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Dropped From Pain Mngt & Terrified

Dec 09, 2015 4:21 AM

How do u keep hope alive when nothing ever turns out right? What's the point of living if all you have is pain - physical & emotional.

I have been in pain my whole life; literally my first memories are of being in pain, being in a hospital. Ive been given outlandish treatment options (I need to have someone grow me a new bladder), one doctor will give me a diagnosis and treatment option then another doctor will veto one or both, I've had multiple surgeries, multiple doctors, it's never ending. 35 years of doctors trying to help for a moment but then when they realize I'm a tough case because my condition is rare they give up get frustrated and then treat me like I'm trash.

The latest? I've been seeing this pain doctor for about a year. When he first met me he called me his science project because I had multiple issues that needed to be addressed. He was also primarily a spine doctor and had never treated anyone with the kind of pain I have. Everyone said he was the best so even when his arrogance reared its ugly head-when he flatly refused to listen to what I was saying-took up most of my appt time talking instead of listening-refused to adjust a medication and instead just gave me something different-even when my husband said I should find a new pain doctor because he really didn't like him I stayed. Clearly I was stupid. I should know better by now. I should know better then to trust.

My last appt - 3 weeks ago now - after I requested that we increase my OxyContin 20mg ER 3 times a day (the lowest dose) to the next level because I could feel that it had potential but wasn't strong enough (I was/am at the point that I just can't live like this anymore) and he began verbally attacking me. Like shouting at me. He told me he was giving me 'tough love' and he wasn't going to increase my meds at all anymore and if I felt they weren't working he was just going to rotate me thru the meds I had already been on and I could take it or leave it. He went on and on and finally as he's walking out the door his parting shot at me was that I should get my anxiety and depression checked out because maybe my mental illnesses were causing my pain. I was in shock. I was shocked again when I recv'd a packet in the mail from him telling me I failed the drug test and that it showed OxyContin, Morphine & Dilaudid. He knew about the morphine and I haven't taken Dilaudid in 6 months. Then it says I further violated the contract by receiving pain meds from another doctor. I went to the ER! I had to go because of a terrible UTI. My urologist was dragging her feet on it and I called my pain doctor prior to going to beg for some extra pain meds until I could get to the ER and get antibiotics. He refused. Told me he couldn't "take my word for it" even tho I could have the record sent to him and I have a long history of UTI's. The ER doc told me he was appalled by what my pain mngt doc said and gave me 5 extra pain meds along with an antibiotic - the infection had reached my kidneys by that point. According to the contract, there are only 2 other places I can be prescribed pain meds - if I'm in the hospital, and...wait for it....the ER. I did not violate the contract. I feel like they violated the contract. Not once during this whole time did they manage my pain. Where's my recompense for that??! I am filing a complaint against my -former- pain doc for the verbal attack and the false information in my file now. Oh, and guess what else? He only had one diagnosis written down for me - interstitial cystitis. Just one, and one that's hotly debated between my doctors. Where are the rest of my diagnoses? The burning nerve damage, severe uterine prolapse, the massive amount of scar tissue? WHERE?

But now what? I found a couple other pain clinics that deal with similar pain conditions that I'd like to be referred to but will they reject me now because of what this place did to me? My life depends on this. My life is in their hands. It's so unfair but so typical. I don't feel like I'm a person to these ppl. My pain is nothing to them.

My quality of life is virtually nil. I'm always in a lot of pain, I have flare ups daily, some last for days. I cry all the time. I can't do anything I want or need to do. I can't exercise. I can't be intimate with my husband. I have to choose each day if this is a day I feel like suffering thru, so I can save my breakthrough pain meds. Can I shower today? Do laundry? Sit on the couch to spend time with family? I will pay for all of them later. Most days I just stay in bed, and I still have pain. I have no friends. If I were a pet I would be put down.

I'm so scared. On top of this, I've been having gynecological problems and had to have an extremely painful biopsy of my uterus yesterday, I'm supposed to be having exploratory surgery soon, and my husband has been in and out of the ER because first his diabetes went crazy high for no apparent reason and now he's in the hospital because of issues the doctors can't figure out.

I'm seeing my PCP in a few days to discuss the pain doc situation. But I'm terrified. Oh, and just because life isn't great enough, I had to borrow a few hydrocodones from my mom because I ran out of all my pain meds a few days prior to my last refill script because the doctor can't count.

I don't know what's going to happen, but I know it's not going to be good. It never is.

Dec 09, 2015 4:32 AM

Gentle hugs. You know people like that damn doctor should lose his license and have a muzzle put on him. If I had a condesending doctor like that I would let him have it. Report him to as many people as you can and try to hang in there.

Dec 09, 2015 5:53 AM

Yes, that is awful. Doctors can be the worse or the best...just depends on who you see. I know the pain causes most of my depression but the meds do help. Because we are on roller-coasters all the time. Hang in there, praying for you.

Dec 10, 2015 6:48 PM

I know you don't know me and I don't know you. Reading what you wrote just breaks my heart remember you are worth it. I feel so bad for you sometimes these damn doctors think their God. I'm sorry to hear that your husband is having problems also. I care and everyone on this site cares so Please don't give up. I know it sucks to have to kiss the doctors butt. I really feel you need a strong advocate. If not your husband your mom someone in the family. They even have people I don't know how to find them that help fight for you. I have been going back and forth with doctors for 30 years myself. I have had a doctor not see me because he said I was not cooperative. We didn't't have a good patient doctor relationship he's the one that did my first surgery and has since lost his license to do surgery but can still see patients. Enough about me I will pray for you that you get the help and understanding that you deserve. Why these doctors like to test give you medicine don't give you medicine. A lot of it is people that don't need the medicine that get it and sell it. That makes it hard for people like you and me and everyone on this site to get relief. Please no that there are people out there that do care about you so please hang in there. I am just straight up and honest with my doctor that I have now I hate these pain clinics. I went to a pain clinic years ago. I'm lucky that I have a doctor now that knows a pain clinic is not going to be helpful. I've had 5 back surgeries shoulder surgery I was ran over by a truck in 2001 broke every rib in my chest. Four of them front and back and crush my left lung broke my left ankle when the truck ran up my leg up my chest and alongside my head. Shattered both of my clavicle bones. Also to diverticulitis surgeries. I wish you and your family the very best and hope everything works out hang in there.
Remember you can always vent on this site without judgement.

Dec 11, 2015 4:09 AM

Someone suggested a advocate. My insurance company offered me a nurse case manager because my case is so difficult
You talk to her and she will go to your Dr's with you and help you talk to them. I bet they'd have a different attitude if you have a health care professional with you witnessing the visit. Keep your head up and know people love you. God bless.

Dec 11, 2015 7:38 PM

Echoing Grizzly & Jean

My 2 cents: also consult an attorney who specializes in malpractice

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