I know. You Want Answers.

Your life is upside down. Nothing is remotely close to being okay and there is no end in sight. You feel trapped, buried with no way out.

You check your email obsessively hoping to hear back from the doctor, the lab or your therapist.

“Did the doctor respond to my email?”

“Maybe I should email my other doctor if I don’t hear back today. She might have a bright idea, something the doctors haven’t thought of yet.”

“When is my lab work going to be communicated? I feel like it has been forever!”

“I did have this one new symptom today- it really freaked me out. I think I’ll Google it to see if I can find out what is going on with me.”

I know this routine. Your calendar is filled with various types of doctor appointments as well as treatments like acupuncture, lab work, imaging, physical therapy and reminders to pick up medications. You have a pain journal which documents your pain levels throughout the day; rating intensity from 1 to 5, duration as well as if there were any different activities. You may even have a food journal where you jot down all the foods you consume in order to determine if there is a correlation between symptoms and certain foods. You have already gone onto the anti-inflammatory diet.

If you are anything like me, you want answers about the chronic pain you experience day in and day out. More specifically, you want answers about how to treat and ultimately get rid of the suffering.

You want to hear a doctor (or similar type of professional) say, “Okay, we have figured out this medical mystery. You suffer from (X) and we will prescribe (Z) to treat your condition.”

Unfortunately, this isn’t the outcome for many of us with chronic pain conditions. Pain is difficult to diagnose and treat for a wide variety of reasons. Some studies show that pain can become learned (let’s put a pin in this thought, because anything learned can be unlearned, but this is a topic for another post).

When we are in pain- it is scary, especially when there is no end in sight and no specific course of action or even diagnosis. Chronic pain is exhausting- physically, financially, emotionally and takes a toll on relationships in the home, with friends and at work.

When I was in the thick of it, during the worst of my pain, I felt like I was being punished. I felt like my body had betrayed me. I couldn’t escape the pain or the impact it was having on my life. The chronic pain had permeated all areas of my existence and there wasn’t anything I wouldn’t do to get rid of it. To break free of this bondage was my one and only wish.

I spent hours researching symptoms, possible causes, treatments, and doctors. I spent just as much time emailing my treatment team, going to appointments, and picking up medications. I had a ritual at night. I would take a bath, meditate, apply my topical medications, take my mountain of oral meds, stretch, massage, do my obligatory diaphragmatic breathing, rinse repeat. What I didn’t realize is that I was stuck in a cycle of nervous system uptick- a cycle I created that was keeping me in pain. Simply put, I was doing things that kept me hyper-vigilant and pain centric. All the research and constant tracking of symptoms actually alerted my nervous system that there was a threat.

The science behind this nervous system uptick cycle described above is complex. There is a term used to describe this type of learned pain cycle and it is called Mind Body Syndrome (MBS). I fully intend on writing more about MBS in other posts. For no, the important idea to hold onto is that when doctors say, “it is all in your head”, this might not be such a bad thing after all. More on this later. The point I am wanting to convey is that sometimes, the things we do to “help get better” are detrimental. Sometimes our focus and desperate need for a person of high credentials or in a white lab coat to validate that we are going to heal is what drives some of the pain. This works against what we are trying to achieve.

I remember going to see doctors and asking what the prognosis was; would I recover 100%? The truth is, they don’t know. But I wanted, and needed, to hear the words so that I could believe there was hope. What I did not realize was that I had a lot more control over what was happening. This comes down to mindfulness and what we can do to calm our nervous systems. **Don’t give up on me yet, I know how this sounds.

When a doctor, therapist or PT would tell me the pain was in my nervous system and I needed to incorporate mindfulness I would feel so completely unheard, offended and disappointed in the entire medical community. I felt like they were just tossing me aside because I was a “difficult case”.

When I would hear a partitioner tell me to meditate, what I heard was “you are not curable”. I internalized this as my doctors not wanting to do their job, not wanting to deal with me or even try to help.

Here is the thing, they were right, and they were not tossing me aside. They were tossing me a very important pearl of wisdom. What the doctors were saying is that “YOU have the power WITHIN to begin feeling better.” In my situation, no medication or invasive procedure was going to do the trick. The fact is for many of us; no pill or diagnosis is going to eliminate the pain- but this isn’t doom and gloom. This isn’t a reason to yell “F*@k you” at the doctor. This is empowering. What it means it that you really ARE in the driver’s seat. 5 years ago, I would NEVER have said this. I would have been extraordinarily annoyed to read these words.

It is my mission to help you heal faster and not sink to the depths that I did. One fundamental building block of my recovery was recognizing that I did not need someone else to tell me it was going to be okay. I had to let go of my eagerness to undergo any procedure that might help. I had to let go…..

What has worked best for me, better than any medication, procedure, or treatment has been to change how I talk about my symptoms to myself and others, to be compassionate, soft, and trusting of myself. Dialing back the incessant focus on my symptoms with a goal of turning down the level of my nervous system rather than trying to make the pain go away has been my saving grace. So much so, that I want to share this with anyone who is suffering. YOU can be the voice providing answers. I know the pull to want to hear it from someone else- but nobody knows better than you.

Much of the chaos of chronic pain comes from the perception of having no control, of losing trust in our bodies. Wouldn’t it feel nice to regain a little bit of say in how you feel? The good news is, it is totally possible to reduce symptoms and reconnect with yourself. You don’t need a team of doctors to tell you a prognosis. This is a nudge to look inward, to be empowered- to take back some control in a space and time when everything feels so incredibly out of control.

And if you still need to hear it (or in this case, read it). You are going to be okay- one way or another. You’ve got this. I know just how brave you are.