The politics of pain
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One of the most common problems with FM is of course, pain management. We with FM, are often thought of and labeled as "drug seeking" simply because one major demand we make, is to get something from the medical profession, that will honestly handle the pain. We are most often denied this outright, or are given alternates that are less than satisfactory and in many cases, even dangerous.
Now, mind you, many of the alternate means might be of some help, but as anyone with a chronic pain issue can tell you, there are only so many of them you can do ... and still have what could be termed a life, or in fact, remain among the living. A few of the more common ones are:
tactics, such as hobbies,
or reading etc.
Typically seen in pain management clinics:
Common medications given:
like aspirin, ibuprofen and naproxen
Then finally ...
Now, what is dead last on this list ? The very thing that would generally be reached for first in most acute pain states, which is pain killing medications. We in chronic pain states, want them as well, for the same reason as the person who is in acute pain. We hurt just like acute states, end of facts.
The other alternatives just do not make it for most of us, with lots and lots of studies to prove it. I mean consider, if you have spent literally years, doing all of the above and much much more ... and are still in pain, wouldn't you ask for pain killers that you know stand even half a chance of doing something about it ? And we are not talking about just narcotics here either.
As for many of us, even those might not help. Those of us with FM, are known to have poor binding at the opiate sites in the brain, so that even narcotic medications are no promise of pain relief, or such relief is short lived. Many a doctor is surprised to find the FMer, who they finally gave some opioid pain killers will often be told outright ... that the narcotics are not helping either !
Nor is anyone it seems, even trying to find and or create alternatives, just for us. Every single medication used in FM on site link, was created for something else. However, we are generally not given the option, to even attempt the ones that are available to us for pain relief.
Furthermore, it also becomes, a quality of life issue, with regard to time, expense and over all health risk. All of the above pain management tatics, require major amounts of time, or money, or both and or, can be a major health risk. Consider what can easily happen, as you attempt to "manage" the pain as we are told to do.
You get up, you hurt, so you go and take a hot bath or shower, there's an hour of your day gone. You might baste your body nearly head to toe in pain balms, provided you have nowhere to go that day, as you now smell like a menthol factory.
Furthermore, since there have been no long term studies done on the effects of daily use, as none of the makers of such things, ever even thought of anyone using them daily, much less using them body wide. Knowing this, you try and space out their use, saving them for the really bad days. Not to mention, the "good" balms, tend to be expensive.
You diligently take care with how you move, walk, sit and do all the needed bio mechanics to minimize pain. You take breaks, rest, stretch, read books or other distractionary behaviors, in-between your normal daily affairs. You try and avoid chills and dress according to your pain needs. You try various herbal teas and tisanes, having to carefully match them against whatever medications you might be on.
You spend time in daily mediation and stress reduction tactics. You spend a great deal of time, in a chair with a mechanical massage unit or in the hands of a helpful spouse or care giver. You apply a heating pad or ice to the painful areas daily. Are you seeing the trend here .... ?
If you add in the most common medications. You take the NSAIDs, or other medications, the doctor gives you, which are often more toxic and dangerous, than most pain medications, and in the case of FM, the alternates are not very effective. Then, you often have to take yet more medications to counter act the side effects of the first ones. You may have an appointment with your Physical therapist, the one you see twice a week, whose visits are often not covered by your medical insurance.
You might have done Bio feed back training or Hypnotherapy, which is also seldom covered by insurance. You may spend several hours a week at the spa, doing aqua aerobics, or getting a massage. Provided there is one handy, and you can afford the spa, as yet again, most medical coverage, does not cover such costs.
You can, very easily, with all these suggested alternatives, spend your entire day, no.. lets be blunt..spend your entire life, as well as major chunk of your income, doing almost nothing but, trying to manage your pain !
Think about it. Carefully think about that for a second ... All of the above and more, is recommended to us, and we do it, we do it honestly and with vigor. And most of us, even after much time, trivial and expense are often much worse off for the detrimental effects of the medications we are given and are still in major pain.
To make matters worse, if we do all of the above, then we are told we are obsessing on the pain! Can't win for losing can we ? But, by their own hand the medical profession sets up this so called, "obsession" as we are forced to do some very extraordinary things on any given day, just to try and get through the day with the least amount of pain possible.
is it really any wonder, that we
are fed up with the alternatives and we want ... nay, we demand some real
medications, ones that work for us, so that we can have at least a few
hours of our life, that does not revolve around "managing" the pain ?
