Chronic Pain

General
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Hi,

I’m feeling very alone and wanted to reach out to see if anyone else has this issue.

My tests look great-LFTs completley normal, MRCP shows no progression, etc. However, I’ve had chronic right upper quadrant abdominal pain since diagnosis when I was 24 years old. I’m 34 now. Comes and goes throughout the day, wakes me up at night, etc. It was what lead me to the doctor in the first place-that along with cholestasis after my gall bladder was removed. However, since I’ve been diagnosed, I’ve responded really well to ursodiol. I no longer find myself admitted to the hospital three times a year with jaundice. But the pain just won’t go away. And I’m so sick of hearing my doctor tell me its not the PSC. But to date, I haven’t met anyone else with PSC and not sure if anyone else has this nagging daily pain that they have to tolerate.

Looking to not feel so alone,

Kori

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Hi Kori,
Sorry you are having RUQ pain. It is one of those pains that we deal with with PSC, but I do have a couple of questions for clarification that may help.
-Have you ever had an ERCP? If so were stents put in? And if so, have they been removed?
PSC does strange things at times and every person is different. I did suffer much with RUQ pain and it also reached around to my lower right back at times as well. It is certainly not something that is easy to deal with.
-Are you under the care of a transplant hepatologist? If you are just seeing your GI I would encourage you to get in with a hepatologist. They will be best qualified as to whether your pain is PSC related or not. And if this doctor is a hepatologist and you are not satisified with his/her answer, ask for a second opinion.

I do hope you can find some relief. It’s also important to try and do some form of exercise, say 30 minutes 5 days out of the week. This will help keep your core strength up and moving around also will help with that RUQ pain. Good luck to you.

Mark

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hi I also had right upper quadrant pain from mid twenties onwards. I had no idea what that was (and yes was kept awake at night with regular discomfort ). Many years later in my fifties I was diagnosed a year ago with suspected PBC -possibly PSC. I hope to get talking to a heptologist this year. I haven’t yet met with one.Especially as I’m now reacting with side affects when at first I could tolerate the Urso medication.

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Hi Kori.
I’m sick of it too…I’ve been hospitalized twice because of the pain and only my primary doctor seems to agree that it’s my liver. My GI and Hep both say I shouldn’t have pain with PSC, my labs are always normal, etc… Mayo Clinic’s website and another hospital in FL’s website that I’ve found say that, yes, we can have URQ pain. A PSC patirntvin a Facebook group I’m in has collected information from members to present somewhere (can’t remember where) on how many of us have this pain in hopes to make it known that we aren’t all crazy! So, no, you’re not alone with the pain and no, you’re not crazy. :blush:
I do have Tramadol that I can take if I need it for the pain. My primary prescribed it. You should be able to get something to keep on hand for when it gets bad. A months worth lasts me close to 6 months, so they know I’m not abusing it.
Stay strong!

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Mark,

Thanks for writing back!

I had an ERCP right before I was diagnosed 10 years ago. My diagnosis was actually made with MRCP and liver biopsy because of how much my ERCP was botched. My current doctor at the time wasn’t even thinking about PSC when he did my ERCP. This was the second one that I had, and it was done by a normal GI doc after I kept being admitted to the hospital post-cholesystectomy with cholestasis. He did put in a stent at this point. Unfortunately, I developed severe pancreatitis from this procedure and almost passed away. Because of that, my current team of doctors said that they will not perform an ERCP on me unless the benefits outweigh the risks. I’ve been told that my risk of pancreatitis on subsequent ERCP is so high, they don’t think I’ll ever be a candidate for this procedure again.

So I’m guessing that stent is still in there. It’s funny-I’ve never thought about this before.

I am being seen by a transplant hepatologist. I’ve been in his care now for a few years, and was seen by a previous hepatologist who retired. My previous hepatologist was really the one that kept saying it wasn’t my PSC. My current MD, along with his colleague who I see for my ulcerative colitis, think that this is more of a grey area, and cannot be ruled out. Unfortunatley, the only thing that they have done for me is to get me chronic pain management from a pain specialist that I see now once every 2 months. I’m able to continue to work, and only call in if the pain is so much that I’m too distracted to do my work. It has completley changed my life though, and its been 10 years now of tolerating this pain.

