Feel like I keep hitting brick walls with trying to get in to pain management.

[remar]

Sorry in advance for the long post. This all started about a year ago with a bout of gastritis. I've had it many times before and taking a PPI, recommended by my Dr, has always helped. Not this time. The pain only got worse and it was not just my stomach but my right side. Yes, I have had my gallbladder removed. The pain was so bad in Feb that my husband insisted i go to the hospital. I had seen my GP before this and she increased my Prilosec. This did not help. While in the hospital they did blood work and gave me and MRI. Everything came back normal and they sent me home with a small prescription of pain medication. I saw my GP again and she recommended another PPI and she gave me a small prescription. That was the only thing that was giving me any relief at all. In May I had so much pain in my side on top of pain in my chest that I drove myself to the hospital. I had a heart attacks 3 years ago so the chest pain had me really scared. They did a cath, my heart is great. Then they did an endoscope of my stomach. It came back with severe inflammation and old bile in my stomach. Strange, considering I had eaten nothing for two days. My GI Dr said he could not see the bile ducts because the scope didn't go that far. In the mean time my GP was taking care of my pain. That is until I went in to see her in Oct and she informed me that she would no longer prescribe anything for my pain and to just deal with it. She gave me a months supply of my medication and mentioned finding a pain Dr. I immediately started my search. One of my mothers best friends recommended a pain specialist that she was seeing for undiagnosed stomach pain. It took me a month to get an answer back from her. She said she would not see me because I had no diagnosis and that she did not even prescribed pain medication. Funny that our friend sees her and has no diagnosis as of yet buy this same Dr prescribes her pain medication. The search was on again and it looked like I may have found a pain specialist to see me. I told them from the beginning I was taking pain medication. After the first specialist rejected me I went back to see my GP. I guess she had a change of heart and has been prescribing my medication. I get a call today from this Drs office asking if I had insurance. I reminded tham that I did not have insurance and told them I would be self pay from the beginning. The receptionist said the Dr can see you but the help she can give you will be very limited and she will not prescribe and medication without a diagnosis. Do Drs think that just because you don't have a diagnosis yet that you do not have real pain? I see my primary again on the 20th. I've made so many calls, got the blood work my GI Dr asked for, spent hours trying to get medical insurance. My fear is that at any time she will again say that she can no longer help me. She did change my medication to one that is working great. My funds are limited and my GI Dr is wanting me to get an ultra sound. I'll find a way to get that done. My main question is this, how in the world do you even find a pain specialist that will take you as a patient without having a diagnosis and also wanting to take away your pain medication? I research and make calls most everyday trying to find a Dr and I hear, you don't have insurance, we only do injections, we will not prescribe and medication. I live around the St. Louis Mo area. Actually about 30 miles away. Do any of you have any suggestions? My GP has been of no help recommending anyone.  Again, please forgive me for this very long post. I'm just at my witts end with all of this.

[remar]

I've heard of Reglan. Right now the Nexium is doing a pretty good job. I forgot to mention that I also see a chiropractor, I have since I was in my teens. She also seems to think this has something to do with a bile duct problem. We tried many supplements to help with digestion and to calm my stomach down. I didn't do well on any of them. All they did is make me nauseous.
I'm truly trying to do everything I can to get a diagnosis with my limited funds and also keep this pain under some kind of control with anything natural and also pain medication. I have the ultrasound scheduled for this Thursday morning. It's the soonest they could get me in. I may be able to get some answers that very day.
My GI Dr is a little baffled but he does keep coming back to a bile duct problem or scar tissue from having my gallbladder removed. No, neither of my Drs will actually write down a diagnosis because I have to have actual proof. This seems to be a problem with many pain Drs too. They want that proof that you do indeed have a medical problem or they will not see you. One of our wonderful members here summed it up so well, if they do not see blood most Drs wil not believe you're actually in pain.
Thank you so very much for commenting on my post. Any help I can get is so very appreciated. Do you go through this kind of pain since your surgery, or does the Reglan keep things under control?
Thank you again!

