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FriarJen83 04-06-2006 09:07 AM

My dr. fired me today......need to vent!!!
okay, so I'm feeling really angry and at the same time just feel crushed....I feel like giving up. I went to see my dr. today - my primary care dr. is the one who prescribes pain meds for me because nobody else will do it "because I'm so young." I'm 22 now, and have been in constant pain since I was 18 and have 3 fractured vertebrae, 2 herniated discs w/ nerve damage, 4 collapsed discs and 2 bulging discs mostly in thoracic area. I have been with this dr. since I left my pediatrician. She was prescribing 20 mgs of Oxycontin 2x a day and 3 Oxy IR 5 mgs a day. She had previously cut my dosage more than half b/c I was having bad headaches..... today I took my father with me and I simply asked if I could go back to the dose that I used to be on as 20 mgs does NOTHING for the pain; I've been on Oxy for a year and a half and that was the dose I started on! Plus I no longer have any headaches since I started taking Effexor. anyway, she got all mad and refused to increase it.
we also had a little situation last time she refilled my OXy IR because she wrote it for once every 4 hours.....and I took it once every 4 hours. Then when I called for a refill she refused and said I was supposed to take 3 a day. Okay....that wasn't my fault!!!!! She wrote it like that, and she has changed the instructions on several occasions for refills so it was nothing unusual.

Then, when I was leaving she put the wrong dates on BOTH of my scripts so I sent them back to her. She made me wait for 2 hours and then called me back, gave me the scripts - 1 still with the wrong date on it - and said, "You need to find a new doctor, I am not going to do this anymore." and left.

I DON'T KNOW WHAT TO DO!!! I have NEVER taken more than I'm supposed to, never called for an early refill, I've done everything she told me to do....and now I'm stuck and I feel completely, totally hopeless. I've seen 5 different pain docs and none of them would prescribe for me due to my age which is so completely unfair. I'm so scared that I won't find another dr. who will actually treat my pain. I just want to be able to function and I'm in too much pain to move already. What should I do????????????
:( Jen

Fabrashamx 04-06-2006 09:38 AM

Re: My dr. fired me today......need to vent!!!
Hi Jen, I am so sorry that this happened to you, and that at your young age you are going through so much pain. I also use my primary as my pain managment, and have DDD and a cervical fusion, nerve damage, and other issues similar to your own. This is wierd because for years my doctor also put on my lortab scripts 'one to two tablets every 4 hours as needed for pain'. even though in our discussions, It was understood I was to take 2 a day and it had to last 30 days. At one point a few years back I had a lot of increased pain and she was on vacation, so I made an appointment for the day she was to return, and started taking the meds as prescribed on the bottle instead of the 2 a day we had discussed. The day I saw her she made it clear I was NOT to do that without discussing it with her first in the future, however in the meantime she cancelled my refills, wrote me a new script for the increased dose and told me to see her in one month, at that time I was doing better and she designed a taper to get me comfortably back to my original dose. BUT my bottles continued to say that on them until yesterday when I saw her for my 6 month med check. I asked and got an increase to 3 per day rather than 2 and now the bottle says 3 per day. I think its not fair that you didnt have a similar outcome, and I agree your age might have a lot to do with it. If I were you I would write her a letter outlining what you did and why, and ask her if there is a way to resolve this. If not, don't give up, we've all lost doctors, even if they just moved away or retired, you will find relief if you keep looking. document everything, keep a pain diary, and advocate for yourself as much as possible, and I think as a young CPer you have to even more than us older folks ( :eek: lol ) make sure you follow every direction to the letter and get pre approval for any change at all. Good luck, don't give up and let us know how you are doing! Hugs, Fabby :wave:

Kissa 04-06-2006 11:41 AM

Re: My dr. fired me today......need to vent!!!
I'm sorry to hear what happened Jen. I used to be in your shoes for many years. I started having pain issues at a very young age due to osteoarthritis and Ehlers Danlos Syndrome. Until I was in my mid 20's doctors were all sympathetic but wouldn't prescribe anything for the pain other than anti-imflamatories and large quantities of Ibuprofen. It was difficult to say the least. It wasn't until I was in my 30's that I actually got appropriate treatment for pain and I had already been through 12 surgeries at that time with a host of new medical problems as a result of the EDS.

