Show notes
Episode 17
Hello hello hello!
Welcome to episode #17 of Winning at Fibromyalgia podcast!
I just want to spend a moment expressing gratitude to those who tune in and listen – thank you. I appreciate you. My little website analytics gives me some stats on my podcast and among them is a list of countries where my listeners are. I am so humbled to see I have listeners in US, Canada, Germany, UK, Australia, New Zealand, South Africa, Quatar. It is TRULY an honor to be reaching so many parts of the world. I would LOVE, love, love to hear from you. Who are you? What brought you to my podcast? What would you love to hear about that I have not addressed yet? I would love to know
I was able to interview Dr. Howard Schubiner earlier this week. You are in for a treat. Dr. Schubiner is one of the leading researchers in the field of chronic pain but also actually runs a Mind Body program in Michigan, Ascension hospital in Southfield. The episode will drop soon. I learn from him every time I hear him talk, and I sat on 8 of his talks because I took his Pain reprocessing course.
SO How are you all doing?
In preparation for the episode with dr. Schubiner, I thought it would be an appropriate time to review some of the basic knowledge of the neuroplastic pain and what works for it. And also, to address what some of my patients have been telling me lately.
Neuroplastic pain of fibromyalgia is felt in the body, various places, all over, but is caused by the brain.
The pain is It is ALWAYS real.
People with fibromyalgia are more “sensitive” to various stimuli – touch, sounds, odors. The condition is still referred to as “central sensitization syndrome”. Meaning the volume button in the brain is turn “on” position.
The reason the button is in “ON” position can be generally ascribed to as “danger” signal. Brain produces pain as a sign of danger, it is a danger signal. Except in patients with fibromyalgia, there is no tissue damage. The alarm is fake. The signal – pain – is real, but the alarm is fake. There is no fire, there is no tissue damage, there is no structural damage (I will talk about exceptions in a moment).
The answer to improving pain is turning down or off the danger signal – and this is truly the most important answer to the pain. TURNING DOWN the danger signal. The nervous system will take care of the rest.
This may sound simple, almost silly, maybe, to some of you, but this is it. This is the secret to improving or elimination of pain.
The big question is of course “HOW DO I TURN THE DANGER SIGNAL DOWN”? I will answer with three examples and then summarize:
Example 1. 63 yo woman let’s call her Sylvia, with UCTD and new headaches for 4 months. UCTD stands for undifferentiated connective tissue disease and it means you have SOME features of autoimmune disease like lupus but they are not “full blown lupus” and they are not severe. She was extremely concerned about her headpain. It was daily, fairly widespread, and really concerning to her. I interviewed her and realized that her headache did not seem to be “organic” or related anything inflammatory, rather, it seemed neuroplastic. My main reason for identifying it as such was that Sylvia seemed to have put SO MUCH pressure on herself – to have her house clean, to do all the chores on time, to the point of having a guilty feeling just sitting down relaxing. We did somatic tracking in the office and Sylvia was able to relax enough to allow for the tension to come down during the somatic tracking, and her head pain was gone.
She saw me again two days ago. She reported that her head pain “wanted” to come back several times, and she quickly realized what was happening, that she was putting pressure on herself and getting stressed out and she gave herself permission to not be perfect.
SO in this case, the answer to HOW DO I TURN THE DANGER SIGNAL DOWN was: giving oneself permission to NOT be perfect and take time to relax.
She also told me about other wins related to this small change – her grandkids came to visit, and they are quite noisy and rumbunctious – and it went fine. Because she stayed calm and relax despite a little chaos.
Example 2: Another patient of mine, Mary, whom I mentioned in episode 14 (part one of my musings on Who are you without your pain). She has anxiety, fibromyalgia, chronic neck and back pain and headaches. We started working on her headaches and pain in December and she had almost immediate success especially with her anxiety and headaches. What somatic tracking has allowed her to do is to FEEL SAFE – and once she experienced it the first time, she knew she could experience the feeling again – because she now knows how to bring it back. So exampled two deals with feeling safe. When you genuinely feel safe, and let your brain know this lovingly, it responds. I promise it does.
Example 3: being open to the concept that neuroplasticity is responsible for their pain and that it can cause the pain.
This is the roadblock for most of my patients in my regular rheumatology practice when I talk to them about fibromyalgia.
I evaluate patients with pain to rule out any structural cause. I listen and examine them, I usually run labs and frequently also order Xrays. That often is sufficient to rule out a structural problem or inflammatory rheumatic process. And for a reminder, we do that so that we can be confident in the diagnosis of neuroplastic pain which underlies fibromyalgia. I am very thorough and sometimes I do go to greater lengths to rule out a disease process. Then I am usually satisfied. And here is what happens – I review the results with my patient, I explain there is good news because I did not find anything structural hence most likely the diagnosis is truly fibromyalgia – hence neuroplastic pain. And very often, the response is – I understand but I think there is something wrong because I cannot believe that the pain would be so severe if the brain was all causing it. My patient cannot believe there is nothing wrong structurally because of the severity of pain.
My heart aches for them. Yet the miracles won’t start happening until they believe.
So let’s break down this lack of belief a little bit. Can mistakes happen? As in – is it possible for a rheumatologist to mis-diagnose someone as having fibromyalgia when they do have something more serious such as psoriatic or rheumatoid arthritis? Of course it is possible. Is it likely? I would say not. Rheumatologists are trained to detect inflammation. We look for it everywhere on exam. We look for it in labs. We are like hound dogs. I would almost say that with us, it is almost like in that saying “if all you have is a hammer, everything looks like a nail”. We do NOT want to leave a diagnosis that has potential for joint damage undiagnosed! We WANT to find it. But if we don’t have any evidence of inflammation, or if the evidence is pointing in the direction of the fibromyalgia, we call it fibromyalgia.
I would say MOST cases of fibromyalgia are not equivocal – meaning, you have a good amount of certainty that there is nothing additional inflammatory going on.
In smaller percentage, we question ourselves and whether there is inflammation – that’s when we do more imaging. But at some point, we do draw a line when we don’t find any evidence of inflammation, even with advanced imaging. We say, let’s stop looking for non-existing inflammation and let’s start addressing your problem.
And how to gain confidence in your doctor? It is a good question and one that only you as a patient can answer. Most of us endorse a second opinion even encourage our patients to get it if what we identified is not landing home.
To summarize the 5 steps of my Winning at Fibromyalgia method:
Believe you CAN and DESERVE to heal your pain.
Be open to the concept of neuroplastic pain and that it can cause even severe pain.
Practice sending safety messages to the brain (somatic tracking).
Feel all the emotions (fierce self compassion belongs here)
Look for and listen to your intuition.
I will leave you with that summary. I would love to hear back from you or if you left a feedback or lovely 5 star review.
Till next time