[Raetooincali]

I wish I could be of more help here, but I am baffled as to much of what you're going through.
I do have a single suggestion though, like you my gallbladder has been removed & I've dealt with the food not digesting well.
Ask whatever doc you see next about a drug called "Reglan" (I prefer the liquid).
It will assist the food in getting moved from the stomach much quicker, thus reducing the discomfort from food just sitting there churning.
Also, ask your doc for a generic diagnosis, explaining your problem with seeing a PM doc.  There's a diagnosis code on prescriptions when sent to insurance. The PM doc doesnt want the responsibility of labeling you. It's all about covering their *****. That way if something ends up in court, she can point the finger at the doc with the diagnosis.
Just the way I see it.

[remar]

Thank you so much. I have 2 great Drs I'm working with and they're both really careful with what they prescribe me. My GI Dr has me on Nexium right now and it really helps.

[remar]

I would imagine the reason I have never been prescribed antibiotics is because blood tests are showing no infections. My Dr did blood work when all of this started, along with the H Pylori test, and both were negative. I've been checked at least 3 times since then for infection and nothing is showing up. Oh, I was also checked for diverticulitis and did not have it.
My GI Dr did prescribe a prescription PPI but I did not do well on it with the side effects so now I take 40 mgs of Prilosec and it helps keep the heartburn and gastritis under control.
I will ask my GI Dr about Cyotec. It's one I've never heard of before.
I'm so sorry about what you're going through. It must be very painful to have all of that going on at the same time.  
Thank you so much for the information. I really do appreciate it.

[CPain4]

Hey , I know how you feel I also have gastritis and an abdominal and hiatal hernia and diverticulosis .
The thing I cant understand is why your physician hasn't given you any antibiotics . Its well known and documented that sometimes along with meds like Prilosec or Nexium (Nexium 40 mg  is what I took and its over the counter now ) that a person with Gastritis has to take antibiotics to calm things down . I recently found a med that I am going to ask my doctor about its
Brand Name: Cytotec  Generic Name: misoprostol (MYE-soe-PROST-ol) . If you get time look it up and see what you think .
I copied the following from WebMD : about this med Cyotec .
This medication is used to prevent stomach ulcers while you take NSAIDs (e.g., aspirin, ibuprofen, naproxen), especially if you are at risk for developing ulcers or have a history of ulcers. Misoprostol helps to decrease your risk of serious ulcer complications such as bleeding. This medication protects your stomach lining by lowering the amount of acid that comes in contact with it.
Its like a proton inhibitor which is in some acid reflux meds but not all of them ...(I have to take the ones with a proton inhibitor you can look at the ingredients on a acid reflux med and it can tell you if it has the proton inhibitor in it the only two I know that have it for sure is Prilosec and Nexium ) but this med call Cyotec not only lowers the amount of acid in the stomach it also coats the lining and protects it . Hope this helps .

[remar]

Oh, no problem. I understood what you meant. When this all started that's just what my husband and I wanted, a diagnosis. We know there has to be a reason for the pain. The first time I went to the hospital I was sent home with a small prescription. I was very grateful for that because I was having so much pain. We did get an MRI at that hospital visit, my husband asked for testing. It showed that everything was normal. The second time I went my husband asked for a scope and they would not do it. I can't blame them. We have no insurance and they knew all we could do was make payments, which we do every month. The 3rd time I went to another hospital and they did do a lot more testing. My GI dr sent me home with a prescription and a refill. I didn't ask for it but I was so grateful to have the medication. On my follow up visit I did ask my Dr for a prescription and she had no problem filling it. She is the one who has been taking care of my pain control. But, she is my primary Dr and I do not want to put all of this on her. I know the new laws now and I understand why in Oct she said she would no longer prescribe for me. That's when I started looking for a pain specialist. In the mean time I've kept up with visits to both of my Drs and regular blood tests to make sure everything is alright in that area. My funds are limited and testing can be so very costly.
Philnoir and Fntn have helped me decide what steps to take and I am so grateful for their help.
I know now that I will be able to afford the ultrasound and that is my plan, to set this appointment up after I see my primary Dr Tuesday. She will most likely have to give me the orders to have it done.
I can handle pain but after so long of being in such terrible pain 24/7 I can't do without medication or I will have no quality of life. Why put myself through that? I think all of us that are chronic pain sufferers know if we don't tell our Drs about our pain we will get no where. After these new laws it seems like Drs are so afraid to prescribe anyway that if we say nothing they are sure not going to offer it. I also think if we let them know what our pain levels are they are more willing to take us seriously and try to help us not only with pain control but getting a diagnosis. That's been my experience anyway.
Thank you again for taking the time to comment on my post. I do read every single word and consider all the advice given to me. I appreciate the support more than any of you will ever know.

