Pain Medication Problems...

I've had pain from my left lower abdomen to my left testicle for close too 2 years now and i take 4 norco 10/325 mg a day. which does not fully help my pain but i really do not want to be on any stronger meds (don't even want to be on the norcos). My doctors can't find out what the cause is but i am in pain 24/7, I've seen a urologist 5 times in under 2 years, and any test under the sun they can think of. My current doctor last month started to lower my dosage from 4 tablets a day to 3, which isn't that big of a deal. But this month she lowered it again to 2 tablets a day, which puts me in a great deal of pain and I have to submit a drug test before every refill. Now last year I was forced to drug test 13 times!!! all of which came up positive ONLY for the norco I'm prescribed. So i ask my doctor why she is doing this and she said that its time to get off of the medication. Which is fine by me but I want to know why I'm in constant pain and also something non-narcotic to manage that pain if cannot be fixed. I don't feel as though i deserve to be treated this way and i don't really know who or where to turn for this type of thing. I would appreciate some advice
-Thanks.

[femmy29]

Hi and welcome to the pain management community.

I am terribly sorry to hear that your doctor has abruptly decided to taper you off of the medication before understanding the cause of your pain.  Did you tell her how much your pain has increased due to the taper from 3 to 2 norcos?  If not, you need to tell her this.  Keep in mind that there is typically more pain than what is really there during the first few days of a step down in dosing of pain medications.  It can take a month and sometimes longer for the real pain to remain after the taper.  However, there is a chance that the real pain could be very close to the pain level that you have right now, which would not be good.  

If you are seeing a primary care physician (PCP) or group practicioner (GP) for management of your pain, I encourage you seek out a pain management physician (PMP).  PMPs have more leverage in certain states to prescribe pain medication long term than PCPs or GPs.  

You are on such a very low dose of pain medication...even at the dosing level of 4 norcos per day.  The drug testing your doctor is doing seems a little excessive given you have always testing positive for the drug that you are prescribed.

Please seek out a pain management physician and keep us posted on your progress towards a diagnosis.  I do hope that you get the pain relief you deserve while still undergoing testing to determine the root cause of your pain.  You shouldn't have to suffer considering how compliant you have been with your medications.  

femmy

[nixx126]

Its reddicoulos that the doc is doing that , I would suggest tramadol and or gabapentin, will at least take the edge off.

[femmy29]

Hi Jake,

I should add that you could try an anti-inflammatory such as Aleve to see if that helps with your pain.  You could also ask your doctor about Neurontin or Lyrica, which are anti-convulsants that are very effective on nerve pain.  This type of medication is non-narcotic.  If one of them works, it could be that the misfiring of nerves is at the root of your pain.  Nerve pain is very hard to treat.  Radio frequency ablation (RFA) which involves creating a lesion on the nerve endings that are causing the pain.  The nerves then die within a week and if they kill the right nerves, pain relief can last from 12-24 months.  The nerves grow back and require more RFAs.

femmy

[femmy29]

Gabapentin is the generic equivalent of Neurontin.  Lyrica has no generic equivalent.  I take Gabapentin to help with nerve pain.

femmy

[Jake_T]

Thanks everyone for the replies, i have tried neurontin and gabapentnn and also tramadol and nothing has ever helped. I think that 4 tablets a day is a reasonable amount considering that I am in as much pain as I am. I just feel as though I'm a suspect to them and I don't know why I am being treated like one. I'm trying to get a hold of Pain Management as we speak, they should give me a call back Monday (hopefully). With Kaiser everything seems to take twice as long as it should. I've been tested for nerve pain and nothing stood out to them as well as many urologist visits to no result either. I'm just concerned that it may be something serious that either there missing or haven't considered. But again I don't know where to turn for this type of thing. When I try to tell my doctor anything about my medication or my symptoms she literally ignores me. But I am afraid to switch doctors because I changed about 30 days ago because my previous doctor did the same things, but I don't want it too seem as though I'm doctor shopping or something.

[femmy29]

Oh no.  You have Kaiser.  I had Kaiser for almost 32 years (ever since birth).  My employer decided to "do away" with Kaiser this year and we were all forced to Anthem BCBS.  I was worried about how things would pan out but now i am so glad I was forced to switch.

My pain was so poorly treated at Kaiser.  They only offer morphine or methadone as extended release meds.  Everything has to be generic.  The only way brand name drugs are covered is through pre-authorization (which they rarely grant).

I never had an option to see a pain management doctor under Kaiser.  I was told that they don't exist and that the family doctors are the prescriber of all.  Gosh, my pain was so poorly controlled under Kaiser.  I have been dealing with chronic pain for 12 years and I now have meaningful relief under Anthem BCBS.

