I have not been taking my Lasix because I get horrendous leg cramps everytime.I cry in the pillow to keep from waking the house.Anyone have things that helped them.Ice cold water works but I get out of bed and pour the water on them before I can go to the bathroom or I can sit on the toilet because it makes them worse so I end up peeing all down my legs and I cry more because I have to clean the bathroom in the middle of the night.
When I was cirrhotic I had horrible leg cramps in my calves at night. What worked best was to get up and walk around.
It's hard at first, because of the pain but it works.
Roll to the edge of the bed and hang your leg down. Then go ahead stand up and slowly walk. It really worked for me, I guess it's because it gets the circulation going.
I got to where I could catch them before they cramped up too bad.
I thought potassium would help so I ate bananas, sometimes even in the middle of the night. I'm not sure if it helped but it didn't hurt.
Don't stop taking the lactulose. You need it for the HE.
I saw your labs.Do you know your bilirubin and INR ? I know you have cirrhosis and ESLD.
You really need to be seen by a good hepatologist at a transplant center.
The other thing you could use is someone to help you, someone to care for you. Is there anyone to give you the support and help you need ? I know people often don't realize how sick we are but I know you are very ill.
I wish you the very best.
Try and breathe slow and deep, this too will pass.
I have to go to bed now dear.
Griz usually hears me and gets me some cold cloths but sometimes he can't make it there too fast-he is older than I am an he's gettin crippled up.I will call tommorrow and ask them about the bilirubina and inr.My white counts and red counts are very low he said and to call him with any issues.I have finally found reliable transportation to seattle even when the snow flies.Wenatchee Shuttle express has multiple daily trips for 69.95 round trip to Sea Tac then I can get lost on a metrorail or bus!Scary but finally I can go!Have a colonoscopy coming up had the endo done and I will ask the gastroenterologist for a liver Biopsy!Thanks for being a hawk but quit scaring my chickens!Got 24 Rhode Islands that scatter once in awhile because of the red-tails!
You say you have ascites, sleep problems which are probably related to hepatic encephalopathy and have a platelet count in the 20,000s. It appears you clearly have a decompensated liver. You need to go to a transplant center to get evaluated for transplant. Why haven't you been evaluated yet? You are qualified by the stage of your disease unless you have other issues that prevent you from qualifying for a transplant. All patients who are decompensated are told to go to a transplant centers under the care of a hepatologist (liver specialist). Not a gastro. You posted that you are going to the University of Washington Medical Center. Then why are you seeing a gastro? You should be under the care of a hepatologist not a gastro.
When are they going to evaluate you for transplant? I thought that is what you said. I'm I wrong?
You are too ill to treat your hepatitis C, so as of now, your only option is a liver transplant. I have liver cancer. I am in the same boat. It is too late to save our current livers. Unless we receive a donor liver we will die.
Are you going to the “Hepatology Clinic” at UW? They treat cirrhotic patients whos liver disease was caused by hep C.
I hope you are not going to the “Hepatitis C Clinic” which is for patients only dealing with hepatitis C. Your medical issues are related to advanced liver disease (decompensated cirrhosis), not hepatitis C.
Please don't waste any more time. Your liver disease has already progressed to a every advanced stage. The sooner you get listed for transplant and proper care under a hepatolotologist, the better.
Being improperly treated by a gastro with lasix alone for edema and ascites and can cause muscle cramping. All loop diuretics including Lasix, cause low potassium levels (hypokalemia). And low potassium levels can cause cramping. That is why Lasix is only taken in addition to Spironolactone. Never alone.
This is not my opinion. From the Practice Guideline of the AASLD.
“Management of Adult Patients with Ascites Due to Cirrhosis: An Update”
“The usual diuretic regimen consists of single morning doses of oral spironolactone and furosemide, beginning with 100 mg of the former and 40 mg of the latter. Previously, single-agent spironolactone was advocated, but hyperkalemia and the long half-life of this drug have resulted in its use as a single agent only in patients with minimal ﬂuid overload.
