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CynicalPain 06-03-2009 09:07 AM

Undertreated, Unrespected, Unable to Function
 
Hello to all. I have been lurking for a while, reading some GREAT advice, and finally have decided to ask for help and try to help others. My story here is a long one, so I thank anyone in advance for having the patience to read through if you so choose. I am going to be as concise as I can, and if I leave anything important out I will update.

I am a young man of 27, who within the past 16 months has been involved in 2 motor vehicle accidents (neither of which was my fault!) Since then life has pretty much sucked, with a never-ending cycle of hardships with family and life in general, therefore compounding the problem of pain 10-fold.

I have severe back pain, mainly concentrated in the thoracic area. Lower back is generally fine, and my shoulder (once pretty bad) has been relatively good since PT. But my back continues to affect every aspect of my life to this day, and I'm not sure if it's just getting worse or that the undertreatment is taking its toll. As I have said to many doctors and nurses, it is far more than just a "back ache". It has affected every facet of my life negatively, and I simply cannot take this "just deal with it" attitude any longer.

I've had several x-rays and MRI's to try to diagnose- what has come up is a protrusion at T6 I believe, and that's about it. In other words, no concrete diagnosis of causing pain. I KNOW that this is the crux of the issue, but I have been bending over backwards since trying everything under the sun to get the pain under control and a real diagnosis. I now have a much better handle on the source of pain, and will get to that later.

I have seen no less than a dozen doctors in this time, from my GP, a spine specialist, 4 PM docs, and a few at walk-ins. I have had just about the same result at each one, some better than others - little or no meaningful pain relief. I'm not a fool, and I know that these docs see me as a young, healthy-looking guy complaining of back pain - now that doesn't look bad now does it?! Yet I would think that with a shred of common sense a doc could see that I would NEVER be spending thousands of dollars that I don't really have to see so many different doctors, have procedures and imaging done, a solid 6 months of PT, etc, and NOT truly be in pain.

Initially my GP, who I had been seeing for about a year prior (after moving), would prescribe me Flexeril, Vicodin, and Anaprox - usually just 10 pills of each that was to last me a month. She read the riot act, every single time, about how addictive the Vicodin is and how concerned she is. I would explain that not only am I very responsible, my wife is a nurse and she keeps close tabs on my meds for me (in a good way). That didn't matter to her ever, as she was clearly more concerned with possible consequences rather than actually controlling my pain. OK I can understand that, as I'm a reasonable person, but what I can't understand is how easy it is for a doctor to literally let you suffer so much.

What really bothered me though was how she treated me, as time progressed and I wasn't improving, she clearly thought I was having a problem with the narcotics. She would mention every time how addictive they are, even though I clearly know the difference between addiction and dependence. It got to the point where I finally told her that if I wanted to catch a buzz, vicodin was far from my first choice. She finally referred me to a PM doc nearby, and thus began my journey into the cynical world of Pain Management doctors.

The first pain doc I saw was a young guy, at a large practice with at least a dozen docs in 3 offices. After a thorough exam, he concluded that it was Myofacial Pain that I was suffering with. OK great, now what I ask? His answer was Ultram ER and Tramadol for BT, and start trigger point injections. I tried the injections on 3 separate occasions, with zero improvement (the last round seemed to increase the pain). Over the course of about 4 months I titrated up to a total of 700 mg per day, and even at that it barely took the edge off. As I went to appt after appt with this guy, I would tell him just how poorly the meds were working (also tried Flexeril and then Zanaflex). His answer - continue the same exact meds. I believe that when a doctor, or anyone for that matter, advocates repetition of the same thing while expecting a different result, they are living up to the textbook definition of insanity. Now I gave this doc and his treatments a solid 4 months before I realized that I was going insane too, so then it was time to find another.

In the meantime I went back to my GP to explain what's going on, that I need a pain doc who will actually manage the pain, not just pretend to and not listen to me at all. She said it was a good idea to try another, as all work differently. Yet she just could not resist lecturing me yet again about how I will become addicted to pain killers. She made me feel like I was doing something very wrong by asking for meds that actually worked. Go figure. At this point I am thinking that I need to also start looking for a new GP, one who really has MY best interest at heart.

So on to the next PM doc. Had a great first appointment, and I felt great. He took the time to explain to me what it clearly was NOT, and what it possibly could be, but admitted that frankly he had no real idea what was causing my pain. I truly appreciated the candor he had, and then talked to me about possible facet joint injections. He also explained that the area I was having pain in, the thoracic area, is a very rare spot to actually have injured something there, just due to the anatomy. He then referred me to his partner, who was more of the expert on facet joint injections, and explained to me what the procedure was (even used the little plastic spine thingy!) And then without me even asking, he said he would give me a short-term script of Percocet 10/325 (1-2 every 6 hours as needed) and Flexeril. And so I thought, "FINALLY, a doctor who actually gives a damn!"

Next I see his partner a couple of weeks later, who after talking to for a while actually ruled out using facet joint injections, primarily because of the number of injections needed to pinpoint the pain, and he really didn't think they would help. OK fair enough, now what? His answer was to try Botox injections directly into my back muscles to stop the constant spasms and associated pain. Sounds great until I learn that it was going to cost me about a $1000 out of pocket as it's not covered by insurance. But at this point I was so desperate for meaningful pain relief that I would gladly pay it. Scheduled an official procedural consultation for a week later.

The next day I went into work, and got let go. Did NOT see that coming! Turns out they were trying to cut costs, and as a sales manger there, I simply wasn't selling enough to make it worth their while (side note- not at this point but much later through deep introspection did I realize that this issue of pain being uncontrolled for so long had profoundly affected my motivation and ability to work as hard as I should, thus contributing to my losing my job. Not fully to blame for sure, but definately a contributing factor).

