Chronic Pain Support Group

Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not alone in your pain.

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Cut off my Pain Meds

I've posted about this before, but it's been along time. I was wondering if there were any new members that could offer some advice. Also, older members who might have missed my post. It's been since October, I believe.

Well- to start things off, let me introduce myself. I'm Stefanie, I'm 24 years old, mother of two boys and wife to my husband of 5 years, been together for 9. I have went through pure hell beginning in 2005.

I got pregnant with my first son in July 2004. It was a pretty uneventful pregnancy until about 24-26 weeks when I developed a horrible (and I mean horrible) bout of kidney stones. My left kidney was literally filled with stones, ranging from 5mm to almost 2 1/2 cm. I was in excrutiating pain, and could barely stand at some points. I was hospitalized for a week, and had my kidney drained and tried to stay as hydrated as possible (which did help, a lot, with using the bathroom). Finally I had to get a stent placement for a week because my urine was backing up. Miraciously, the stones began to break up and pass on their own. The bigger ones stayed though. They were not blocking my kidney or urine from passing, so they "left them alone", but they never broke up on their own, and occassionally I would get pain in my back that would take my breath away.

Well, my son was born February 13, 2005, premature by 6 1/2, almost 7 weeks. He, thankfully, was fine. His lungs were developed and had to stay in the special care unit only due to a case of jaundice. The jaundice wasn't very bad, but he had to stay under the billi-ruben light for 4 days, and had a 7 day dose of antibiotics because I had tested positive for Group B Strep (a bacteria that lots of women get during and before/after pregnancy, that can not harm the mother, but can harm the fetus. Therefore, they administer antibiotics during labor for precaution, and also if not treated can give the baby a strep infection, usually in their lungs) Well, needless to say, my son did develop a strep infection at 6 weeks and had to be hospitialized also.

Anyway, to make a very long story a little shorter, at about 4 weeks post-baby I began to feel very ill. I started running a temperature ranging from 101-104 at times. I was constantly on Tylenol and Motrin switching off during the day to keep my temperature somewhat regulated. I was hot, then I was cold, then I was hot, then I was cold, etc. This went on for about 2 weeks. I visited 2 hospital emergency rooms only to be sent home with a "kidney infection", or as the last doctor said, "your white blood cell count is very elevated, and you have some kind of infection somewhere inside your body that we can't pinpoint at this time." That was after I was forced to drink contrast for a CT scan, that I violently threw up the contrast before they could perform the X-ray. It tasted like banana chalk. For one, I loathe bananas. For two, I was already nauseated out of my mind. Why would they think I could possibly drink contrast that tasted like total ass. Anyways..

They still performed the x-ray hoping that some of the contrast would have stayed within my body and that they could possibly see something that was making me sick. The doctor examined the reading and said there was nothing he could see, but that I was clearly in pain, so he gave me two doses of demerol while in the ER. Drew more blood, and sent me home on some Levaquin and Mepergan for pain. While although mepergan is strong, didn't touch my pain in the least. Something was seriously wrong with me, and they did not figure it out. Anyway, before I left I was asked to sign a paper stating that a radiologist on the next shift would review my x-ray reading and I would be contacted if anything else was seen on the x-ray and if I needed further evaluation. Needless to say, I never got a call.

Two days later, after 2 more doses of the Levaquin (plus the IV dose I got in the ER), my pain was even worse. My fever was still not under control, and I literally felt like I was dying. I had a newborn baby, our first baby, and it was hard for me to take care of my son, thank God I had my husband and mother to help me during this process. Otherwise, I don't know what I would have done. Anyway- two days later, when my husband got home from work, he woke me up out of the bed, I was drenched in sweat, my face was as red as an apple, I was burning up and I began throwing up in the trash can I was keeping at my bedside. He said no, this is not working, there is something seriously wrong and they don't send someone home in this type of condition. So, he called 911.

