The Painful Limits of Western Medicine
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:
Here was my response:
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.
Dear XXX,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.
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
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,
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?