A few days later I go in for the consulation, and I tell him of my new work situation or lack thereof, and therefore cannot afford the procedure just yet. What happened next gave root cause for the choosing of my name on here. He tells me that he will not treat me on just meds, and therefore I would have to be referred to another doctor for that, "but come back when you're ready for the procedure." Yea OK doc, dump me when you can't make much off of me and I will surely come back when I can afford it. If I said what I wanted to I would have regretted it. He gives me a script of Percocet, as I had been taking, but cuts my dose by MORE than half, allowing 3 per day total. Tells me that they are bad meds and I will get addicted, and I should start weening off of them. Since I was never going to see this guy again, AFTER he handed me the script, I told him that I found it very troubling and unprofessional of him to be playing God with my health and cutting my dosage by so much without offering an alternative. This is now the 3rd or 4th doc who seems to have no problem with me suffering.

They email me a list of docs who supposedly do pain management. Out of about 20 listed, maybe 5 were out of practice, 5 had the wrong number, 5 didn't take any insurance, and a couple simply did not do PM. The one doc that I called who I did make an appt with, the lady on the phone specifically said that the practice that I was leaving is notorious for dumping patients on them that they just don't want to bother with. This only reinforced my decision to never go back there.

So I had more than a month until this appt, and went back to my good ol' GP. This time she has a med student following her. She decided to demonstrate how you have to be "tough with the people who have pain problems." This did not go over well. At this point I had been belittled by one doc too many, and she then knew all about it. As an aside, even though I had already made an appt with another possible GP for two weeks later, I was really trying to make it work with this one, as I'm an established patient and I really like her as a doctor, except when it comes to PM. So I told her that we need to have a very frank conversation, and I basically laid it all out to her, and she nodded and said she understood. Leaving with about a 3-day supply of now 5mg Percocet, she said to come back if I need to. So I did, about 5 days later. She acted shocked when I told her that I actually FOLLOWED Rx directions and am now out of meds. Guess math isn't her strong point. She again has a different student with her, and tells me that "this is the last time she will ever do this for me". At this point I had had enough with the constant looking down upon me, and I told her as such and that I was finding a new GP. I need a GP that I can trust and rely on, and she wasn't that at all.

Went to this new GP, who was recommended by my physical therapist, and I loved her! She was very understanding, concerned, and had no problem writing me just a weeks worth of Percocet until my next appt with the 3rd, current, and final PM doc the following week. She also wanted me to try Skelaxin again, even though it didn't work before. After a few days of the Skelaxin, I called her office to let them know that and asked if I could have Flexeril or something else (though I had told her how much Flexeril knocked me on my butt). Within the hour a nurse called me back to tell me that the doc had called in a script for me for Soma, and to call them back in a few days to let them know how it was working. Soma has been by far the best MR I've had, as it works well and does not make me very loopy. How refreshing it was to NOT be treated like a drug seeker.

So now I am starting with a new PM doc, and on the first appointment he spends a solid hour examing me, talking to me, and oh yea, he doesn't Rx on the first visit. But he does have me sign a release of my pharmacy records and also sends me for a UA, so even though I am out of luck completely for the next 2 weeks until the next appointment, it is obvious that he plans to treat me. I am now happy after this appointment, as the signs are good that this doc will be treating my sufficiently.

Fast-forward 2 weeks to the first follow-up. I had built up a lot of hope that after this next appt I may finally be able to live my life somwhat normally. How wrong I was. At this next appt he spends all of 10 minutes with me, handing me scripts (5 in all) while explaining very little about them. I had made it very clear that pior to coming to him, I was taking Soma and Percocet, and those did a decent job managing my pain. I said clearly, that I would either like to continue on those meds, as they were working OK, or I'd be wiling to try other things as long as they work as well. So in his genius of prescribing, he writes me the following:
Neurontin - 300mg 1x per day
Nortriptyline - 10mg 1x per day
Vicodin - 5mg, max 2 per day
Parafon Forte - 50mg 3x per day
Arthrotec - 50mg 3x per day
I didn't want to ask much and sound like a know-it-all, but dropping from 10mg Percocets 4x per day all the way down to 5mg Vicodin 2x per day is a HUGE decrease in dosage of a pain med. Instead of freaking out at first, I figured that he's the expert, and wouldn't do anything to harm me. Wrong again. He put a lot of faith in those other 4 meds to control the pain enough to make up the difference in dosage of the pain meds. I can't even begin to describe how much of a joke that was. Not only did this regimen work 90% LESS effectively than my previous one, I was now taking 5 meds at 3x the cost, for much much less pain relief.

OK so it doesn't take a genius (or a doctor) to figure out if it's not working then we should switch, so at the next appt I told him very simply that I was doing far worse on these new meds than I was before. He really didn't seem to care as he handed me refills for mostly the same meds, except switched the MR to Norflex (which has helped a bit better). Over the next few visits it becomes very apparent that he simply does not trust me, as he has a compulsion to refute much of what I say. Like when I say I'm not sleeping well, he says it couldn't possibly be because of pain as the other meds should help me sleep. Glad to know he can actually feel my pain through ESP.

It also becomes apparent that he thinks I am all about the narcotics, because I keep reminding him how much better I was while on Percocet and Soma. To him, Soma is an evil drug that no one prescribes anymore, except for GP's that don't know any better. And as far as narcotics go, he would slip in little tidbits of his inner beliefs, like how "most people find they get a euphoric feeling, and confuse that with pain relief", or how "people become easily addicted and then I have to dismiss them as a patient", or, and this is the best, "I am treating you according to protocol based on the type of pain you have." What he doesn't realize is that I've made a living in sales by learning how to read people, and read in between the lines. He was clearly saying that he doesn't believe that I'm in so much pain and that because I can't show much diagnostic proof then he will only treat me minimally at best. All the while I keep telling him that I don't really care what kind of med works I just need to live a decent quality of life.

