18 January, 2008

AN OPEN LETTER!:



"The first thing they told us in medical school is that no one has ever died from pain, but plenty of physicians have had their careers destroyed trying to help people who are in pain."
--Comment from an emergency room physician requesting anonymity (2001) (1)

I am in pain. Incredible pain -- with an 8/10 being my baseline. It is agony that makes me think of suicide daily, as any sane person would (and, as any sane person might, not act on these thoughts).

You know that the marcaine injections provide me with some headache relief, but leave the rest of me wracked with pain. My head is almost satisfactorily, but certainly not completely, less-painful as a result of the injections...

So, on my best days, my head rates a 5/10 on the pain scale, the rest of me 8/10.

It is likely that it will take a year to two years for the marcaine injections to be given to all of my trigger points, resulting in my having pain that rates a 5/10. A five out of ten. It will be a mammoth improvement if it can be done and I will praise whoever invented marcaine from the highest mountain... But my pain will still be debilitating. Horrible. Nightmarish. I likely will still have to shun light and sound and walk with a cane. I still will be unable to enjoy life.

And doctors will call it the best they can do, pat themselves on the back for another miracle accomplished and flap their angels' wings back to heaven.

I have been given naproxen for pain and inflammation. This is a cruel and sad joke, as well as an insult I do not take lightly (esp. since anyone treating fibro should know we do not have damned inflammation of anything!).

However, if the naproxen masked my pain, it would be fine for me to take it daily for the rest of my life. Countless scripts would be written, and doctor/patient/pink elephants would be happy.
Unfortunately, my pain can only be controlled by the addition of a narcotic to the naproxen (used for this example -- I'm unsure whether there is an actual narcotic med. that contains naproxen).

Why is it fine for me to take naproxen for the rest of what would be an intolerable existence, but not fine for me to take a medication that will do what the naproxen is supposed to do?

Far too many doctors have said that, if I start taking narcotics at 29, I will develop a massive tolerance to them well before I die -- a tolerance that will make them unable to prescribe any more, and therefore leave me with no way to treat my pain. Therefore, I could suffer for decades.

This is untrue and an insult to the intelligence of anyone who hears it. Any person with Internet access can discover this for him-/herself the following: A miniscule amount of naloxone or naltrexone combined or taken with each narcotic dose prevents tolerance. Futher, Proglumide can prevent tolerance to any opioid altogether and, if tolerance already has presented, proglumide can reverse it. (1) Even more, simply switching narcotics, or taking a break from them for a short time, can be helpful.

Doctors have a range of options they are simply unwilling to excersize.

The above shows that one can take an opioid/narcotic medication indefinitely, and that it will be effective indefinitely.

My pain is going to last the rest of my life. It is, by the very definition of fibromyalgia, debilitating, lifelong and incurable.

But it can be effectively managed for the rest of my life, and only managed with narcotic medication.

Why should I be denied this medication, but allowed a laughably ineffective one?

What makes my pain, which is systemic, not worthy of treatment, while anyone with a headache can mask theirs with their choice of OTC meds?

Please explain the difference between me managing pain with a medication containing a narcotic and a person managing arthritis with Aleve. (And no, I do not experience euphoria from narcotics. Since I never have been on the proper narcotic at the proper dose, I've never felt not-pain. For years. Years.)

Specifically, riddle me why the person in this example, who has arthritis, is able/allowed to get total relief from her (I'm imagining a woman) pain, while I must suffer what feels like the worst case of arthritis in all parts of my body (fibro)?

Why can someone with arthritis get relief every day, while a fibro patient who rates 8/10 on a pain scale at his best not get similar relief? Why is the lesser pain, in effect, treated as the more important?

Why are people who experience pain that is, at worst, a 2/10 allowed to mask that pain, but a person who rates 8/10 at his best is not?

It has been said that prescribing me a narcotic medication will result in rebound pain. However, I will not experience this rebound pain as long as I take the medication. Since I will be in this pain my entire life, I never will stop taking this medication.

