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:
- Autonomic nervous system dysfunction
- Environmental chemicals
- Environmental noise
- Genetic predisposition
- Neonatal or childhood trauma
- Physical trauma
- Poor sleep
- Psychological factors (anxiety, depression, stress)
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.
Small Fiber Neuropathy
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.
- Quantitative sudomotor axon reflex test (QSART): many with POTS have this with the tilt table test when diagnosed. In 74% of people with small fiber neuropathy, the QSART was abnormal.
- Skin biopsy: requires a 3 mm punch from an area where you have neuropathy. The number of fibers present are counted and compared with set standards.
Managing Your Chronic Pain
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.
Medical interventions for chronic pain
- Acupuncture: Scientifically shown to decrease some types of pain.
- Anticonvulsants: Lyrica, Neurontin, Tegretol. Helpful for neuropathic pain.
- Antidepressants: Cymbalta, Elavil. Serotonin and norepinephrine reuptake inhibitor that is FDA approved for treating neuropathy, fibromyalgia, and musculoskeletal pain. While we call them antidepressants, the same neurotransmitters affected also reduce pain and enhance sleep.
- Low dose naltrexone: Blocks opioid receptors in the brain, and is thought to decrease inflammatory signals sent by glial cell activation.
- Massage therapy
- Nerve blocks: Must be able to identify nerve causing pain in specific organ or body region. Nerve is injected with local anesthetic to quiet it. Typically better for acute, not chronic, pain.
- Pain pacemakers: Implanted into the body, these stimulate the spinal cord to block pain signals from reaching the brain. You can toggle the pacemaker on/off and adjust signal intensity after implanted. Used as last resort when other treatments have failed.
- Skin patches: Lidoderm, Lidocain. Prescription transdermal patches for chronic nerve pain.
- Spinal drug (intrathecal) pumps: Delivers pain medication directly to spinal cord with the push of a button. Uses much lower dose of medication than oral route, so fewer side effects.
- Transcutaneous electrical nerve stimulation (TENS): Delivers low-level electrical current to block pain. Short-term pain relief.
- Behavior modification: Counseling can help to deal with the negative emotions related to chronic pain, depression, anxiety, and anger. Negative emotions reduce natural painkillers and increase your sensitivity to pain.
- Biofeedback: Trains your mind to control muscle tension, heart rate, and breathing. Reduces anxiety and stress. Useful for headaches and other chronic pain.
- Meditation: Uses deep breathing and/or guided imagery to reduce stress and promote relaxation as part of your process to decrease pain.
Self management of chronic pain
- Balanced nutrition: A good diet with plenty of fruits and vegetables can reduce inflammation and provide the nutrients needed by your brain and nerves to function properly.
- Good humor: Laughter can release natural pain-killing endorphins. Try laughter yoga online, or laugh with your friends and family.
- Good sleep hygiene: Going to bed and waking at the same time each day can significantly improve sleep. Minimize electronics and light sources in the bedroom to help you stay asleep.
- Meaningful free time activities: Try a new hobby, take an online course, support someone else, etc.
- Positive outlook: You will feel better emotionally if you can find the bright side in any situation.
- Regular exercise
- Decreased pain from release of endorphins
- Decreased pain from activation of chemicals that block pain signals from reaching your brain
- Decreased symptoms of fatigue
- Increased muscle tone, strength and flexibility
- Increased number of blood vessels in active muscles
- Increased blood volume and total hemoglobin
- Improved blood flow
- Improved digestion
- Improved motility of digestive system
- Improved feeling of well being
- Relaxation: Use meditation, yoga, or time with friends to relax your mind and body.
- Stay ahead of the pain: Use pain reduction techniques before your pain becomes intolerable.
- Strategic distraction: playing a video game, listening to music, or watching a favorite show can distract your brain from the pain.
- Alpha lipoic acid can reduce inflammation
- Vitamin B12 can promote nerve health
- Vitamin D can reduce inflammation, pain and depression
- Use of cold packs, heating pads, and body pillows to decrease pain and get more comfortable.
- Non-steroidal anti-inflammatory drugs: ibuprofen, naproxen. Relieves pain and inflammation.
- Pain relief creams: Aspercreme, Bengay. Decreases inflammation and relieves 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!
- Resource Guide to Chronic Pain Medications & Treatment
- Pain: Considering Complementary Approaches: eBook
- Fifteen Mental Tricks that Fight Pain
- Webinar by Dr. Chopra on POTS, EDS and Pain
- Low Dose Natrexone and Chronic Pain
- For Grace is a nonprofit organization dedicated to helping women with chronic pain.
- Considering the Emergency Room? Here Are Some Pointers to Keep in Mind if You Have Chronic Pain
- Suffer the Little Children: Treating Chronic Pain in Kids
- Pain Clinics and programs for pain management