You can try to write to you doctor or talk to you doctor but chances are because they are a FP they may decide that they will no longer treat you. I don't feel you really did anything wrong, in fact there's been a few errors on your doctor's part but many doctors, especially FP's are afriad to prescribe narcotics or opiates because of State and Federal Laws and regulations. They also have it in their heads that they'll turn you into "addicts" which is simply not true. It is proven that individuals like us who really suffer from chronic pain are less likely (like only 3% or less) to become addicted to medications than those who do not have pain and abuse medications. Our brain and bodies process the chemicals much differently than someone who does not truly have pain.

I know that helpless feeling when doctors say "you are too young to suffer so much" and then refuse to help you. The best you can do is try another doctor, preferably a Pain Management Specialist who is caring. It may take some time to get help but often that's our only recourse. You can't give up, you have to keep on trying and praying that you'll find someone who is willing to help you out in some manner.

I know this doesn't help you much but I just wanted you to know that I do understand your frustration and pain. I'm sure others will have much better advice than I do such as Fabby but until then just hang in there and do the best that you can do to get through today

Hugs, Barbie

tina76 04-06-2006 12:55 PM

Re: My dr. fired me today......need to vent!!!
If your doctor continues to not want to treat you, ask her if she can at least refer you to a pain managment specialist tellin them that she is not comfortable handling your level of pain. Taht is why my doctor did. Hoepfully she will at least do that for you!

Bictwin 04-06-2006 07:04 PM

Re: My dr. fired me today......need to vent!!!
I totally understand what you mean. I myself am 21 years old and started having pain at 15. I started going to PM at 16 and lucked out since I got the perfect doctor ever. She listens to me, works with me, she's just great. So it's not just need to keep going. Don't get frustrated (even though I know how frustrating it is!) just keep looking for that perfect PM doctor. I see a doctor in Santa Monica at the UCLA Pain management and spine care. And they are great. I wish you the best of luck! I hope everything works out for you. Good luck.

Ashley :wave:

Shoreline 04-08-2006 12:14 PM

Re: My dr. fired me today......need to vent!!!
Hey Jen, You mentioned you had a "little situation", if nobodty tells you what you have done wrong, you will keep making the same mistake. First there is no such thing as a little situation in PM when it comes to your pain meds. If you have been seeing this doc for 2 years, does he not prescribe 30 day supplies at one time, 60 pills , 90 pills 120 etc. Regardless of How the order was written, take 1r every 4 hours or 1 every 12 hours, That prescription was most likely a 30 day supply, I've never recieved anything othe than a 30 day supply.

The prescribing orders allow you to take a pill every 4 hours if you have too during a flair or BT pain. I'll bet he gave you a number divisable by 30 and somewhere on the prescription you picked up, a days supply was calcualted. If it's been 2 years and pharmacist knows your doc prescribes 30 day supplies, that's what it is, regardless of how it's ordered. To say you didn't know this script was a 30 day supply is pretty rediculous 2 years into pain management with opiates.

The idea of BT meds is to give you something to deal with pain when the LA med isn't working, and to prevent you from having to make an emergency call mid month, after hours or go to the ER when your Base meds aren't working. Not to take them every day as much as you can based on the way they are written. If you know it's a 30 day supply, and I can't imagine not knowing, than at some point when the flair ended you should have stopped taking meds every 4 hours and resumed your normal schedule and use the BT meds as needed.

If you take the max amount of BT meds every day they simply become part of your dalily routine. They aren't BT meds, they are just a second opiate your supposed to take with your LA med. Did the doc tell you this is how to take them? When you actally do have a flair those BT Meds are no more effective than they were every other day you took the max amount because you felt the way the scrpt was written permitted this.

Many docs don't even use BT meds because many patients will take the max amount every day anyway. When they do have a flair, the BT meds aren't BT meds anymore, they were just what you take daily with your LA meds. It leaves you in the same position of not having the means to manage BT pain for which the meds were prescribed.