When the ambulance arrived, I was so weak they had to carry me, place me on the stretcher, started IV fluids and put ice cold rags all over me. My fever had reached 104.6 by this time. I was taken to the emergency room, where at some point, I passed out when I got up to use the restroom. I woke up, with half a dozen doctors staring at me asking me "if I could breathe". I looked at them in horror, because on one of the lab coats under the doctors name it said Pulmonary team. I had just turned 20 years old, what was a lung doctor staring at me for? I was being pumped with demerol, zofran, and 2 antibiotics, the strongest ones they administer. I can't spell it, but one was Roseffin (sp) and they said they only give it to very ill patients, and burn patients. I begged for answers, wanting to know what was wrong with me. Where my husband and son were, where my mother was, I was horrified. I had oxygen going through my nose and also a mask on. My hands were also restrained, I guess so I couldn't take the oxygen off. I had never been so scared in my life.

After a few minutes of the doctors consulting with each other, they FINALLY decided to tell me what was wrong. I was almost in congestive heart failure, and my left lung had completely collapsed. They told me I must have contracted pneumonia while I was pregnant and it had got undetected because I was not showing signs or symptoms of pneumonia. No trouble breathing, no weakness (until my lung had already collapsed), no wheezing, nothing. Only fever. So initially, they thought it was a virus. I kept returning to the hospital, get this, 8 TIMES, once via ambulance, because the pain was SO bad in the left side of my chest I literally felt like I was dying. Of course I dont know what dying actually feels like, but it's the closest thing I've came to it. And the doctors in the hospital I was brought to (not the same one I had went the other 7 times) told me that if I had waited a few more days I'd most likely would have been on life support fighting for my life. Because I was literally, no joke, drowning myself. And remember, I was only 20 years old!! I had JUST turned 20, this happened in April 2005 and I had turned 20 on March 12th 2005.

So on to the point, more or less, lol.. I'm just trying to let everyone have a feel of why I hurt so bad and so constantly at such a young age. I was, of course, admitted immediately, and to my downfall my mother, brother, and some of my immediate family was at the beach at the time of my admittance. Because here where I live (Augusta, Georgia) there is one week in April (usually the 1st or 2nd, depending on the dates) that a major golf tournament comes here for the week. Most of the locals who are either A) not interested in golf, B) can't stand the traffic, or C) rent their houses out to travelers (can make big $$ doing this); and my brother's birthday falls on April 11th so every year my family would take a trip to the beach during this week to get away from all the chaos of the town.

So, I am a new mother, a newlywed, and here I am lying in a hospital bed, being told my lung had collapsed, that I was going in for immediate surgery in less than 1 hour and I couldn't get ahold of my mom to save my life (no pun intended). I was scared out of my mind, I didn't understand what was going on because A) the pain was so bad it was making me delerious, also the pain medicine leaking through my veins wasn't helping me to be coherent, but thankfully helping me to cope with the pain, and B) I'd never even been sick in my life. Plus, I had my newborn son at home with my husband (he left him with his mother and came to my side when he found out how serious it really was) and I was worried sick about how they were feeding him, if they were changing his diapers enough, was he getting enough sleep and comfort without his mother, I was a complete wreck.

So, the next thing they told me is that I was going to have to have an immediate surgery to "drain my lung" and that it was going to be very painful, and that i would have to be awake for the procedure. So I was laid on a very, very cold table, had a pick line placed through an artery (hurt like the devil) and then had another catheter placed in my back inserted into my left lung cavity and then the pain began. I could absolutely FEEL my lung expanding. I have never experienced such pain in my entire life. I've had two children and I'd have them again in a heartbeat with no pain medicine or help at all, rather than go through that painful lung procedure again.

So after that surgery, I was wheeled back into my hospital bed and was told to "wait" until tomorrow when I'd have another chest x-ray and CT scan to see if enough fluid was drained (they got 3.7 liters, it was orange, so nasty looking, and I made them stop because I just couldn't take it anymore. They said they thought they got enough.) Well, after the new x-rays it was determined they did NOT get enough, and that the fluid had been in there soo long that it had scarred my lung, and left lots of scar tissue that they had to get out. So I went in for a thorocotmy surgery. I have a 9 1/2 inch scar across my chest where they ripped my chest down and I have two scars in the form of X's where I had two chest tubes breathing for me during and after the surgery. I had an epidural placed in the top part of my back to prevent me from feeling myself breathe. They said THAT pain would have hurt in ways words can't even explain.