Thanks for the tip about exercise. I have read your previous recommendations on other forums, and I know its important that I keep up my strength for the road ahead. It is difficult sometimes-I look perfectly healthy, and can fool everyone I know. But I struggle so much with pain and exhaustion that I have really let exercise become a thing of my past. I’m a healthy weight and walk as much as I can, but I know I need to do better.

Kori

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MarLena-

Thanks so much for the response. This really makes me feel better.

I do see a pain specialist, and have now for about eight years. My main treatment for the pain is also tramadol. I suppose it helps that the pain comes and goes, so I only need to take it when it’s there. I’ve also got a prescription for nucynta that I use at bedtime, because that is the biggest struggle for me. I feel like I am 85% of the time able to go about my normal business, but every once in awhile I get this string of unrelenting days that really crushes my spirit.

I’m so glad to hear that other people, esp those with PSC that is seemingly in remission, have this problem. It’s such a rare disease-I just can’t accept it when a doc tells me that PSC doesn’t cause pain. Shouldn’t we be the ones telling them what it causes? Lol.

Thanks,

Kori

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Exactly! We are the ones who feel it. Those with healthy lovers do not. One of my docs said I can’t have pain because there are no nerves in the liver, but I believe that chronic inflammation can cause our livers to swell or enlarge and press against the ribs and other organs causing our pain. I could be way off base, but I remember my primary saying something to that effect. I got so tired of hearing that the pain isn’t from my liver, that I’ve quit even mentioning it. Unless I have a fever and vomiting, I just deal with it. :roll_eyes:

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Kori,
I am deeply troubled of the possibility that that stent is still in there. Stents are breeding grounds for terrible sepsis and other duct infections. Please clear this up, are you currently under the care of a transplant hepatologist at a major hospital that does liver transplants? Not a local GI, not a Hepatology center in your community but the actual transplant hospital system? If not, you need to be seen by their best hepatologist as soon as possible. They have advanced endoscopists that may want to do another ERCP. There are other options as well besides ERCP, but that stent really needs to come out. You are going to be in big trouble the longer it stays in. Please check on this as soon as you can. This is really concerning. Not trying to scare you, but this could be serious if left uncorrected.
I’m hoping when you ask this question that they will tell you it was removed, but please be sure. I’m sorry you have had such a rough go of it. I wish I could bring you down here to North Carolina to see my team of doctors at Duke Medical Center. Take care and do let us know how you progress.

Mark

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MarLena,
You are so right about the pain. Technically the liver doesn’t have nerve fibers, but we patients are not concerned about the technicality of it all, we hurt and the reason is the PSC disease and what it’s doing to our livers. I would encourage everyone to avoid strong pain medications unless absolutely necessary. We have enough issues with our stomachs and processing fats properly due to lack of bile flow, we don’t need our systems stopped up because of the strong meds. But I know, sometimes you just have to take them to keep your sanity. It’s a balance I think and we so need a supportive family to help us through these times.

Mark

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Mark,

You definitely have me worried!

I am under the care of a transplant hepatologist at the University of Chicago.

I actually plan on emailing my physician tonight for him to address this issue with me and see what his concerns are. The ERCP happened 10 years ago, and to be honest, I don’t remember much from that admission because of the subsequent pancreatitis that left me in the ICU. I am going to ask him to pull those records and look into what his thoughts are on this issue.

Thanks for the direction.

Kori

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Kori,
Let’s hope for the best and I do very much hope that the stent was removed. And keep in mind, I’m no doctor, but I know what PSC does to the bile ducts as I had many strictures and ERCP’s over a 4 year period, so anything in those ducts has the potential to get clogged up. I certainly don’t want to frighten you unnecessarily but I don’t want to ignore it. Your post just threw up all kind of red flags and I’m only acting in your best interest especially after you had such a close call those years ago.