Frankly 5mg Vicodin is a joke to me. I'm a big guy at 250lbs and for most meds I take a somewhat higher dose anyway, just the way I am. So for the time being what I would do is take my two Vicodin a day at once, thereby giving me ONE dose that is somewhat effective. Never mind that it lasts 4 hours max.

One day I'm out fishing, which is my passion in life and will never give it up unless I am completely paralyzed, and I'm in so much pain that I call the docs office to tell them that the pain is so bad that I can't sleep through the night. A nurse calls me back and tells me of the doctor's response - "don't drink caffeine after dinner, don't nap during the day, and take a Tylenol PM if need be." Gee thanks doc, glad you are really looking out for me. At this point I am just plain insulted, so I tell the nurse to please have the doctor call me. He calls back within 10 minutes, and though he says he understands how hard it is each day, he cannot and will not increase any meds. Again, thanks for nothing doc.

He does however have me bump up my next appt by a few days, so I go in, this time with my wife, and tell him that I simply cannot go on like this, that I need truly meaningful pain relief in whatever form it comes in. Again tells me how bad narcotics are, etc, and finally agrees to increase the Vicodin from 5mg to 7.5mg, at the same 2 per day! He absolutely would not allow more than two a day. So now with this monumental increase in dosage I must be fine you would think. We discuss facet injections, and at this point I said how soon can you do them?

Scheduled for the following week, I go in and the plan is to do the left side of my thoracic area that day and do the right side two days later. Injections start out fine until at T6, where I literally came off the bed it was so intense. "Seems like we found a source of pain, great. Can you please take the needle out now? It's been out for a few minutes. Oh." That one spot has been stabbing like hell ever since, and it's been over 2 weeks. The next round of injections two days later was about the same, where one certain spot was found to cause a lot of pain. However I made a rookie mistake I believe, and waited until AFTER the second round to ask for a temporary increase in pain meds. I was promptly and unceremoniously denied.

So this is a Friday, and I have the bright idea that over the weekend I would double up on the Vicodin just to be able to get off the chair and do something, and then call them on Monday if it's still really bad. I figured that as a doctor he must be obligated to provide adequate pain relief right after doing an invasive procedure. How wrong I was. When the nurse called me back, she said that the doc said to take 200mg of ibuprofen every 6 hours. I again told her that was insulting, and that was it. This doc clearly does not trust me, and my health and psyche are suffering in a big way.

This is the point I am at now, stuck in limbo with very inadequate meds, increased pain from the injections, and a doc who doesn't give a damn it seems. What the hell else can I do? I can't just keep going from doc to doc, I can't afford it and I refuse to do it anymore. I'm at the point where I just want to give up but I can't. I'm a husband and a father, and I have an obligation and desire to provide for and take care of my family. I have been slacking on that a bit lately, not in a big way, but it really bothers me when sometimes I have to say no to my daughter who just wants to go for a bike ride, but daddy hurts to much right now. It's really killing me.

There are many other external issues that are adding up here, and I am scared to death that I may be heading for a nervous breakdown or something. My depression issues have been getting much worse over the paste few months, I am in constant pain that keeps me from being very productive, my mother-in-law needs a lot of help these days as she is suffering with cancer (she is also 400 miles away, so traveling is very difficult too), and I just finally accepted a job offer. I am also scared to death as this job will require about a 70-hour work week driving all day, which I KNOW will be hell on my back. I am so scared that I will end up not being able to do this kind of job anymore.

So if you've made it all the way to the end here, thank you for your patience and any help or advice you can offer:angel: I just have no idea what to do at this point. I'm only getting worse, and I need to get over this and live my life. I have no patience and no money left to keep going in circles. What I have done is written a long letter, much like this post, with the intention of sending it to my PM doc to try to get across what he is missing with me and that I need real pain management. Though I have no idea how well that will go over.

Thanks for any help!

slipperyslope 06-03-2009 02:00 PM

Re: Undertreated, Unrespected, Unable to Function
 
wow you sure have been through the ringer haven't you? I do commend you for trying to get to the bottom of your pain issues as you have ridden a long hard road, with very little help and this saddens me.

What my suggestion is at this point would be is to make a new post here on this site asking for a recommendation for a NEW PM DR in your area that is proven to be helpful caring and good. And one that is not afraid to treat a patient with narcotics if the DR feels they are appropriate given your situation .

so make a new post and see if you can find a new PM DR, and hopefully if you tell us where you live someone will know of a Good one in your area.

A lot of the problems here are that your pain cannot be seen on an MRI or on any x-rays so it seems that these DR'S feel you are faking your pain just to get meds. As this is what I am gathering from your post and by the way you talk about how no one will give you any narcotics for pain relief .

And How every DR you ask for meds will not give them to you is a clear indication that they don't believe your in pain. Its very sad. It also seems like every medication except for percocet and soma hasn't helped nor do any of the injections so you can see why the DR'S are thinking this. I don't agree with there thinking but I just wanted to point that out to you. This is making things difficult for you to get the pain relief you need.

I would Gather up all of your MRI reports, x-rays, records, and get a file going on all of the treatments you have had so that you can bring them to a new DR and be totally prepared. It will also be important for you to read the notes ahead of time to see what the DR'S are saying about you so make sure you get the copies ahead of time.