So, I stayed in ICU for 7 days, and the hospital a total of 52. When I got home, life was horrible. I had to sleep in a recliner chair, I couldnt lay back from the pain, even after all the pain meds given to me I was still in excrutiating pain.

3 months later, I got a nerve block. They determined that I had nerve damage and two broken ribs from the surgery (which I was never told about). The nerve block was unsuccessful. 2 months later, I had another. Again, unsuccessful. So I started with the aquatic therapy. Then the PT. It was getting harder and harder for me to maintain a normal life. I couldnt even lay down without shooting pain in my side. To this day, where my scars are, is numb. The pain is INSIDE. I can feel it radiating from inside my body. And to top this all off, I began to get kidney stones again.

I had two lithotripsy surgeries, 11 more stents, and 4 years of hell. I am never pain free. Ever.

I finally got sent to a PM doctor by my pulmonary specialist. When I had to go in for my 11th stent and last kidney surgery is when they gave me the extra meds. My PM doctor dismissed me as a patient because I accepted the extra medicine that I needed for post surgery pain.

Does this sound fair to you?



PS- after all this was somewhat over, I requested my medical records. The first time I went to the ER and had the x-ray that I threw up the contrast, there WAS lesions on my lung that the ER doctor didn't see. It said on my record that I needed to be re-evaluated immediately. I never got a call, not even to my family doctor, and I checked- they had all the correct numbers. So I think it was pretty much malpractice.

And even after I told my PM doctor that I had to take the extra meds to be comfortable he still dismissed me as a patient. I even got a notarized letter from my kidney doctor stating that I DID tell him I was seeing a pain management doctor and that he was aware of it, and still believed I needed the extra medicine. I was in the hospital, how should I have called my doctor and said, I'm in the hospital under another doctor's care and he is giving me more and different pain medications, can you come and take over my case? I didn't think that was possible.

What should I do? I need my medicine.

No it certainly isna't fair but unfortunately it is what is going on in pain management. There are no second chances. The docs are so worried about losing their licences.

The good news is that with what you have been through, you should have no trouble finding another pain doc to treat you. Most will understand that having a doc give you pain meds when you are under his care in the huspital is quite normal.

All chronic painer's need to learn from this. Read your contracts because some docs allow you to get meds when in the hospital and some do not(which I think is ridiculous). But we need to know what our boundries are so we don't make mistakes.

I would ask your PCP to take over your meds until you can find a new PM. As I said I do not think you will have any trouble. Just be upfront and honest with the new doc why you were let go and you should be fine.


Gosh, I feel so bad for you! This is awful!! Like the other poster mentioned, is there anyway that your PCP can take over your care until you find a new PM Doc?
The same thing just happened to me and my PM Doc had no issues with it! I was taken to a hospital via ambulance were my PM Doc has no privileges and the PM Doc on call was the one that took over my care. I told him what meds I was taking at home and at what quantities, etc. and he just follow the same protocol. I got out of the hospital last week, went to see my PM told him what happened and what my new issues are and he had no problems or issues with this other guy taking care of me while I was there.... as a matter of fact, he knew the Doc and told me that I was lucky to had his care while at the hospital.

I think that your PM Doc is been overly cautious and even a bit discriminatory specially when you presented him with a notarized letter from the Urologist or Nephrologist that took care of you at the hospital. Maybe he didn't even had privileges at that particular hospital! so as far as I am concern and of course this is my opinion only, he is wrong! I hope that you can find a new PM soon. Maybe your Nephrologist/Urologist can recommend you to one. Good luck to you and I am so sorry for what you are going through.

