Monday, August 22, 2005

The Painful Limits of Western Medicine

There is a pain that all health care practioners at some time experience. As a physician, I can clearly relate to the frustration of taking care of patients who simply "refuse to get better". These are the patients who complain of symptoms that seem to defy our most energetic efforts to diagnose and treat.

Many or all of us will ultimately resort to concluding that he or she is suffering from depression, malingering or a classic "diagnosis of exclusion" such as chronic pelvic pain, irritable bowel syndrome, etc. Sometimes, we'll attribute their problems to other poorly characterized or understood maladies such as chronic fatigue syndrome or fibromyalgia.

Usually our initial efforts to help these patients are heartfelt and aggressive. However, we are often worn down and give up eventually, leaving our patients (and ourselves) feeling isolated, alone and self-doubting. Certainly some of these patients will leave our offices feeling in some way inadequate and lacking some basic moral strength that "healthier" people possess.

Here is a letter I received (edited for readability and anonymity) that the author gave me permission to publish. To me, it was a bit of an eye-opener in that I've never heard this type of patient's perspective articulated in such a moving, sincere and intelligent manner:

Dear Dr. Ford:

I came across your blog/website while conducting research on the web for information concerning pain management of Severe Chronic Intractable Pain (SCIP) -- headaches, specifically, in my case. Please forgive me for introducing myself this way, but your website seemed to invite inquiries from curious, frustrated, suffering, and/or help-seeking people like me.

I have been bounced from doctor to doctor over the years, and I'm going nuts (and nearly bankrupt) trying to find a physician who understands and treats patients with my specific issue(s).

I am a 42-year old female and have lived with severe and daily headache pain for more than 25 years. It began with a serious auto accident in 1979 and has progressed over the years. Unquestionably, as the pain worsened with the passage of time and the development of DDD and mild arthritis, fear within the medical profession due to government interference and legal ramifications, etc. has made it virtually impossible for me to be treated as anything other than a street junkie looking for her next fix.

I have undergone every diagnostic test under the sun, and opinions among my treating physicians re their findings have varied substantially, rendering me more confused than ever, financially challenged, and still in extreme and constant pain.

I have tried every mode of treatment that has been prescribed/recommended to date (i.e., PT/OT, hot/cold packs, massage, traction, TENS, biofeedback, acupuncture, occipital nerve blocks, epidurals, and virtually every RX imaginable, including NSAIDs, muscle relaxants, anti-depressants or other mood altering substances, opiates and other types of drugs used to mask the pain, etc.). Because there seems to be insufficient diagnostic evidence to support any other condition, I
have repeatedly been "lumped" into the category of SCIP or simply someone who cannot be helped, and unapologetically placed on the fast track to yet one more new doctor who is "better equipped to handle my situation," having to start all over each and every time.

I've been given false hope and no hope and everything in between, and it has cost me literally tens of thousands of dollars out of pocket just to hear the words, "I can't help you." I truly believe I have reached my breaking point, and I desperately need the help of a caring, compassionate, and courageous physician.

To add insult to injury, many doctors have outright labeled me a "drug-seeker," and initially I was mortified by that label. I would leave their office (after having paid a sizeable chunk of change for the visit, of course) no better off in any respect whatsoever, and instead feeling ashamed, embarrassed, humiliated, and completely helpless and hopeless.

I began seriously questioning myself, my condition, and the whole addiction possibility. As I learned more about the issues and the people who suffer along with me, I became more outraged than anything. At this point, I will readily, though certainly not proudly, that until someone can identify the cause of my headaches and provide a viable, reliable and multifactorial treatment therapy for me, I am indeed dependent upon -- NOT ADDICTED TO -- pain medication.

Recognizing that advances in medical technology, strategies and treatment options are made regularly, I am not looking for someone who will simply rely upon drug therapy alone. It is important to note that I do not advocate the imprudent use of opioids, and I fully understand and appreciate the varying opinions in this regard. Simply stated, I strongly concur with the ideal that certain patients do indeed benefit from the carefully supervised and judicious use of opioids in the treatment of chronic pain.

What I am not willing to do is to continue in my suffering while the "investigation"
continues, only to be referred out of his or her office to become someone else's "problem" patient.

Having put all of this information forward for your review and consideration, I was just wondering if you or someone to whom you refer patients deals with my specific dilemma/needs. In order to stop the out-of-control "spinning of my wheels," it is imperative that I discover a physician's approach to pain management for someone suffering headaches prior to scheduling even my first appointment with him or her.

Any input you could provide would be sincerely and greatly appreciated.

Sincerely,

XXX

Here was my response:
Dear XXX,

Believe me, I feel for you. I have met patients like you and have experienced the same frustration that I'm sure your doctors have felt at being unable to help you.

It is obvious that you are not exhibiting what we like to refer to as "drug seeking behavior". Your sincerity is quite apparent. Unfortunately, I don't have any ready answers for your dilemma. If I understand you correctly, you've seen many physicians who've presumably devoted great effort to finding a solution to your problems and have been thus far unsuccessful.

