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Last updated: Tue, Oct 29, 2024
This page is intended especially for anyone who may be new to pain. If your pain has recently appeared or worsened, you may be in a lot of distress and unsure what to do. Perhaps you've had an unsatisfactory visit with your primary care doctor, or perhaps care providers are saying rather mysterious things about you and/or your condition. This isn't unusual at all, and it is in part why I've put together this book. There are several things that you should understand once pain has become a major factor in your life.
Pain presents two different kinds of dangers. First, it is possible that your pain has been caused by a condition that will be progressively harmful if it isn't interrupted. Damage to bones or soft tissues associated with joints can cause unusual pains. Such damage can irritate, bruise, or otherwise injure both major and minor nerves in various parts of your body. This happens frequently in and around the spine. Sometimes back pain calls for an urgent response. Cancers and other tumors can also irritate nerves and other tissues, but this is more rare.
Pain can be dangerous because of its cause, but it can also be dangerous in a second way through its effects. Pain causes stress in your body and stress in your life. There is a large list of conditions that are generally considered "psychological" that are so closely linked with pain that the pain can be considered the cause of the condition. One of the most damaging of pain's secondary effects can be reduced activity, which can worsen a host of conditions including obesity and diabetes. Chronic stress often accompanies chronic pain. Pain affects your brain's systems for focusing attention, and hence can lead to what is in effect a change in personality. And pain very often causes a particular type of sleep disturbance which compounds the other effects of pain.
When you tell your physician about your pain problem, he or she will conduct a physical exam whose purpose is to gain evidence of the presence or absence of serious underlying causes such as nerve irritation, a nerve-impinging tumor, or even cracked vertebrae. If any such signs are found, you'll be referred for additional tests or perhaps to a specialist doctor. If your primary physician doesn't find such signs, you may receive no further treatment unless you press for it.
Pain can emerge from an injury or it can come apparently out of nowhere. It can be caused by a very long list of conditions, many of which can't be detected in a visit to the clinic. Several recognized pain syndromes still have no generally accepted cause. It's very common for the patient to hear feedback such as "I can't find a cause for your pain" or "I don't know what's the matter with you." These two statements from doctors are actually not badly put, because they acknowledge that the uncertainty is caused by the profession's limited ability to diagnose. Many of us hear doctor remarks that sound as if the fault may be in the patient. It's important that you don't put too much weight on that notion, except in unusual conditions.
As go the diagnoses, so also go the treatments. If your diagnosis is vague, any treatment you receive is likely to be generic. Many conditions can't be treated with much success even if they can be diagnosed. Diagnosis makes little difference if it doesn't lead to an effective treatment.
Since diagnosis is difficult and effective treatments may be lacking, general-purpose strategies are often used to treat pain conditions. Meditation, cognitive-behavioral therapies, and other psychologically-minded treatments are often used. Patients are often referred to physical therapists without a clear idea of what the PT may be able to accomplish. Exercise, diet, counseling, acupuncture, massage therapy, and others are suggested by doctors or initiated by patients. Treatment with "pain-killing" drugs has serious limitations. The results of all these treatment strategies are variable across patients and across care providers. You may have to devote a lot of energy and time in an attempt to find something that will work for you and your specific condition.
It is very common that chronic pain patients do not get a clear and confident diagnosis, and it is a natural consequence of this that multiple treatments may have to be tried in an attempt to find success that may never be achieved. It is important not to turn that failure of medical knowledge against yourself or against your care providers.
All primary care and family care physicians can perform the clinical exam that indicates whether there is a "serious" cause for your pain. That exam, however, leads to effective treatment for only a small minority of those who make an appointment because of pain. What happens next is important and depends to some extent on your taking an advocacy role for yourself. You'll have to do this, of course, while you are debilitated to some extent.
First, be sure that you understand what if any diagnosis your doctor has made. What is important is not just the name of the diagnosis, but whether the physician has identified the cause of the pain.
Second, be sure you understand what the physician has advised you to do. If he or she advises you to wait for some time and see if it goes away, ask if this carries a risk of further damage and what signs would indicate that you return to the doctor sooner. If the doctor suggests that you see a care provider from another field (PT or psychologist) ask what the potential benefit may be and why they think that it will be useful in your case.
In asking such questions you are learning more from your doctor than you otherwise might, and you're also communicating to them that you take your own condition seriously. You will learn from their answers whether they take your need to understand as seriously as you do. It's a good idea to take a second set of ears with you whenever you have a serious health condition. They will hear things that you miss.
In general I've found that MDs are not very good at diagnosing with their fingers. I've found physical therapists to be the best at this, although my massage therapist has been extremely knowledgable and helpful.
I mentioned earlier two types of danger related to pain: bodily damage that may underlie the pain and get worse if untreated, and the corrosive effects of pain regardless of its cause. Both dangers have increasing effects over time, and in addition, your body's pain system is designed in such a way that It may become more sensitive to pain, the more it experiences pain.
For these reasons I advise you to be somewhat urgent in seeking help. Get to the doctor, follow his advice if it makes sense, or find another care provider if it doesn't. You are certain to find care providers who regard your pain problem less urgently than you do. (They must, in order to do their jobs. To some extent this is good, because you wouldn't want to receive treatment from a doctor who carried the weight of all their patients' sufferings in his heart.) There are, however, some other factors at play. Your doctor knows that some pain conditions can't be treated well. In addition, pain problems tend to come and go as if on their own, and there can be a tendency to feel that treatment isn't really needed. This is where you may have to speak up about the impact your pain has on you.
Many doctors, even more psychologists, and even physical therapists and other related providers, have the belief that pain can be caused or made worse by your mind. Such pain is called "psychogenic," created by the spirit or soul. They are trained to believe in this.
