Sunday, February 6, 2011

A Question

This is not directly related to my topic, but I will tie it in eventually, so please bear with me.

Earlier I described some of my difficulties with finding pain medication, and the lack of results I had from non-opiate pain relievers. I often thought that the horrible side effects and lack of benefits were a quirk of my physiology, but I have recently had another thought. What it everyone, or almost everyone receives little benefit and suffers horrible side effects, but fears to tell their doctor because they worry about having their truly effective opiates cut off? After all, the only reason I stopped taking them was that I had been cut off from the opiates I needed at the same time the side effects became so severe I was becoming suicidal.1 Now I know it is possible that my side effects are unique, or maybe I suffer them with greater intensity than others, but it is also possible that fear over being cut off from opiates may skew clinical trials and subsequent reports of effectiveness.

Now, I know clinical trials are double blind studies, but if a medication has any obvious side effects, it is not that hard to tell if you have a placebo or a real medication. Not everyone may notice them, but in general it is impossible to have a truly double blind study if there are any identifiable side effects tot he medication. So, knowing that their medicine depends on pleasing the doctor, and knowing the doctor hopes for favorable results, is it not possible that patients in the study might misreport the pain relieving benefits of the drugs?

And one the drugs are in general use, I can personally attest to the pressures doctors apply. I was given several drugs which did absolutely nothing. However, my condition was variable enough that I could always report some variation in the pain. A doctor would often latch on to this and force even more ineffective medicine on me. Combined with the doctor's obvious reluctance to prescribe any opiates, the message was clear, I was expected to say the medication worked. And I did so, if only to ensure the trickle of truly effective opiates. Only once I realized how many absolutely horrible side effects some of these medicines had did I find the nerve to reject any more.2

So, why is this on my blog? Why mention my speculations about patients misreporting drug benefits?

Because it is caused by precisely the sort of laws I am discussing. Were medications freely available without prescriptions,  none of us would have to worry that a doctor would refuse to provide them, and we would not find ourselves in the position of having to lie to a doctor to prevent him from cutting off necessary pain relief.  Barring that, if the government did not treat pain doctors as if they were drug dealers, those doctors may be a little less reluctant to provide opiates which have proven effective3, and they may be a little less eager to prescribe something else simply because it is not monitored by the DEA.

Of course, perhaps I am wrong, and doctors would fear opiates just as much even without drug laws. Or maybe the fondness for psychiatric medications would cause them to push them even without the threat of the DEA, but somehow I doubt it.

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1. This is not an exaggeration. I had trouble digesting food, awaking every night choking and then vomiting up undigested food. I was so confused that requests such as "what do you want for lunch?" could reduce me to tears. And my photosensitivity meant that I could not leave the house. Thanks to the side effects of the medications they had prescribed, the neurologists were worried that I was suffering from ALS (among other possibilities), yet no one could find any clear cut diagnostic signs. At that point, fearing that my symptoms would only get worse, I finally asked why the signs of my supposed ALS started when I started taking these medications. As an earlier medicine had caused deafness that "it wasn't supposed to", I figured that other medications may have unlisted side effects and so I stopped taking them.

2. My present pain doctor is truly a wonder, as he has been open to my statements that I suffer terrible side effects and no benefits from a number of medicines. I did allow him to try two other medications, as well as a lidocaine infusion, and a lot of injections in my neck and spine, but he has been very willing to accept my honest statements regarding their effectiveness. Unfortunately, that is a rarity. Even the supposed expert diagnosticians at Johns Hopkins to whom he once referred me were more like my earlier judgmental doctor who assumed a report of ill effects indicated drug seeking.  A doctor who believes his patients is almost unknown in the field of pain management.

3. It is amusing to read medical sources on neuropathies and other nerve pains. They constantly insist that these conditions never respond to opiates and to claim that opiates are completely inappropriate, yet the treatments listed always include opiates. Either opiates work or they don't, yet the authors seem to want to have it both ways. My thought is that if opiates suppress all nerve signals, they surely should work on neuropathies as well as they work on any other condition, but lacking an MD perhaps I am unqualified. All I can say is that, though my condition is supposedly impossible to treat with opiates, opiates are the only treatment which allowed me to resume my job, raise my son and have something approaching a normal life. Then again, as this anti-opiate stance appears to be of recent provenance, at least when I consult older versions of the Merck manual it appears to indicate so,  it may be more politically driven than medical. And before any doctor says that politics would never enter into medicine, explain the removal of homosexuality form the DSM IV, or the sudden disappearance of "paraphilic rapism", not to mention all the dramatic changes in what is and is not appropriate pain management, or the battle of "complementary medicine", where the effectiveness of qi gong and acupuncture varies with congressional funding. Politics exists in medicine as much as it does in any field. (By the way, as a person who suffers from crippling pain whenever he suffers an injury, I find it horrifying that the JHU experts actually suggested acupuncture. As I lost use of both arms for almost a day after having blood drawn, does acupuncture make ANY sense?)

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POSTSCRIPT

As I have gone on a bit about my medical condition, I suppose I should come clean about the details before anyone asks.

Officially it is designated "Complex Migratory Pain Syndrome", but I have a feeling that was sort of made up by the diagnostician I saw to have something to put in the blank. It is supposedly a cousin of better known Reflex Sympathetic Dystrophy, except my condition has spread from only my legs, to my torso, arms and even face. Pain tends to originate in one limb and spread following certain rules, moving generally from left to right, and from legs to arms, so stubbing my toe can end up with piercing pains in both of my arms, or muscles spasms in my hands so severe I can't write.

