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Old 09-12-2011, 08:43 AM   #1
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Question Pain Management with Liver Pain

I am new to the board, and realized just how helpful and active it is. I have an enlarged and inflamed liver that keeps my pain level between a 7 and a 10 on a daily basis without pain management. I saw my GI last Friday, and he said that other doctors may be involved he wanted my primary care doctor to take care of my medications. Great idea, except she referred me to a specialist for a reason, and right now he is the only one treating me. Does it make sense to have a patient call another doctor to prescribe pain medications, especially when they are narcotics? Needless to say, the primary care doctor said that she wouldn't do it, and she didn't feel right having him say it was her responsibility. I am in an awkward position, being pitted between two doctors. Why can't they just communicate directly? It just doesn't make sense to me. So have you had to do this? How is your pain managed if you have a liver issue? Thanks for any comments you may have. I am about to pull my hair out, and there is a LOT of it!
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Old 09-12-2011, 09:48 AM   #2
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Re: Pain Management with Liver Pain

honestly, it would just make soo much better and plain common sense for a "specialist" in the area where your pain and issues are to also be the one to actually manage that level of pain that is generating it too? i totally get ya, trust me. there really is no real reason why that GI cannot "do' PM for an actual patient, none, except he does not WANT to appear to take on that responsibility FOR you. this really IS stupid and negligent for him to even do to you when he simply KNOWS better than most docs, just how much pain you are indeed suffering and the underlying 'whys' of it too(in otherwords, you HAVE a fully documented REASON for needing pain care). he would just be the most qualified in the overall understanding of what you are dealing with and what your basic NEEDS are too. you may want to do a couple things here.

either ask this doc OUTRIGHT why he cannot manage your pain since he simply HAS more than likely had the most experience in dealing with this "brand" of pain and the most appropriate meds for you to even be using as well. OR seek out another more caring and knowledgable GI who DOES simply 'do' ALL overall care that is required with something like this. there is also getting a referral to a really good pain managment doc to help with this as well. a good pain clinic doc is priceless. either the PM can decide how to treat your pain at the clinic or he or she can also speak with your GI doc as to what the best possible overall pain care for YOUR condition and liver numbers just are too. what have you BEEN taking for this? who was rxing this for you in the past?

i have had to start seeing one back in 2004 for the aftermath of my spinal cord injury pain syndromes that do not respond to any real narcotics. along with very severe pain from myofascial/muscle damage and a deteriorating c spine. they are also helping me manage my polycystic kidney and liver disease pain too since things have gotten wayy too huge in me now. i don;t know what i would do without all the many different "tools' and meds availiable in a good pain clinic like i was lucky enough to find/be referred to by my primary, who HAD been managing my pain after the surgeons timeframe stopped.

these are at least some possible options for you. no one deserves to have to be left to suffer when you just NEED pain relief/management in this day and age. that GI doc would seem the most logical person to manage, but unfortuently it appears he wont. but you DO have choices/options for this. i seriously tho, would consider switching GI docs since this one really bothers me in that he simply will NOT 'do' what is expected when you just have a big ole painful GI related issue. you just should NOT be left to find pain care on your own.

your primary doc is 'supposed to be' your advocate here with this type of crap and should be conversing with this GI doc too on your behalf if the GI is not going to take over PM for you. then things kind of fall back onto your primary to fill in the 'gaps' there til 'something' can be figured out here. but if nothing gets accomplished, ask your primary if they can just rx what you need til you can either get in to see another better GI doc or at least get into a good pain management clinic where they can take over that responsibility. that primary 'shouyld be able' to cover you til someone finally takes charge of managing what i KNOW is and can be horrific pain. my son went thru liver failure and Tx many years ago, and believe me, you do NOT ever forget watching THAT horrid ugly pain play out.

do they know why your liver is enlarged and inflammed? is this the actual liver itself that is inflammed or the bile ducts within the liver? just a suggestion here that we had to use with our son MANY many times, usually daily while still at home with his pain? plain old ice packs placed directly over the pain area itself really did seem to help him, even when he developed pancreatitis(he was only 12) that his stupid resident doc never bothered to check out despite this one horrid pain being the chief complaint over four visits he had with this stupid woman? it really was sick. all we kept getting told is 'he shouldn't be having THAT much pain'. well sorry, he IS. grrr. and had she bothered to actually 'do' anything like testing then, she would have found out WHY.