It is pretty hard (or impossible) to "doctor shop" under Kaiser as it is a closed network.  With Anthem BCBS, the network is completely open and not connected so it is easy to see another doctor behind another doctor's back.  With Kaiser, that is not so.  When I filed a compliant with Member Services, the representative told me to make appointments with other doctors and then once I find one that is for me, I can then officially make him/her my new PCP.  The prescriptions are all linked as well as the appointments you make, so your regular doctor can (and normally they do) monitor your activity through the Kaiser network.  

I highly recommend, that you consider commercial insurance next open enrollment period.  I believe you will have a better chance of getting a diagnosis as you can see a specialist within a teaching hospital and the doctors at teaching hospitals live up to higher standards than regular doctors.  They are more interested in solving mystery cases then regular docs that just want to work 9-5 to get a paycheck and go home.  

Under Anthem BCBS, I don't need a referral to see a specialist.  I can make a appointment with whatever doctor I want when I want.  Under Kaiser just to get an epidural injection, my PCP had to order the MRI, then refer me to neurosurgery and then neurosurgery had to refer me to the pain clinic...it was ridiculous!  Especially, since I got denied the referral to the pain clinic the first go round.  So much needless suffering due to their communistic practices.

I posted my gripes about Kaiser on another thread as well.  I am sorry but Kaiser offers sub optimal care to their patients.  You are really selling yourself short with Kaiser.

Lastly, norco is only just a tad bit stronger than Tramadol.  It is actually very weak in its strength.  But if 4 norcos provide you with great pain relief, there is no need to push for something stronger.  I could eat norco like candy and it still wouldn't touch my pain.

Best of luck to you.  I sure hope things pan out with Kaiser.  Just remember that commercial insurance does tend to offer better care to their members.

femmy

[Jake_T]

At the moment I don't have the option to switch insurances but as soon as it is a possibility to me I will change providers for sure. And 4 tablets a day doesn't take a great deal of pain away but enough to were I can tough it out and go about my day as best I can. I am about to the point that My pain is starting to prevent me from too much in my opinion such as, I cant hardly bend over to grab something or stretch because it puts me into so much pain. I don't want to be on anything with a higher strength but its almost to the point where I can't handle the amount of pain I'm in. I'm just so incredibly frustrated with the care I'm receiving. I just want to be in a manageable pain level to where I'm capable of doing most of the things I should be able to do. My job entails a lot of hard physical work, and with that I really am struggling every day.

[jlclarke]

I'm sorry you are having this pain. I also have been in chronic pain for over 12 yrs. Pain clinic all the way..they do know what they are doing, I have been on 75 mcg of fentanyl, lyrica, & zytram to handle the pain. Don't let it get to the point that you no longer can work (like myself) Stand your ground, I have felt frustrated like you, over & over, it starts to affect your quality of life & also your family's. Deal with it now...good luck

[Jake_T]

Thanks. How did you go about standing your ground with your doctor. I don't really know whats appropriate and what isn't on my end. And what do you mean by pain clinic, I'm not sure I understand what you mean with that.
Thanks

[femmy29]

Hi Jake,

The pain you are experiencing right now sounds absolutely unbearable!!!  AND you have a physically demanding job?!?!  Please consider making frequent appointments with your doctor to discuss your pain.  Record your pain levels throughout the day and bring them to each appointment.  Tell your doctor exactly what you have been telling us.  

When I had a hard time finding a new doctor under Kaiser that would honor my Tramadol and Valium prescriptions, I contacted member services and they called doctors for me and asked if they would consider prescribing Tramadol and Valium to a new patient.  Eventually, they called me back and told me doctor X was available that afternoon to see me for an appointment.  I booked it and he agreed to honor my prescriptions.  A few years later when the meds stopped working, it was like pulling teeth to get pain relief.  I was firing emails off and calling the nurse line, made 5 appointments in a matter of a month with him and one of the other doctors in his office.  When I finally got back to him on the 5th appointment, I slammed my pill bottles on the table and said, "Count them! I'm not abusing my meds!!". He said he knew I was not abusing them, so I said, "then why won't you help me? My pain is no longer controlled and I've researched that the best way to treat chronic pain is by prescribing an extended release med with a short acting med for breakthrough pain.  That was the breaking point...he said we have two choices, morphine or methadone.  I was at a lost for words for a moment as I was certain I was going to continue more days, months, years of suffering.   I chose morphine and I am glad I did...not because methadone is a bad drug, it is tricky and very difficult to wean off of but I have heard it works great on pain.  

Stronger is not always best.  Under Anthem BCBS, I am being given the opportunity to try essentially all the opioids out there to determine which one works the best for my pain.  I am currently on day 5 of the Fentanyl 50 mcg/hr patch with Percocet for breakthrough pain.  I like how it doesn't cloud my head but it isn't very good on pain and I am surprised by that as it is strongest pain killer on the market today.  I definitely need more breakthrough pain meds or a stronger breakthrough pain med with the Fentanyl.  I've already tried MS Contin (morphine ER), Opana ER, and of course Fentanyl.  But I haven't tried methadone, Oxycontin, or Exalgo.  I honestly prefer to take a pill as I am petrified of the Fentanyl patch leaking and then killing me.  I plan to tough it out for a month (at the very least).