I'm sure that you've had countless lab and imaging studies and have yet to be diagnosed with a specific disease entity which we in modern "western" medicine understand. To label your problem as SCIP is to my way of thinking to have given up on finding an underlying cause and simply assigned you a "diagnosis of exclusion".

There are two possibilities here:

One, you have a medical diagnosis that simply remains to be uncovered. This seems unlikely given the vast number of practioners that you've accessed. SOMEONE should have uncovered your problem by now.

Two, your problem transcends western medicine's understanding of disease. Don't laugh. There is much that seems to be true about the human body that we simply don't understand much less have given a name to. I have studied one discipline of non-western medicine in the past (acupuncture) and this experience has led me to truly believe that there is much that is a black box as far as allopathic medicine is
concerned.

How do these observations help you? Admittedly, not much. However, they do suggest two things:

One, there is at least the possibility that with time, medical science will one day advance to a point where your disease will one day have a name, a pathophysiology and a treatment.

Two, that perhaps further exploration of nontraditional medical approaches may be fruitful.

It hurts me personally that I have nothing more to offer you than these bservations. As far as being able to refer you to a physician that is more liberal (comfortable) with simply prescribing pain medications such as narcotics, I just don't know any. I do know that they are out there and if that's a solution that you're looking for, I'm rather surprised that you haven't found such a doctor.

At any rate, I again reiterate MY frustration at not being able to help you. May I offer you the best of luck in pursuing your quest for good health?

Take care and feel free to write any time,

John
To any other such patients reading: It seems that your feelings, frustrations and suffering has been expressed in the most poignant way I've seen so far...and I've been doing this for quite a while.

To my readers in the health profession: Can't you just feel the pain? Perhaps this should provide an impetus, no matter how small, to stand by our patients? Isn't that the ultimate moral imperative of our standing as healers?

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3 Comments:

Blogger Henry Stern, LUTCF said...

.
Wow. Just. Wow.

Thank You for printing both emails, and for sharing with us your frustration -- and your hope.

I have a friend who was involved in an auto accident years ago, and he, too, continues to suffer from debilitating pain. As with your correspondent, there has been no success at stopping its progression; indeed, it gets worse with every passing year. It hurts those of us who know just to watch him, knowing that there is literally nothing we can do to help.

Welcome back.

August 22, 2005 7:23 PM  
Blogger Fred said...

Sounds to me like both should give medical marijuana a try.

August 23, 2005 6:59 AM  
Anonymous Anonymous said...

Dr. Ford,

I came across your Blog while doing research on alternative therapies for constant headaches. I am 25 years old, and have had moderately sever to severe headaches for 5 years now. I have had a constant head ache that ranks between a 3 and a 4 on the pain scale for a little over a year now. Like your other writer, I have been to god only knows how many doctors from neurologists to oral / maxiofacial doctors. I have seen neuromuscular doctors and my most recent has been to a pain management clinic.

I just feel tired. Tired of all the doctors with no answer, tired of all the different test, medications, and most of all tired of being treated like my pain is all in my head ( and no I am not figuratively speaking). I have been told that my pain is psychological because there is no physical reason for it. My pain is very real, and I am incredibly angry and hurt that no matter what doctor I go to, the initial meeting is great, full of promises of help and that they will find the cause only to be passed off to another doctor once I become their problem child.

I have been labeled as a drug-seeker, as a depressed female, as needing psychiatric help and many other things. It is obviously easier to label someone versus determining the cause of an obviously dangerous pain. I have considered many things and they are darn right I am depressed. I feel like if they had to live in constant pain in the one organ that is required for every function, they would be depressed too. My pain is not caused by depression; my depression is caused by my pain.

It is a very aggravating process, and for a long time I began to think that maybe it was just psychological. But then I began doing research and found that I am not the only one with this condition. I have found many different individuals that have the same symptoms and have also had no success. The only thing that seems to work right now (especially with no one being able to determine the cause) is narcotic pain medicine. I am now being told that this is no longer an option for me, as I cannot live my life dependant on pain pills. But unfortunately I cannot live any kind of meaningful life without them, and like your previous writer stated, it is not because I am addicted to them, it is because I need them to minimize and mask the constant and consistent pain.

I feel like I have been failed by the medical community and I feel like because of my age, I have been treated very unfairly. I feel like I am just another head case to every doctor I see and that the only reason I am there is to get drugs. And you know what they are right. I am there to get drugs. I am willing to try anything if it will help, the only problem is that the only thing that seems to help (and it doesn’t ever take them away completely) are opiate based drugs.

I am just glad to see that there is a doctor out there that does understand the reality of our pain, and even though you don’t have an answer, it is very comforting to see that you do at least care and understand, which is more than I have gotten from 90% of the physicians I have seen. So thank you for your blog, it has made an impact in at least one life.

November 30, 2007 1:19 AM  

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