The thoracic area of the spine is not as common to treat as the cervical and the lumbar areas are is so I think you really need to find a DR that is familiar with upper thoracic Injuries. Have you checked with a neurosurgeon? It might be a good idea to talk to one. Since none of the other DR'S are able to determine where your pain is coming from and how come you still have pain after all of this time.

They might have more experience in this area and could really benefit you. There is one gal that visits the board names Feelbad and she will hopefully come on and be able to give you some advice on the upper back as she too has upper back issues, as does brittle bones. So I hope they come on soon. Its not a very common problem so I think this is making things more difficult for you to be treated and diagnosed.

All you can do at this point is find another DR even though you have seen so many already, what else can you do? but keep trying.

I understand why you keep going to different DR'S as you have had nothing but uncaring narcotic phobic DR'S. I am also thinking its just bad luck. LOL.

I think some DR's start to become suspicious when a patient has seen 4 Pain DR'S and a slew of other DR'S so you really need to be careful from here on out that your not going to look like your DR Shopping. It will help if you Do your research ahead of time with your next PM DR so hopefully this will be the last one you need to see. What you need is a personal referral from someone who has had good luck with this Pain Dr and one that is not afraid to treat pain. That way your not going to be in the same position your in now with hunting down DR after DR.

I have never had this many problems being able to be treated for pain that I can't even imagine how frustrating this must be. I have had back surgery with a very serious spinal cord issue and my MRI'S show lots of cervical and lumbar problems, so the DR'S don't treat me the way you have have been treated and they are not afraid to help me with pain relief. I am very blessed that my GP handles my meds but I have also seen a pain DR for several years who works with my GP for my care. like you I have been through a lot of injections and different medications. Some worked and some didn't. This is very normal in the PM field to try a lot of different non narcotic methods to treat pain. Most people that are on long term opiates also take nerve medications, and other meds that are not narcotic in nature. such as sleep meds, anti seizure meds, and anti depression meds. all of these meds have pain fighting properties so your DR'S are not doing you a disservice by having you try these. Its totally normal and common and most of us have tried the same meds you have been given. So please know that the meds you have been given are a big part of pain management..Your DR is not throwing a bunch of useless pills at you, he is trying you on other modalities to see if they will help your pain. They also don't work for everyone.


I honestly feel very bad for you, and I do hope you can find the help you so desperately need. Don't give up you have come this far and it will happen for you once you find the right DR.


I also think that because your young and in pain with no clear cut diagnosis that this is a big problem as to why your not being taken seriously, as I have heard this many times before in people that are young and I don't agree with it. Young people have pain just as much as an older person does. A lot of DR'S feel that they don't like to treat young people with narcotics as they fear when they are older that nothing will work for them as there going to become tolerant to them at such a young age. But you can't help it your 27 and in pain.

Its really to bad your GP won't help you in the interim with the meds that are working for you, until you can find proper PM care. You have certainly tried everything you possibly can to get better so one would think the DRS would be more sympathetic to the pain you suffer on a daily basis and take you seriously.

Soma has a high risk of abuse so its not surprising to me that your Pain Dr won't prescribe it. It's an older medication and there are many newer muscle relaxers out there today that they prefer, so he is right about that. not many DR'S prescribe it as a first time MR, but some people have really good results with it so they continue to take it. My Pain Dr doesn't prescribe it unless none of the other meds work.

the (2) vicadins a day are a real joke. That would barely helps a headache let alone a person in CP every single day! That is almost laughable. As you can see, more and more Pain DR'S are afraid to treat patients with narcotics, and you have found all of them! Some Pain DR'S are okay with prescribing them as long as you have regular UA'S and pill counts and don't call in for early refills or loose your meds , some are just against them do to the DEA being on there backs, and the addiction factor. but like you said, there is a big difference between addiction and dependence. To me you seem very responsible, knowledgeable and smart and you know what your doing, and how serious these meds are. I Am sorry that you have been treated like a drug seeker when that is clearly not the case. you need pain relief and have proven that you will do almost anything to get out of pain so I don't understand why they can't see this and help you. It could also have something to do with the state you live in, as some states have a very big narcotic pain med problem, so the DR'S are afraid to prescribe to younger people or people in general. could this be a reason why your having such a hard time getting meds?

I really hope you can find a good PM DR to help treat your pain, and than possibly a good neurosurgeon that can figure out what is going on. I have heard a lot of people mention that MRI'S don't always show problems on the scans and that often times when people are in for surgery the DR will find things that didn't show up on the MRI. I have to wonder if this is the case with you.
as it does seem odd that your pain is so severe and they can't seem to find the cause of it. this would be very worrisome and bothersome to me.

In the mean time I would stop seeing your PM DR, and really push for your GP DR to keep prescribing your meds until you can find the care you need. Maybe by bringing your wife with you it will help Since she is a nurse and she can vouch how much pain your in. Keep a pain diary and bring this into your DR. Show your DR how much this pain has effected your life. This will really help if you get a new pain Dr and you can bring this with you. they will also love the fact you did this.

Your poor back must look like a pin cushion by now, at this point you might want to lay of the injections if there causing you more pain and than the fact the DR won't even give you more meds to take after the injections is horrible. I wouldn't give him by business if he isn't willing to help you. He is making a lot of money off of these injections, as that is there bread and butter. I would be so upset if my DR did injections on me and it increased me pain and than was told I couldn't take extra meds on a temp basis. that is just so wrong.
I am sorry I have rambled so much but I wanted to let you know I care and read your entire story and really hope that you can get some help! I will be looking for an update from you and will keep you in my thoughts. Your story has really touched me and made me realize how cruel some DRS can be to let someone suffer who truly needs help.

good luck on your new job. I know driving is very hard on your back. I hope you will be okay with the new job and extra stress. hang in there and welcome to Health boards. I hope to hear more from you, and next time with good news!