Single-agent furosemide has been shown in a randomized controlled trial to be less efﬁcacious than spironolactone. The good oral bioavailability of furosemide in the patient with cirrhosis, together with the acute reductions in glomerular ﬁltration rate associated with intravenous furosemide, favor use of the oral route of administration.
A randomized trial purports to demonstrate that spironolactone should be
used as a single agent, with furosemide added only for refractory patients.
Diuresis was slower in the single agent spironolactone group with a lesser need for dose adjustments; thus, this approach may be useful for outpatients.
However, another randomized trial indicates that initial combination treatment shortens the time to mobilization of moderate ascites. Most patients require combination treatment eventually. The largest study ever performed (involving 3860 patients with cirrhosis and ascites) used combination therapy from the beginning.
Starting with both drugs appears to be the preferred approach in achieving rapid natriuresis and maintaining normokalemia. An alternative approach would be to start with single-agent spironolactone, in particular in the outpatient setting.”
I am afraid your doctor is providing improper care. Poor management of cirrhosis will only lead to more suffering and a poor outcome. I have seen people die because they got to the transplant center when their liver disease had gone too far. There is no reason for you to let it happen to you.
Both OH and myself have been there and know how painful cramping is. I am very are sorry you are experiencing it now. It is very painful. I have awakened many nights will severe leg cramps. Excruciating.
The main issue you have… is not leg cramps. The reason you have leg cramps is poor medical care and poor monitoring of your response to treatment. Until you solve that, you will continue to experience complications of cirrhosis do to improper treatment and management. There is a lot worse suffering then legs cramps I'm afraid that come later as the liver continues to decompensate. Please help yourself now before you suffer more and start to have the life-threatening complications of decompensated cirrhosis.
Meanwhile you might want to try-
If you are cramping in your legs bending them will bring on more cramping. I found keeping legs straight and trying to walk it off until is stops is best. But don't bend your legs again as you might in bed they can start cramping again.
Keeping blankets loose at the foot of the bed or of to prevent toes and feet from pointing downwards during sleep. This is a common way cramping starts while sleeping. You want to push your feet back towards your knees and stretch the muscles to prevent them from seizing up and cramping.
I'm having trouble piecing together all of your information from your two posts and also from your page.
It sounds like you have Hep C, Cirrhosis, decompensated liver, ESLD, your counts are low, your platelets are low, and you have hepatic encephalopathy and ascites.
It sounds like you're on medication for your Hepatic Encephalopathy. It sounds like you have an appt coming up at the UW Medical Center, but you're seeing a gastroenterologist instead of a hepatologist. Although at the UW Medical Center, hepatologists and gastroenterologists may be in the same department. My husband is seen by a hepatologist in the Liver Care and Transplant Services Department at UW Medical Center.
In my opinion, it seems like you might be too ill to travel alone. Also, if you are getting an endoscopy or a colonoscopy, the hospital will not let you leave unless there is a responsible adult there to sign your release papers for you as you will have been given sedation.
As others above have said, with your advanced liver disease, you need to be under the care of a hepatologist. The University of Washington Medical Center has a Hepatology department within their Liver Care and Transplant Services Department. Harborview Medical Center, which is also part of the University of Washington Medical Center also has a Hepatology Department. You need to have a good hepatologist who is connected to a transplant center managing the care of your liver. Getting a colonoscopy and endoscopy performed by a Gastroenterologist may be a step in that care, but you need a good hepatologist overseeing your care.
I am concerned about you making the trip to Seattle on your own and finding your way to the UW Medical Center on your own and navigating through these procedures and getting back home on your own after sedation.
My husband's hepatologist is Renuka Bhattacharya. Here is a link to the contact information for my husband's Hepatologist at the UW Medical Center:
If you send me a private message, I will send you my name, my personal email address, and my cell phone number. Maybe I can help you on the day of your appointments in Seattle. My husband and I live in the south end of Seattle, which is only 20 minutes from Sea Tac airport. UW Medical Center is about 10 miles north of our house. Also, if you could include in the private message the name of the doctor that you are seeing, perhaps I can help you figure out if you are in the right department or if you need to contact another department.