Be persistent.  Physicians often forget that you are the one supplying their paycheck.  There are other fish in the sea if he/she gets their feathers ruffled.  They don't have to wake up in your body every morning and feel what you do.  An extended release med like morphine ER might be a great choice for you.  It will provide coverage of your baseline pain level.  If the doctor agrees to continue to prescribe you norco, you would use it for breakthrough pain: pain that spikes before your next dose of extended release medicine.  Morphine is not as strong as it sounds, in fact percocet is a little stronger than morphine based on pharmacology.  It is slightly stronger than the norco; however.  But it probably won't feel stronger as it is slowly released into body versus the norco is released all at once and hits the system harder.  You will most likely just notice a reduction in pain.

Glad to hear you are considering a different insurance carrier.  I hope you feel better soon.  

femmy

[Jake_T]

Thanks for all the info, I just want to feel comfortable again I have honestly forgotten what it feels like to have no pain at all at this point. I've been given Dilaudid at the ER and that really helped me a lot probably took away about 85% of my pain. And it felt great not being so miserable. I'm not stupid I can see the writing on the wall with my current Doctor she just doesn't believe I'm in pain because she doesn't know what the cause is, but like you said I am the one who has to wake up every morning is a lot of pain and really tough it out throughout my day. I am going to bring these things up to her but honestly I am not planning on staying with my current doctor for long because she told me next month she is lowering my norco dose to 10mg a DAY! Whats the point honestly my pain will be so bad by the time I take the 10mg whats the use it wont help at all. I told her on the phone that even what I'm taking this month (20mg Daily) is a drop in the bucket. It's a joke. Now my work is suffering because of my pain I can't even do my job correctly. If my next doctor is same way I don't know what Im going to do. I contacted Pain Management and they said they'll get back to me ASAP to let me know if I'll be excepted with the doctor there but if that doesn't work out I don't know what I'm going to do.

[femmy29]

Hi Jake,

Don't get discouraged yet.  Think positive even though I know it is very hard to do that given the responses you have already gotten from your current doctor.  I wouldn't worry, not until you know whether or not pain management will accept you as a patient.  When you call them to ask for status, let them know that you are having trouble carrying out your normal day to day responsiblilities and you that would appreciate it very much if they could shorten the period of determination.  

Your doctor is showing such a lack of compassion by bumping down your norco by 10 mg next month when she knows you are struggling on 20 mg a day.  It just disgusts me!  I normally wouldn't wish my pain or your pain on anyone but I would love for your doctor to experience the pain that you endure on a day to day basis for JUST an hour.  I believe that would change her approach on treating you.  It is really hard to get treatment for pain these days due to pain being subjective and the "war on prescription drugs" that is raging through the DEA office.  But if any of this people had to go about their day to day responsibilities with the pain that we endure, I think most of them would definitely change their views on pain management.  

I have forgotten what it feels like to be without pain.  I haven't thought about that in awhile but when I reflected back on my life, I saw the things I used to do for fun such as volleyball and I remember being so focused on playing on the game and there was nothing to distract me (like how pain does almost every minute of every single day).  I used to be so free and now I am chained and bounded by what my back will allow me to do on a particular day.  As for me, my diagnosis is a life long sentence of pain.  I'll never go back to pain free.  And accepting that truth is very hard for me to come to terms with.  

Dilaudid is a great medication for pain.  Hydrocodone, which is the active opioid component of norco, metabolizes into dilaudid (hydromorphone) via processing through the liver but the dilaudid produced by the liver is a trace amount.  Exalgo is dilaudid in extended release form.  One Exalgo pill lasts 24 hours versus the typical effective period of 12 hours.  Dilaudid is stronger than percocet.  If it helped you in the hospital, there is a good chance that it will help you in pill form.

Please keep us updated.  You will be in my thoughts and prayers for effective treatment of your pain.  

femmy (((hugs)))

[Jake_T]

Thanks, I Will update after I find out what pain management says. No response yet, My doctor had me go to the psychology department yesterday and I was very hesitant to go but I'm glad I did because the person I saw told me that she is going to get into contact with a GP who specializes in Chronic pain, which sounds good to me because even if pain management works doesn't work out I'll have a regular doctor who understands better what I'm going through. Also she sent me to the psychology department to see if my pain was caused by depression or something else like that and the shrink said she is 100% certain that it is not mental. I am just going to try to change doctors to a chronic pain specialist for a GP, so at worse case scenario( pain management denies my referral) hopefully my GP will be able to help make me more comfortable and improve my quality of life.
Thanks Again for all the help everyone. I'm going to write back after I hear from pain management.

