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3211536 tn?1359389169

Muscle cramps

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.
Thanks  Snow
19 Responses
163305 tn?1333672171
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.
Good night,
OH
3211536 tn?1359389169
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!
446474 tn?1446351282
Hi.

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.

Good luck.
Hector
Avatar universal
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:

http://www.uwgi.org/directory/Directory.Resultpage.aspx?PersonID=1059

Here are the clinics that she practices in:

Clinics
Liver Care & Transplantation Services at UWMC
University of Washington Medical Center
Box 356166
1959 N.E. Pacific St.
Seattle, WA 98195
206.598.4973

Transplant Services at UWMC
University of Washington Medical Center
1959 N.E. Pacific St.
Seattle, WA 98195
206.598.6700

Liver Tumor Clinic at UWMC
University of Washington Medical Center
Room: 3202A
Box 356165
1959 N.E. Pacific St.
Seattle, WA 98195
206.598.4477

Here is the link for the Liver Care and Transplant Services department at UW Medical Center:

http://www.uwmedicine.org/patient-care/our-services/medical-services/Liver-Care-And-Transplantation-Services/Pages/default.aspx

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.

Advocate1955

Avatar universal
There are no doctors on this forum.  Once you get yourself properly evaluated you will know the best path to follow.

163305 tn?1333672171
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.
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