Has anybody ever felt overwhelmed by the pruritus to the point where you don't want to continue living like that and wish your life could stop right there? I am not going to do anything silly I just want to know if I need treatment for depression or that feeling after one of the toughest weeks can go away by itself?
You're not alone! The pruritis can be horribly distressing, debilitating and color every waking minute of one's life. I've only had it a few times to that degree and it's what I dread most about the progression of this disease. Antidepressants are sometimes used to suppress the pruritis, so that might be a place to start, check with your doc on this. Also check recent discussion entitled 'Itching' for other suggestions that members have had good results with.
Mariale, when the itching on my legs got horrible, my dermo prescribed mometanos, which worked like a charm. I used in for about two weeks in February, and rarely since. It reduced my itching about 95%.
If your hep Dr. or liver doctor don't prescribe anything effective, try a dermatologist. Mine helped my keep my sanity.
Jeff
Thanks Alix and Jeff. I will ask my liver doctor about mometanos
Mariale,
Correction on the name-it is mometasone.
I'm sorry to hear you have had a tough week. I used to have a lot more itchiness, especially at 4 am to 6 am. Now, it's far less. I could attribute this to only two changes in my regimen. But it quite possibly has nothing to do with those. So what I'm saying is pruritus might be variable, and may not stay the same for you.
My suggestion is to start putting a little money aside for a possible visit to a psychologist in the future. You can always avail yourself of that later on.
But yes, I have felt overwhelmed by the pruritis after eating almost any spice that starts with the letter c: chili powder, cumin, coriander, curry. (Cayenne is okay.;))
I am not the PSC patient but my son who was just diagnosed in April. He has not been stabilized as of today. He is very ill bili very high etc. This man never had any childhood illnesses no IBD etc. Yesterday, I was driving him somewhere and he started We were driving in the car my son started yelling I do not want this I do not want further treatment, I do not want a transplant I want no more test, no more poking and no more medications. He said I am 44 years old I have advanced directives and I can refuse what I want. I told him maybe u need to get into a support group he said do not send me anything like that I will not be a lab rat I will not be a science experiment. He was only diagnosed in April and has had a tough time not stable. He also said he wanted me to pull off the road and let him out, this was 20 miles away from home I refused to do this and suggested he might want to see a counselor that was the wrong thing to say I literally had to hold my finger on the lock door button all the way home. I stopped talking with and let him sit there and cry and yell and about 1 hour later he seemed better. I was so scared for him. Today my husband took our son to have another MRCP. I am thinking the build up of the toxins is a big contributor. I am not sure how long you have been diagnosed but his is less than 90 days so he is not coping. I wish you luck.
Triocha, I can understand that people with any chronic disease will have emotions that can run into the extreme at times..
And with any tirade, people seem to want to have an audience or target to blast. I'm glad you were there for him; but caregivers go through the wringer too.
I hope the news from the MRCP is good.
Jeff
Yes, when I am so tired, and can't sleep because of itching and restlessness -- can't sleep because I'm too tired, a terrible place to be -- or other times. The thought comes without my intending it, "this is too hard" and "it would be easier if I just wasn't here".
Right now I have a reprieve from some of those thoughts. This shift (it may not last, but while it is here I'm grateful) came when I started focusing on what I can do, rather than on what I can't, and stopped fighting how my body is feeling. There is a huge difference in my attitude when I think "hm, I'm groggy today, okay, that's going to be a part of what today is going to look like" versus when I think "why am I groggy? why can't I think clearly?" The one is based in acceptance, the other in frustration. It is a delicate balance, though.
So often I want to be able to do more than I can, and I end up in the same bog of frustration and depression.
PSC is an emotional marathon. Long, chronic, invisible desease often leads to depression and despair. I’ve certainly had a hard time over the years.
I found a wonderful book that has helped me emotionally, “How to be Sick” by Toni Bernhard. She applies principals of Bhuddism which helped her get through ten years+ of chronic illness. I also take doctor prescribed anti-depressents for chronic moderate depression. Finally mindful meditation has helped me but I stopped meditating for some reason.
I fortunately found a cure for itch, acupuncture. I haven’t itched in over five years. I’ve continued treatment and it has helped me avoid cholangitis despite stage 3 fibrosis.
Light treatment can also be effective. You should see a dermatologist for this. Itching is hell. I hope you can beat it
I read these post my heart breaks over how some of you are feeling.. because at some point I have felt the same way especially when I first was diagnosed in 2012 .... My only advice is this condition is Mind over Matter.. I choose to relax, by smoking Marijuana , which helped me to sleep at night, I also didn't worry anymore about my condition , took everyday as it came.. when I felt tired I would just go to sleep.. but I did start back working out in the gym.. like i did before my diagnosis.. and today I do feel great.. I train hard.. I also changed over to Buddhism which help me to look at life and everything in a different light.. so again its mind over matter..
keep your head up .... keep fighting .. pushing forward.
Thank you all for your support. I really apreciatte it, especially now.
That is a very good book you mentioned and I agree that sometimes Marijuana is helpful. No person should feel bad about using it if it helps. It is a shame that it has such a bad stigma.
Crixus said:
I read these post my heart breaks over how some of you are feeling.. because at some point I have felt the same way especially when I first was diagnosed in 2012 .... My only advice is this condition is Mind over Matter.. I choose to relax, by smoking Marijuana , which helped me to sleep at night, I also didn't worry anymore about my condition , took everyday as it came.. when I felt tired I would just go to sleep.. but I did start back working out in the gym.. like i did before my diagnosis.. and today I do feel great.. I train hard.. I also changed over to Buddhism which help me to look at life and everything in a different light.. so again its mind over matter..
keep your head up .... keep fighting .. pushing forward.