Need some advice regarding pain mgt

[painenduser]

Hey guys,

I am hoping that this is the correct place to write this thread. I have end stage liver disease, which by all purposes I am told should not be a painful disease to suffer from. However, I have been experiencing immense visceral pain in the location of where my liver is. I have had a cholecystectomy which was supposed to rid me of my pain but infact it didn't and since then my pain has been worse. My pain mgt doctor has been treating me for this for te last 2 years however recently my GI specialist has run some tests to help determine my prognosis as well to see if he can find out exactly what has been causing me the pain. As of now he has not been able to find the source of my pain and he relayed that to my pain mgt Dr. Because of this my pain Mgt Dr has decided that since the GI expert has told him that there should be nothing he can see that is causing my pain, my pain Mgt Dr has decided to started to take me down off of the pain meds. The problem I ave with this is that I am truly in alot of pain and reducing my meds will causing me great agony. So what I am hoping you guys can tell me is how if there is nothing to prove my pain, I can explain to my Dr that I am truly in alot of pain and I do not know what to do. Has anyone else here had something that has caused you alot of pain but yet the tests they have run have not been able to pin point the cause? And what did you do? I certainly can not live the rest of my life in severe pain, and being that I have no insurance because I am on welfare, I am limited to how many tests I can afford to have. I just don't know what to do at this point and could really use some guidance. Please help if you can. Thanks! I really need some advise.

 

[muvolution]

If you aren't happy with your doctor, get a new one. They work for you, not the other way around.

They are providing a service, if you aren't satisfied, find someone who you are happy with.

 

[painenduser]

muvolution, I thought about this but I have two problems working against me here, 1) I live in NJ and pain mgt doctors are very very scarce around here, and 2) Being on welfare and having no health insurance I have to pay cash which is a red flag for most Dr's as they think cash payers are in it for abusing meds, this also limits me because being under welfare I only get a $125 cash allowance per month and that is how much each office visit costs to see the Dr I am currently seeing, most pain Mgt Dr's around here cost almost double that and since I can not work right now I have no additional money to see any other Dr's. This is why I was hoping someone may be able to give me some advise that might work to get my Dr to change is mind and continue to work with me and keep me on the meds I'm on. He tells me that since the GI Dr says that I should not have any pain based on his tests, that he can't keep writing me for a pain that should not exist... I'm kinda in a catch 22

 

[muvolution]

Wow man, this situation is a bummer. Good job and much respect for sticking in there.

I have an injury that hurts and was told by my previous pain management doctor that because an x-ray and ultrasound had turned up no cause for the intense pain, that I shouldn't need as much medication as I was on, or perhaps medication at all. She told me, "If you weren't already on these opiates I would give you the Rx strength ibubrofen and send you on your way." Word for word.
Can you believe that shit - the arrogance that doctors have the audacity to display. To think that you are infallible and if you cannot find the cause, there is no pain, is the most selfish, egotistical, and illogical way to practice medicine ever witnessed, and it is a growing trend.

I fucked up my ankle bad and took a huge chip out of the bone, but was fine, had a little pain once in a while. no doctors, no meds necessary. A year later, I broke my ankle on the outside this time, though. Again, very little pain, healed fine. After that I had another really minor injury to the same ankle that I would have thought nothing of, except afterwards, over about a month, it developed into an incredibly painful condition in the area where I had first chipped the bone. Really, most of my ankle was in throbbing pain. 9/10 worse than a broken bone.

So that's the pathology, and she fucking tells me that she can see no reason for it to hurt. It's almost as astounding as yours.

End Stage Liver Disease --> ?????? --> Severe Pain. To say that there is no "??????" because the very limited diagnostic tests the doctor did didn't show the cause is willful ignorance.

I would present it to your doctor as such, but don't attack him. Maybe talk about how just because the urologist's tests didn't show an obvious cause of the pain, it is reasonable to assume that severe pain in the area of a damaged body part or organ is related somehow, and that the pathology a certain case presents somehow causes pain, whether the means are known or unknown. A clear pathology for the pain is not necessary to understand that the pain is there despite what *should* be happening. Make sure you indicate to him that the pain is severe, and it does inhibit your ability to function normally because of the severity. This is the true sign of severe pain, as I'm sure you have noticed.

You could explore other options as well:

a) search the area for doctors that do spinal anasthesia, sympathetic nerve blocks, spinal stimulation surgery. These are usually back specialists, but when you have "unexplainable" pain in the body, they can isolate the nerve bundles that run to that area and place a long-lasting injection into your spinal column positioned where it will block the pain signals of those nerves. Worth every cent.

b)stick with current doctor and fight it out.

c) get on medicaid, or the new government program that replaced it. If you are eligible for welfare, you should be able to get Medical care as well.

Forgive me for being blunt, but how imminently terminal is the liver disease? Like what is the percentage chance this will be fatal at 3 months? 6 months? Do you have any assets you can take out loans on?

You could always find a loan shark and fake your identity and say it's for gambling or something. As long as you don't connect your debt to your family, it isn't an issue. And it would be totally fine from an ethical standpoint.

Also, try to look for charitable organizations for people with terminal conditions, especially if they specialize in palliative care. In fact, you should really be looking for a palliative care Physician or P.A. that will work with indigent clients. These kinds of doctors, nurses and P.A.s are much more compassionate - it wouldn't matter if there is an identifiable mode of action for the pain, that there is pain and you have a chronic disease, and you should be as comfortable and functional as possible for the remainder of your life.

Good luck, I hope something good happens for you. In the meantime take as little medication as possible to conserve it so you have it for when the pain gets exceedingly intense or unbearable (moreso than usual).

