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Old 05-15-2009, 02:51 AM   #1
Jennelle
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I have an extremely high tolerance to narcotics. My doc said he will not up my meds no matter what...I had to beg in tears about getting a rescue med. The reason for this is because 1: lots of medical problems within the last few years -gall bladder surgery, tonsil surgery, 3 back injuries, 2 neck injuries, endometriosis surgery, 2 surgeries on my stomach because I was having chronic stomach pain...and all of these I had to take narcs for. With the rsd I started out on vicodin 3 a day, then they upped it to the highest form of vicodin, then it was dilaudid, then methadone, now ms cotin, usually the morphine works well but now that I have spread to all limbs and have lower back herniated disc I am having problems. I have had to use the rescue med almost every day and he only gave me 10 days worth out of a month. Does anyone know how to decrease your med tolerance and still stay within a tolerable pain level plus not go insane? I am scared...where do I go from here. I have to wait for approval for a scs from worker's comp, and I have this pain clinic eval to do where they have already alluded to be being a drug addict. I worry that things will get worse, especially since I am just beginning with the rsd in my legs. Also, forgot to mention all the other meds like Elavil, neurotin, lyrica and such I can't take due to side effects...
Hope you are all doing well and having low pain days,
lots of positive thoughts your way,
Jennelle
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Old 05-15-2009, 03:23 AM   #2
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Jennelle,
First, it sounds to me as if you've got to just stop and take a breathe. You've got to get someone on the phone, be it your doc, or your WC adjuster, (I'd start with your doc's office), try Printing out what you just wrote. And explain it to them like that. It's OK to get emotional, you're in pain.
What's he want you to do @ the end of ten days?
Call him! (Do you have Anyone who can Advocate for you?)
Your Doc must know your condition!
(You don't mention what mg you're on, or your total meds, and, I don't know if that's the point here anyway. You Doc IS the expert.)
See if you can get the pain clinic eval moved up sooner!
Sometimes you've got to shake the tree!
I think that you're at that point!
It's OK, You're gonna make it!

Jennelle, We'd all help you if we could.
Make a few phone calls, and document them.
Do you have a lawyer?
WC will punish you w/o one sometimes.
But, start out by being honest, and don't come accross as a drug seeker, just that you're in over the top pain! Honestly!

I wish you the absolute best, other's will have better idea's than I do, but keep us posted, huh?

Take One step at a time, and you WILL move forward!
I promise!

Pete
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Old 05-15-2009, 03:51 AM   #3
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Hi Jennelle,

I'm in a similar situation to you right now. I have a very high tolerence to medications and my doctor is always having to increase them to try and make them work but by that time, I am either way too drowsey to do anything or get horrible side effects from them.

I'm not on any medications at the moment as I haven't found anything that has worked for me really. I take Ketamine when I am in a really bad pain flare (i'm only allowed to take it then as my doctor fears that it could affect my hormones because of my age) but that doesn't work as much as it used to. It still lowers my pain a little but no where near as much as it used to so I have a feeling we will have to speak to my doctor about possibly increasing it again.

It was my decision to come of the meds. My Doctor said that I could stay on them but I decided to come off them to see if they were actually helping. It took a while to come off the meds but I didn't notice any changes in my pain what so ever and didn't have to deal with some of the additional side effects. I still have LOTS of pain on a daily basis (it is usually an 8 out of 10) and it's hard not having meds but they didn't work so I didn't see the point in being on them personally!

I agree with what Pete said, I would call your doctors office and ask to speak to your doctor and tell him about how much pain you are in and that you don't have anything to help really.

If you aren't happy with your doctor, then I would try and find another. I know it is really hard and stressful (been there, got the tshirt!!!) but it will probably help you!!

Have you looked into any other treatment options that don't involve taking medications such as HBO etc?? That might be something to look into if you can seeing as the meds dont seem to help you.

I'm sorry that you are going through all of this right now and hope things start getting better for you real soon!! If you ever need/want someone to talk to, please know that I am here for you because I DO understand what you are going through!!

Please keep us updated when you can.
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Old 05-15-2009, 12:03 PM   #4
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thanks guys, I am just scared because the meds do work but my doc keeps saying they don't....so he doesn't see the point in me taking them. He told me I was going to have to come off them someday and I wasn't going to like it. I just wonder if they don't work why do so many people take them? I have tried all the other meds he has suggested and they don't work and the side effects are awful. I almost feel like he blames me for this sometimes. thanks again
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Old 05-15-2009, 01:01 PM   #5
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Hi Jenelle,

I don't really understand why your doctor is saying that you shouldn't be taking the meds even though they are helping you?!?!

Surely if the meds were working, he would be happy for you and want you to stay on them???