[remar]

I'm so very sorry you're going through this. I really had no idea how bad things could get with bile duct problems.
I'm going to send you another private ts.
Yes, I thought it was wonderful too that they offer a discount to uninsured patients! My medical bills are really piling up so this is going to help so much.
Thank you for letting me know about my records. I'll make sure I get them. My husbands friend was given a disc after his MRI on his back. He actually has several of them. Poor man, he's had 4 back surgeries this year but he's on the mend and doing much better.
Thank you so much for you support and recommendations.

[ChristNonsense]

Thank you for replying to my response. I apologize if  I was unclear about something... I didn't mean for you to "stop" taking pain medication, what I meant was that in your search for a new doctor (one who has one, and only one task: to give you a diagnosis), to "act like" pain medication is the last thing on your mind (i.e. don't even mention it, and if the doc brings it up, turn it down).

I believe that by doing it this way, you'll get your diagnosis quicker... THEN you can do whatever you need to do to continue the pain meds.

For example:

You:
"Hi doc, I have this, this, and this wrong. Can you diagnose it?

Doc:
"Well, well, what have we here. Does it hurt? Do you need some medications?"

You:
"No, doc, I don't want to focus on any treatments yet... I just want to 'get to the bottom of this' and find out what the heck I have. Then, we can worry about treatment options."

Doc:
"Oh, good, let me get to work figuring it out, then."

So, anyway, that's what I meant with the tactics I proposed. A Faster Diagnosis = Fastest way to get the pain medication.

And, nothing wrong with wanting pain medication. "They" sure demonize it, don't they. We're "not supposed" to say "wow, this medication makes me feel good." No, we have to mince our words, bite our tongues, and say things like, "The medication helps me function better," blah blah blah. It's amazing how many people on the forums are (incorrectly) ashamed to enjoy pain meds. The fact is, the "euphoria" IS one of the pain killing mechanisms. But so many people start their posts with, "now, I don't take it to get high," or, they are ashamed that the meds make them feel good. One poster made a special point to state that it wasn't their fault they were in a car accident which caused them so much pain to have to take pain medicine. I certainly empathise with them -- medical professionals seem to do all they can to make us feel guilty. But then, by the same token, there ARE lots of people that abuse the meds, so I guess it is what it is...

[fntn]

It's wonderful that you're able to get a discount on the imaging procedures! They can be crazy pricey. And be sure to get all records as well when they're done. We get help you understand the details entailed within if needed.

Stents are an option as well as simply going in and ballooning thru the strictures, if present. In my case, there isn't anything they can do . I have decompensated ESLD so there's a liver transplant in my near future. So these bile duct issues can get pretty severe and my main problem is that my own body (immune cells) attacks mine. Strange things are bodies are capable of.

[remar]

Thank you so much! I found a place. Actually it's where my husband's best friend has been to several times. He's had 4 back surgeries this year. They not only do MRI's but also ultrasounds. And yes, they do give a very reduced rate for uninsured patients! That was really great news when I found out about that.I just finished giving them my initial online information so I won't have to fill out as much paper work when I go for my appointment. I'm really hoping they can get me in soon.
I am so sorry you're going through this. I've done a great deal of research on bile duct problems and it can cause a lot of problems on top of being very painful. Can you say how you're being treated, have they placed a stent or anything like that? I'll be keeping you in my thoughts and prayers.
Again, I am so grateful for this forum. It's so wonderful to come here for support and information. Philnoir was so very helpful with his message. He is such a wealth of knowledge. And now after your comments I know I'm going with the ultrasound first. It does make sense to start off with that because of cost and also because it can see a lot.
I so appreciate all of the comments, support and recommendations. Thank all of you much!

[fntn]

If your doctors are really concerned with your bile ducts, you should probably let them take a peek asap. You mention having no insurance so I'd stick with the ultrasound at first, just to do an exploratory to keep costs down, mri's are quite pricey of course and the US can tell you a great deal.