[femmy29]

Hi Jake,

So glad that some progress has been made.  I think it is wonderful that you decided to keep your appointment with psychology as now you have another individual to vouch for you regarding your pain.  It can be quite difficult looking for another GP through Kaiser on your own but now that you have someone that works for Kaiser looking for you, you will find that the process moves much more seemlessly.  I am glad that your current doctor realizes that the management of chronic pain is not her forte` and that she is humble enough to send you to another physician that can better assist you with your chronic pain needs.  I hope all works out on your referral to pain management.  The more doctors you have on your team, the better pain management you will have.  

I will look forward to you updates.  

[Jake_T]

So I finally got a hold of psychology and she said basically all of the GP's that specialize in chronic pain are considered "Field Expert's" which means they can't be my GP. Also she told me that my doctor put into my file something along the line of drug seeking behavior, Which just infuriates me because I've never tested dirty on a drug screening nor have I not complied with anything they've ever asked. I have an appointment to see her to (hopefully) get it sorted out to get that off my record because I haven't done anything wrong. I am just so irritated that she said something about that without any proof or even speaking to me about it. I found out almost a month after my last visit, which is when she put it in there, from the psychologist. I filed a complaint about all of this to get it taken off my record. Does anyone know if she's in the wrong for putting that in my file with no proof and as far as I know with no reason. I know for certain I am not abusing my medication. I just can't even comprehend where she is coming from with that.

[JamesC186282]

My impression is that "drug seeking behaviour" is not exactly defined so the doctor's opinion and experience play a large part of who they "tag"

I think seeing someone for a second opinion is worth looking into but I would (me) focus on the cause of the pain and not the treatment.   That maybe all that your doctor is looking at and concluding that your have drug seeking behaviour.    Opiates are so addictive and long term use actually puts the warning light on the doctor who prescribes too many of them or for too long.

Keep pushing for a diagnosis and a solution!   good luck...

[femmy29]

James,

You are sadly misinformed.  Reputable medical research has shown that less than 1% of chronic pain patients actually become addicted to their medications (http://updates.pain-topics.org/2011/01/study-finds-low-risk-of-rx-opioid-use.html).  

Addiction is a psychological disease and genetics play a role in the risk of addiction to various drugs, things, behaviors...not just opioid medications.  Unfortunately, the DEA crackdown on doctors that operated pill mill pain management facilities is causing wide spread panic amongst the medical community and many deceitful things are being done to patients' medical records and lies about the addiction liability are being spread out to patients like the plague.  

Addiction and Dependance are two separate things.  Addiction is a psychological need for the drug, object, behavior.  Dependance is a physical need for the drug.  Caffeine, anti-depressants, hypertensives, and opioids all cause physical dependance but not necessarily addiction.

Consider researching the truth for yourself.  

femmy

[femmy29]

Hi Jake,

You need to get your medical records corrected.  I would contact member services ASAP and file a formal complaint.  What your doctor has done is unacceptable.  You are certaintly not addicted to your medications and you most certaintly have not demonstrated "drug seeking" behavior.  Examples of "drug seeking" behavior include:
- repeated loss of prescriptions and associated requests for early refills
- refusal to undergo appropriate testing and examination to determine the root cause of your symptoms
- showing up at the end of the day repeatedly to request additional medication

Your doctor is very confused about the differences between addiction, pseudoaddiction, and dependance.  You are probably exhibiting signs of pseudoaddiction but not addiction.  Pseudoaddiction is where a patient exhibits signs of "drug seeking" behavior in the form of repeated request for stronger medications and continual complaints that the pain is still not controlled.  Once the patient receives adequate pain medication such that their pain is reduced enough to where normal functioning can resume, the "drug seeking" behavioral characteristics cease.  

Similar to what JamesC said, if you can determine that what is causing your pain is fixable within minimal to moderate risks, by all means pursue the cure!  I know that you are most definitely looking for a cure from reading your posts.  None of us actually WANT to be on pain medication over the long term.  However, not all pain is curable.  The uncurable type of pain is called chronic pain and it is actually a disase where the nerves continue to send pain signals to the brain long after the trama has healed.  For many (including myself), opioid medications are required for the rest of our lives to sustain normal or near normal daily functioning.  Long term opioid therapy is no different from having to take blood pressure medications for the rest of your life to control hypertension or insulin for diabetes or anti-depressants for depression.  The issue with opioid medications over the long term is that they come with a stigma attached as it is a medication that some like to abuse.  

If you don't have addiction history in your family, rest assured that the risk of you becoming addicted is very low (<1%), especially.  