I know that not everyone has good results from pain meds (me included) and don't understand why some people take them when they don't do anything and cause horrible side effects but if they were working, then surely your doctor would be telling you to continue taking them as they are improving the quality of your life somewhat??

I'd definitiely ask your doctor why he is saying that you should come off the meds if they are helping you - it seems a bit strange that he would suggest that to me! I could understand if he told you to come off them if they weren't helping but if they are, surely he'd understand you wanting to stay on them!!

Everyones different with RSD. Meds work for some whilst they don't work for others. Surely your doctor should know that if he is an 'expert' in RSD!! Most people are taking medications to try and 'control' their RSD!!

I'd definitiely speak to him about his reasonings and if you aren't happy with the help and treatment you are getting, try and get another!! You shouldn't have to deal with this stress on top of everything else!!

Take care and you are in my thoughts!
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Old 05-15-2009, 08:35 PM   #6
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Jenelle you are unfortunately working with a doctor whose ego is bigger then his brain or his heart. I know that it sounds like an impossible task, and perhaps a very scary one, to find another doctor, but until you do this doctors inflated opinion of their knowledge will cause you to needlessly suffer physically and MUCH MORE IMPORTANTLY you will likely suffer emotionally as he/she discounts your pain/situation/suffering. Eventually you will find a doctor that will work with you and this is the first step to having any freedom with this condition.

Good luck and I am so sorry as I went through dozens of doctors before I found one that is worth visiting.
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Old 05-16-2009, 02:12 PM   #7
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Jennelle - I have a similar problem. Meds do not work as effectively for me as they would for someone else. I need 8 percocet per day to survive. Most people would be bed ridden with that. I atleast can have a "normal" life. I am never pain free but can do most things, i.e. grocery shop, make beds, laundry, etc. When I had my 4th child, the epidural did not work and I had to be knocked out because I felt it! For oral surgery I needed about 10 shots of novacaine plus the gas! Not everyone understands and, as you said, think you are a drug addict. My sister has MS and has the same problem with meds. We both have the same doctor and he is understanding but when you go to the pharmacy, you see the look they give you and it is very degrading. When I had recent surgery I was very lucky in the recovery room with great nurses who understood. They gave me morphine upon my request and told me to let them know when I needed it. Best of luck, Linda
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Old 05-16-2009, 09:05 PM   #8
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Has this doctor mentioned when he is going to wave his magic wand and make the source(s) of your pain go away ?

I absolutely understand how difficult it is to find the right doctor to work with you to manage your pain. I also understand that they are under some pressure. Docs who over prescribe make the news all the time....they can go to jail, lose their practices and families because of one bad patient who was a drug seeker and went out and did something foolish. I understand that that can make them cautious....but damnit, it does not give them the right to treat all of us like we are just looking to get high !

I'll be honest.....I have been having trouble incorporating this next bit of advice in my own "pain story", but I'd recommend bringing a spouse, friend, parent, whomever, to your appts with you. Have them rehearsed and ready to speak up with saying "Hey, that's only 10 days worth of breakthrough meds !", "What do you expext her to do the rest of the month ?", "With current meds, she can sit up and watch tv....she can't do housework, go out with friends, or interact much with the kids !" etc

Bring a pain log to your appointments showing your pain levels each day.with meds, ice, heat, tens, laying down, and all of the other stuff we have to do to make life bearable.

If you are feeling nervy......and have a new pain doc lined up ( ), ask this joker what the maximum dose of morphine is. The answer is, there is no limit. I've had one patient who needed 1200 mg every 8 hours to control his pain while he was still on orals. I'll be honest.......I worked in hospice, so docs were more willing to prescribe higher because there was a limit to how long the patient would be taking meds. I am not trying to make light of someone being terminal, but if they can need high doses, why would a doc who treats a patient who is going to live another 10, 20, 30 or more years with chronic pain not think their tolerance will increase over time ?

As CP'ers, I do think we need to do everything we can in the non narcotic pain management area to make sure we are doing everything we can to manage our conditions. I think, for instance, if I were to ask for an increase in narcotic but also refuse to try Neurontin because I heard it makes people gain weight or it adds to brain fog, I think the doc is justified in saying no to the increase in narcotic. If the Neurontin made me vomit frequently and the narcotic did not, I think he should increase the damn narcotic

Okay....I'm done my rant now

I hope you are able to work things out with your doc....or it is time to find a new one.

Wishing you less pain
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Old 05-17-2009, 01:39 AM   #9
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Jennelle -

Let me join the chorus on this one. You are being done wrong.