All The Best. SS
:angel:

CynicalPain 06-03-2009 02:18 PM

Re: Undertreated, Unrespected, Unable to Function
 
WOW SS, you have literally just made my day! Reading your kind thoughts and advice reinforces the notion that I am NOT just crazy!

I have to run out for a bit but will post more after, now realizing I have left some important details out. Thanks again!

brianpain33 06-03-2009 02:35 PM

Re: Undertreated, Unrespected, Unable to Function
 
Slipperslope has provided alot of valuable information and advice and I will not try to duplicate it. What state do you live in? I think it would be helpful for you to do a post asking for a PM doc in your area. Hopefullly there will be someone on these boards that can recommend a PM doc that will actually treat you with dignity and respect and treat your pain condition accordingly.

I can understand where you are coming from with being young and having chronic pain. I am very grateful and lucky that I have a doctor that is caring and understanding and treats my pain well. Can your wife ask around since she is a nurse to find a quality PM doctor. You can also try to ask your pharmacist about this. Tell them a brief concise background and what you are looking for. They know which doctors in your area presribe pain medications. Just make sure you tell them your pain condition and your frustration.

Good luck and keep us posted.

brian

pmtest 06-03-2009 04:33 PM

Re: Undertreated, Unrespected, Unable to Function
 
CP - Hello and welcome. I am really sorry that you are in sooo much pain. I am also young and it took me almost 10 years for a doctor to take me seriously. In the beginning myself and my drs just thought it was because I was pregnant but the pain did not subside after my daughter was born. As I said it was a long time before I could even get a dr to order an mri, which was not done until last year. It is very frustrating when you are in so much pain. I am currently in pm and have been for a little over a year. I do currently take pain meds but as I said it took a long time for me to get any relief. It is horrible that you can not get anyone to "believe" you, as was my situation as well. After the mri was done I wanted to say told you so :) I had to suffer for way to long and its just not fair for anyone. I am truly sorry and do hope that you find a dr that will give you something for relief.

Good luck!!!

A

Toonces1 06-03-2009 05:22 PM

Re: Undertreated, Unrespected, Unable to Function
 
WOW, I can see why you feel cynical. I can't even say how much I agree with you that it is amazing now some doctors have no problem with letting someone suffer indefinitely. I experienced several of these same issues. I am younger as well at 34 with up until recently "mystery" pain. I did finally find a pain management doctor who is compassionate and who believes me. Keep looking for a great doctor, but do be careful not to give the impression of doctor-shopping.

Don't accept the answer that there is no cause for your pain. I just finally got an answer after over a year of testing.

If you get a recommendation for a good PM doc in your area, I would be upfront with him/her right away. Tell her that you believe you have been labeled a drug seeker, and that all you are seeking is some relief from your pain and the ability to live some semblance of a normal life. It is good to say that your main goal is to find the cause of your pain and hopefully a treatment, but you can't continue to suffer intractable pain in the mean time.

I really wish you the best.

slipperyslope 06-03-2009 06:38 PM

Re: Undertreated, Unrespected, Unable to Function
 
Brian great idea. I forgot to mention that your pharmacist will be ble to reccomend some DR'S as well. smart thinking Brian ;). When you do approach the pharmacist start off by telling him all that you have been through with procedureS, TEST, MEDS and DR'S. Let him know what your pain condition is and go into some detail about it. Don't tell him your life story though. :D Than ask the pharmacist who prescribes pain medication for patients in severe pain, tell him you are suffering and no one beleives your pain is real. Hopefully they will be of some help. its an awkward position to have to ask the pharmacist this as they are very wary of pain medication and its abuse potential but I think if your careful, polite and call the pharmacist to the side out of they way of other people, maybe they can help you out. Its very good to be friendly with your pharmacist and to build a good rapport with them. we can get into that down the road as right now its not as important as finding you the right pain Doc.

SS

take care, SS

eyesworld 06-03-2009 08:09 PM

Re: Undertreated, Unrespected, Unable to Function
 
Are you in an area where there is a large teaching hospital, perhaps attached to a university? If so, that may be a good place to look for a pain management doctor.
I'll tell you, there were tears in my eyes reading your post. I remember lying in bed with the covers over my head before I began PM. I am so fortunate to have a marvelous, kind, compassionate treating physician and I hope you can find one too.
(((:angel:)))

Executor 06-03-2009 08:29 PM

Re: Undertreated, Unrespected, Unable to Function
 
First, let me say "welcome" to Healthboards. Many here have a wide variety of experiences and thus, can offer lots of support and guidance. :)

[QUOTE=slipperyslope;4002807]

What my suggestion is at this point would be is to make a new post here on this site asking for a recommendation for a NEW PM DR in your area that is proven to be helpful caring and good. And one that is not afraid to treat a patient with narcotics if the DR feels they are appropriate given your situation.[/QUOTE]

Yes, a very good idea. The type of Doc is everything, IMHO. I would suggest reading my post in the thread titled [I]"Chronic pain - Frustration"[/I] on the Chronic Pain board. The last post in the thread was 5/26. I cover the different types of PM Docs and the typical practices of each. It sounds as if you have seen a lot of the occupational / rehab Docs rather than the anesthesiologists. Getting the right Doc is everything. I've read a lot of posts over the last year from people in similar situations as you, and they eventually find the right Doc for their particular situation. So, please don't give up.


[QUOTE]
A lot of the problems here are that your pain cannot be seen on an MRI or on any x-rays so it seems that these DR'S feel you are faking your pain just to get meds. As this is what I am gathering from your post and by the way you talk about how no one will give you any narcotics for pain relief.