I agree there are good PM docs out there. I would go get another try at one. There is no way you should have to live in that kind of pain with no meds. That doctor sounds like a real butt.
The worst part is it isn't even your fault. I hope everything works out for you so youcan enjoy life again. Hang in there and don't give up!!

wow!! you have been through hell. You need to get a lawyer and sue the hospital and E.R. dr. who did not follow up or care enough to let you go home without telling you 7 times they are the reason your lung got soooo bad.
and no your pain ddr. is not being fair, but this happens all the time in pain management, you did to get a new one and keep looking until you find one that cares about his patients not getting in trouble.
Sounds like you are having alot of nerve pain have you considered a spinal cord stimulaor? It works great for nerve pain, I recently got it and after 20 plus years i finally have relief with my nerve pain, I still have chronic back pain but I am pleased to have any relief at this point.
I sure hope you find a good dr. soon and serioulsy look into getting a lawyer. good luck and i hope you feel better.

Did the doctor at the hospital prescribe you meds to take home with you. Getting a shot at the ER, and having the ER send you home with a new script are 2 different things. I had a similar issue, where I recently got shots of pain meds at the hospital, but didnt take an additional script, because you are by federal law only aloud to have one doctor prescribe you narcotic pain meds at a time, but having an acute flare up, that requires additional meds at the hospital is ok, also most ERs wont let you take your own meds while in there care, and they only want you taking what they give you.
I am originally from kentucky where prescription pain meds abuse is a major issue and it is about the same everywhere now. I had fallen in 03, and destroyed my hip, and tore a disc in my lower back, but since I have tattoos, and was only in my 20's at the time, they dismissed me from the er, after the x-rays showed no broken bones, and they gave me some very weak pain meds. They treated me like an addict. 3 years later moved to San Francisco, where you are not judged, like they do back home, and the doctors took my pain complaints seriously. They sent me for several MRIs, and found all kinds of major injuries which I am still being treated for. I spent 3 years in agony, contemplating suicide at times of severe pain, even got in trouble trying to get pain meds off the street, back in Kentucky, to ease my sufering. Bt, 2 months after moving to calfornia, I was properly diagnosed, and immediately put on very strong pain meds, which, in my opinion saved my life.
If the doctors or the hospital in kentucky would have not stereotyped me, and considered me a drug seeker, they would have found my problems, and I would have gotten workers comp to pay for the 3 surgeries I now need, to replace my hip, and repair 4 herniated discs and 2 torn discs, and thoracic scoliosis caused by severe trauma.
I know how it is being in the south and being young, and having pain, its terrible. So, if you can, travel else where for your pain doctor, or ask around, and find out which doctor is not such an ass. I wish yiou luck.

What a terrible, horrible scary thing you have been through, I am so sorry, I have been through some similar things and really feel for you. dont take it personally, it is all these stupid federal laws, the freaking government is so unsuccessful fighting the "drug wars" because they are all being paid off by the corrupt governments, so they have to feel they are doing something so they are coming after every dr that prescribes narcotics. I first want to tell you about a new drug coming down the line, it is from Canada, and is made from the poison of the Puffer fish, it is called Tectin or something like that and should be here in a year or so, it is non narcotic, non addictive, works on severe pain and will be a life saver for many pain sufferers.

You must get a new pain management dr, there are so many out there that are good, but there are others that suck so bad they should be in prison, especially one in Shreveport LA (a guy) with what you have been through, I suggest you go back to a specialist and get them to find out wtf is hurting you, before you go, write down in the greatest detail where, when and how it hurts, keep a journal for a bout a week before going. Tell them the truth about what happened, and offer to be drug tested monthly or whatever they feel they need to do.

I called my pain dr at 8 in the morning and told them I had been up all night vomiting, had a temp of 95.4 and was sweating, I was hot and cold at the same time and felt like I was dying, my heart rate was so high even while resting, because I hadnt slept in days, I explained that I thought I was having withdrawl symptoms from the previous pain meds, so I had taken a fourth of an old tablet, well, you would have thought I did herion in front of the president or something, I had to go to two different psycologists, have all of the profile tests done, re sign the contract, and have my pills counted weekly, dear God I am 52 years old, and I have never been treated like a toddler, I got MAD and let them have it with everything I had. I went to the ER, I drove myself.. I had to be wheeled in, and it turns out I have diabetes, gallbladder stones, kidney stones, hep C and a raging (their words) urinary tract/digestive tract infection on top of the pain from the broken neck, from the car wreck several years ago, well no wonder I felt like hell, and I am still angry that I have been to so many freakin drs that didnt care enough to listen to me, my symptoms or didnt know enough to diagnose me. Heck I have probably had diabetes for twelve years and it has destroyed part of my liver, the other part was destroyed by my Hep C, that I got at the drs, thirty years ago and nobody ever bothered to check it, I am disgusted with the drs and the state of the medical business in our country, the drug companies are running everything, no more ethics, no more standards, just write prescriptions, for every 100 scripts they get a golf club or a trip, that is corruption to me,