There is evidence to support the idea of psychogenic pain in some of its milder forms, but there is no way to know in most cases what if any role psychogenesis plays. Put this together with the known fact that many pain conditions are difficult or impossible to diagnose clearly, and the field is set for psychogenesis to be proposed as an explanation for many pain conditions.
This theory of the case sometimes comes up explicitly and other times it is implicit or even hidden. You may be asked, for example, whether your pain is worse when you're unhappy. Or a care provider may suggest that your pain relieves you of responsibilities you don't relish. (My responses might be: "Of course I'm unhappy when I hurt a lot" and "Of course I'd rather not do things that hurt. How about you?") The question is actually much more complex than this, and I've included a detailed discussion of this important question in this book.
I can imagine individuals whose pain is largely psychogenic, but I've never known anyone who isn't motivated to live and enjoy life when they're able, so I tend to believe that psychogenic pain is rare as a major cause of pain. Yet professionals who encounter many people whom I never encounter accept psychogenesis. To my scientific mind, still, such conditions must be rare. It's hard for me to believe in a human nature inclined to attack itself.
I suggest that when you encounter psychogenic thinking in a care provider, you call it out in a non-confrontational way. For example, if your caregiver asks you whether feeling "down" precedes or follows increased pain, that you say something along the lines of "It sounds as if you're suggesting that my emotions may be driving my pain. Is this what you mean?" This lets your caregiver know that you're aware of the suggestion, and asks them to lay out their cards. If their explanation makes sense, you may benefit from listening and seeing whether the shoe fits. On the other hand, if you feel that exploring psychogenesis in your case would be unproductive, don't be shy about making that clear to your care provider. Pain treatments based on psychogenic reasoning are not well-supported by a record of success. In my opinion, they should be considered as a supplement, not a substitute, for treatments based on non-psychological theories.
If you're able to consider my discussion of psychogenic pain, I would advise you to study it before working with a care provider who seems to be keen on psychogenesis. (See especially How We Understand Pain and The Basic Problem with Behavioral Pain.) Always remember that you know yourself better than your provider does, that, unlike you, they have no way to see into your soul, and they have a limited ability to see into your body.
I'll repeat that many cases of pain are never clearly diagnosed. The reasons for this include that the body and its pain system are complex and difficult to observe. Most commonly pain sufferers are treated with generic methods ranging from pharmaceuticals to physical therapy to complementary modalities such as acupuncture, massage, meditation. It's often more realistic to imagine your future as a quest than to expect a cure. You will have to decide for yourself what efforts to make and how much energy it's worth to you.
Although we often use the phrase "pain killer" to describe analgesics such as ibuprofen, acetaminophen, and especially more-potent drugs such as opioids, they certainly don't kill the pain. Each of the drugs has its own mode of action, each of them affects different parts of the complex system that creates the pain that we feel. None of them actually stops the pain, but they are able to help you cope with the burden of your pain when used in an appropriate way. The particular pharmaceutical that will be most helpful to you depends upon the particulars of your pain, and I would say in general that doctors, nurses, and physician's assistants who are experienced in administering these drugs are good at matching drug and dosage with pain condition.
It is a mistake to believe that it's possible, in most cases, to end pain with drugs. All of these agents, even the most innocent, have serious negative effects that increase with dosage and with length of use. A good care provider will look for a balance between positive and negative effects. A good care provider will also try to rely on you to provide accurate feedback on both the benefits you receive and the costs you incur when using the medicines.
The relationship between one's pain and one's sense of well-being is very complex. I mentioned above that a range of unpleasant consequences accompany chronic pain. These range from sleep disturbance to depression to irritability to trouble concentrating and on and on. There is substantial evidence indicating that pain tends to activate your sympathetic nervous system. This is the part of your nervous system that prepares your body to fight, to flee, or to go limp. If you are chronically in pain, you are likely to be chronically tense, or, in other words, chronically under stress.
If you could will your pain away, or your doctor or psychologist could make it vanish, this chronic arousal might go away with it. But a cure may not happen, or more commonly, may be only incomplete. In the meantime it is important for you, for your social circle, and for your care providers, that you cope with this burden as best you can. (One of the observations behind the idea of pain psychogenesis is that you will suffer more to the extent that you are anxious and stress-tormented.)
This in part explains the value of deep breathing and meditation exercises for pain sufferers. Deep breathing is known to have a direct and immediate effect in reducing anxiety/stress. Meditation is not quite so simple to explain. I'm no expert on this, and I know that there is a vast amount of theory on the value of meditating in different ways under various circumstances, but I can attest from my experience that it can make a great difference. When I first came under the care of a specialist pain clinic I was suffering from severe radiculopathic pain in my left leg. If you're unfamiliar with that, imagine that your "funny bone" was continually irritated, or a raw nerve in a tooth was continually irritated. It involves the leg instead of the elbow or the tooth. My pain was constant, around the clock, for months and years.
The pain clinic had me read Jon Kabat-Zinn's Full-Catastrophe Living and practice a nightly meditation routine that included a guided body scan. In doing the scan you focus your attention on feeling each part of your body in sequence, focusing on the sensations instead of trying to ignore them. Although paradoxical, I came to find the scan relaxing. It allowed me, I believe, to reduce my fear of my symptoms, to feel them more realistically, and to gain a sense of being able to control my level of arousal.
I encourage you to get some guided-meditation tapes of this sort and to work on them. You may find a cure for your condition today, but the odds are that any coping tools you can get will be useful for a long while.
Finally, I encourage you to be aware that other people are involved in your pain situation. You're a different person with pain. Talk about it with the people you trust, and take advantage of help when it's offered.