And for what it's worth, the same issue came up for me at an appointment with my pain mgt. doctor on Friday, but he handled it in a completely different way. I went in complaining that my 20 mg. Oxycontin tablets were just not enough anymore: they were lasting all of 90 minutes as opposed to the advertised 12 hours. So I asked for an increase in my prescription, which was quickly turned down on the grounds that the drug was simply not working for me anymore (I remember years ago when the same thing happened with Vicodin) and to increase the amount of the dose would be simply to invite something called Hyperalgesia or "abnormal pain sensitivity manifested as increased pain from noxious stimuli and as pain from previously non-noxious stimuli." Opioid Guidelines in the Management of Chronic Non-Cancer Pain, Andrea M. Trescot, MD, et al, Pain Physician, 2006; 9: 1-40, at 17, http://www.rsds.org/2/library/articl...sician2006.pdf

Instead, the answer according to my doctor lay in the long settled concept of "opioid rotation." See, Pharmacotherapy Principles & Practice, Marie A. Chisholm-Burns et al (McGraw-Hill Professional, 2007):
Opioid rotation is the switch from one opioid to another to achieve a better balance between analgesia and treatment-limiting adverse effects. The practice is often used when escalating doses (greater than 1 g of morphine per day) become ineffective. In some settings opioid rotation is utilized routinely to prevent the development of analgesic tolerance. [at p. 497]
See also, Opioid therapy for chronic noncancer pain: practice guidelines for initiation and maintenance of therapy, Coluzzi F., Pappagallo M., Minerva Anestesiol. 2005 Jul-Aug; 71(7-8): 425-33, at 428-29, http://www.minervamedica.it/en/freed...2Y2005N07A0425

So what my doctor suggested instead was that I switch all the way to methadone, which, in addition to being a strong relatively opioid is also an antagonist of NDMA (Nmethyl-D-aspartate) receptors, as is ketamine and Namenda (memantine), among others. [Trescot et al at p. 14.] Having said this, I understand that methadone poses unusual risks to people with cardiac arrhythmia (which I don't have) and obstructive sleep apnea, which I've got. But where the latter is well controlled with the use of a BiPAP machine (an advanced and more comfortable version of the CPAP) I am prepared to see how I react to it.

But the purpose of this post is not to extol methadone, but the virtues of opioid rotation.

Bottom line: it may not be in your best interest to ask for an increase in your prescription dose, as much it would to simply switch meds. And the list of potential choices is large, even if it winds up being something as relatively benign as Tramadol, which may be helpful to CRPS patients due to “its concomitant serotonin/norepinephrine re-uptake block.” RSDSA Complex Regional Pain Syndrome: Treatment Guidelines, Section 3 Phamacotherapy, R. Norman Harden, M.D. at p. 29, June, 2006, http://www.rsds.org/3/clinical_guidelines/index.html

Perhaps worth discussing with your doctor, or a new one.

Mike

Last edited by fmichael; 05-17-2009 at 05:18 AM. Reason: additional citation
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Old 05-18-2009, 02:12 PM   #10
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Default E-alert - FAQ on Opioids from the RSDSA

I know some of you may have already received this e-alert but for those who don't get them and in light of the very interesting conversation here I thought I would post what I received from the RSDSA the other day. It should help to dispell some myths around this subject and help us with dealing with the medical profession.
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FAQ on Opioids: Facts about Addiction, Pseudo-addiction, Physical Dependence, and Tolerance


Q: If I take opioids to help manage my pain, am I going to become addicted?
If you take your medication as prescribed by your physician, the chances are slim that you are going to become addicted. However, opioids can be very powerful and should be used exactly as directed by your physician.

Q: But if I stop taking drugs will I go through withdrawal? Isn't this a sign of addiction?
No, there is a lot of confusion about addiction, and many physical reactions to opioids have been called "addiction." If you are taking opioids your body is going to develop a physical dependence, and you would go through withdrawal if you stop taking the drug. All people who take opioids for a period of time can potentially have this withdrawal syndrome if the drug is stopped or the dose is suddenly lowered. This is not a problem as long as it is prevented by avoiding sudden reductions in the dose. Physical dependence happens with many types of medication, not just opioids.

Physical dependence is entirely different from addiction. Addiction is defined by a loss of control over a person's use of a drug, compulsive use of the drug, and continued use of the drug even if it is harming the person or others. People who become addicted often deny that they have a problem, even as they desperately try to maintain the supply of the drug.

Addiction is a "biopsychosocial" disease. This means that many people who become addicted to drugs are probably genetically predisposed for it, but only develop the problem if they have access to the drug and take it at a time and in a way that leaves them vulnerable. The risk of addiction among people with no prior history of substance abuse who are given an opioid for pain is low.

