At a loss for words...

After moving to IN we were referred to a pain DR for my fiance(Amanda) severe abdominal pain. Her flare ups were really bad again. She has Stage 4 endometriosis, 24 previous surgeries and every experimental drug and procedure known to science with little to no success. Her RX regime was pretty much the same for the last 6 or 7 years where she had a daily Oxycontin and Opana for break through. I can't remember the dosages and this seemed to help take off "the edge" for the most part but still put on a mental strain, but she is strong and gets through it.

Now that's all coming to a abrupt end. She was seeing a NP who continued her RX regime here in IN and really sympathized her pain levels. After 6 months she was leaving the practice to go into a different medical field. No we were left with the 38 year old knowitall pain dr. According to him, she shouldn't be in pain, nothing shows that she should be in pain, adhesions don't cause pain and neither do scar tissue from 24 surgeries so were dropping the oxy, I'll give her 1 month of opana(dosage reduced to a quarter) and next month were taking it down to tramadol. She was hysterical.. fear, anxiety and pain. The doctor advised us she was the only patient in his practice that was prescribed that much RX. We've been through so many doctors it's unreal.

We've seeked doctors out of IN because the healthcare system IMO is awful. We found a great OBGYN that confirmed where her pain was coming from, and how bad it can get. He sent us to a Pain DR in MI. The doctor said part of his program is seeing a pain psycho first. We agreed and left it at that but told him her pain levels are high since the oxy was cut out and opana has been reduced so if we could please get these appointments done soon, within the next week. No call from pain psycho for 3 days until we called the PM doctor advising him we still haven't heard anything. We get a call the next day from pain psycho and #1 her insurance doesn't cover him #2 he to was confused as to why the pain DR referred Amanda to him, we stated its part of his program. He said what? never heard of that but I'll follow up with him and find out why.

After the Pain DR saw her records from IN he saw that the pain DR there was going to bring her down to Tramadol since he feels she shouldn't be in pain and that is what he is going to continue her on.. I mean ***.

Not only were we lied to about this "program", it doesn't matter what her RX regime has been for the last 8 years but what a DR we saw FKIN TWICE recorded his opinion in her chart and now that's what future DR are going to base there decisions on?? I am exhausted trying to get her back on track. Her life is affected by this, her job is at stake, the ER visits have gone up... the days I sit here and comfort her where she is crying, grunting, screaming in agony, telling me she doesn't want to deal with this anymore... what am I to do?

I am losing options. I'm trying to work with her OBG and see if he can back us up on this situation. Everyone is hesitant to prescribe and we don't yet have a PRIM. We had one but he was fkin awful. Couldn't treat a fkin cold if he even wanted to try. The last we heard, pain DR in MI will be contacting pain DR in IN, and we know how that's going to go. She never broke contracted, kept every visit, stuck to her contract. I don't see how after 2 visits her RX gets reduced to a 1/4 and even lower and none of these DR will account what has been working for her. How do I handle this when her job is in jeopardy and she makes more money than I do. If she loses her job, we are fked. The new PAIN dr does not have her records from before a year ago, you think this might entice his decision? What do I do here, I'm pleading for some help. I don't want to jeopordize her care with my mouth but I can't sit back and allow this!

I have been working on all previous records but it seems the most recent records take longer to obtain. I will follow up tomorrow.

I still don't know what I can do for her equipped with all her medical records. She is in agony right now. We are getting the run around with the new PM dr. I don't know what I can do for her. See another PM doctor? I need one of these ******s to ssympathize and understand her pain is real. I can't believe this is happening right now after all we have already been through.

She can try another PM dr. But, you're right the notes from one dr on just a few visits can cause problems that it takes quite a while to find a dr who won't put weight in it. Different dr offices have different procedures for obtaining medical records. For some you can get copies that day for others it may take a week to ten days. She will have to contact the drs offices about this, you may not get very far. Also, she is giving them permission to release the medical records to her which means she will have to go pick them up. Call the insurance company and ask who the drs are that take her insurance. That way, no time will be wasted on drs who don't take that insurance.

Mike, unfortunately drs can stop opiates like that, and some do. She isn't the first one here that this has happened to.

I thought of something else,if she has seen a psych dr suggested or required by on of the other Drs try to get that too. Alot of what thats about is to assess whether she shows signs of an addictive personality,has suicidal ideations,or an underlying mental health issue that would cause over dramatic reactions to pain. Yea I know,another crock of bull we have to be subjected to. A bad report like that can also get you undertreated fast..