As far as a your GP prescribing opiates for life to a 21 year old that has never had back surgery, I would think it would make them very uneasy after a few years. GP's aren't PM docs, but their licence is on the line just like anyone elses. A patient that says I didn't do anything wrong when they know their BT meds were a one month supply isn't being realistic and can be seen as a problem patient.

If your ever not clear about how long the meds are supposed to last or how your supposed to use BT meds, ask the doc and avoid having to try and explain you ran out early because the doc wrote the script that way. Placing the blame for running out early on the doc won't make you one of there favorite patients.

I know people have bad flairs and there are days you may take an extra BT pill. That means sometime during that 30 day period you lhave to make up for the extra ones you took and do without. BT meds aren't meant to be part of your daily routine, and if you use them that way and then request refills before 30 days is up, that is non compliance, regardless of how the script was written.

Is the doc suposed to see you once a month to prescribe LA meds and then squeeze you in whatever day you happen to run out of BT meds? Where should the doc draw a the line. 2 years into the process is kinda late to say I didn't know better and only took them the way they were prescribed. IR meds last 4 hours, that's why he would allow you to redose every 4 hours if you need to on the particluar day your having BT pain, otherwise they really aren't BT meds.

Deciding that script was somehow different from every other 30 day supply you have been written and blaming the doc for running out early, isn't a "little situation," it's a major problem that will cause a doc to reavaluate his comfort in prescribing these meds for you.

At least you got 30 days to taper off or find a new PM doc. There is no gaurentee that a PM doc that sees you haven't tried every other method he can offer will prescribe the meds and dose you want. There are dozens of non opiate modalities PM docs can try but if you start with Oxycontin it's kinda hard to teach someone bio feedback or self hypnosis or any other method and expect a patient to be equally satisfied.

If a PM doc is ever audited or questioned about his prescribing practices, he better have a comprehensive list of other method to manage your pain that has been tried and failed or he won't have a DEA # long. You had a GP presribing that could offer no other inteventional methods to manage your pain. Have you ever seen a PM psychologist, had nerve blocks, tried hypnosis, acupuncture, Tens, TINS, chiro, PT, myofacial release,or massage. How many PM clinics have you been to and what did they offer aside from medication management that they themself were not willing to prescribe.

If the one PM specialist that he refered you to says you don't need opiates and need to learn other methods, The GP has nothing to fall back on and justify the need to pescribe these meds. The DEA isn't going to question a doc when the meds he uses are the last and only resort to restore quality of life, but if you don't have a healthy list of other methods tried and failed, the DEA doesn't think OxyContin should be the first thing to try when someone complains of chronic pain or when Vicodin no longer works.
Good luck, Dave

FriarJen83 04-08-2006 03:07 PM

Re: My dr. fired me today......need to vent!!!
Hey Dave,
Your replies always intrigue me and I understand what you are saying completely. However, the days supply on the prescription said 15, and the reason why this is unfair in my case is because she HASN'T always given me 30 days supply, sometimes 10, sometimes 15, sometimes more than 30, and there have been plenty of times where she changed the instructions on refills and told me to take it AS WRITTEN. She doesn't make me have an appt. to get refills, I just have to go pick them up and see her every 6 or 8 weeks. My dr. is not your typical pain management dr. as she is a PCP and I really think she is clueless when it comes to pain management. She will only prescribe oxycontin or duragesic, that's it.
and yes, I have been taking the max on the BT meds because my pain is so horribly undertreated....I mean, come on, to be on 20 mgs for a year and a half it has to be obvious that I'm quite tolerant by now! I don't have "breakthrough pain", I have horrible, excruciating pain every second and oxycontin gives about 10% relief for about 2 hours at the most.
and yes, I have been to 4 different pain docs and have done everything there is to do....all the PT, chiro, injections, TENS, pain rehabilitation program.... I've done it all. It was 2 years of constant agony before I was even prescribed Tylenol #3. I think maybe I should just go ahead and have back surgery and then my pain will be taken more seriously. For me, back surgery means a 10 level fusion of the thoracic spine. I am willing to do just about anything to get some relief. I can't sleep, I lay awake all night crying from the pain, I can't function, I have had to drop out of school twice. I have ZERO quality of life right now. zero. and it's killing me. I can't live like this anymore.
anyway.........thanks guys for the encouragement and all......