Please let us know what member services says about the defamation of your medical records.  Have the pharmacy print out all of the dates that you requested a refill of your medication and also obtain all the drug test results from your doctor as evidence that you have not and are not exhibiting "drug seeking" behavior.  What your doctor has done makes me so very angry!

femmy

[Jake_T]

I did file a grievance the day I found out what she put into my file. I also requested the information that you are talking about as part of the complaint and resolution questions they ask you. My pain is not very well controlled nor has it ever been. But I really am very very hesitant to pursue a stronger medicine because of the fact that it may be long term. I was offered from a few doctor's stronger dose of medication (Morphine/ Oxycodone) and I refused those medications. I just cannot fathom why in the world she would even put that in my file for no clear reason. And especially due to the fact of how upfront and cooperative with every doctor I have seen. In all honesty I am so very frustrated I don't know what to even say to my doctor. The bottom line is I have an appointment on the 23rd and I am going to get this straightened out one way or another, and then I am changing doctor's. In my complaint I mentioned that she has lied to my face on multiple times, for instance I clearly asked her "Do I have to do a drug test for you to release my medication" and her response was absolutely not and I left her office went downstairs to the pharmacy and waited in a hour long line to get up there and the pharmacist's said I had to do a drug test to release the medication. There has been other things that I feel she has lied to me about but not anything I knew for certain, so that was the only part I included in the complaint. Once I explained how she lied to me the woman on the phone seemed to take it much more seriously.

[femmy29]

Hi Jake,

I am very happy to hear that you filed a formal complaint and I am glad that you realized how inappropriate her actions have been towards you.  I am thinking she sent you to see a psychologist more specifically to back up her belief that you are addicted to your medications and that is just sickening.  Doctors like her shouldn't even be offering pain management as it is clear that she is not properly trained in the field of pain management.  

I have received resolutions through all of the formal complaints that I filed through Kaiser when I was a member so I am confident that all of this will get straightened out.

If you don't mind me asking, why are you hesistant to agree to taking a stronger medication?  I don't know your age but I am 31 years old and I have been taking opioids for chronic pain for about 6 years.  I have been battling chronic pain for twice as long as I have been taking opioids to control the pain.  There are many different techniques that can be deployed to ensure that you have adequate pain control for many years to come.  Once the "optimal" dose is achieved, many patients can continue on the same long-acting dosage for 4, 5 and sometimes 10 years as short acting opioids can be added or increased first before increasing the long acting opioid.

Additionally, many doctors deploy opioid rotations where they will switch you from Morphine ER to Oxycontin.  Due to incomplete cross tolerance, you can achieve adequate analgesia on an equivalent dose of Morphine through the administration of Oxycontin.  There are no ceilings on pure opioid agonists.  I have read posts across the web from chronic pain patients that are on 700 mg of morphine per day.  That is over 3 times the amount I am on via the Fentanyl patch.  Many times after (for example) switching to Oxycontin for 6 months to a year, you can go back to the Morphine at the same dose and have pain relief from the medication again.  

Many medical studies have shown that long-acting opioids slow the develop of tolerance when compared to short acting opioids.  I should mention also that the tylenol in Norco is not good for your liver.  The pharmaceutical companies still don't know what is a true safe dose of tylenol as they have once again reduced the recommended limit of tylenol that can ingested in one day from 4,000 mg to 2,600 mg.  My doctor prefers to keep the tylenol intake below 2,000 mg per day when it is being taken on a daily basis over the long term.  So, the tylenol in Norco limits how much pain relief can be safely achieved.  I believe Norco has 325 mg of tylenol in each tablets which equates to 12 pills per day as 12 pills equals 4,000 mg of tylenol which is the limit.  Just recently, my doctor took me off of percocet and put me on oxycodone IR which doesn't have any tylenol in it.  I am extremely happy about this change.

If you don't like the change to Morphine and oxycodone, you can always go back to the Norco and deal with a higher pain level if that is a better choice for you.  However, it just seems like you have been in a lot of pain and it has been hindering your ability to carry out your everyday tasks.  The Morphine/oxycodone combo could help you get back to life.  I am assuming the Morphine would be Morphine in extended release form and then oxycodone for breakthrough pain.  This is a great combo as I was on a very similar mix a year ago with the difference being that I was on percocet versus oxycodone.  

The oxycodone would not be taken on a schedule.  Instead it would be for bad spikes in pain or to take before starting an activity that causes you a lot of pain as taking a breakthrough pain med after the pain is really bad renders the medicine not as effective.  You always want to be ahead of the pain.  Having a long-acting med like the Morphine ER covering your baseline pain level will help keep your pain levels throughout the day at lower levels.  The Morphine ER would be dosed at a level equivalent to your current Norco intake with potentially the equivalent of 2-4 extra Norco pills than you are currently taking right now.  Morphine is not much stronger than the Norco.  The big difference is it will eliminate the ups and downs experienced when taking short-acting opioids throughout the day such that your pain will be controlled on a more consistent basis instead of increasing every 3 hours after taking a Norco.

There is hope that they will find the cause of your pain and be able to fix it.  In this case, you would follow the strict tapering instructions given by your physician to minimize withdrawal symptoms as you discontinue the medication.  I think the goal right now is to get your pain to an acceptable level so that you can function and pursue additional treatments and/or therapies.  I wouldn't worry too much about pain control over the long term as there are medicines out there that are much more potent that will ensure pain control down the road.  