And How every DR you ask for meds will not give them to you is a clear indication that they don't believe your in pain. Its very sad. It also seems like every medication except for percocet and soma hasn't helped nor do any of the injections so you can see why the DR'S are thinking this. I don't agree with there thinking but I just wanted to point that out to you. This is making things difficult for you to get the pain relief you need.

I would Gather up all of your MRI reports, x-rays, records, and get a file going on all of the treatments you have had so that you can bring them to a new DR and be totally prepared. It will also be important for you to read the notes ahead of time to see what the DR'S are saying about you so make sure you get the copies ahead of time.[/QUOTE]

I think SS is dead on here....Right or wrong, I think she's right in terms of what is going on. Somehow or another, you have to do convince the Doc you're in pain. Once the pain is fully documented, I have found Docs to be very liberal in their prescribing practices. This is especially true when someone is referred to a PM from some other Doc who has documented their pain....A surgeon, some other specialist, family Doc, and etc.


[QUOTE]
The thoracic area of the spine is not as common to treat as the cervical and the lumbar areas are is so I think you really need to find a DR that is familiar with upper thoracic Injuries. Have you checked with a neurosurgeon? It might be a good idea to talk to one. Since none of the other DR'S are able to determine where your pain is coming from and how come you still have pain after all of this time.[/QUOTE]

Given what I just went over, I think SS is right....See if this other type of Doc can find your pain. You just may not have gone to the right type of Doc yet.

[QUOTE]
All you can do at this point is find another DR even though you have seen so many already, what else can you do? but keep trying.

I think some DR's start to become suspicious when a patient has seen 4 Pain DR'S and a slew of other DR'S so you really need to be careful from here on out that your not going to look like your DR Shopping. It will help if you Do your research ahead of time with your next PM DR so hopefully this will be the last one you need to see. [/QUOTE]

I would agree with all the above, in general. However, I think you can also propose a very good counter argument and that is that you're in a lot of pain and if you weren't, you wouldn't keep trying....you'd just stop if it was all about meds. I'd tell the Doc that you are so suffering so much, that is why you keep searching and you are very frustrated because it seems no one will help you (I wouldn't say "believe you" because that's a negative connotation). All it takes is one compassionate Doc to understand your story and believe in you and then you'll probably get the help you need.


You seem very frustrated (and justifiably so) by each med cut, or reduction. In your opinion, based on your pain, what type of regimen do you think you need? i.e Sometimes Docs will ask what you think you need, and if one did, what would you recommend for yourself? I am curious to see your perception of things is vs. your Docs.

Best of luck with this, and please let me know if I can help further.:)

Regards,

Ex

CynicalPain 06-03-2009 08:53 PM

Re: Undertreated, Unrespected, Unable to Function
 
Thank you all so much for your thoughtful words and sound advice!

There are many things I can add on, but I'm really not trying to write a novel here either. Just trying to give proper context to everything, as even I am still realizing things here as I talk about it.

You know I have asked the pharmacist, and she was useless at the time. However I don't think she really understood what I was asking, so I will try again. I'll talk to the other guy that I see there often.

I will keep actively looking for another doctor, it just gets so old starting over again; the same lengthy explanations, the same questions, raised eyebrows, injections, PT, etc. One thing that I am really curious about now is if this guy has even read my MRI films and not just the report? I never thought that that could be an issue until I was reading another thread earlier. I must say that the information available here is amazing, and the willingness of everyone to share experiences and advice is priceless.

One problem that I have is that I actually like this doctor, far more than the others. He spent a great deal of time with me initially really talking to me and trying to figure out what was going on. He said right away that he never prescribes on the first visit, so I already knew I wouldn't be getting any medication that day. From what I've heard about him, and researched, he is fairly well respected and considered very experienced in procedures such as injections. I believe he is a very good doctor, and wants to help me, but just doesn't trust me. One thing is clear, if he does not significantly change his outlook on my treatment, I have no choice but to move on and keep looking for another PM doc.

At this point I already feel like I've been doctor shopping, and I have. Just not in the negative connotative sense that many are accused of. I've been shopping, or just looking, for a good doctor who will take the time and effort needed to really help me live a decent life. I am a good patient, I follow directions, don't hardly complain much, don't whine.... as long as the doc is doing everything he possibly can, within reason. I find it impossible to believe that a guy with almost 20 years experience cannot handle a case of back pain.

I have thought about asking my GP if she would take over my meds if need be until I get settled with a new PM doc. The big problem here is that she is also new to me- just started as her patient about 5 months ago. She has really impressed me so far, with her understanding of my issues, and most importantly, she has my health as her number one concern. I did ask her for just a weeks worth of meds on just my second visit with her, and she had no problem with it for just a week. That was before I found out the PM doc doesn't prescribe on the first visit, so I managed for 2 weeks on old meds that don't really work much anyway but are better than nothing. So I'm really not sure if I should be asking her for such a commitment in prescribing all of my meds, even short term. I think she might be surprisingly helpful, but if not I don't think it will be a big deal either.

I'm thinking that if she will agree to that if it becomes necessary, I'd be happy with that. Only problem then is that I will likely say things to my PM doc that he won't want to hear. I don't mean in a disrespectful way, but I can be intense with things I am passionate about- and right now few things are more passionate to me than my health. I feel like he has failed me, so far anyway, and that I can't deny myself that I have some resentment for the way I have been treated.

I've written a letter to him. Haven't sent it yet though. And yes, it's long too. Starts out much like this post first did, in fact. I've been sitting on it for almost a week, debating whether or not to send it prior to my next appointment. This way I can get a lot of what I say out upfront, and maybe he can think about some things and maybe realize that I have some good points. Or he may just call me up and dismiss me outright. Not sure which, but I'm almost, just almost at the point where I feel like I have nothing to lose and everything to gain.