Advocate is right.
Someone needs to drive you to Seattle NOW. You can not take care of anyone until you are healed. Your disease has advanced to a serious condition and you really cannot wait any longer.
Have your doctor call Seattle and arrange for you to be seen at one of the transplant centers as soon as possible, do not delay.
i do take spirolactonone.I don't have ascites I don't know how I gave that impression ,forgive me.Lactulose has not been prescribed for me ,my ammonia levels are not elevated.The Gastro saw me in the spring and gave me my meld score I was thinking of calling him to get it again because I forgot.The docs I see now are all connected so they keep track very well.I have pitting edema.I AM currently waiting for Charles Calhoun program Coodinator at the UWMC Liver Care Services to call me right now!He will make my app.there are app. on Modays and Thursdays I have left a mess stating need app. for the 8 of November.There is no one to drive me to Seattle.I can take a bus to Wenatchee and then go in the a.m. to seatac return spend night in Wenatchee and return on bus in the Am.I never did drive much so me driving me is out of the question.I am just glad to finally have the finances and the mode to get there!Thanks for all the help and I do take this seriously.I am sorry I make it sound as if I don't.I have some other calls that I need to make to get some info in the meantime,like I can't remember what my MELD score was.and I am calling the office to get it again.My platelets have been low off and on since 1999.I delivered a baby with a platlet count of 18,000 nothing short of a miracle.She was born November 11,1999.I WILL be around for her life.
I live very rural and 3 doctors told me to just make it before the snow flies.That there was nothing the Center in Seattle would do for me at this time other than I can become known to them and possibley a Liver Biopsy...it's been 4 years since I had one.I do know that because of my platelets that my only option is transplant will see if I can make an impression I have been told by the Hepatitis C doc in Wenatchee that they are difficult.The only things I am worried about are the 15mg.of Methadone that I take daily (down from 60mg. and all the stress I started to smoke again.Thanks again will keep informed.
I think I mis-read your original post. When you said you weren't taking the lasix, I thought lactulose.
It's not that I don't think you are taking this seriously but if you do have hepatic encephalopathy, your thinking would be affected.
According to my hepatologist, ammonia levels do not always show whether a patient has HE.
All your symptoms point to decompensated cirrhosi, ESLD,s and although your doctors may be connected, none of them are hepatologists, meaning they do not have the advanced training in liver disease that a hepatologist has.
Again, the only one who can truly tell if you are a good candidate for a liver transplant would be a qualified hepatologist experienced with liver transplants.
Also, I did not have trouble with the cramping until I was severely decompensated. This is why I see this as a red flag alert.
When did you have your ammonia levels last tested or your MELD score ? These things can and do change.
If it were me, I'd get to Seattle by hook or crook. But you are not me.
I wish you the best of luck with whatever you decide to do.
Charles did not return my calls to schedule me and app. today.I called 3 times and left messages so 2morrow starts with demanding a reply from him or contacting my Doc to call and get me the app.!I lived off-grid for 15 years and worked very hard walking up and down the slope amost daily.After we moved here I became slighlty sedentary and now it seems the days I really work I get the leg cramps.Interestingly enough I don't get them if I don't take my Methadone.It is such a small dose you wouldn't think it would matter but I guess it changes something.I went to physical therapy for an aching hip last Winter and the cramps left then.?I intend to complete my Methadone cessation but I will do it now at only 1/2mg at a time to avoid full blown withdrawals also I am in control of the cessation no one told me I needed to quit I just knew it would make a beter impresion on the t-people,I was told several times UwMC has buggers. and a couple months ago I started smoking again,bad me,and coupled with the Methadone they will probably passme over in favor of someone who has it together better than I.I am not getting my hopes up.this has been one of the reasons I have dragged my feet in the past.Who wants to hear "I am sorry we can't help you"?
