Understanding and Managing Your Pain
The majority of people with postural orthostatic tachycardia syndrome (POTS) report having frequent headaches, stomach aches, chest pain, joint pain, etc., that may be associated with underlying causes or associated conditions. Approximately 50% of people with POTS also suffer from chronic nerve pain. Pain is a very personal issue, and is completely subjective. There is no test that can measure or locate the pain that you experience. This presents a treatment challenge to physicians.
Our nervous systems are built to change over time. The nervous system can learn that pain is supposed to be present from the constant use and enlargement of pain pathways as you experience pain over time. This learning process for pain involves central sensitization in the dorsal horn of the spinal cord (sensory part) and the brain. These changes may be triggered by continuous firing of pain fibers and maintained by the products of inflammation over months or years. Central sensitization increases the excitability of neurons and results in an abnormal enhancement of pain. This is a complicated process that involves many molecular players, but suffice it to say that our nervous system can learn to feel pain when no physical stimulus remains.
Many factors can contribute to over-excitement of the central nervous system and central sensitization:
There is certainly interplay between several of these factors: poor sleep, fatigue, mood, and pain. For example, increased pain can lead to decreased sleep at night which in turn leaves you more fatigued and grumpy the next day. This cycle can escalate, making you (and those around you) miserable. The good news is that even a slight improvement in one can help with the others to improve your overall well being.
Caused by damage to the peripheral nerves, small fiber neuropathy is found in a variety of medical conditions including diabetes, thyroid dysfunction, sarcoidosis, vitamin B12 deficiency, celiac disease, and POTS. The symptoms generally include a sensation of burning, shooting pain, allodynia and hyperalgesia (generally non-painful stimuli causing a pain response). This can be diagnosed through history and physical exam. If you have small fiber neuropathy, your neurological exam will likely be normal. Coordination, movement, and reflexes are unaffected by this disorder. Light touch, vibration, and proprioceptive testing will also be normal. However, you are likely to show decreased response to pinprick, decreased temperature sensation, and increased pain in that region.
Most small fiber neuropathies tend to result in loss of function in the feet first and then work their way up the leg. They can also occur in the hands and arms. The small somatic (body) and autonomic fibers are affected. They are responsible for perception of pain and temperature as well as autonomic functions. Symptoms generally increase when resting and at night.
Confirmation of small fiber neuropathy can be done using a variety of testing.
The goal of treatment is to reduce pain and improve function so that you can resume daily activities. While it is difficult to completely cure pain syndromes, they can be managed. Often a combination of medical, psychological, and self-management works best in managing pain. Because everyone is different, please consult your doctor to come up with a comprehensive plan to treat your pain.
Neuropathic pain is tough, and you are likely not to find a true cure. However, you might keep finding more things that help reduce it. If you combine enough of these treatments, it may become manageable. Every 2% reduction is a win that you can build on!