A word about Specialists
When you go to a specialist, you are seeking help. You expect that their knowledge, expertise, and tools will be able to alleviate or at least treat what is hurting. At the same time, specialists tend to see you through the lens of their specialty. For most of us who live with pain, we have very complex situations to manage. Yes, we are in pain. The result of living with the pain may be fatigue, exhaustion, and/or depression. It can also have a social impact and functional impact where you can not do what you did before due to the pain. It can be difficult to navigate all the potential support and treatments to find the one(s) that will be effective for you. Finding a primary care person who can help you with this can be difficult because of the turf of the specialists. Specialists exist because there is so much to know and understand about all of these areas that no one person can hold it all. Yet you do hold it all. You live with it day to day.
Understand that the medical field first and foremost wants to make sure that the pain is not pointing to something “serious” – usually fatal. For anyone who lives with chronic pain, we know that it IS serious. But the specialists know their area well, at least most of them do. That doesn’t mean they understand or can help you with the whole territory that you are navigating–your whole life.
Allopathic specialists usually focus on a system of the body and/or a group of diseases or a kind of intervention. For instance, you might be seeing a neurologist if the issue is with nerves or you might see a rheumatologist if they suspect you may have or have already been diagnosed with arthritis such as fibromyalgia, rheumatoid arthritis, gout, or osteoarthritis. Each specialty will approach you from their lens. But you are much more than that what that lens can see. You may have surgeons who believe that they can fix what is wrong and an osteopath thinks that steroid trigger point shots will do the best for you. So how do you decide where to turn and what to do?
Patients are complex. There are so many studies, options, and theories that doctors look at and bring to their practice to give you the best care. But as someone with chronic pain, it is important to find ways to be treated, support for self-management when appropriate, and acknowledge that there will probably not be a simple answer. If there was a simple answer, you wouldn’t be reading this! You would be living your life to the fullest, pain-free.
It is important that you know that YOU hold the key to understanding the complexity of your situation. You are the only one who knows how your pain feels and how it affects you. To be able to communicate your experience in a way that your doctors and supporters can understand is crucial. In order to do this, you must be able to track your experience. The first step in doing that is to get into the habit of writing down your pain—the quality, intensity, functional interruptions, and emotions/thoughts as well as your eating, activities, and treatments done. This gives you two invaluable things. One, it gives you and your doctor something real to look at together. (It is so frustrating for everyone when it comes down to appointment time and the question, “how have you been feeling?” is asked and you can’t remember.) Two, it gives you a more objective way for you to see how different intervention really are working or not.
The journal can be simple or more elaborate depending on your style. There are resources on this website for different tools. You can use free online software, paper journals, make your own journal, or make notations on your calendar. One of the things that I found was that eating sugar really increased my deep ache in my hips and shoulders that I experienced with fibromyalgia. Not eating sugar helped my level of pain and then when I had sugar again—the pain came back. It was very helpful that I wrote it down and I was paying attention. This may not be the case for you but there is a lot of research and results coming out about nutrition, our gut, inflammation, neurotransmitters and pain.
The second step is to define and articulate your vocabulary about your pain and experience. Once you have gotten the information gathered, you need to be able to communicate it through a scale or a metaphor that your supporters and healthcare providers can understand.
So no matter what kind of specialist you work with—allopathic, eastern, alternative, therapies, or nutritionist–you are the specialist on you and your pain. It is a team effort to support your treatment, management, and ultimate thriving. Just because a specialist says one thing, does not mean that it the only way. It is the way they know. Listen to their expertise and ask yourself, “What would I do?”