Which leads us to the logical conclusion that I would never experience rebound pain.
(This is the lamest, stupidest, most unfathomable reason I have been given by doctors who choose not to prescribe the only type of medication that can manage my pain.)

It is common knowledge that opiates do not adequately treat the pain experienced by a fibomyalgian. However, this is not so in my case. And I wonder if what has become common knowledge is simply a result of hundreds of pain doctors (I didn't write "pain management doctors" on purpose) using this supposed reason as an excuse, a way to avoid writing scripts for narcotics. I venture that all fibro patients would respond quite well to them, and ask to be proven wrong.

If I am wrong because the meds can never take a fibro patient's pain away completely, tell me what freaking can.

Onward: I have been on opioid-containing medication in the past, and my pain was reduced. Therefore, it is reasonable to assume that a dose of a controlled-release narcotic coupled with, hopefully, Proglumide (2) would control my pain on a daily basis and could be taken as needed. Should my pain subside -- or as it subsides due to the marcaine injections -- I will simply take, and be prescribed, less.

Also, a doctor already came to the conclusion that I should be on pain management medication, that it is my only hope to live a tolerable existence (the majority of people get to do a lot better than merely tolerable...): Dr. X. The doctor who has seen me, by far, for the longest time compared to any doctor (save my former psychiatrist) and knows me and my history with fibro better than anyone. And the doctor who kept me alive with Percocet while trying every single other medication available to him.

Given these facts, there must be justification for keeping me in pain. I ask, To what end?

Is it not morally/ethically reprehensible for me to be denied the pain relief others enjoy from Tylenol or Advil, simply because their medication needn't contain something synthesized from thebaine or the opium poppy?

Also, please be aware that the national mood toward narcotic pain relievers changed when the GW Bush (ptu!) administration took office, and John Ashcroft (my fingers are dirty from writing his name) began his holy war against narcotic medication.

The public was told OxyContin -- coincidentally and amazingly, darkly comical, the medication I believe most likely to benefit me -- was being diverted from patients and being used by the public. It was to be the next scourge: Hillbilly Heroin.

Those who follow the news should know that the public likes a good drug scare every two years or so. (3) Reporters, in this case, wrote of people who live in the Appalachian Mountains -- a minority looked down upon by most everyone else -- sucking the coating off Oxy to take the stuff straight, without the time release feature. It was called Hillbilly Heroin by magazines and newspapers willing to suck a lie's blood to sell their products.

In this manner OxyContin was demonized and its name sullied because stupid, inbred hicks who live in weird mountains and hate the rest of society take it.

Naturally, the above was almost completely a fabrication. Raise your hand if you know an Oxy abuser. And how is an infitesimal percent of Americans being Oxy abusers for a scourge? A plague in pill form indeed.

(Please see this Google search (4) for a taste of the incredible, horrendous crimes perpetrated on patients in extreme pain by Ashcroft's policies.)

Given the above, is it likely that I am being denied narcotic pain medication, at least in part, because of political and societal pressure on doctors not to treat patients by using narcotics?

Finally, my behaviors suggest those of an insatiable addict. My writing this seems especially desperate. And this is exactly how I should be acting. How would you act, how would any person with sense act, if they were in incredible pain but denied relief from that pain? How many months, years before this person would be driven mad (in every sense of the word) by the fact that effective pain relief is readily available but not prescribed to him? (2)

Justify my not being allowed effective pain management.

Does it turn me into a zombie? Then I'm on the wrong med, the wrong dose or both.
Any negative effects on how I act or am can be dealt with by a doctor skilled in managing pain instead of leaving it be (kinda like the one I'm seeing right now...). Unfortunately, it also takes a doctor who can cowboy the hell up to manage fibro pain aggressively and effectively.

