For many, a big source of anxiety involves living with daily pain but doing so without a clear-cut diagnosis or understanding to explain why. There is a strong inherent need within us to be able to put a label on things, and when we can’t do so, this becomes unsettling. To not feel well is one thing, but to not feel well and not really know why can be exacerbating. Talk about throwing salt on the wound. It just doesn’t seem fair.
Have you found yourself in this position? It may help to know that you are by no means alone. For many of the patients I see there isn’t a real diagnosis in place to explain the pain they are experiencing. Hurting and not knowing why often leads to anxiety or frustration which only serves to intensify the pain. The fact of the matter is that there is still a lot going on with the human body that we just don’t know. Doctors don’t have all of the answers, and certainly we don’t have tests that can adequately explain everyone’s pain. When I try to be honest and tell my patients that I am not entirely clear why they are hurting the way that they are, does that make me a bad doctor?
Let’s call what we are talking about here “pain of unknown origin” or PU for short, pardon the pun. There seem to be at least three reasons why this situation wreaks such havoc.
• The first is that for doctors and patients, treatment is typically predicated on finding the right diagnosis. There is a sentiment that the condition can’t be treated appropriately or effectively until a diagnosis is made. How can the pain get better if nobody can figure out what the problem is? If we start to assume that we can’t feel better until we know the exact diagnosis, then this can lead to a long and unhappy wait for many. Therefore, the person with PU assumes that they aren’t yet getting the right treatment.
• A second problem for the person suffering with PU is one of validation, and this is unfortunate. We have a culture that wants to assume that if a person is in major pain, then there must be a test that will show that something is gravely wrong. We expect to see a large tumor invading a vital organ, a herniated disc pressing on a nerve, or something to at least look broken. But when the x-ray or MRI comes out fairly unremarkable, the person in pain feels invalidated. Others, like friends, family, or even their doctors may start to question their pain experience, suggesting that it is overblown. In other words, if nothing shows up on the tests, then how bad can it be? This puts the person in pain in the awkward position of getting second and third opinions and having more tests run to find something to justify why they feel miserable. But the reality is that there may not be a test or a diagnosis or a label that will really explain a person’s pain experience and that shouldn’t make the seriousness of how they feel any less than the person with severe x-ray findings.
• The third issue that I see commonly in our diagnosis driven system is that doctors will label a patient’s condition with a diagnosis because they feel they must. A common example of this is seen with back pain. Low back pain is ever-prevalent in our society and often difficult to pin-point, but because everybody with persistent back pain will eventually get an MRI, whatever shows up in the findings will become the de facto diagnosis. That could include labels like degenerative disc disease, a bulging disc, or spinal stenosis (narrowing around the spinal canal). But frequently, doctors truly have no way of knowing how much those anatomic findings truly matter, and in many cases, those same findings could have existed before anything started to hurt. In fact, it is estimated that for those with low back pain, that 90 percent are of unknown etiology. If we then put all of our focus on something that might only be an inconsequential finding for the sake of coming up with a diagnosis, then it is unlikely the treatments associated with that particular problem will be highly successful. Nevertheless, that type of thing happens every day, leading to unnecessary procedures and surgeries.
So, how is a person to get better when they don’t have a true diagnosis? Well, I would argue that the basic principles of success can be captured whether or not the patient knows exactly why they hurt. For example, fundamental traits of success that I see happen for patients include learning how to become more physically active again, connecting socially with others in positive ways, releasing negative thought patterns, and focusing more on learning their own tools while spending less time depending on their physicians to feel better. If you are hurting and sick and tired of not getting answers, don’t let this stand in the way of you moving on to the next steps of recovery. There is a whole world out there waiting for you.