Dont give up, keep going to drs until you find one that cares that will help you find out what the heck is wrong with you. Good luck, and call the pain mgmt drs office first and ask to speak to the dr, or the drs assistant first before spending any money and ask them what their philosophy is, explain your situation, then ask for a referral from one of those experts,,,that did your surgery, I will put you in my prayers,


If they gave you the meds while you were in hospital, your PM does not have a leg to stand on! Does he have privilages at the hospital? If not, there is no way that he could have any part in your care.

Having CP myself, I would be afraid to sue for fear of putting off other PM's who will be afraid to take on the case.
The ER might be different! That bum needs to loss his license!

Not all PM's are this nuts. Keep your letter. Show it to your next PM. I had to change because the bum I went to made appointments and then left patients sitting in the waiting room for three to four hours to get a new script. Talk about feeling like a drug addict. One time, my back hurt so bad that I passed out onto the floor from pain. They left me there claiming that I was "acting out". He gave me a lecture "if you ever do that again, I will drop you". Yeah, right, like I wanted to lay on his dirty disgusting wait room floor.

The next one I saw, I told the truth even about back pain so bad that I pass out. He actually took X-rays and read them himself. He could not believe that I was walking unaided with the arthritis that I have in my back.

There is help out there. Stories like yours help the rest of us find peace when celebs like Michael Jackson die from OD's and scare the living do-do out of us.

If it does not offend you, I will put you on my prayer list. Just let me know by private note. If it does offend you, no need to worry! I don't want to do anything to offend or upset anyone.

Wishing you help,

Sorry, I forgot this!

I throw up the contrast crap too. They found out that I am allergic to it. Supposedly, you can't get sick from drinking it. I don't believe it. I always toss it right back up. If my aim is really good, I hit the tech who is demanding that I have another glass.

When I was released from the hospital, I did have an extra script of pain medicine. It was a lower dose than what I was given from my PM doctor and my urologist told me to take it only for breakthrough pain, and then gave me the letter and told me I shouldn't have any problems with my PM doctor because it was only short term, for post surgery pain. I was only on enough medicine (3 Percocet 10/325's a day) to get me through maybe 10 hours. He said I would need to take the percocet every 4 hours on the dot to keep up with my pain and not let it go unmanaged and get worse so I'd have to return to the hospital. He also wrote this in the letter to my PM, stating that I did tell him I was under contract with a pain management doctor and clinic, but he was treating a new problem that had risen in my health and needed to be addressed immediately and couldn't wait for my next PM appointment because I needed the medicine THEN, following my surgery, because let me tell you, having an 11 inch catheter/stent in your ureter that is constantly making you have bladder spasms and causing unbearable pain, while trying to pass pieces of stones that have broken up, is NO JOKE. I couldnt wait for him to write me an additional script. My urologist was appalled that my PM doctor dismissed me, because he had taken the time to personally write him a letter explaining that it was HIM telling me to take the extra medication, I didnt ASK for it, it was GIVEN to me because it was NEEDED immediately for me to be able to manage my pain and have a normal life for the 2 months the stent was inside of me. I eventually had to get the stent removed (against my urologist's advice) because the pain was just too much. It was getting to the point where I'd fall asleep in the steaming hot bath tub just to try to take my mind off the pain. The medicine was starting to not work like it did before, and I did not want to ask for a larger dose, even though I had been dismissed from my PM. I just wanted it out, and wanted to try to live without my medicine. That was a mistake. A big one. Now I am on the hunt for a new doctor. I am debating whether I should go to the Methadone clinic here in town. It's 12 dollars a day and they give you a daily dose. I've heard nasty stories about Methadone, but really, what else can I do if I can't find a doctor? It's not easy for me to travel because I have 3 kids. And my husband works 60 hour work weeks. I'm so stressed. Stressed isn't even the word. I'm more than stressed.