But letting a bile duct issue fester is risky, this can cause a great deal of trouble later on and even more cost. That's my primary issue that I deal with, a nasty little disease of the bile ducts, and they can certainly cause alot of trouble. Funny how we never even think about some of the little things in our bodies until they run amuck. And yes, they can cause a bunch of pain either directly or indirectly.

Take care and hope it gets resolved.

[remar]

Thank you so much. As I said, I'm already seeing two Drs. My primary and my GI Dr. I've had and MRI and a stomach endoscope, which showed severe inflammation and old bile.I've also had so much blood work I'm surprised I have any left. Ha ha!  I know I'm repeating what I've already written, sorry about that. Anyway, my GI Dr said the scope could not reach to wear my pain is and see the bile ducts. He's recommending an ultrasound so that will be happen shortly. If that shows nothing then he talked about either swallowing the little camera or exploratory surgery.
Since I have no health insurance I have to be careful about what I can and can not do at the moment. Meaning, the ultrasound will cost less than the camera, the surgery will cost more than the camera. My two Drs are associated with Mercy and they do give an uninsured patient discount. Thank goodness for that!
Like you, in the beginning I refused medication too. It got to the point that this pain was effecting every part of my life. I was getting severaly depressed, anxious, I couldn't sleep because I hurt so bad, I didn't want to go any where, do anything, I wasn't able to take care of my husband as far as cooking, cleaning or doing laundry.
Believe me, I want to know what's going on and why I'm having this pain. I have a very good idea and so do both of my Drs. A bile duct problem. I've done the research and was shocked to see other people complaining about the very same pain I'm having after having their gallbladders removed. It's very hard to eat with out getting sick and my GI said it's most likely because I don't have that holding tank, as he called it, any more, meaning my gallbladder. I miss food and I especially miss raw food which I can no longer eat.
Yes, I could quit taking medication but at this point I would not have any kind of productive life and I know the depression and anxiety would get so much worse.
So, my plan is to do my best to get a diagnosis but in the mean time try to keep my pain at a bearable level. If I knew there was an end in site very soon it would be different. I know I could tough it out. It could take several more months for a diagnosis though and I just feel like I can not count on my primary Dr to stick with me until the end. She can change her mind at any time and say, I will no longer prescribe your medication. I think it's in my best interest to be prepared for that and get myself set up with a pain specialist who will not only help with my pain but maybe also be able to help me with a diagnosis.
Can I ask what your MRI found? I take it you have back problems? If so, I'm so sorry. I can only imagine how painful that must be.
Thank you for taking the time to comment on my post.I completey agree with you, I need a diagnosis.
I did get a personal message from Philnoir and he was a HUGE help to me with a lot of information I knew noting about.
I'm so glad we have this forum. I'm learning so much and of course it always helps to have support.

[ChristNonsense]

Thinking outside of the box is my specialty. I'll post something here, but I'll "let my wheels turn" and probably post back later.

Here's my "2 cents worth."

Right now, you're focus is a Pain Management doctor. And though you've hit "dead ends," they all have actually given you a road map! They've told you that you need a diagnosis.

Because your focus is on finding a Pain Management doctor, you need to change your focus. To finding a doctor that will just provide a diagnosis.

That means you *must* start your search fresh. For example, the next doctor you see, do NOT, under any circumstances (even if they ask), mention anything about medication. Here's a real-world example. There was a time where I simply needed.... well... a diagnosis! And, an MRI. I couldn't have cared LESS about meds, or anything -- I just wanted an MRI and a diagnosis, so I found a doctor, and while he was doing examinations, he actually told me that the I need a muscle relaxer and some pain medication, and he asked me if I wanted some. I said NO. (Oh man you should have seen the look on his face), and I said that I just wanted to focus on what I needed now, and didn't want pain meds to muck with trying to get fixed.

Well, long story short, I got my diagnosis, and I got my MRI.

So, it is a (albeit temporary) "change in attitude" for a while, for you.

I believe you WILL GET your diagnosis, in fact, you'll find that many doctors will jump at the opportunity to be the first one to 'diagnose' you, as long as you keep all conversations and mentions about pain medication silenced.

Then, of course, once you have your diagnosis, you can go back into your current plans, and get your pain management doctor, and prescriptions, etc.

Hope that helps. If this doesn't help, it's my fault, I didn't articulate my thoughts clearly, and I'll try again.