Emotionally exhausting-so true. I read your response to my post and just to know that someone else out there has the same issue made me cry. (In a good way-like a cry of relief that what I’m going through might have some sort of explanation vs. the run around I get from my medical team.)
The best I ever felt emotionally about my pain was when my GI doc (not my hepatologist) told me that another patient of theirs (they work in a team to manage the few PSC patients they have since we all seem to have some sort of IBD) had similar pain to mine. He said that was the first time he thought they might be missing a significant symptom that might be associated with this disease. I never asked any follow up questions-I thought it would be weird 6 months later to walk into his office and be like, “so remember that guy you were telling me about who has pain like me? How’s he doing? Can I have his number?” Lol. “And follow up question, have you published my case-report yet? Have you updated the guidelines to state that PSC can cause chronic RUQ abdominal pain? What? You haven’t? But there are TWO of us!”
So when I found out that one other person might have a similar experience to mine and I got that excited, you can imagine how great it felt to hear your response, and the other responses on this post. Because I have heard all of the things that have been mentioned on this string (the liver doesn’t have nerve endings, PSC doesn’t cause pain, etc.) combined with the fact that I am, laboratory speaking, in remission, I just figured that they were correct, and that one of a few things was happening: 1) I was crazy, 2) I have an incredibly low tolerance to pain, 3) I have some other undersicovered issue lurking in my body.
Now it’s been ten years since all this happened. I work full time and I have finally stopped blaming myself for the pain. (I mean other than the “mope” fest I seem to throw for myself twice a year in which I give in and just feel really really bad for myself for about 48 hours.) But I do mean that-when this all started happening, I blamed myself. I blamed myself when I would wake up in pain. I would blame myself when I felt like I wasn’t strong enough to work. I would blame myself when I had to take medication for the pain. (I still do that)
Mark, you made a comment earlier about not taking pain medications. From someone who takes them every day and doesn’t want to, let me be the first to say, easier said than done. On my best day, I still need to take at least one tramadol. I beat myself up for having to take nucynta at bedtime. I don’t want to take it. But when I don’t, I don’t sleep-the pain either won’t allow me to go to bed, or the pain will wake me up once I am asleep, and I won’t be able to fall asleep again. It’s such an awful balance. When I take the medications, I can function and sleep. When I don’t, I don’t function and I don’t sleep. I don’t abuse the medications I have, but just having to rely on them feels like a weakness. (This is 10 years of managing pain in the same way and I still feel so much guilt!) I’ve tried many other options, all equally bad for my liver-which by the way I didn’t care about because the pain is so life changing that you need to figure out some way to still live and be yourself. I was on elavil for a long time, and it worked awesome-until I became tachycardic and had to stop taking it. I’ve tried other antidepressants for pain management, but none of them work for me the way elavil did, so each one I’ve stopped-I definitely agree with if there is no benefit and they may pose a risk, than its obviously a no-brainer.
It’s tough. Every day is a new struggle. And I also want to say, I feel guilty for being as healthy as I am! Every 6 months I go back for an MRCP that shows no progression, and I see some of the posts on this site of people needing transplants and suffering with failing livers, and I feel terrible that here I am, with, relatively speaking, what may be the best liver in the group (or at least one of the best lol) and I struggle so much! It’s hard not to think, “What’s wrong with me?”
But you know what is great? How awesome all of you have been. Every single one of you-
And I can’t wait to hear the response I get back from my doctor! I sent him an email last night asking him about a possible stent left in and he’s probably thinking, “what’s this crazy bitch want now?” Lol-maybe I should try the Mayo Clinic.