Also, rest assured that opioids do not damage internal organs.  The side effects that they cause are manageable.  Constipation can be treated with over the counter medicines.  Low testosterone levels can be treated with hormone replacement therapy (this side effect does not always occur and it is very dependant on the dose and how long it has been taken).  

Uncontrolled pain is more damaging to the body than taking opioids over the long term.  That is why it is so important for you to get the pain under control and I believe the Morphine ER with oxycodone for breakthrough pain would accomplish this.

Please keep us posted.  And feel free to ask any questions you may have as we are here to help!

femmy  :)

[Jake_T]

Thanks for all the information, the way you put it about the morphine/oxycodone makes me feel much better about that and I think also that would improve my day to day function. As of right know I can't do the things I know I should be able to be doing. Also as you said about the day to day pain getting worse and calming back down, that to me is the hardest part because I have to just sit down and try to get it back to an acceptable level.
It's hard to manage and has been impossible with some situations. For instance when I have to lift over 150lbs. With my job I have to do that from now and again and I have the strength but it makes my flare up very bad. At this point i just want to be comfortable and try to find the solution. But it can be hard when the treatments hurt me and then the rest of the day I have to try to deal with that.

On Wednesday I have that appointment and I'm going to bring all of this up, I'm at the point where I'm done being nice and now am not take any crap from my doctor's. Mostly I want to find out what is causing it and what can be done to fix or alleviate the problem.

Thanks for all the help I'll write back after the appointment in a few days.

[femmy29]

Hi Jake,

I am glad the info I provided has helped you.  About 6 years ago, I was on only short acting opioids and life was so much harder for me.  And before that life was even tougher as I was only taking Flexeril for pain.  Every day that I made it through a full day at work was nothing short of a miracle.  Every week I made it through was celebrated!  I was heating my back with a heating pad that I had attached to my work chair for 8-9 hours each day such that I ended up with a permanent tan on my lower back.  And the worst part was that every year that went by, my pain only got worse.

I was constanly lied to by doctors.  One told me Tramadol was the strongest medication prescribable so I suffered many years on that medication thinking there was nothing else that could help me.

Finding support groups like this one online truly helped me gain the facts and knowledge I needed to fight for better pain management.  

I hope your appointment went well on Wednesday and that you are enjoying a great start to the holiday weekend!  When you have time, please post how you are doing.

femmy  :)

[Jake_T]

The appointment last Wednesday went ok I guess. Basically the doctor kept the vicodin dosage at 2 a day instead of lowering it to once daily.

After having to fight and fight with her. This Sunday that has just past (the 27th) was when my prescription was due to be refilled and I was told by doctor that a Urine Toxicology wasn't required, but when I went on Sunday the pharmacy said I had to and lab was closed. So on memorial day I went back and then the lab said the doctor hadn't put anything in so I could not do the test. I went around the hospital to the adult medicine and then the ER and also called the nurse desk to try to get a doctor to simply put it in the computer so I can go do the drug test and get my prescription and then leave but no one would do that for some reason. So now this morning I had to go to the pharmacy again and try to get them to tell my doctor to either put the paperwork in or take the hold off of the medication( at that point I just don't care & said I would take it to just save some time) And then they said it was off hold but the doctor had discontinued the medication so I couldn't pick it up. So After another two hour pharmacy visit it finally got put through and I am so furious at the moment. It's always something with Kaiser.

[femmy29]

Hi Jake,

You have got to be kidding me?!?  I can't believe that they would put on such a dog and pony show over one vicodin prescription.  If only you could see my doctor.  When I tell him I still have pain for x duration at x times during the day and it is interferring with x activity he always offers to modify my dosages of the long acting and short acting medications.  I haven't given in to the higher dosage of fentanyl that he wants me on because I am trying to determine if I can live with my current pain level as that is the goal.  I know I won't be pain free so I try to stay on the lowest dosage where functionality is retained and additionally mobility for more energetic activities is possible through breakthrough medication.  

Kaiser is making things so much harder than they should be!  I have no issues picking up my patches and oxycodone at the pharmacy.  The pharmacists are very kind and helpful.  I live in Colorado and perhaps things are a little more liberal here due to medical marijuana but California also legalized medical marijuana so it is surprising to me that Kaiser is this strict out there.  Things are on lockdown in Florida, Tennesse, and other southern states as well as Washington state right now due to a higher level of prescription drug abuse in those states.  Getting good pain management out there is like finding a needle in a hay stack.  Many pharmacies even stopped carrying opioids entirely!  Pain patients are suffering immensely in these states.  

What happened to the offer from the doctor to prescribe morphine extended release with oxycodone for breakthrough pain???  Two vicodin a day for the pain you are enduring is ridiculous especially after you told them they didn't help cover your pain throughout the day so that you can function and carry out everyday tasks.