Fabrashamx 04-08-2006 05:39 PM

Re: My dr. fired me today......need to vent!!!
Hi again Jen, I just wanted to encourage you to hang in there, I know its easier said than done, I had a ruptured disc that was not treated for months, I know whats its like to be in pain like that and feel no one is believing you or understanding. It sounds like this doctor was kind of loosey goosey in her instructions to you, I would still write that letter, and ask if your relationship can be repaired and if so if she would agree to make it very clear to you what you are and are not supposed to do so this won't happen again, And then you will know what to expect from month to month. If this doesnt work out please keep looking and keep posting, we all care what happens to you. I think for all CPers but particularly for ones that are younger or have no DX yet, being prepared and documenting everything is the only way to go. Better to call the doctors office with a silly question then to have them angry that you didn't ask something. Hang in there, best of luck!~Fabby

feelbad 04-09-2006 07:26 AM

Re: My dr. fired me today......need to vent!!!
Hey jen,just a thought here,maybe it IS time to think about a possible surgery.I know the idea of it really sucks but honestly,how long can you take the unrelenting pain?unfortunetly,you are way too young to be having to deal with something of this magnitude I do feel for you, mentioned a ten level fusion,is that a definite from only one NS or ortho or has this pretty much been what you were told would be the only way to really repair whatever damage you have?Have you gotten more than one actual opinion as far as what options you would have for any surgery?just wondering.

I really do think either writing a letter to your current doc,just to get things all straight in both of your minds or trying to see another PM would be at least a couple of options.You need a bit more continuity in your pain docs just do not do what you need to have done,at least not really well in most primary was wonderful working with me and taking care of my pain needs thruout my herniated disc nightmare.but post op from my spinal cord surgery,things changed ALOT as far as my pain med needs and needing other options for trying to control some unbelieveable changes in my pain.Thats when we discussed referring me to a pain clinic which could just offer me the other modalities I needed to try and reign in this out of control nightmare that suddenly started appearing post op,like all over my body and just kept progressing.

Despite the fact that my primary had always gone out of his way to make sure my needs were covered,once I needed that first raise in my OC to 20 Mgs,he no longer felt that a family practice type of setting was the place for me,and I totally understood where he was coming from.The way your doc was actually Rxing your meds is the biggest issue here,really.not knowing just what your/her actual expectations were,well geez,what did she expect?

If you really want to stay with this woman you are going to have to get things straight with her and discuss between you and her the actual expectations of both of you.Personally,I do think going to a pain clinic would be the best option tho,really.but at any rate,you still need to get some things cleared up with your current doc,so this episode does not keep haunting you in any detrimental way down the road.

You know,I really don't understand why docs will tell you one thing when you discuss your doses with them but yet have something totally different on the Rx bottle.mine does this too.i am only actually allowed two oxy IRs per day for BT pain,but yet the actual bottle states take one every six hours as needed for BT pain.thats just plain wrong and from an EMS standpoint,just really the very least,it should state "with a max limit of"...i don't get that at all.Your Rxing info on any actual bottle should in all cases,be exactly what you are being told by your doc,always.I would think that this could concievably come back to haunt the doc at some point if certain things were to happen.espescially when the DEA is a breathin down their necks.a little clarification please??

I do think,if you have not already,at least get a second opinion on what surgical options you may have.that would definitely depend on the specific surgeons you would see and their level of actual experience and overall knowledge.when I was consulting NSs for a possible removal of my cavernoma from the inside of my cord,i actually got three opinions as i was getting totally contradictory info from the different NSs that I had seen.It just really amazed me that there was such a huge discrepency in just the actual cavernoma knowledge I was getting.i always get at least one other opinion from someone who is not affiliated in any way shape or form with the last surgeon i had seen,when it comes to the really BIG things i have had to deal with that just don't seem to want to actually stop.

