Why Your Pain Diagnosis May Not Help You Get Better
Many people receive a diagnosis in order to determine the appropriate treatment for their pain or many other conditions. But first of all, what is a diagnosis? If you look at the Merriam-Webster dictionary it would be this:
In the world of pain, you are trying to determine the cause/nature/disease based upon signs and symptoms. On rare occasion, a pain diagnosis can be life-threatening with what are commonly called “red flag” symptoms. These may include the inability to control your bowel or bladder or severe abdominal pain. These rare issues may be indicative of the life-threatening or life-altering issues such as severe compression of your spinal cord/nerve roots or bleeding from an aortic aneurysm (largest artery).
But let’s assume that those red flags are ruled out with no rare life-threatening condition and you still have persistent constant or persistent intermittent pain. Why would a pain diagnosis possibly be unhelpful? Here are just four of the reasons:
1. Your diagnosis may be wrong.
Each person’s pain experience is unique and each pain professional has a different perspective and set of skills to assess what led to or is causing your pain. Sometimes it is very straightforward like a splinter in a toe or sometimes it is complex like low back pain, which can have many possibilities.
When a symptom such as back pain is evaluated, sometimes a list of possibilities or a “working diagnosis” may be used temporarily to see if the pain resolves based upon the most likely cause and associated treatment. It’s kind of like treating an infection with antibiotics without knowing the exact bug or bacteria from a culture. If it works, great (but may need to replenish your gut microbes or flora!). If not, more investigation or another drug is tried next. This trial and error naturally comes from the difficulty in nailing down the exact cause of the pain initially.
Pain is complex. If you are given a diagnosis of knee pain and there is a focus on the imaging finding of an injured meniscus, then you will likely be offered surgery by a surgeon. If you have surgery and you still have the same pain or more, then you must ask the question if you were barking up the right tree. There are other reasons for knee pain that many well-trained physical therapists and other biomechanical experts can assist patients with understanding to possibly relieve their pain (e.g. weakness, laxity or ligament looseness, muscle imbalances, etc.). And the thoughtful surgeons will encourage patients to get specialized physical therapy, but not the therapists who are part of a system that tells you to do three sets of this or that in the corner without education and reassessment. Go for personalized sessions.
Part of the pain journey is deciphering which explanation makes the most sense for your pain and if the suggested approach or treatment is helping or moving in the right direction with the least risk possible. You need a dialogue with a pain professional to determine if you are on the right track.
2. Your diagnosis may only describe your symptom(s).
Many diagnoses such as low back pain, sciatica, headache, complex regional pain syndrome (CRPS), or fibromyalgia are describing a single symptom or a set of multiple symptoms. The question is again, “Why?” or “Why do I have these symptoms?” It is not uncommon for pain professionals in the traditional medical system to only treat the symptoms of a diagnosis; which does not mean that this is wrong. However, taking pain medication long-term without understanding why the pain is there in the first place is not a wise course of action.
A headache could be due to dehydration, stress, lack of sleep, a medication, withdrawal from caffeine, wearing a tight hat, muscular tension, trauma, or more serious issues such as a brain aneurysm. If you are only told you have a headache as a diagnosis, then it makes it difficult to figure out the appropriate treatment. Again, describing your symptom does not always mean you know the strategy or solution to your pain.
Fibromyalgia or CRPS are unique susceptibilities or sensitivities of the nervous system, but their detailed definitions do not necessarily tell you why the symptoms exist. Just because there is a specific name to those set of symptoms does not mean that there is a specific cure. Yet, those conditions can be improved with a combination of patient and/or pain professional efforts.
Although some conditions are difficult to understand, there should be a valid attempt to try to unveil the root cause of the symptoms. More importantly, if potentially reversible acute pain is not addressed early, then the risk of persistent or chronic pain increases.
3. Your diagnosis may only refer to failed treatments.
When diagnosed with post-laminectomy syndrome or failed back syndrome, this only tells you that the surgery you were given either did not help the pain that was being addressed in the first place or that there were complications or new pain from that surgery. In at least the former, the pain is not explained nor does it give you any direction for possible resolution.
You may need a re-evaluation from a different pain professional to decipher the more likely root cause of the pain. Then a different strategy can be considered.
4. Your diagnosis based on imaging does not tell the whole story.
Many imaging findings reflect wear-and-tear but to the non-medical person the fancy terminology that describes those abnormalities can lead to concern and belief that the findings are the source of the pain. This can be disempowering as if nothing can be done to change the circumstance.
Unless there are significant functional or movement limitations or overt concern for severe damage, most abnormal imaging findings (especially in the low back) are found in many people who have NO pain also. Many patients pursue more aggressive options merely from the perceived importance of abnormalities, especially if endorsed by that pain professional. Asking the pain professional whether it is an emergency is a good place to start. If it is not an emergency, then asking what the other options are is another good question to ask.
In summary, as satisfying as it can be to put a name to a condition, avoid the diagnosis hypnosis. You may want to dig deeper and ask the question that many patients hesitate to ask, “Why?” or “Why do I have this pain?” or “What is the root cause of my pain?”
Even if the root cause of the pain has not been found or difficult to determine based on the diagnosis you have been given, you can still do certain things with your mind and body that legitimately helps decrease the experience of pain (e.g. good sleep, proper nutrition, quit smoking, quit drinking, drink water, light exercise, decrease stress, cognitive behavioral therapy, etc.) Also, since the body is naturally self-healing, sometimes pain may self-resolve especially if the symptoms continue to get better and better. And if you are not getting better, then find a pain professional that will listen to your story and be equally vested in discovering the root cause of your pain even if that means asking for help from other pain professionals.