I would definitely call member services and include this recent occurrence involving a refill of your vicodin prescription in the grievance file.  You shouldn't have to jump through all these hoops just to fill a medication!  People with hypertension may have a heart attack having to go through so much stress just to pick up their blood pressure medication.  But see the difference is people picking up blood pressure medication don't have these issues because there aren't people out there abusing blood pressure medications to get high.  We as chronic pain patients need to stop being treated this way.  You weren't there trying to fill your script earlier than allowed.  You were following all the rules and were still treated like a criminal...this should not happen!

I am so very sorry you are having to enduring this unfair treatment over and over again.  This adds stress which can elevate the pain intensity and cause additional suffering.  Patients no matter what is being treated...if the patients are truthful, respectful, responsible, and are following the rules, they should be treated with kindness and respect along with given medical support to help their condition(s).  Doctors need to treat all conditions/diseases equally.  Chronic pain is a disease that normally requires medical treatment.

Please keep us updated on this Kaiser madness that is going on.  Continue to pursue better management and know that what Kaiser is dishing out, is not how things should be handled.

femmy

[Jake_T]

I am definitely taking this issue up with a grievance. It is just so unfair that I'm being treated like a criminal for doing exactly what I am supposed to be doing. Hopefully Pain Management will not drop the ball like everyone else has, but it is kaiser so it would not surprise me one bit.

At this point I am absolutely miserable with the level of pain I'm in and after I told my doctor that she has no compassion or even cares in anyway. I dread every time I have to speak to anyone at kaiser now because I know my blood pressure is going to skyrocket and I'm going to be pissed off after I get done and I'm tired of dealing with unneeded stress.

At this point I just want a diagnosis and be treated accordingly, I would love to be off any narcotics, I do sincerely mean that. I don't want to live the rest of my life this way, but at this moment that is my only option which doesn't involve pure agony 24/7.

It just gets to be so wearing mentally dealing with waking up everyday in so much pain and being miserable and then having to deal with a very high stress level from my doctor, its just getting to be too much. I am a very strong minded person and even feeling this way shocks me, because I never thought it would get this bad.

Also about the drug seeking behavior thing in my file, I asked my doctor who put it in,when and why. She wrote me back saying that it is out of my file. I e-mailed her back and demanded the doctor who put it in (which I know was her, but she doesn't know that I already know that) and when, so hopefully she will just come clean and tell me the truth because if not I am going to pursue that until something is done to my satisfaction, because it is not right.

I will keep you updated as it progresses and hopefully it will get better and hopefully I will finally have a diagnosis.

Thanks.

[alsoinpain]

Have you tried a muscle relaxer? If not i would definitely ask to try one, i use baclofen and it helps tremendously with my pain meds.

[Jake_T]

I have not tried any muscle relaxers.

How does it effect your pain by taking them?

I will speak to my doctor about it and see what she thinks.

[femmy29]

Hi Jake,

I am so happy to hear that the note stating that you engaged in drug seeking behavior has been removed from your medical record!!!  This is excellent news!!

I have noticed that you have been helping out other members and your writings to them are wonderful and truly motivates us to keep on trying each and every day in hopes of a better tomorrow.  Just wanted to thank you for your support in our community.

Thanks for keeping us up to date with how things are going with Kaiser.  It is just awful that you have to keep enduring this type of treatment from Kaiser but I believe peseverance prevails.  I had a long spat with Kaiser before my needs were adequately met.  Try to be calm and not let them get to you.  I know that is easier said than done but you have a lot going on right now and adding more health problems like high blood pressure would not be good.  Be sure to express that to them, tell them that you are in a lot of pain and struggling each day to handle your personal responsibilities and that this additional stress regarding your medication adds unnecessary stress and pain to the stress and pain you are already experiencing.  

A good idea would also be to bring in an article discussing how patients are typically treated in pain management (i.e., an article discussing the benefits of a long acting opioid with a short acting opioid for breakthrough pain).  There are many reputable resources on the internet.  Let them know that you are also interested in an anti-depressant and muscle relaxer as you have also researched that adding adjuvant medications to the opioid regimen can provide additional pain relief which may require less of the opioid component over the long term.  I think one of the goals is to get the doctor to understand that your primary goal is a diagnosis and not opioid therapy for the rest of your life.  If you are still planning to switch insurances at the end of the year, tell them that.  They may cave in and give you some additional medication as they now know you will only be a patient for 6 more months.  This scenario played out well for me during my last year at Kaiser.

You're making great progress.  Don't give up and I'll look forward to your updates.  Take care.  :)  

I'm going to lay down soon...this cold virus is trying to kill me (figurately)...ugh!  :(

femmy

[Jake_T]

Thank you. So many people have helped me so it's only natural for me to try to pass that on.

Thanks also for the ideas that you have brought up and I will discuss them with my new doctor as soon as I change from the "doctor" I have now.

Hopefully my PCP will be more compassionate and actually try to figure out the diagnosis and the appropriate solution. But I'll just have to see how it goes.