 

[painenduser]

Wow man, this situation is a bummer. Good job and much respect for sticking in there.

Thanks man that means a lot to me! It's rare to see compassionate people when your dealing with pain. There is so much of a stigma around us because to everyone else, if your on pain meds, you must me an addict. Bull shit!!!

I have an injury that hurts and was told by my previous pain management doctor that because an x-ray and ultrasound had turned up no cause for the intense pain, that I shouldn't need as much medication as I was on, or perhaps medication at all. She told me, "If you weren't already on these opiates I would give you the Rx strength ibubrofen and send you on your way." Word for word.
Can you believe that shit - the arrogance that doctors have the audacity to display. To think that you are infallible and if you cannot find the cause, there is no pain, is the most selfish, egotistical, and illogical way to practice medicine ever witnessed, and it is a growing trend.

I can believe it, the arrogance of even nurses anymore are the same way, they all have to preach down to you like your doing something unethical by explaining your in pain, to them, you must be a user, trying to score pain meds... Thats the feeling I get after talking to these people. Sorry to hear about your trials .

I fucked up my ankle bad.

Sounds like you went though a bad time with your ankle sorry to hear that, I hope it's all on the mend.

End Stage Liver Disease --> ?????? --> Severe Pain. To say that there is no "??????" because the very limited diagnostic tests the doctor did didn't show the cause is willful ignorance.

Well we really don't know yet, I just had my last MRI Monday. 2 years ago it almost killed me and I was in the hospital for 2 months in ICU, but I managed to fight it off and with no real intervention like dialysis or anything, I pulled through. The prognosis back then was no more then 5 years which since it's 2 years later that should mean I only have 3 left, but my recent tests appear that I may have done what would be considered a miracle in the medical world and reversed alot of the damage, and only the MRI will tell so let's keep our fingers crossed! Of coarse this is where the fuel is added to the fire regarding why they say I shouldn't be in pain but the truth is that for what ever the reason, I have a very strong visceral pain in my liver!

You could explore other options as well:

a) search the area for doctors that do spinal anasthesia, sympathetic nerve blocks, spinal stimulation surgery. These are usually back specialists, but when you have "unexplainable" pain in the body, they can isolate the nerve bundles that run to that area and place a long-lasting injection into your spinal column positioned where it will block the pain signals of those nerves. Worth every cent.

I talked to my Dr about this but because I have no health insurance and I have no income other then the $125 a month from welfare (I haven't been able to work due to the severity of the liver disease), I can not afford the nerve blocks, in total they can cost thousands and thousands and sadly from what I have heard from people that I know that have had them done, the success rate is fairly low (although I imagine alot of tat has to do with how good the Dr is). Not to mention you need maintenance shots too. This is why I wanted to stay on the meds because it is much cheaper to be on the meds, you will understand why in my next answer.

b)stick with current doctor and fight it out.

Probably what I'm going to have to do.

c) get on medicaid, or the new government program that replaced it. If you are eligible for welfare, you should be able to get Medical care as well.

As you stated being on welfare I am covered for medicaid and I have it, but with the NJ medicaid I have the only thing that the medicaid package (G i believe) covers is prescriptions and a discount on certain medical bills, but it's only at most like a 20% discount and what is covered is VERY limited

Forgive me for being blunt, but how imminently terminal is the liver disease? Like what is the percentage chance this will be fatal at 3 months? 6 months?

Well as stated above we really don't know at this time. Originally I wasn't even supposed to make it home 2 years ago, and then last year I almost died after then did a cholecystectomy, I had major complications of pneumonia, pneumothorax, and MRSA. I was in ICU for 2 weeks from that one, and now most of my tests are coming out as if I cured myself which is in theory impossible with the damage that I had done and was recorded in my medical records, so I really don't know atm.

Do you have any assets you can take out loans on?

Not a single one. My house is in foreclosure, no bank accounts, 401K is gone as it was used to pay my original doctor bills. I'm in the process of filing bankruptcy. I have nothing left bro other then my life and that is questionable

You could always find a loan shark and fake your identity and say it's for gambling or something. As long as you don't connect your debt to your family, it isn't an issue. And it would be totally fine from an ethical standpoint.

No balls to do anything like that and wouldn't even know where to begin even if I did, so I'll skip this one

Also, try to look for charitable organizations for people with terminal conditions, especially if they specialize in palliative care. In fact, you should really be looking for a palliative care Physician or P.A. that will work with indigent clients. These kinds of doctors, nurses and P.A.s are much more compassionate - it wouldn't matter if there is an identifiable mode of action for the pain, that there is pain and you have a chronic disease, and you should be as comfortable and functional as possible for the remainder of your life.

I have charity care with the local hospitals but it only covers the hospital bills, not the Dr's nor specialists. I don't know of any home care agencies that I could get for this, but you did give me something here to look into. I will definitely look into this tomorrow and call the local social services to see what they know regarding this and see if they can point me in a direction of some place to contact for more info. Thanks for the idea!!!

Good luck, I hope something good happens for you. In the meantime take as little medication as possible to conserve it so you have it for when the pain gets exceedingly intense or unbearable (moreso than usual).

Me too my friend, me too. It's a shitty road I'm going down and rarely do I ever see that glimmer of hope at the end of it, but with any luck maybe things will change, especially with more people like you giving me some hope! So for that I thank you. Right now I am hoping that I get approved for my Social Security Disability, because if I do, I will have much more money coming in to be able to pay for a better Dr and better treatments. So keep me in your thought, prays, or what ever you do (I'm agnostic so I do not believe in the power of prayer but, I will never stop someone who believes in to from including me in case I am wrong about that whole thing when the time comes and I find out! Thanks again for listening and sparking even just the tiniest bit of hope in me!!