The bottom line is, we are not stupid. We know that traditional pain medications are available. We also know, from past experience, that they do tend to offer a lot more help, than all of the rest of the offered alternatives, combined. Especially since no one has come up with any medications that are FOR us ... yet. However, since we are in "chronic" pain vs acute pain, we are typically denied what IS available.
The reasons given us for this refusal ? Fear:
Fears of addiction:
Never mind the many studies that have been done that prove, that addiction to pain medications, in persons with real pain states, happens in less than 0.05% ( take note, that's half of one percent ) of people given such medications, even over long time periods.
Fears of dependence:
Meaning, needing the medications to function. It's odd that we only say this for pain medications. Do we say we are dependent on say, insulin ? No, we need it to function. Are we dependent on our high blood pressure medications? No, we need them to control our HBP. Are we dependent on our glasses ? No, we need them to see. It is only for pain medication, that we call it "dependence. "
Fears of tolerance, requiring larger doses:
Most medications, create a threshold tolerance after a period of time. The body develops an immunity to the effects and forces an increase in dosages, this is commonplace. Yet again, there is a discrepancy here. It is common practice to up the dosage on other medications, whose benefits have "extinguished" due to tolerance. Often to the point of near toxic levels. Yet, in the case of pain medications, this same effect is seen as a bad sign and increases are often denied, for fear of creating addiction.
I find it ironic that they will gladly increase almost any other medication and not think twice about it. Yet the overriding assumption is, that pain medications are somehow not subject to the same tendency towards body tolerance and should never have to be increased. It boggles the mind that anyone would think pain medications are immune from tolerance, when every other medication you can name, has this problem built into them and will likely have to be increased over time.
Fears of over dose or death:
Which are unfounded, as more deaths occur from the alternatives, than from narcotics. "approximately 16,500 people die each year from gastrointestinal bleeding associated with nonsteroidal anti-inflammatory drugs (NSAIDs) like aspirin or ibuprofen" ... VS perhaps 200 deaths in the same time period, due to (intentional) over dose of pain medications, often combined with alcohol " Article
fact of the matter is, all of these
fears are unfounded. People in pain, do not abuse pain killers,
or want them as some sort of escape from life--We use them, as we want
to do more with our lives, not less, without being
hindered by the
pain. For us, what we want is a return to a state most people consider
normal and take for granted, which is the absence of pain. We want to
be able to get on with a normal life ... I don't think it's too much to
It is not entirely a case of doctors not believing such medications are needed either:
The "war" on drugs, is just about our worst enemy. Given the problem with street drugs and the extreme fervor in the control of such things by our current day government, what happens is ... even IF our doctor is a reasonable, compassionate person and does give us real pain medications, he or she is liable to have the DEA down on their heads, for "over" prescribing controlled substance medications.
Why ? Because the DEA, which has put itself in-between a doctor and his patient, has an un-realistic and often contradictory view of such matters. They assume, arbitrarily, what is a "normal" prescription level for such medications and assume that anything over that, is in "excess." Never mind the fact that the medications are being legitimately given to someone in a chronic pain state. So the war on drugs, has become a war on doctors, and by extension, on us as well.
Meanwhile, people go under-treated, or entirely un-treated for their pain, while doctors who do attempt to treat pain with opioids, are often hounded, arrested and have their licenses to practice revoked and so on. So is it any wonder many of our doctors are reluctant to prescribe them ? In case after case, many doctors have stopped issuing such medications, to anybody ! Period ... they have simply dropped such medications from their list of treatments, no matter what it's for, even for acute pain states.
This is true even in ER faculties, or hospital settings, nursing homes, etc. to where they are not even permitted to dispense them. The DEA states, they never intended for doctors to stop issuing pain medications, but it would take a dim witted doctor indeed, not to hear of the raids done on pain control clinics and see the headlines for yet another of their colleagues who have been sent to jail, for the "crime" of treating their clients.
Knowing, that we with FM, are not alone, doesn't help our pain a bit, even if it does help a little to know that we are not being singled out. It is a tragedy that creates untold suffering and none of it called for, or excusable. There are some who know this, among the powers that be, thankfully and they are taking steps to try end this inexcusable treatment of those in pain. So write your congressman, your senator, and others and let your voice be heard.
And while your at it, put in your two cents with regard to the need for development of medications, FOR our condition.