Rest well,
Mark

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Hi Koriann, your story sounds so much like mine. I was also diagnosed via a biopsy and MRCP. As a result of my ERCP, which did not show me having PSC, I was hospitalized for 8 days with pancreatitis. In regards to the stint, you most likely had X-ray to show if it left your body after the pancreatitis. And if you had an MRCP in the hospital- most likely you did too, they would clear you for that prior making sure the stint was out. They gave me an MRCP without contrast before I left the hospital. I ended up having my ercp in a different hospital than where I had my week long stay for the pancreatitis because I was in so much pain I had to get to the closest hospital. Most stunts are MRI safe but typically they don’t take a chance. So if you had an MRI before you left, you should be good.
In regards to the RUQ pain, much like you, I also have his recurring pain that gives me such anxiety and stress. Honestly the pain I can deal with for now it’s not terrible, but it’s the worrying that constant damage is occurring that gets me. My heptologist also says it’s nothing to worry about… but I still worry, pretty much all day. It’s so emotionally exhausting. You’re not alone, I’m right there with you.

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I read a few years back that while doing an ERCP if they see any stones they will pull them and there is a 1% chance a person can get pancreatitis. My dad was that 1% after going in for gallstones and after 4 weeks he died.

I have PSC and have had several ERCP’s and ERCP’s. I do get occasional pain but not extreme. I do have to say to Mark, however, that although I realize when you speak of not taking pain meds as it isn’t good for the liver is understandable; there are a gamut of other illnesses people may have to contend with other than PSC such as myself that involve taking MANY MEDICATIONS, inspite of it’s effect on my liver…I have a choice this illness or that?? Or try and balance them out. All we can do is the best we can do with what we are dealt with. In my case I have multiple illnesses that require many meds. I take what I have to and hope for the best. If I’m in dire pain and need a tramadol I’ll take it as I can’t take ibuprofen or Tylenol.
Everyone is different, as I’ve learned in life and there is no 1 recipe for each ones life.
And although there are many similarities to PSC I’ve learned that it, as other illnesses vary in degrees as well.:thinking:

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Janie,
I completely agree with you. I probably could have worded that a bit better. I just know that with the gut being involved with PSC that strong pain meds can stop you up like a clogged pipe and then with the liver not functioning properly you don’t get the proper bile to break up the fats, etc.
I know pain meds have to be used at times. My dear wife has to use them for other medical issues, but we just try to use the minimal amount when needed. And unless you are allergic to Tylenol, that would be the preferred over the counter pain reliever for folks with liver disease.
I hope that clears that point up :slight_smile:

Mark

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We know our bodies best and Mark’s advice is golden and powerful truth to think on. Keep fighting for answers and get some support while at it so that you’ve another or others to help you fight for your rights and goal of alleviating so much discomfort.
I’m just so sorry you and others are dismissed by those that know not much and assume we are just “making it up” somehow. I truly don’t understand it.
I am stage one and I feel it, and I have not had any ERCP’s etc like you have had. My Hep does not dismiss me on this matter in the least and if she did, I’d move on FAST. Matter of fact I will have my second MRCP in July and it has only been 6 months… just to double check on everything.

Sending a big Hug and loads of Support your way!

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Sara,

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.

Kori

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Hi Kori,

I too have PSC. I was diagnosed a little over a year ago on an MRCP, but was having symptoms before then. I too have RUQ pain, which started occurring about the same time as the other symptoms (nausea at times, some itching, elevated liver enzymes.) It seems to be worse when I exercise or do work around the house.

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Hi everyone! I’ve had RUQ pain too. The first time I had it was about an hour after I ate steak. I got a fever that spiked to 103 and thought I was going to pass out. This happen about a month after being admitted to the hospital with an official diagnosis of sepsis. My doctor believes it could be really slow moving bile that gets so thick it can act just like a gall stone. I learned for me that if I start to feel any discomfort, I should stay away from fatty, dense meats. Chicken and fish for me. Just my own observations of what seems to work for me for now. I’m sure I’ll have to adapt again in the future.

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Jkemp,
Thanks for your observations. I think you are on the right track in your thinking. Without proper bile flow, fat cannot be broken down and processed correctly and that will give you problems. If you continue though to have the RUQ pain without relief, it may be time to get labs and possibly an ERCP to try and dilate and clear the strictures in your ducts.

Mark

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Me too! Everyday. The “pain” what is it? Who knows, but it’s throughout the area of my liver, and sometimes in my back, where my liver is. It’s not horrible, usually. Sometimes it’s stabbing, but mostly it’s a dull pain.