I wish you lots of luck here,on everything you are dealing with.please let us know how things go and are going,K? marcia

BrittleBones 04-09-2006 10:56 AM

Re: My dr. fired me today......need to vent!!!
Hi Jen - I wanted to jump in and echo what Marcia has said. Why is surgery a non-option for you? I understand what you are saying about a 10 level fusion, but do you know what kind of quality of life you would have with such an operation? Right now it sounds like you have a pretty dismall one with the pain you are experiencing. It always puzzles me when folks are quick to dismiss surgery as an option! I have had 9 operations on my back to fuse all my vertabrae except those in my cervical spine and in each and every case the surgery helped diminish my pain. I have severe osteoporosis and have broken many bones spontaneously, including my vertabrae, my foot, my wrist and most recently my hip. Maybe I'm just a very lucky person or I have great surgeons. I'm not saying that my pain is gone. It isn't that simple. But with the methadone that I take on a daily basis I can honestly say that my pain is about a 3 or 4. And now that i've received my new hip (on March 16th) my hip pain is almost gone. I'm at a point where I'm ready to go back to see my pain management doctor in May to start the process of tapering down my meds. I'd like to see exactly how much pain I have without the meds. Sorry...I didn't mean to get off topic! My point is: if fusing your back would reduce the pain you are feeling, why wouldn't you consider it? I would want to ask my surgeon exactly what my limitations would be with a 10 level fusion and then try and make a decision based on your limitations now due to pain and those that might exist because of the fusion. Your age is really a positive. You sound healthy otherwise. So...that's my experience with surgery. I know there are nightmare stories out there about botched operations, etc., but you never hear about the ones that turned out well and gave folks back a better quality of life. All the best to you - I'm sure you will make the right decision. KathyMac

FriarJen83 04-10-2006 12:15 PM

Re: My dr. fired me today......need to vent!!!
Hi guys,
thanks for your replies and the advice y'all have given me. I think you guys are right...maybe it is time for me to really start to consider that 10 level fusion very seriously. I CANNOT go on like this; I just feel like giving up on life completely. The truth is, I am just absolutely terrified of having such a huge surgery. Seriously, I can't stand thinking about it. I have seen at least 5 or 6 surgeons over the years and they pretty much all say the same thing - that since the pain is controlling my life, they will do it if that's what I want, but none of them have offered much hope that it will really take care of the pain. The last one I saw, who is highly esteemed spine specialist in Pittsburgh, said that if I start having surgery now he could guarantee I'll need 5 more by the time I'm 30. I even traveled to Johns Hopkins to see a surgeon there who told me it's only a 60% chance that the surgery will even improve my pain. I don't think I mentioned that there was no reason or cause for all these spine problems, no accident or injury ---- I just woke up one day in awful pain and tests showed the 3 fractured vertebrae - and things have just kept getting worse from there.

I just feel so hopeless and total despair. I haven't been able to sleep or eat for weeks. How am I supposed to get through a life of chornic pain when no one will treat my pain? They say, "It's a disservice to you to be on narcotics at your age, you're too young.... blah blah blah.... what do they expect me to do, come back in 30 years when I will be "old enough" to be treated????

I think I will start looking into the fusion more and maybe even see yet another surgeon or 2. I am literally at the end of my rope with this now.
I am also going to make some appointments with some more pain management doctors and pray to God that they will help me. I don't see any resolution to my situation with my PCP because she has always been very mean and I never wanted to stay with her because every appointment and interaction was torture and painful, but I stayed with her because she was the only one who would prescribe the meds. I'm actually quite happy that I never have to see this woman ever again.

anyway....thanks for all the advice and's great knowing that you guys actually understand all this.
Hope you're all having a good day,

tina76 04-10-2006 01:40 PM

Re: My dr. fired me today......need to vent!!!
Jen - A LOT of it is in finding the right doctor. I was diagnosed with my chronic pain condition when I was 22 and I got a lot of the same flack about my age and narcotics that you are getting now (I'm 29 and I STILL get it sometimes!)... It was incredibly frustrating and I spent too much time in pain. But eventually I found a good doctor who was willing and able to treat my pain. You will too. Just stay positive. And look into ANY non-narcotic treatments (that could be combined with narcotics for a more well rounded treatment plan for your pain) and put together different ideas so that when you DO go into these new doc's you aren't just asking for narcotics... they will see that you are NOT some young kid who is uneducated on her condition...that you have done your research and are aware of different treatment that could help including, but not limited to, narcotics.

