Chronic Pain with hypermobile Ehlers-Danlos syndrome (hEDS)
In chronic pain associated with hypermobile Ehlers-Danlos syndrome (hEDS), several changes occur in the brain and pain pathways. These changes reflect the complex nature of chronic pain and involve both peripheral and central mechanisms:
Central Sensitization: This is a condition where the central nervous system (CNS) becomes hyper-responsive to pain signals. In hEDS, ongoing pain stimuli from joint instability and tissue damage can lead to an increased sensitivity of neurons in the spinal cord and brain, amplifying pain perception.
Altered Pain Pathways: Chronic pain can cause structural and functional changes in the brain’s pain pathways. Areas such as the thalamus, somatosensory cortex, anterior cingulate cortex, and insula may show increased activity, indicating heightened pain perception. Additionally, the connectivity between these regions may be altered, contributing to persistent pain.
Neuroplastic Changes: Chronic pain can lead to changes in brain structure, including a reduction in the volume of gray matter in regions involved in pain processing and modulation. These changes reflect the brain’s adaptation to prolonged pain but can also exacerbate pain perception and reduce pain inhibition.
Dysregulation of Pain Modulation Systems: The brain has endogenous pain modulation systems that can amplify or dampen pain signals. In chronic pain conditions, including hEDS, these systems may become dysregulated. For example, the descending pain inhibitory pathways, which normally help to suppress pain, may become less effective.
Neuroinflammation: Chronic pain is often associated with neuroinflammation, where glial cells (such as microglia and astrocytes) in the CNS become activated. This activation can contribute to the persistence of pain by releasing pro-inflammatory cytokines that sensitize neurons.
Emotional and Cognitive Factors: Chronic pain can affect emotional and cognitive functions, leading to changes in brain areas involved in mood regulation, such as the prefrontal cortex and limbic system. This can result in increased anxiety, depression, and cognitive impairments, which in turn can further exacerbate pain perception and coping ability.
Impaired Pain Inhibition: In people with chronic pain, the ability of the brain to inhibit pain may be diminished. This means that the mechanisms that normally act to “turn down” pain signals are less effective, leading to a heightened and persistent pain experience.
Altered Neurochemical Environment: Chronic pain can alter the levels of neurotransmitters and neuropeptides in the brain, such as serotonin, norepinephrine, and endogenous opioids. These changes can affect mood, pain perception, and the overall experience of pain.
Managing chronic pain in hEDS involves addressing these central changes through multidisciplinary approaches, including physical therapy and podiatry.
Until the advent of RTMS usage for pain, most patients have found pharmacological interventions (gabapentin, pregabalin, duloxetine, amitriptyline) to be fraught with side effects – drowsiness, memory impairment, worsening of brain fog, and unacceptable gastrointestinal side effects.
This is the reason why Dr Stephanie Barrett and colleagues have pioneered the use of brain modulation with RTMS. Following the huge success of using RTMS with depression, several large studies (met analyses) have proved that the over stimulated pain/brain areas can be calmed and reset by RTMS, causing a vast reduction in centralised nerve pain (fibromyalgia).
Following on from this, a large study of 90 patients (Tanwar et al 2020) demonstrated longstanding remission from FM in a trial which showed ineffectiveness of the placebo treatment but significant improvements in FM in the RTMS treated group. We have been following the course of over 30 patients treated with RTMS and the same protocol as Tanwar et al. We have observed many patients with 100% remission from pain and other beneficial effects such as reduction in anxiety, depression and disability scores. We are happy to show our carefully collected anonymous data.
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