-Jake

[Totie]

Just a thought, but could exploratory surgery be an option?

[femmy29]

Hi Jake,

I wish you the very best with your new PCP.  Think positive!  I truly hope a diagnosis comes your way along with treatment options that will get you back on your feet again.  It makes me feel very good inside knowing that you considered my advice and others' advice here helpful.  Please don't be a stranger.  Keep in touch and let us know how you are doing.  Take care.

femmy  :)

[Jake_T]

Sorry for responding after this long, been very busy.

I am willing to have exploratory surgery, I want to know whats wrong and I also do not want to be on these meds for a second longer then needed.

I'm going to speak to my new pcp about the surgery as well as other treatment options other than medication.

Thanks Again for the advice
-Jake

[Totie]

Glad to hear about you trying to see if the exploratory surgery would benefit you.

I was having pain in my pelvic area & all the mri, ct scans, gi tests revealed nothing. Even had urology tests done & they just could not figure it out.

My gyno finally suggested the surgery to make sure the tests are not missing anything. I agreed, the surgery revealed all good, however I was still in pain. My gyno finally told me to explore the issue more with another urologist because she just new it had to do with the bladder sling that was put in 3yrs earlier. I told her but they checked all that & no issues were find. She said it does not mean it could not have been missed.

Much to my reluctance I found another urologist. When he did his exams he immediately notice the problem. I had another surgery & come to find out the device was put in wrong...Needless to say it was taken out & no more pain.

I guess what I am trying to say is don't give up and try all avenues..But you must have a doctor who believes in your pain. If it was not for my gyno I would have given in & just dealt with it because I was thinking it was all in my head...She encouraged me to continue trying to find out my pain problem. I am so glad she gave me confidence to keep searching...

No pain....The exploratory surgery was good because it eliminated other issues.

Let me know how your appt. goes...

[femmy29]

Hi Jake,

I hope all goes well with your upcoming exploratory surgery.  As you have read, others like Totie have had great results from the surgery.  I really do hope that you find answers for pain relief.  If you feel up to it, please keep us updated on how things are progressing towards surgery and how your recovery is going.

As I have stated before, if you can find the solution to your problems such that you don't require long term opioid medications, then pursue that solution.  My only caution to you is be aware of all the risks of each procedure and surgical intervention.  Some procedures (for example: a spinal fusion surgery) can make you WISH they never cut you open because the pain got 10x worse than it was.  And for many when this happened, the doctors threw their hands up in the air and said there was nothing they could do.  You have to be choosy and well informed of each and every procedure/surgery.  If a surgery has a 50% success rate...you should always ask yourself, "Can I get any worse than I am now?"  If yes, then think hard before commiting to a surgery like that.  If no, then "full speed ahead" as the benefits clearly outweigh the risks if your condition cannot make you any worse than you are now.  For me, my condition can definitly be much worse and I don't need surgery hastening it along in that direction.  If my condition detoriates to the point I can no longer walk and the pain is through the ceiling even with medications...then that is when I believe I should consider a fusion.  

I plan to have endoscopic spine surgery next spring on my low back.  I am hoping that I will be able to reduce my medications significantly thereafter.

I wish you the best of luck and I am hoping they find what is causing your symptoms with the least amount of associated risk so that you can begin to enjoy life again.  Lastly, remember also that many have come out from high risk surgeries and the surgeon said that they found the problem and fixed it; however, the patient was in enormous pain afterwards that never ceased.  So it is all about striking the right balance.  Consider also exploring eating different types of foods as certain foods can aggravate certain conditions and illnesses.  

You seem to be a cautious thinker and I think that will reap a great reward!  :)

femmy

[alsoinpain]

Hi Jake,

Just wondering how your doing?

[wrench6611]

I have been in pain management for 7 years with chronic pain due to herniated disc in my neck, broken L3, the discs between L4-L5 and L5-S1 have been surgically removed. I also have spinal degenerative disease and there is no fix for my problems so medications are my only option and the only way that I can still perform my job period. My doctor has me on MSContin ER 100mg 2 X a day with 30mg Roxicodone as needed for breakthrough pain recently dropped back to 4 a day from 5. Also as a sleep assistant I was receiving 2 1mg Xanax a day which I found to be too much and asked to be dropped back to 1mg a day at bed time. That too recently was discontinued and I had to choose another drug to replace them because I was told that it had something to do with the government control of Xanax. Well, not knowing what else to switch to I elected to go to 1mg of Klonopin which does not work very well at all for me. I was also told that due to government intervention that the quantity of Roxicodone may decrease again or even need to be substituted with a different drug. Have you heard any of this to be the case or true or is something else possibly going on? My Dr drug tests all patients every time they see him and I have never had a problem with those test. I am confused and don't know what to switch to if the Roxis are dicontinued. Everything was working at least enough for me to have a functional life and knock the edge off of the extreme pain that I endure daily but now I am scared that my world is about to be turned upside down. What are your thoughts of any of this?