And do you think I could still sue the hospital for them misdiagnosing me?

Of course not sue my former PM doctor, but sue the doctor/ER that initially started this rollercoaster to hell and back and then back again, in 2005? Has it been too long? Or is it better that it's been longer, to show that I've had serious, serious long term effects that will effect me for the rest of my life? Do they have a statue of limitations on that kind of stuff?

Get this- the ER doctor that saw and dismissed me the last time before my lung collapsed (the one that didn't see anything on the X-ray and never contacted me when a radiologist did in fact see something serious that needed to be evaluated), those were the exact words on my medical records. "Patient shows some major AND minor lesions in lower left lung and signs of fluid build up, needs to be re-evaluated and tested for lung disorders, diseases and forms of communicable pneumonias. Contact the patient and/or family doctor immediately." anyways- the doctor that saw me, I saw him on TV a couple weeks ago. He now owns his own "Hair Removal and Vein Salon" where he does cosmetic procedures and makes people "feel and look pretty" now. If they only knew! He almost killed a 20 year old newlywed and new mother 4 years ago!

OMG, You have been thru so much and now this! I exactly know about having a stent placed on your ureter since when I had my hysterectomy back in 94 my ureter was clipped by my OBGYN and it collapsed and I needed it repair, etc, long story, but I had a stent, so I feel your pain!

OK, now.... about your pain management. Did you asked your Urologist if he knows a PM that he trust and likes that he can recommend to you? That might be the best way for you to go. Methadone clinics like the one in your hometown are usually for heroine addicts that are put on Methadone by either the courts, or the rehab facility that they just came out from, etc. to make sure that they don't go thru DT's... this type of Methadone (which is usually liquid) is not the same that is given to a person that is on CP.
You need a pain management Doctor. Have you tried calling your local hospital and ask for different names, etc. of pain managemenet Doctor's? Like I said before, your Urologist has to know some PM Doc's in town that will be able to take you. He can also personally call your former PM Doc (if you still want to see him) and explain the situation to him, either personally or over the phone! Not on a letter, but talking person to person like the professionals that they are....

About suing the hospital.... Statue of limitations is usually 2 years, and if this happened in 2005, you are 2 years too late. But, your State might be different, call a malpractice lawyer and get a free consultation and see if they can do something for you.

You first priority right now is getting your pain meds. If I was you I will go get a phone book, look in the yellow pages and start calling pain management Doctor's and see if one of them will take you. But again, I think that it will be in your best interest if your Urologist finds one for you. Take care and keep us posted. Good luck to you,

About your question on methadone....I was on methadone for about 4 months for chronic back pain. It was prescribed by a pain specialist, who said that methadone works really well in women with chronic pain (I can't remember exactly why now - it had something to do with which opioid receptor it bonded with). Anyway it worked really well for the pain but I ended up with urinary hesistancy, meaning when I went to the bathroom I had a really hard time starting to pee and I never seemed to empty my bladder so I was up and down to the toilet every half hour.

I complain about the stigma associated with taking narcotics here in Canada but I must say I have never heard of anyone having the kinds of troubles here that you and some of the other posters have described.

BTW, I am on 40 Mg's of Methadone for chronic pain and it works great for me. So if you can find a new PM, Methadone is a great medication to be on..

I feel your pain. I had a stint several times. I can't imagine having it for more than a couple hours. You are a real saint for sticking with that for your family.

Just one thing, you don't have to appologize for being in CP at a young age. There is no age restriction on CP. I am amazed at the courage you demonstrate in your positive attitude when you talk about the experience.

It may be too late to sue but it does not hurt to ask. If you get nowhere, you can contact a local news agency and let them know about the doctor's treatment in order to prevent others from suffering.

Hope you find a PM to help you soon,
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