i do hope this helped some and gave you at least some options to look into. no one should have to suffer the full blown impact of severe(acute or chronic) pain when there ARE many different ways/meds to at least take that horrid edge off. thats the best most can hope for with very severe pain, taking that nasty edge off and get to somewhat tolerable. good luck with this and i hope you can get some relief soon. marcia
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Old 09-13-2011, 09:14 AM   #3
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Re: Pain Management with Liver Pain

I want to thank you for taking the time to respond to my post. Yesterday I spent literally hours on the phone trying to get something, anything, to dull the pain. I had 17 blood tests done, will have a liver biopsy done, and depending on the results of the blood tests, will have either a CT or an MRI done to get a better picture of what is going on with the liver, pancreas, kidneys, the whole 9 yards. They already removed my gall bladder and my appendix, and I had a hysterectomy this past May and had endometriosis removed. There is a possibility that there is endo still growing in strange places (they originally removed it from some strange places, and it was deeply infiltrated in some of my soft tissues) since I still have my ovaries. I understand this is all a lot for him to take in, and I only have had one appointment with him since 3 years ago when they found a liver tumor in a CT scan to find out why my "ribs" were hurting. The first thing he did was refer me to an oncologist, who promptly did testing the GI should have done because it was determined to not be cancerous. I was really scared during that time, being a mom to smaller children and really not that old (34/35).

As for what I have been using up to now: I have a pretty high tolerance for pain, but when I decided to have the hysterectomy, my GYN/UR knew I was nervous about pain after the surgery, so she called in medication with refills for me, just to put me at ease that I would be taken care of. I had been using that, as well as other medications that had been rx'd for pain, and I just didn't have any more. I was trying to avoid NSAIDs and Tylenol, etc. and that was all I had to turn to.

The story now (how it all changes in a day when you call so much): The GI doctor is going to talk with my PC doctor about pain management once some of the results start coming back, primarily the biopsy (which has yet to be scheduled for some reason). Then the two of them will make some decisions, and my PC will take care of my medications for this. There is a possibility that the pain management center will be used, but at this point no doctor is really all that sure what they are dealing with. Apparently there is a possibility it could be autoimmune issues attacking my liver (that is what happened to my thyroid) so that would be treated differently than if my liver is just not functioning correctly on its own.

So, I am covered for FOUR days with Norco. I was told it was going to be for ten, so I called this morning for some resolution on that. 4 days will get me right to the weekend which puts me right where I was 2 weekends ago, back at Urgent Care or the ED to have something done for the pain. As you probably know from your son, no one wants to give meds to someone with a liver issue, especially if it hasn't been determined what is happening with the liver. I just hope and pray that he calls something in before the weekend.

Again, thank you for your thoughts on this. You are in such a hard place yourself, and I feel guilty for bringing all this here when I am sure others are dealing with so much more. Thank you again.
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Old 09-18-2011, 10:42 PM   #4
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Re: Pain Management with Liver Pain

I am very sorry to see you going through so much pain.

I know a little of what you're going through. I have had daily abdominal pain for 5 years ranging from 4-8 throughout every day. I even had surgery trying to find out what was wrong. We haven't had any luck yet.

I finally went to a pain specialist. He prescribed oxycodone 5 mg as needed. It is not oxyconton!! It never stopped the pain but it did make it more bareable. I haven't found it to be addicting either.

First, fire the liver doc. They are no different than a plumber. They work for you. You can fire them any time. Your primary care physician should be able to refer you to another one.

Most importamtly check with your insurance. Call the 800 number on the back of your card. A lot of insurances nowadays do not require a referal to go to a specialist. If your insurance has that then go to any pain management clinic that is in network. Your insurance rep may even be able to give you a list of in network clinics.

If you have that, as soon as you can get an appointment you can get some pain relief. You may have to try 2 or 3 different meds before you find the one that works best for you.

I hope this works out for you. No one should ever suffer unneccessarily.

Good luck.

Have a happy, healthy day.

lizanded

Last edited by lizanded; 09-18-2011 at 10:56 PM. Reason: added important info

 
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