Tell you what though, I think all of this may make me a stronger person in the end. I've dealt with hardship before, although nothing like this, and I'm not actually dying from it. Point is things could always be much worse, and I remind myself of that so often. My mother-in-law has been having chemo and radiation for more than a year, so who am I to complain about some back pain? And the lady down the street who just dropped dead from a heart attack at 46? Or the guy at Walmart, in the wheelchair, greeting people in the front?

The glass is usually half full, at least I think it to be, but I'm getting really tired of trying to keep it that way.

PNo 06-03-2009 10:24 PM

Re: Undertreated, Unrespected, Unable to Function
 
Hello - I have read what all the others have written and good advice. I have another idea to add but I cannot type it tonight. Please don't send the doctor a long letter like your original post until you read what I have to say. A letter like that post won't get the job done for you! I have some ideas and I promise I will come back tomorrow - hurt too much to stay on now. I too have thoracic pain and I know it hurts you - they don't see if very often so they tend to not recognize it at first.

If you have time would you also add in all your information that wasn't in your posts like - what exactly is your pain, where is it, what are you pain levels on a regular basis and does anything make it better? When you say the medication didn't work, did they not reduce the pain at all? Thanks.

Back tomorrow. NP

Lovemydegus 06-03-2009 11:45 PM

Re: Undertreated, Unrespected, Unable to Function
 
yea, dont write any letters to your doctor that may, and probably will, haunt you later in your search for help. I started getting help for chronic pain when I was 19 years old, so I know some doctors dont care about age. But it seems to me like you just seeing doctors that speacialize in just procedures, you need to find a doctor that does meds and procedures. Did this last PM you are seeing refered to you by your new GP? If not, then maybe you could ask your doctor for help in meds, and to not look like a seeker, ask for a referal to a PM she likes, and ask her if she would refer her family to this doctor if they needed pain treatment.

Another good thing would be to make several appointments with PMs JUST for a "consultation", and ask what they would do for you if you where their patient, and if they would be willing to listen to you. And when you finally find one you like, THEN very nicely write a letter to the PM doctor you are seeing now, saying "thank you, but your services are no longer needed, but thank you for your services and time", that way you wont leave them on bad terms, so it wont hurt any future treatment with other doctors. But this is just some stuff I have tried and others have tried that has helped.

-DEGUS

Jema X 06-04-2009 01:04 AM

Re: Undertreated, Unrespected, Unable to Function
 
Hey there,

Wow, you sure have been through the wringer! Everyone has given you great advice and NP sounds like she has something to add tomorrow as well. She's very helpful so do wait out for that.

I'm 26 years old and have a severely damaged thoracic spine from a car accident. The one thing that saved me was seeing a neurosurgeon. Before I saw the neurosurgeon the drs were all concentrating on my cervical spine (which i had also injured) and completely disregarded everything I had to say about the pain I was having in my mid back. It came down to the fact that general drs and specialists are not well trained in how to read thoracic MRIs. When I went back to the neuro with my scans I told him about where I'm hurting and weak and he pointed out the areas involved on my thoracic. Everything in the thoracic is close together and quite tight, also of all disc herniations that occur only 1 in 100000 occur in the thoracic spine. This all combines to where drs don't know much about the thoracic and can't read thoracic scans (even some neuro's are not well versed in this area). I had numerous drs tell me that my symptoms must be coming from my neck because there was so much 'obvious' damage there, thankfully my neurosurgeon came through for me before I did too much more damage but even the MRI didn't show the true extent of the damage - because there are ribs in the way etc it can be difficult to see what's happening and my crushed T8 nerve didn't show up properly until they operated. I did go back to work against his advice and through driving ended up having to have major thoracic surgery. I do regret not listening to him as thoracic surgery is pretty risky and always a last resort.

May I ask what sort of pain you have in your thoracic? Is it localised to your back or does it wrap around your ribcage? There is obviously a lot of muscle involvement going on which I didn't really have. When I initially damaged the couple of discs that I did T8/9 and T10/11 mainly (damage much worse to T8/9 and a couple of other bulges at other levels) the pain was more concentrated to my back and I felt like a had a constant stich in my right side. Eventually all the 'back'/posterior pain went away and I was left with severe right sided pain wrapping around my ribcage - much worse when I breathe, twist, roll over, drive etc. They did the fusion and discovered the extent of the nerve damage - because the scan didn't show everything they didn't operate until they absolutely had to and by that stage the damage had been left for too long. I have been told that the thoracic pain that I now have is permanent. Yuck.

I was treated by lots of different drs to start off with because my accident was workers comp. I started on meds like tramadol, elavil, neurontin etc and continued with those up until just before my operation when I was in so much pain I couldn't stand up or get out of bed for days at a time. At that point I was put on Oxycontin 20mgs with Oxy 5mgs for BT relief. It was a lifesaver and I couldn't believe I'd kept saying no to stronger pain relief because I feared addiction. This is one reason why I strongly recommend seeing a neurosurgeon - in the hopes of getting a diagnosis. Once I had my diagnosis everyone was falling all over me trying to give me meds - I think the drs felt guilty for telling me all along that my chest pain must be anxiety! I now take different doses of the same meds along with neurontin, cymbalta (one of the best things I've come across) and panadol. They reduce my pain to about a 6 on the pain scale though it's usually less if I'm lying in bed after a good sleep (4 hours or so) and up to an 8 at night because my nerve pain is worse at this time. I guess this isn't my ideal pain relief - I'd prefer no pain at all or a 2 or 3 but that doesn't seem possible at the moment. I now have a great GP who does the actual prescribing of my meds, a wonderful pm who is actually a rheumatologist (nothing to do with my pain, I know but he's a good guy), a nasty pm that brilliant at facet blocks (used to be my pm but was got me mixed up with another patient and accused me of dr shopping in front of 6 nurses in hospital - also used to call me fat, which I'm certainly not), a neurosurgeon that just operated on my neck and diagnosed me in the first place and another neurosurgeon that has specialised knowledge of the the thoracic. Sounds complicated, hey.

