All of the teens at the PPRC suffer from chronic pain and/or symptoms. Because long-term use of pain medications can lead to addiction and greater pain in the long run (“hyperallegisia”), they are not the answer. So how do you deal with the pain and the symptoms? In order to answer this question, we must first understand all of the issues involved & discuss the following topics: central sensitization, the autonomic nervous system, and neuroplasticity.
Stress is a normal part of life. Our bodies are designed to react & “rise to the occasion” to meet and be prepared for stressful situations. Our autonomic nervous systems are responsible for (1) initiating the stress response to be alert & aware and (2) initiating the relaxation response that follows to rest & revitalize. The autonomic nervous system is divided into 2 parts – the sympathetic nervous system (which initiates the stress response – “fight or flight”) and the parasympathetic nervous system (which initiates the relaxation response – “rest & digest”). The body’s stress response causes muscles to tense up, pupils to dilate, increased blood pressure, increased heart rate, blood to large muscle groups (and away from smaller muscles & digestion), & a release of various stress hormones. When the sympathetic nervous system is cranked up, the parasympathetic system is down. It is like these two parts of the autonomic nervous system are on a pulley system – if one is up, then the other is down. By pushing up one, we can pull the other down.
The balance between the sympathetic & parasympathetic nervous systems gets disturbed by chronic stress. Central sensitization is a condition of the nervous system that is associated with the development and maintenance of chronic pain. When central sensitization occurs, the sympathetic nervous system goes into a chronic state of “fight or flight”. Chronic elevations of stress hormones & physiological stress reactions cause wear & tear on the body, as well as disease. Additionally, the autonomic nervous systems in patients with dysautonomia (or autonomic nervous system dysfunction) are broken & don’t respond properly … so the bodies of kids with dysautonomia are in constant states of “flight or fight” with chronically revved up sympathetic nervous systems & ineffective parasympathetic nervous systems (very little or no “rest & digest”). The parasympathetic branch that provides the relaxation may have become exhausted and unable to stop the stress response. Various self-management strategies can strengthen the function of the parasympathetic part of the autonomic nervous system and increase resilience to stress.
The PPRC gave us a good analogy for understanding the relationship between the sympathetic & parasympathetic nervous systems and our chronic pain or symptoms. Imagine your child as a fish in a fishbowl. This fishbowl has cracks in it, which are causing the bowl to lose water. These cracks represent pain, POTS, fatigue, numbness, Chronic Regional Pain Syndrome, anxiety, stress, headaches, peer drama, headaches, relationship problems, stomach pain, etc … you get the idea … anything that is causing stress on your child. While you may be able to fix some of the cracks, there will be other cracks that can’t be repaired. So, the idea is to keep the water level high enough to keep the fish alive despite continuing to lose water through some of the cracks. So, the PPRC teaches us how to “add” water to the bowl and keep the fish alive. What are some things that help add water to the bowl (or boost the parasympathetic “rest & digest” nervous system)? In no particular order:
- confidence through achieving and functioning normally
- fun / leisure activities
- socialization / peers (this is #1 importance for kids at this developmental stage!)
- deep (diaphragmatic) breathing
- daily exercise
- sleep hygiene (8.5-9.5 hours per night and routine around it)
- spirituality (not necessarily religious … anything that fills your soul)
So, in summary, the program at the PPRC doesn’t focus on getting rid of cracks, but on adding water to the bowl to keep the fish alive.
Our bodies have chemicals that intensify pain signals & chemicals that inhibit pain signals. Research suggests that with central sensitization the increase in the excitability of neurons within the central nervous system results in an abnormal enhancement of pain & general hypersensitivity. With central sensitization, these pain-signal chemicals become imbalanced, which results in a much intensified pain signal. For example, in a normal body, a finger stick at the doctor sends pain signals through the nervous system and tells the brain that it is a level 3 pain. With central sensitization, the pain signals from the finger prick get amplified on way to the brain so the brain thinks it’s a level 5 pain (when, in reality, it’s only level 3).
Aside from pain-signal amplification, sensitization may also have neuroanatomic spreading or cross sensitization. Neuroanatomic spreading is when a pain response may not follow expected pathways & new areas of pain may appear. This also explains limbic dysfunction, such as problems with mood, attention, fatigue, appetite, & sleep. Cross sensitization is when non-painful stimuli, such as stress or an emotional event, can trigger a pain or POTS response. The following is a list of Central Sensitivity Syndromes that have overlapping symptoms:
- Fibromyalgia / Myofascial Pain
- Migraines / Tension Headaches
- Interstitial Cystitis
- Chronic Pain Problems
- Fatigue / Chronic Fatigue
- Depression / PTSD / Anxiety
- Restless Leg Syndrome
- Multiple Chemical Sensitivities
- Chronic Itching
For more in depth information on central sensitization, please see following video from the Mayo Clinic Pain Rehab Center in Florida: “Dr. Sletten Discussing Central Sensitization Syndrome” – https://www.youtube.com/watch?v=8defN4iIbho (13:21 min).
Symptom-focused behaviors include anything that people say or do to communicate their symptoms. A focus on symptoms signals the brain to chemically intensify the symptoms. The amplified-pain neuropathways in the brain get stronger and stronger with repeated use. But wait!!!!! Because our brains are neuroplastic, we can rewire the brain to use new healthy neuropathways instead & abandon the old, pain neuropathways.
In our brains, neurons fire and synapse with one another and repeated signals create memory pathways. MRI studies have shown that the pain center in the brain actually lights up when one is thinking about pain vs. being distracted from it. Over time, a pain or symptom neuropathway that should be the size of a dirt bike path in the brain can become an 8-lane super highway from continued use (by focusing on the pain or the symptoms). Fortunately for us, our brains are neuroplastic and we can grow new neuropathways to rewire our brains. By NOT talking about or focusing on the pain/symptoms, we tell our brain that those pain/symptom neuropathways are not important and they shrink down (go from super highway back to bike path). By functioning normally despite pain and/or symptoms, we grow new, healthy neuropathways, which will strengthen over time into 8-lane super highways.
Please see the following videos:
- “Neuroplasticity” – https://www.youtube.com/watch?v=ELpfYCZa87g (2 min)
- “Neuroplasticity Made Simple” – https://www.youtube.com/watch?v=tJ93qXXYRpU (1:22 min)
Pain medications are NOT the answer because they (1) only dampen the pain signals, (2) DO NOTHING toward healing the source of the pain, and (3) can lead to addiction and/or hyperallegisia (greater pain in the long run). Certain blood pressure medications can stabilize POTS symptoms. For example, I am on a vasoconstrictor medication called midodrine, which has been very helpful with my POTS symptoms. (Note: sometimes certain types of antidepressants can also be helpful for pain, mood, & sleep enhancement. I am not, however, going to discuss this in my blog, as I have not needed antidepressants and we don’t have any experience with them. You should consult your doctor for more information.)
Treatment options can include: structured schedule, exercise, moderation, Cognitive Behavioral Therapy, managing stress, relaxation, sleep hygiene, balanced nutrition/hydration, & humor/positive self talk. Additionally, in order to improve chronic pain and/or symptoms, you must (1) rewire the brain by abandoning the sick/pain/symptom neuropathways (decrease symptom-focused behaviors), (2) build new, healthy neuropathways by functioning normally despite pain or symptoms, (3) do things in your life to push up your parasympathetic “rest & digest” nervous system in order to get your body out of its chronic state of “fight or flight” (diaphragmatic breathing, relaxation techniques, exercise, socialization, activities you love), & (4) take away some activities that increase the sympathetic “fight or flight” nervous system due to stress (for example, moderation with school & activity schedules).