Struggling with swelling feet and legs? - PBC Foundation

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Struggling with swelling feet and legs?


I was diagnosed with PBC, and a liver biopsy shortly after found cirrohossis. I have been following a low fat, low salt 1200 calorie diet. A week into it, i thought i could hop on the scale and see some results. Wrong. In a panic, i started checking the scale throughout the day. What i found is i can gain as much as 10 pounds during the day, wake up 8 pounds less, and so forth. Just has me crazy. I think the culprit is water rentention. My feet and legs are so swollen. Does anyone else have this nonsense? Is there a way, without medication, to stop the swelling? I did reach out to my doctor for help, but she said what i described was "Impossible". Her nurse told me weight gain can negatively impact my transplant hopes. Yikes! Truly appreciate any thoughts.

7 Replies

Of course you can gain that much weight from one day to the next if you are retaining fluids. How can any medical person not know that? I don't have that problem on a regular basis but I have had it. The cardiologist I see prescribed a diuretic for me. I take one small pill daily and I have gotten used to it. I take it when I wake in the morning so that it isn't working like crazy when I want to sleep at night. I also have a second, different diuretic if I ever jump up in weight one day. I did once following eating Chinese food and I took the second diuretic. I will never do that again. Thank goodness I was home all day and even then, I wasn't sure I'd make it to the bathroom in time! I just avoid the salty foods now. Supposedly drinking a lot of water is supposed to help flush you out and keep you from retaining fluids. I do try to drink a lot but It doesn't work well enough for me and I need the pill to stay right.

Jackie71 in reply to littysgirl

I do gain a lot of weight daily if I don't take my water tablets. Since diagnosis and one of the reasons was the build up of fluid I take high does water tablets now, two sorts and that keeps the water retention at bay but also I am not supposed to take high level of fluids which is the opposite of what you are generally told to do. They really haven't got to the bottom of why I get the retention issue but is certainly there and not in my imagination - if I don't take the tablets the weight goes up on a daily basis and it isn't from the amount I eat.

Hi I too gain excessive weight of a day and am up weeing half the night. As soon as I am flat the water finds my blader and keeps me awake till it is gone again. One thing worth a try is"Inclined bed therapy" it helps especially in people with fluid retention problems. Try googling it. All it will cost you is some pavers or blocks of wood that you put under the head of your bed. I noticed you can actually buy plastic cups that hold up to 500kg. The head has to be higher than the feet by 6 inches or 15cm. Its worth a go and does not include increased medication intake. God knows we have too much of that already if your on urso.

In saying that I have been on spiractin .25mg. Now for years and ran out this week and have finally raised my bed so I am hoping not to have to use it any more.

Would love some others to come on board and compare notes as to the fluid retention problem.

Another very simple remedy is drink coffee. It is a natural diuretic. It certainly gets me going soon after drinking it and the bonus is it is very good for people with liver disease.

Hope you get it sorted as there is nothing more frustrating than your Dr boo haring you when you tell them stuff.

I put on my jeans in morning and have to wear a belt or they fall off but by evening meal time I have discarded the belt and have all buttons undone as well as the zipper. In fact I can't handle eating my evening meal with them on any more so I put on a very loose pair of house pants that has very loose elastic waist band.

I have experienced fluid retention in my feet and legs and some in abdomen as well. This has just begun over the past 3 months. I live in the US. My doctor has prescribed 2 different diuretics, one potassium sparing and the other potassium depleting, in relatively low doses. They have helped quite a bit. I also am working on a lower-sodium diet. But it's difficult to balance bc I've also been instructed to increase my protein intake as my albumin is very low (also due to PBC). I also drink water with lemon juice or lemon oil, as this is a natural diuretic. Is it possible for you to seek a second opinion? Or perhaps make a written record of your weight fluctuations to share with your doctor. Is your doctor a liver specialist? I hope you will find the right solution for you soon!

Thank you all so much for replying! I am so sorry you all have this, but so thankful for the advice and support! I will try the bed incline therapy, I had never heard of it, but it makes so much sense! And will ask for water pills...i have been drinking coffee, love it! Would also love to have my pants still fit for dinner!!

Please let me know if your fluid improves too. Another thing. My sister who has Rheumatoid Arthritis and has been on huge amounts of very nasty cortisone injections and now has early signs of oral cancer and my self went to see a holistic Dr Who immediately put us on the paleo diet. I have another auto immune disease called Lichen Slerosis. I also have been diagnosed with fibromyalgia heavy metal poisoning and irritable bowel. Apparently it's all the grains and sugars that are affecting us so badly. Any way for the first week I had terrible pain in my liver area but yesterday I noticed the pain is gone and today I have more energy and clearer head than I have had for a very long time.

I have been watch heaps on utube to learn more about it and I'm finding it makes more and more sense the more i hear and learn about it. Any way I'm just saying this in case any one else is interested in finding out more for them selves.

Thank you...i have been reading up on the Paleo diet...i will difinitely give it a try. So miss my morning sweet roll! But it will be worth it! Hope you continue to improve, clear headed with energy! My dream! and hope your sister is also doing well.

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