After all this, being called a drug addict by mom!!!! - Pain Management Message Board

Pippin31 · 07-16-2003, 09:30 AM

Hi,
Just needed to vent. I am utterly stunned at what happened today! A brief history...pelvic pain for about 15 years. Always came and went away within 2 weeks. In 2000, twisting pain hit! Never went away (for eight straight months until I was put on Lupron). Always happened mid-cycle and I would either be early, late, or have 72 day periods. During a lapro. I was over extended in stirrups causing a T/ 11 disc herniaton compressing the spinal cord and causing nerve pain in my right leg. Spent the last 3 years trying to find cause for pelvic pain. Pelvic pain also associated with what feels like a bladder infection, but never is. Diagnosed with Irritable bowel syndrom in the beginning of all this, but then doc felt it was GYN in nature because her treatment didn’t work after a month and pelvic pain was unbearable.
Fast forward......
Just had another lapro done again in April by reproductive endroconologist and a bladder scope. Bladder doctor felt that he wouldn’t see anything anyway being on Lupron for 2 ½ years including time of surgery (they were looking for endometriosis). They did find a part of my intestine that the doctor called “very angry looking” very inflamed!! Red and grey looking. He said reproductive organs were clean (but they would be because endometriosis shrinks while on Lupron!!!!!!!!!!!!!!!!)
Off I went to the GI doctor who told me she still felt my “twisting pain” was GYN related.
I had my follow up with her today and she is back to the IBS diagnosis. I just got done telling her I got my period for the first time last week (in 2 ½ years because of Lupron) and the twisting pain woke me out of a heavy sleep. Also, week prior I had the “bladder infection” feeling.
Now, I have been on narcotic pain medication for about 2 ½ years! Hydrocodone...that is until I went to a pain management doctor who added the patch. This has allowed me to function better however, when my side is not twisting in pain, my back is. When my back isn’t hurting, my side and leg are. I have spent countless nights without sleep, only to be found by one of my parents, sitting at the kitchen table crying in pain and shaking from pain when they wake up in the morning.
One of my parents has always accompanied me to my doctor appointments (out of concern, but primarily so I don’t get quizzed to death when I get home!!!!) They have been present during frank discussions regarding my pain medication and how chronic pain patients become DEPENDANT! Different from addiction. I have printed out numerous articles stating this as well for my parents to read.
O.K...Here goes.....Today, at my follow up visit with the GI doctor, my mom and the doctor sat there and had a discussion about me being a drug addict!!!! As if I wasn’t sitting there. I was so shocked that my mom just blurted out..”Do you think she is an addict?” and the doctor saying “I am certainly concerned about that!!!” “Sure, there is that possibility” Well, I frigging lost it on my mom right in front of the doctor...”you don’t have to take this dreaded medicine because you don’t have to deal with my pain” and the doctor jumps in and says “but your parents are dealing with it every day!” I was sooooo hurt and angry! I thought my mom understood. I felt like I was cornered! After all this, how can she call me a drug addict??? She never said that to me in any of our discussions. And why of all people to ask the GI doctor this? She never said that to the pain management doctor??
I am so hurt and devastated! Not too mention, having this diagnosis of IBS when I feel from the depths of my soul it isn’t what is causing the pelvic pain. Sure, I have a problem in that area and always have, but intestinal cramps and pain is so damn different than this twisting pain. Plus, what the hell does the bladder have to do with the bowel? Not to mention, before Lupron they kept seeing a mass on my ovary. While on Lupron, the mass went away!! What the heck does irritable bowl have to do with it?
I don’t know, today was a total shock to me. First that ridiculous diagnosis and then to have my mom discuss me being a drug addict with this doctor!!!

Sorry this is so long, I had to get it off of my chest!!!

whaleylaker · 07-16-2003, 10:29 AM

Pippin That must have been horrible! You would think that your Dr. would have informed your mom on addiction, and on top of this you get bad news. That just stinks. I hope everything works out,Lake...P.S. what is Lupron?

painintheneck2 · 07-16-2003, 11:39 AM

WOW!! That sucks, Pippin! Maybe because your doctor can't find a @#@!&* diagnosis, she used what your mom said to her advantage. Ya know, like "it can't be that I'M (meaning your doctor) not diagnosing her properly, so YES it must be that she is a drug addict!"

I've been called that before too while being on Lortabs for 2 years. It really angers me also! No one wants to be labled that. But if the medicine gives you a better quality of life and they want to lable you then whatever!!! It's not fair and if your parents and obviously your doctor can't feel what you are feeling then they can't understand it. I wish that your mom had a little more faith in you than that. I'm sure you felt totally bombarded and teamed up against.