Yeah, I got those cramps, worse and worse, until I
went into Treatment, but I didn't have cirrhosis yet, only headed in that direction.
I know coconut water has alot of potassium in it,
and I would also try a bath with epsom salts. I would scream also, and I would be trapped on the bed, with the leg cramps, but when I tried to get up off the bed, it turned into an abdomen cramp. Also, my fingers would cramp up, and stick in weird positions.
You should try to take it easy, so the muscles dont get strained, so sorry you are having this pain.
If I might ask when did you dose reduce your Methadone? Although this is unique to each individual 60 mg to 15 is a drop that could cause leg cramps ~ especially the kind that are more pronounced when you are relaxed (in bed). Plus if you started smoking again then maybe you are over stressed. When did your leg cramps become so severe?
This is all if there is any possible connection.
Cramps so bad that they put pressure on your bladder and having to go to the restroom in the middle of the night make me wonder if the ratio of your Lasix (furosemide) and spironolactone is balanced (100:40, or 50:20)? I took that combo for a few years and leg cramps would sneak up on me if I took to much furosemide.
Have your legs legs may feel heavy, tired, or achy at the end of the day or after prolonged standing? Sorry if that comes off as nosy but I had a terrible problem with venous insufficiency at one time. It was very difficult to "manage." I wore graduated compression stockings daily at one time and everything. Be sure you have your oedema (re)evaluated when you see your specialist.
I had the leg/foot/toe cramps while on tx, and yes, the pain was horrendous!! I've had 2 kidney stones and I swear the cramps were almost worse! My "noise level" was no where near as difficult to control with the stones.
Follow OrphanedHawks advice on how to get out of the bed (as hard as that is!) and get to a wall to do the following....I swear, if you can get to the wall, this does work!
Stand at arm's length from a wall with hands on the wall.
Place your right foot behind your left foot.
Slowly bend your left leg forward, keeping your right knee straight and your right heel on the floor.
Hold your back straight and your hips forward. Don't rotate your feet inward or outward.
Hold for about 30 seconds.
Switch legs and repeat.
To deepen the stretch, slightly bend your right knee as you bend your left leg forward. (Shown as calf stretch #2 at Mayo Clinic link)
I started doing a few of these stretches daily, and it seemed to make them less intense when they did occur, but when they do, this stretch was a miracle for me.
They can be caused by dehydration, anemia, or whatever. Increasing potassium did not seem to help and there wasn't much I could do about the anemia, but increasing fluids (gallons) seems to make a huge difference for just about everything during tx!
I just have a nasty cold that is clogging my breathing.I am Not a defeatist!Just care-laden.I am sorry I should be clearer in my messages and post on the positive in my life.Grandfather cares for me his love is unmeasurable it's the stuff I keep trying to control that gets me worried.Thanks All for Love and Compassion.
In my opinion based on my experience the advice to negotiate yourself out of bed to walk and stretch and prophylactically: "not bend", i.e. flex your muscles, is the only way to deal with these attacks. Indeed such cramps are really shocking and creepy (waking one up like they do) and on a 1-10 scale (I used to do pain perception inquiries) they are an intense 10.....I wish the supplements alleviated the cramps but when liver disease and/or HCV and.or cirrhosis is the cause - in my experience you have to bite the bullet and get out of bed......Guess what: I'm cirrhotic and for now (3-4 months post triple therapy) I have alleviated the virus and guess what: No cramps since therapy: what a great x-mas present. My best. d
Faith really makes some good points. If anything don't forget about calf raises or even toe raises. You can do them sitting or standing. While not necessarily to solely help with leg cramps they work the venous pump which is instrumental for venous insufficiency.
When you walk and your leg muscles squeeze, the venous pump works well. But when you sit or stand, especially for a long time, the blood in your leg veins can pool and increase the venous blood pressure.
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