Then again, a number of my symptoms don't fit at all. I suffer tremors and muscle weakness that are not symptoms. I do not seem to have the surface pain most people report, but have a lot more deep tissue pain. I have hair loss, mottling and swelling in my feet and shins, and some in my hands, but nothing like the horrible disfiguring swelling I have seen in journals. And I have a lot of sensory distortions that just don't fit. My hands and feet constantly feel as if they are covered in fine grit, and I often feel as if cold water is dripping along my arms or legs. I also get pinpoint pains, kind of like cigarette burns, that I have never heard described, and I suffer from numb patches I have never heard mentioned as part of RSD. I have difficulty regulating my body temperature, either sweating uncontrollably for prolonged periods or else failing to sweat even when my body temperature rises, neither of which I have heard as a sign of RSD.  Finally, my facial pain, which feels like a bad toothache that jumps from place to place and side to side, is something I have never heard described anywhere.

On the other hand, I do fit a lot of symptoms as well. I do have skin changes and hair loss. When they injected anesthetics into the ganglia at the base of my spine, and in my neck, my extremities did see a temperature decrease. Those are supposed to be good indicators. So I suppose it is possible I have the condition, but have a very unusual form.

Anyway, to wrap this up, for those unfamiliar with the condition, it is basically a short circuit of the sympathetic and parasympathetic nervous system in which the body begins to read nerve signals which are supposed to regulate things like the lymphatic system as pain signals (or perhaps as sensory signals, as I suffer sensory distortions other than pain). It seems to be aggravated by injury or cold, and it seems to follow certain patterns As I mentioned before, mine tends to move left to right and bottom to top. For instance, I had blood drawn from my left arm. About fifteen minutes later, it turned bright red, swelled, and felt like it had been flayed. Ten minutes later, an identical reaction began in my right arm.  Sometimes it appears strain can cause the same results, as there are days where typing triggers spams in my hand, or walking triggers them in my feet or shins. Spasms are usually followed by color changes, heating, and various sorts of pain. Sometimes burning, sometimes itching, sometimes piercing, or others. It is hard to catalog all the different kinds of sensations.

And that is a brief summary of what is wrong with me. I was having treatment for spinal stenosis in my lumbar spine in later 2005 when this started. After a third course of steroid injections into my spine had cleared up my back problems, I started to notice numbness in my feet and shins. A little later, I began to feel as if my feet were always dirty, and at night they would suddenly feel cold, followed by burning pain and muscle cramps. I thought it was related to my back, and saw another orthopedist, but then in June 2006, I suffered a major episode, losing use of my legs, control of my bladder, and generally scaring myself horribly. (That episode still hasn't been explained. None of that relates to RSD, but as it hasn't happened again, I suppose I can live without a diagnosis.)

After that the pain just got worse and worse, spreading to my arms before the end of 2006. I spent the year of 2006, and part of 2007 looking for a diagnosis. After MRIs of every bit of my body, muscle and nerve conduction tests, five spinal taps, blood tests, three neurologists, two orthopedists and a vascular specialist, I was still without a diagnosis. At various times I had feared I was going to die of ALS or MS, or worried that I had a variety of peculiar cancers, autoimmune diseases or porphyria. But each was dismissed in turn, leaving me even more worried as we had no idea what was wrong.

My pain management was a bit of a mess as well. I had voluntarily gone through withdrawal once already, when my back got better, preferring to get it finished rather than letting my doctor wean me off. But when my pain returned, I was back on oxycodone,  whose shortcoming I mentioned before. And as a result of my incredible pain, I was constantly exceeding the prescribed dose. Which led to two involuntary withdrawals as doctors cut me off. I was careful to never finish my medication early, but apparently taking the maximum prescribed dose is enough to upset a neurologist.

But I finally did receive a diagnosis, and found a competent pain doctor. But my misadventures left me with a changed perspective on the war on drugs. I had always been a proponent of legalization, but, to be honest, I always thought it was a lost cause. I thought, and still do, that it was a mistake for the libertarians to emphasize it so strongly in their platform. But, still, having seen firsthand how badly the war on drugs can harm an innocent whose only crime is a defective nervous system, I have come to think that I need to take a bit more involved stand on the issue, and put a bit more effort into seeing that the issue gets the attention it receives.

But I seem to have turned a short postscript into a second article, so I will cut myself off now. I have more than described what is wrong, and that was all I intended to do. But when you are as long winded as I am, even a brief note seems to grow into several pages of text.

Originally Posted in Examining the War on Drugs on 2008/05/31.

UPDATED 2011/02/06: In the original post I mentioned the side effects from many medications. At the time, I did not know this, but in reality those "side effects" were actually attacks triggered by my intermittent porphyria. I was only diagnosed at the end of 2010, so for a long time I thought the medications were to blame, but since I was diagnosed I discovered trileptal and clondine (which had been used -- with other drugs -- to try to control my pain, nerve damage and spasms) are both likely to cause attacks in those with porphyria. (I refer to it as intermittent porphyria, as the diagnostic tests were still inconclusive as to he exact type, but positive for some form of porphyria. At least, the later tests, my first set of tests were inconclusive altogether.) However, I still stand by my thesis above, as there were other drugs which do not trigger porphyria and yet had bad side effects and/or no benefits, and yet I still seem them touted as miracle cures for neuropathy.

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