I guess what I'm trying to say is that the journey can be long and hard - but don't give up. I strongly recommend a pain diary and taking copies to your appointments and if you think your PM doubts you, take someone with you that can set him straight on how bad your pain really is. Many PM drs are narcotic paranoid so I always try to be careful in how I talk about them - thankfully my PM is so open I don't have to worry anymore, other drs still love giving their opinion though, which drives me nuts.

Please let me know if I can help in any way. I probably should have held off posting until tomorrow because I'm not having a great day either - I hope you can understand my drawn out post :dizzy: my brain is feeling slow. I wish you the best of luck. Please keep us updated.

deborahramsey 06-04-2009 04:06 AM

Re: Undertreated, Unrespected, Unable to Function
 
Hey there, I can relate to your issue. I truly know what it is like to be in constant pain for months on end. They sent me to therapy sessions and although they tried very hard nothing seemed to work. I took flexeril and like you spent more time in bed sleeping, but at least I didn't feel the pain when I was asleep. But then again I had no life either. After I ran out of pain medicine I was scared that they would think I was just a drugie or something. Especially when they were doing 3 therapy sessions about 2 hours long each time and giving me cortizone shots and electrode therapies and here I still tried to tell them sorry I know your trying and they really were trying, but it didn't help no matter what they did and like you sometimes it just made it worse. Here is what I did. I ran out of medicines and didn't want to ask for more because nothing seemed to help not for long anyway. I took 4 aspirin 325mg every 4 hours for the first two days and then the next two days I took them every 6 hours. Then the 5th day I was out with my husband and forgot to bring any aspirin and then I waited in dread every step I took I just knew the pain was going to come back. It didn't that day and finally about 6 days later I felt it trying to start again and so I reached for the plain aspirin again and I still have to every now and then maybe twice a month but Thank God I am finally in control of it. I cried the first day I took it because I couldn't believe that after all the treatments for 4 months and the medicines nothing really helped but less than 5 cent a pill meds took care of my problem. It was so totally amazing. I mentioned it to the doctor the next time I went. He said sure I believe it cause it used to be the number one drug of choice years ago, but it seems since it is so easy to get it isn't taken very seriously now days. Then I thought to myself well why in the world didn't you suggest that after all this time. I know that as much pain as you are in even doing this one time would be worth your time. Aspirin can cause stomache bleeds so you might want to talk to one of your doctors first, but then again after every thing else you've tried and you haven't had any bleeding issues yet it might be worth the time to at least try. I had constant pain and swelling for 7 months and within an hour of taking the aspirin the swelling was gone and the pain. So I kept it in my system the next 5 days or so, because I was scared to death that it would start all over again. You might only have to do for one day I was just too chicken to stop. Please let me know if you use the aspirin and how well it worked for you and I hope you can call all those doctors and give them a piece of you mind. Praying for a pain free life for you. Sincerely Debbyr

deborahramsey 06-04-2009 04:11 AM

Re: Undertreated, Unrespected, Unable to Function
 
Hey there, I can relate to your issue. I truly know what it is like to be in constant pain for months on end. They sent me to therapy sessions and although they tried very hard nothing seemed to work. I took flexeril and like you spent more time in bed sleeping, but at least I didn't feel the pain when I was asleep. But then again I had no life either. After I ran out of pain medicine I was scared that they would think I was just a drugie or something. Especially when they were doing 3 therapy sessions about 2 hours long each time and giving me cortizone shots and electrode therapies and here I still tried to tell them sorry I know your trying and they really were trying, but it didn't help no matter what they did and like you sometimes it just made it worse. Here is what I did. I ran out of medicines and didn't want to ask for more because nothing seemed to help not for long anyway. I took 4 aspirin 325mg every 4 hours for the first two days and then the next two days I took them every 6 hours. Then the 5th day I was out with my husband and forgot to bring any aspirin and then I waited in dread every step I took I just knew the pain was going to come back. It didn't that day and finally about 6 days later I felt it trying to start again and so I reached for the plain aspirin again and I still have to every now and then maybe twice a month but Thank God I am finally in control of it. I cried the first day I took it because I couldn't believe that after all the treatments for 4 months and the medicines nothing really helped but less than 5 cent a pill meds took care of my problem. It was so totally amazing. I mentioned it to the doctor the next time I went. He said sure I believe it cause it used to be the number one drug of choice years ago, but it seems since it is so easy to get it isn't taken very seriously now days. Then I thought to myself well why in the world didn't you suggest that after all this time. I know that as much pain as you are in even doing this one time would be worth your time. Aspirin can cause stomache bleeds so you might want to talk to one of your doctors first, but then again after every thing else you've tried and you haven't had any bleeding issues yet it might be worth the time to at least try. I had constant pain and swelling for 7 months and within an hour of taking the aspirin the swelling was gone and the pain. So I kept it in my system the next 5 days or so, because I was scared to death that it would start all over again. You might only have to do for one day I was just to chicken to stop. Please let me know if you use the aspirin and how well it worked for you and I hope you can call all those doctors and give them a piece of you mind. Praying for a pain free life for you. Sincerely Debbyr


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