Love to all, Tracie NS Co-owner/moderator liver sarc Does anyone know if liver sarc can cuse swelling in the joints or limbs? Can it cause water to be retained in the body? Voiced Pomy Discover the new Windows Vista Learn more! Invite your mail contacts to join your friends list with Windows Live Spaces. It's easy! Try it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2008 Report Share Posted October 6, 2008 The water thing-- is that even though we drink a fair amount of fluids-- we also have systemic inflammation going on. I know I run a low grade fever daily, and some of it is because my liver and kidneys are effected by the sarc monster. Add all the meds we take, and our livers really take a hit. There is a point where you could get too much fluids, and that is what is called diabetes insipidous. That is a very dangerous problem, as you literally wipe out your electrolytes and still drink gallons of water a day. If you are getting enough fluids, then some of the body pain will subside, but you also need to balance it with low sugars and sweets, plenty of veges and fruit, and my weakness --stay away from red meats as much as possible (I love LOVE a good roast). I was reading in Arthitis Today magazine and it was talking about how with arthritis (gout) that is caused when the white cells crystallize in our joints (hmm, any relationship to granulomas...) that we have high Uric Acid levels. I'll try to get the info on what foods they recommend you stir clear of-- and do a complete post on this issue sometime this week. I have to go to Sacramento tomorrow to see the Neurologist, and have other appts on Wed and Thurs, so I know I'll be crapped out for the next week.. But this is one that I need to do for my Chronic Pain Support Group also-- and they meet on Wed. Arrrghh.... So much of what I'm experiencing is that we don't process the Vitamins and Minerals the way we should-- and that too causes pain. So it's a rather challenging (I wanted to say vicious- but I don't want that energy) circle. Remind me guys, and I'll see what I can come up. Hugs, Tracie NS Co-owner/moderator Re: liver sarc /tracie Jackie, I have a mother-in-law whom I adore, but all I hear is you should get outside and get some sunshine (heat intolerance) , you should go to the Y and exercise (I go when I can), you should paint this, do that, etc...... Don't you wish they could understand that if you tried you might fall, pass out, not get out of bed for days afterward? When I was on the cytoxan, I was going, doing, cleaning; you name it, I was accomplishing it. Well, try to keep your chin up. I don't understand the water thing cause I drink about 2 cases of bottled water per week (yes, I recycle - I have crappy water that smells like chlorine). But I do understand the criticism of our lack of participation in life. I wish they could just see it is not a choice!!!!! Take care and know we are with you. Terri G.>>>> I really don't know why I am putting all this in writing I just needed to tell someone who would understand. I am around a bunch of "you can do it if you would just try" people. I have a sister who bought a motorcycle so she could go riding with me. I got sick and she got mad at me. Now she needs to sell the bike because she doesn't know anyone else who rides. Damn her I would if I could. I miss my bike something bad. I do have visitations with it but it has been changed so much. My son bought it. lol> Anyway thanks for the shoulder to cry on. Take care all of you. I pray for us all.> Keep smiling and have a pain free week......> Jackie from hills of Wisconsin.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2008 Report Share Posted October 15, 2008 hi, I'm going to try and get the Milk thistle next week. To: Neurosarcoidosis From: tiodaat2001@...Date: Mon, 6 Oct 2008 17:21:08 -0700Subject: Re: liver sarc /tracie Moish, what I've been able to do is get the Propel (Gatorade) as well as the decaf herbal teas and make that my drink of choice. I actually love a cool glass of water, but I find that if it has flavor added, I'll drink even more. Even with you having had surgery to remove varicose veins-- you shouldn't have constant edema in the extremities. (That's the lines from your socks). Get the Milk Thistle and give you liver a break-- and hydrate--- with our meds, any amount of dehydration isn't going to help at all. (Lecture over!) How is your wife doing? Know she's in our prayers, as are you. Sincerely, Tracie NS Co-owner/moderator liver sarc Does anyone know if liver sarc can cuse swelling in the joints or limbs? Can it cause water to be retained in the body? Voiced Pomy Discover the new Windows Vista Learn more! Invite your mail contacts to join your friends list with Windows Live Spaces. It's easy! Try it! Connect to the next generation of MSN Messenger Get it now! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.