Now please please please: Given all of the above, please describe in detail why my pain should not be managed through narcotic-containing medication. I especially would like an answer to why I can take a pain reliever that doesn't relieve my pain at all, and take it as much as I want, but can take none of a pain reliever that actually relieves my pain.

And I would like to know how anyone can sit by and go about their business, knowing they are next to a person who feels like he has railroad spikes nailed through his spine, who cannot depend on his legs to work, who would spend all his waking hours screaming if only, ironically, his own howls would not increase his pain, et cetera et cetera et cetera.

How is it possible for doctors, friends, family, to remain quiet -- or actively be against -- the only thing that can help a person in the kind of pain that has ruined his entire fucking life?

How is it possible?

(1) http://opioids.com/proglumide/index.html

(2) http://www.eperc.mcw.edu/fastFact/ff_69.htm

(3) http://opioids.com/oxycodone/oxycon.html

(4)http://www.google.com/search?hl=en&rls=com.microsoft%3A*%3AIE-SearchBox&rlz=1I7ADBS&q=%22pain+management%22+ashcroft

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2 comments:

LifeTrek said...

I just read this and it is longer then I intended, sorry:

Hey, just read your postings and thought I would let you know that you are not along -- I know that doesn't help much, and I hate it when people offer me worthless medical advice so I won't ever do that, you have the internet and you know your body more then I do.

I am completely disabled with CFS and currently receive SSDI.

You mentioned your attempts to get Social Security Disability in one post and you are close on the procedure but I think you missed one administrative procedure prior to an appeal hearing with an administrator. The process is: the initial decision, a reconsideration, an appeal and hearing request, an appeal to the Appeals Council, and lastly an appeal to the federal courts.

I received my benefit with the request for reconsideration (2nd step). As a financial planner I had heard stories of the process dragging out for years but I didn't even need my attorney (but he still took his 20%). I thought I must be dying if I got approved, most have to go to the hearing.

I was shocked that I didn't need further steps and I think the reason for the early success is this; since FM and CFS are quite "subjective" it is very difficult for the DI examiner to know the situation completely. For this reason I had asked friends and family to prepare statements comparing their observations of my cognitive and physical abilities before and after my condition worsened (i.e., getting lost with a friend who relied upon my memory for directions, my inability to spell). I submitted these along with my own statement that did the same, concentrating on activities of daily living (cooking, cleaning, showering, teeth, groceries), social functions, and cognitive issues. I tried to make mine more clinical but did include some feelings. These went in with my request for reconsideration.

In addition I had a two day Functional Capacity Evaluation (FCE) in California that my specialist (I'm in IL) had designed with a clinic near his office specifically to deal with CFS. Most FCE's are only one or 1/2 day and don't deal with the cumulative effects of CFS or FM.

I had to have a physical exam as well as an evaluation by a psychologist for cognitive impairment, both administered by SSA. Though I didn't know it at the time of my exam you can find the questions online. But other then knowing that you get a point if you needed a ride to the exam, knowing the questions may be worse then not knowing them. Subconsciously you might prepare your mind, for example count backwards from 100 using X -- mentally I can't help but doing it today and that practice isn't good for my future reevaluation score.

Having your "blog" might give you a written history since the cyclic nature of the illness means you may not get an exam on your worst day - though from the sound of it all of your days are all really bad now.

Anyway, I am losing my concentration and I need a nap, okay, a nap for me is 9 hours or so, but you know what I mean.

If you feel the need to talk drop me a line bfm.20.lifetrek@spamgourmet.com or stop by my blog and comment, I am there more then I check my Email even if I don't post my ramblings I use it as a link dump.

I will stop back here to check on your progress - because of my inconsistent nature I have learned not to give specific timetables.
David

DB Macklin said...

I just wanted to write that I appreciate your comments immensely. Getting SSD will be the most important thing to happen to me (hopefully) this year. And I will be sure to get statements from friends and family, and likely use my blog to show the judge my situation.

Your comment could make all the difference when it comes to me getting benefits. I can't thank you enough!

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