I sure hope you are able to get into someone soon. The longer the pain goes on the worse it gets... At least that is how I always felt...

Good luck!

TabbyKAT 04-12-2006 10:10 AM

Re: My dr. fired me today......need to vent!!!
hi im also 21 and had legg calves perethis, at 15 started having bad pain , and have had lots of docs dump me it hurts , but you will find some one to help you i promise , i always have , even thought thinking about finding a new doc soon now because of unfair and undertreated pain , hang in there its always harder for us younger pain patients

TABBYKAT :angel:

mrsaa 04-12-2006 11:17 AM

Re: My dr. fired me today......need to vent!!!
Hi Jen,

I'm sorry you are having such a difficult time. I'm 27, and my pain started from an accident when I was 24. It is hard to be young, and faced with the stigmas that come attatched to it when you're in legitimate pain. Like you, I have been to many doctors, and have had every sort of injection, been through years of PT, and tried anything I thought may work. My pain meds have never made the pain go away, and often, I find myself just trying to accept that pain medication can only do so much. However, that being said, I was on Fentanyl 25mcg, Percocet 5mg every 6 hours, and Valium 5 mg twice a day and still feeling a daily pain level of a 6. When I last saw my Pain doc, we decided to off the Fentanyl, to see if it was even helping, or just causing useless side effects. He upped my Percs to 7.5mg every 4 hours, and upped the Valium to 3 times a day. I can't say that besides some icky feelings the first week (a little shaky, sick stomach, hot and cold flashes) that my pain has worsened. It is just as severe without the added narcotic.

I think it might be a good idea, like some others have suggested, to write your PCP a letter, or attempt a conversation. Maybe it's time to go to a specialist. Also others have suggested trying different med combos (which, many of us know, can be frusterating!!) and surgery. They may be avenues you want to consider. It sounds like the first key is finding a good doctor who you can be honest and comfortable with. There are docs out there who don't discriminate based on age, sometimes it's just a long process to finding them. I know it's hard to be patient, at least for me, when you're not getting relief. Hang in there, Jen. There are steps you can take:)

jules1 04-12-2006 01:47 PM

Re: My dr. fired me today......need to vent!!!
Jen -

Have you tried any antidepressants? I know how upsetting pain can be, especially when drs won't take you seriously! I'm 23 and I have bad pain from endometriosis (nowhere near what you experience, I'm sure) and my dr won't even prescribe me tyl 3's! I've been pushed from dr to dr to rule out other sources of pain and its so frustrating because I've deal with this pain for 10 years so you'd think I'd know whats causing the pain!

I get depressed alot because of my pain. I've just had to learn to deal with it, and it stinks. I don't want to get out of bed most days. I've dropped out of school twice, and and trying again for the 3rd time. I graduate in a month, hopefully, if I don't drop out (not for pain related issues, I have horrible OCD/anxiety and am making myself sick over the stress).

Just hang in there, and if the surgery won't HURT you in any way and has a chance to help you, then I'd go for it.

Do you have things to keep you occupied so you don't think about the pain? DVD's? Games? Books? When i'm hurting I have to distract myself because its so easy to dwell on it, and the more you think about it, the more your body is aware of the pain.

Good luck sweetie. I don't know what to tell you about the dr other than getting a new dr. Your previous one seems really sketchy. I'd ask for a referral to a PM dr!! Call and ask to talk to her, tell her you don't understand what happened between the two of you, but can she refer you to a PM dr because you are in bad pain and need medicine.

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