This report could actually be the most difficult to obtain and has a whole set of rules to protect it. That being said it cant hurt to try.

As for risking Dr Shopping if your 100% sure you wont be returning to that office you need to terminate the relationship and contract in writing as soon as possible. And when making appts with new Drs make sure you ask for a consultation appt. That way the records reflect your looking for a dr compatible with your wife and not trying to obtain narcotics only.

Hi Mike, I am sorry to hear your story about your wife, sadly as many others have told you, this is not an uncommon occurrence! Can you and your wife talk to her OBGYN Doctor about them making a possible referral to the Pain Clinic at the Indiana University in Indianapolis. It is part of their medical school, they also do pain pumps and spinal stimulators. I don't know whether or not they can help your wife, but it would definitely be something worth checking into. If her doctor can provide the documentation and the referral to them, they will review it and then decide on whether they will accept her for an appointment. If they do then they will contact you with an initial appointment. At that appointment, you and them together, will decide if what they can do will help, if you accept them, then they will take over her pain management. Just something to think about, they might not be able to help her, but again they might????

Depending on where in Indiana you are, and your insurance, have you checked out any of the medical facilities in Chicago? Or over in Ft. Wayne? Usually the larger cities have the better medical facilities, and allot of them are connected to a University Medical School, such as the Pain Clinic at the University of Indiana in Indianapolis.

I wish You and your wife all the best, I am glad to see that you are stepping forward and being a good advocate for her!

White Beard

Thank you all for your warm words of hope. It has been a journey to say the least. Medical Records are being processed, I've been running around the house gathering all she had possession of previously and will start to time line as much as I can together. I'll need a 3 ring binder to hold it all.

I have researched doctors in Indianapolis, all over Fort Wayne and she has been in Grand Rapids and now we're venturing into the metro detroit where I'm from. I myself do not suffer from chronic pain but I do have ulcer episodes and crohns runs extensively in my family so I know its a great possibility I could be on that other side of the fence.

it's hard to see her suffer, I don't know how many times I wish I could take the pain out of her and place it into myself. I have a different take on life since I've been with Amanda and my heart goes to all who have chronic pain.

It doesn't look like the new pain dr is interested because we got 2 different answers from day to day. I found another that we can hopefully see after this weekend that looks promising but Amanda is getting to the point where if doctors don't care about her condition then why keep going through the mental abuse of hearing the same repeated response. I'm trying everything I know to stray her away from that but ultimately I can't and won't force her against her will. But I'm hanging on to the fact that we will see light at the tunnel just not yet there.

Thank you Sandra for adding in your experience and suggestions. I will def loom up that doctors name but I'm not sure how the canada/USA for medical treatment will work out.

We really just need a dr who will manage her pain now and especially for when we inquire a infertility specialist. Her pain levels will at least double if we go onto hormone injections and we have to prepare for that.

So far no good updates still trying though. Calling many offices speaking to all sorts of nurses trying to find the right facility for pain care.

I will keep updating. God bless.

Hi Amanda and Mike,

I am just giving my two cents after reading everything above.
Which is all awsome. I have had chronic pain for 14 years, so I am not a newbie. Spine and joint issues.

First of all, I am new here as well, and this sight and the knowledge and compassion is very inspiring. A really good place to come.

Seems like the doctor environment has changed from what I am hearing and reading. Six years ago, I had my pain doc ready to give me all and everything. I went to see him recently for a "consultation" and he talked about the DEA.o

What I would suggest that has worked for me--I live in a doctor rich environment, Chicago area, one reason why I live here. Really bad for pain.

Never, ever give up. Always get records and doc notes.
From all visits. I have noticed of late, they want to give you a summary. Forget that. Get the doc notes.

If the doctors are not understanding, get new ones. Be calm, be polite, be firm, be nice, but do not let them have all the power.

What has worked in addition to meds: a pain psych doctor--I resisted for a long time, and I admit that now it is covered, where before it was not. Very, very helpful for coping skills.

Distraction--whatever makes you feel better--non-med.
Good friends and family support. You can't find new family, but you can find new friends.

A good Gyne or GP--sorry guys, the ones I have found most compassionate are female. Just my opinion.
Take baby steps, this is not a quick fix.
One day at a time, and stay strong. You are not alone.

It takes time, and we all do the best we can.


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