People with chronic pain should understand the difference between physical dependence and addiction. Unreasonable fears about addiction should not be the reason that doctors refuse this therapy or patients refuse to take it.

Q. My physician has increased the dose of my medication because my current dosage isn't working anymore. Is this need for stronger medication or a sign that something is wrong?
Not necessarily. Tolerance to opioids occurs, but is seldom a clinical problem. Tolerance means that taking the drug changes the body in such a way that the drug loses some of its effect over time. If the effect that is lost is a side effect, like sleepiness, tolerance is a good thing. If the effect is pain relief, tolerance is a problem. Fortunately, most patients can reach a favorable balance between pain relief and side effects then stabilize at this dose for a long period of time. If the dosage needs to be increased because pain returns, it is more commonly due to worsening of the painful disease than it is to tolerance.

Q: What is pseudo-addiction?
Pseudo-addiction is when patient behavior mirrors behavior displayed by people with drug addiction who are seeking to receive unnecessary pain relief. Patients may display medication-seeking behavior because their pain is not adequately treated. They behave as if they were addicted, when in fact it's their pain which is not adequately treated. So we call this "pseudo-addiction"-not true addiction.
Patients with pseudo-addiction might return again and again to their doctor complaining of pain, watch the clock to take their next pill the second it's due, learn a lot of medical information about opioids to try to determine better treatments, or run out of medication early because they have used more than prescribed in an effort to decrease their pain. People with addiction may display many of these same behaviors. The difference is what is driving the behavior-trying to improve pain or trying to obtain drugs to abuse.

As the behaviors can be the same, health care providers sometimes mistake true addiction for pseudo-addiction. Doctors need to carefully evaluate each patient to figure out what is the true reason for medication-seeking behavior.

In addition, many people with CRPS experience intermittent flares of pain that occur even though they are taking pain killers on a fixed schedule. The term for this is "breakthrough pain" because the pain "breaks through" the regular pain medication cycle. You should receive adequate medications for around-the-clock pain control at rest as well as medication specifically indicated for managing breakthrough cycles of pain.

If your pain is not being adequately treated, you should talk to your physician. Do not take more medication than is prescribed for you! In some cases, such as when you take methadone, taking more than is prescribed or mixing it with other drugs without talking to your physician can kill you.

Q: What should my physician do to make sure the drugs are appropriate for me?
Your physician will ask about pain relief; side effects; your ability to function physically, psychologically and socially; and if any of your behavior suggests problems in controlling your use of medication. You should always be completely honest in reporting the effects produced by the drug.

Q. What is an opioid contract? Does this mean my physician doesn't trust me?
Most physicians will want you to agree to a contract that describes your responsibilities when taking the drug. Many physicians will even want to monitor your urine to make sure that you are taking only the drugs that should be taken. These contracts may include agreements that you will never increase the dose on your own, nor go to another physician to get additional prescriptions.

Physicians are under a lot of scrutiny from regulatory agencies to make sure they are prescribing opioids appropriately and your physician needs to feel secure in the knowledge that you are appropriately using the drug. Then he or she is free to act in your best interests. A good relationship between you and your physician is needed for long term opioid therapy to be successful.

Q: Every time a celebrity goes into rehab for addiction to prescription pain pills, my family gets concerned about the medication I am taking to manage my pain. How can I help them understand?
There are several good website that can help educate them, such as www.stoppain.org. Also, you might want to bring a family member with you when you have your next appointment-perhaps the physician or nurse can answer their questions and concerns.

Also, many of the people who control the news do not understand the difference between addiction, physical dependence, and tolerance either and "addiction" sells newspapers and magazines.

Q: My family is also afraid that opioids will make me "dopey."
Although opioids can make people sleepy and cloud their thinking, this side effect is usually temporary and long-term therapy is usually associated with normal thinking. Many people fear that taking an opioid will cause them to become "a zombie," unable to function even if the pain is relieved. Fortunately, this is not the case. Most patients can take these drugs for a long period of time and be mentally normal. Patients who have been stabilized on opioid therapy and are clearheaded can drive, work, and do whatever else is necessary.

However, if you are taking opioids and your family member truly believes you are having significant negative side effects, it may be helpful to have a discussion with your doctor, you and your family member. This may improve your treatment if you are having side effects that you're not aware of, and your family member may gain information about opioids and pain treatment.

Opioids are not a cure-all. Although pain specialists now believe that many patients can benefit from this therapy, they also recognize that some patients do poorly. Some patients experience sleepiness or mental clouding that never clears, and others develop persistent nausea or severe constipation. Some patients actually do not function well when treated with these drugs. Finally, some cannot be responsible drug takers and a true addiction develops.

This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here
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