Hello
My husband was diagnosed with PSC coming up on 5 years ago this coming February. We have certainly endured every symptom it seems except jaundice. I say we because we are one. Is it hard, do we get sad, emotionally drained, yes we do. My husband deals with and it has gotten worse these past few months, but his fatigue is really bad. His itching is and has been horrific. At times, I had wrapped him in cold towels to give him comfort. His been admitted at least once a year for cholangitis. He has had several MRCP/ERCP. This past year we were on vacation and he developed Acities. When we got back, he was admitted immediately and had 10 liters of fluid drained. So, he is a diabetic and we have to watch his food, he has ulcerative colitis, liver disease and we changed his diet, now with Acities, his doctor placed him on a 2000mg salt intake diet a day. That is nothing. He laughs and says, "Well honey I'm down to bird food". One more thing he is dealing with and I am wondering if anyone else deals with this issue. It is muscle cramps. He can be reclining in the chair, laying in bed or on the couch and get hit with a cramp that will cause him to yell if not scream for help. It is horrible. Cramps in thighs, groin, calves, feet, toes, fingers, elbows, hands, fingers. Sadly, he has given up golf, his motorcycle because not just fatigue but now cramps. But this is now going to push him to stop working. He tries to drink as much as he can. Just wondering if anyone else has experienced cramping?? Also, I have read many blogs and certainly have related to so many. I pray for all of you. As hard as it can be.
Yes, my husband has those horrible cramps too. Mostly in his feet. I do a lot of foot massage for him. I mean, a lot! We have not figured out what they are due to, but thanks for this suggestions above, Stephen. Massage seems to help, so I do that when I can. We have spoken to the doctors about it, but nobody seems to know. Maybe some wisdom will be found here on the topic.
I too have been plagued by this problem. Last summer I hit on the idea of wearing socks to bed,along with a heating pad set to low at the foot of my bed. I had noticed that my feet were ice cold even in the heat of summer. My arms & fingers would also spasm if it was cold in the freezer section of the grocery store. Drinking copious amounts of Gatorade helps ,as well as Tonic Water.I have only had a half dozen incidence in a year . My doc doesn’t think this is the reason,but I can attest to it’s effectiveness. Many nights the crippling spasms would last so long,that the residual pain would persist into the next day. I hope this helps someone.It is certainly worth trying.
Yeah I too have this problem. Especially my legs at night, it would usually wake me up from my sleep. And my hands are always cramping, not so good with work when I drop tools etc
Cramps were something I suffered, too. I bought a bath aroma product called, "Batherapy." I got it at our local super food store called Meijer. A friend who had Primary Biliary Cirrhosis said it worked for cramps. Choose the Lavender scent and splash it liberally from the bottle on the cramping muscles. It is a concentrated blend of lavender, eucalyptus and other herbs. It seemed to help my leg and foot cramps.
I am two and a half years post-transplant, and all the PSC symptoms are gone. If transplantation is right for you, it is reasonable to expect a return to normal health. It is amazing! God is the healer with the assistance of dedicated healthcare providers, such as your husband. Faith is the gift God gave us to see our way through life's challenges. My wife and I both dealt with the disease. I could not have made it without her.
Twelve years after diagnosis, three-and-a-half years on the cadaver transplant list in three different regions, I was told my MELD would not go up enough to get a liver before dying. Being a Type O made acquisition even harder. A frank, honest statement from one of the transplant surgeons that I had no time left, go find a live donor. PSC is a disease that often does not produce a high enough MELD score before it is too late. A lot of prayer and hard work by my family and friends resulted in my 34 year old daughter's childhood girlfriend (living in another state) was tested and was a perfect match. I live today and everyday thanking God for her gift of life. Her liver regrew in 2 months and she is in perfect health.
I don't think patients with PSC in need a transplant are given the information about MELD and what the odds are of getting a cadaver liver. It's never too early to ask what your MELD score is and even what stage of liver cirrhosis you have. Doctors seem reluctant to tell you this for some reason.
I wish you and your surgeon husband all the best and will say a little prayer for God to give special consideration for one who has served mankind as much as you have.
Just a suggestion but you may like to try magnesium oil massaged into the affect area…it does help with the cramps I find.
Update...
Began protein powder supplement and cramping is virtually gone. 60 g of protein is necessary for a failing liver I am told. Check it out with your doctor, but low protein intake can lead to cramping... WOW... why didn't we know this sooner?