I don't blame you for feeling hurt and angry. It might just be time to find a new doc, if this one has started labeling you and obviously is not getting to the root of your problem.

Hang in there. You can't control what others think. Just tell them "if that's what you want to think of me because none of you can find the right diagnosis then go ahead, but I know the pain I'm in and I totally resent the fact that you don't believe me" I would think that your parents would be concerned about trying to find you another doctor that has some answers.

Good luck and here's a hug ((((((( )))))))))
Wend

Wes1212 · 07-16-2003, 02:50 PM

I can kind of relate to the feeling you are experiencing. During the middle of my PegIntron/Rebatol therapy i was getting quite ill every week. My neurologist had put me on 300mg neurontin 3x daily and my supply was in 100mg capsuls, 50 mg of zoloft daily, Another doctor had me taking darvocet, one to two tablets every 4 - 6 hours as needed for pain, and 5 capsules/day of Rebetron, so I was taking a total of 24 pills every day plus one injection each week. All this was for PegIntron/Rebetol therapy and managing side effects while trying to cure hepatitis C.

Those shots used to knock me for a loop with headaches and body pain that kept me literally bedridden for most of the week. I used to go out for blood draws, doctor visits, and to get prescriptions filled, was about it.

At around week 24 of this, I had just taken the interferon the day before when my parents came to visit. My mother, always the melodramatic one, stood over my bed where I lay in horrible suffering and screamed and cried and yelled at me that she could no longer see me in this condition and that I needed to get off all the medication, that she thought I was addicted to all of it and that it was killing me. This went on from about 6pm until midnight until I went to my father and asked for his help to stop her tormenting me. He had to literally drag her out of my room kicking and screaming that I was going to die if I didn't get off all the medication.

(my doctor had been telling that i was one of his "star patients" on the Peg/Reb therapy as long as i could ride it outwithout getting too upset) (the black boxed, bold type warning in the drug package insert said "this medication causes or aggrevates serious and/or life threatening neuropsychyiatric adverse reactions")

I called the pharmaceutical company's nurse counselor program (this is how harsh that med is, they had nurse counselors manning phones 24/7 for patients emergencies) and ordered about 10 copies of the "coaching booklet" for caregivers, family, and friends of Peg/reb patients. It helped a little.

I sincerely hope that you can find the cause(s) of your pain and have it treated effectively. I also hope that you can help your mother see the light and realize that adding emotonial stress to your condition(s) is not helping you to overcome them.

It's a HARD ROAD sometimes! They mean well but their emotional attachment can bite everybody in the butt!

Best wishes,

wes

Pippin31 · 07-16-2003, 02:56 PM

Hi,
Thanks for your replies. It’s nice to have people who understand!!
whaleylaker
Lupron is a medication originally given to men with testicular cancer. It’s a form of chemotherapy. It is a drug that is meant for a 6 month period. I was given this drug for 2 ½ years at almost twice the dose. It put me into temporary menopause. Shut down my ovaries. It made the pain go away about 90% of the time. I felt like I hit the lottery. However, side effects included hair falling out, memory loss, weight gain, sleeplessness, hot flashes and mood swings. Who the heck would take this drug if not for sever pelvic pain? Not too mention, the doctors can’t figure out why it made the pain go away when they didn’t see anything (looking for endometriosis which is like lesions growing on your bowels, bladder, reproductive organs every month) My RE doctor was so convinced I had it, he kept me on it for an over extended amount of time. Now....he isn’t sure because he did surgery (while still on Lupron which SHRINKS the lesions). So, the GI doctor talked to him, he said he didn’t see anything other than the bowel issue ...so that is what it must be!!!!! According to them!!!!!!!
painintheneck2
I wish mom had more faith in me too. I was so hurt! Like I said, I really thought she understood! She would go out of her way to pick up a script for me, go have it filled and pay for it. I was totally stunned when she came out with that today.
Mom blames everything on the pain meds. Hair falling out, memory loss, sleeplessness (when I do fall asleep around 5 am I sleep until around 12:30 in the afternoon....Looks like a druggie I guess) and mood swings. This..in my opinion..is all from the Lupron. It is symptoms everyone else who is on it has!!!!! But see, my RE doctor denied these side effects!! Guess that’s why mom blames the pain meds. (Thinking I am out of control!) How is that? I finish on time...once or twice I have been 1-2 days early, but come on!! Like I said, everyone who is on Lupron experiences those side effects! It shuts down your hormones!! What do you expect?!?
Anyway, thanks for letting me vent!!