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Unpacking Pain in EDS/HSD: A Guide to the Different Types and Why They Matter

Writer's picture: Ines IllipseInes Illipse

For people living with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD), pain is more than just a symptom—it’s a constant companion that can change in intensity, form, and impact from one day to the next. But did you know that not all pain is the same? Understanding the different types of pain is crucial not only for individuals managing these conditions but also for helping healthcare providers craft better, more targeted treatments.


In a previous post, we explored how dissociation can make it difficult for people with EDS/HSD to describe what they’re feeling in their bodies. This makes recognizing and understanding different types of pain—nociceptive, neuropathic, and nociplastic—all the more important. Let’s unpack these pain types, how they present in people with EDS/HSD, and why understanding them is vital.


1. Nociceptive Pain: The Body’s Response to Physical Strain


Nociceptive pain is what most people think of as “normal” pain—it’s your body’s way of alerting you to injury or inflammation. For people with EDS/HSD, this type of pain often comes from the strain and wear-and-tear caused by hypermobility.


Because joints move beyond their typical range, the structures supporting them—muscles, tendons, and ligaments—may suffer micro-injuries, leading to persistent discomfort. Nociceptive pain has two main subcategories:


  • Somatic Pain:

    Localized and easy to pinpoint, this pain often feels sharp, aching, or throbbing. Examples include joint subluxations or dislocations, which are common in EDS/HSD.


  • Visceral Pain:

    Deeper and harder to pinpoint, this pain is linked to organs or internal tissues. It often feels like cramping, spasms, or general aching. Many people with EDS/HSD experience visceral pain due to gastrointestinal issues or other internal problems.


Why it matters:

Understanding nociceptive pain helps individuals identify pain caused by physical strain and communicate these patterns to their healthcare team. Treatment options like bracing, physical therapy, or anti-inflammatory medications may help reduce this pain.


2. Neuropathic Pain: The Nervous System’s Reaction to Nerve Dysfunction


Neuropathic pain is different—it originates in the nervous system itself. For those with EDS/HSD, neuropathic pain might be caused by overstretched or damaged nerves, often from repeated joint subluxations or dislocations.


This type of pain is frequently described as burning, tingling, or an electric shock-like sensation. Conditions like small fiber neuropathy or nerve compression syndromes, which are more common in people with EDS/HSD, are examples of neuropathic pain.


Why it matters:

Neuropathic pain doesn’t respond well to standard treatments for physical injury. Instead, medications like gabapentin or amitriptyline may help, as well as techniques like nerve gliding exercises.


3. Nociplastic Pain: Pain Without a Clear Physical Cause


Nociplastic pain is often widespread and harder to explain—it doesn’t stem from an obvious injury or nerve issue. Instead, it’s linked to the way the brain and nervous system process pain signals. For people with EDS/HSD, conditions like fibromyalgia and irritable bowel syndrome (IBS)—both nociplastic in nature—are common.


This type of pain may feel persistent, vague, and accompanied by other symptoms like fatigue, memory issues, or mood fluctuations.


Why it matters:

Nociplastic pain requires a different approach, often focusing on calming the nervous system. Techniques like mindfulness, cognitive behavioral therapy (CBT), or graded exercise can help reframe how the brain perceives pain signals.


The Challenge of Central Sensitization


For many with EDS/HSD, pain is further complicated by central sensitization, where the nervous system becomes hypersensitive. This isn’t “just feeling more pain”—it’s a biological change where the brain amplifies pain signals.


Common manifestations of central sensitization include:


  • Allodynia: Pain from stimuli that shouldn’t be painful, like light touch.

  • Hyperalgesia: A heightened response to pain.

  • Secondary Hyperalgesia: Pain spreading beyond the original injury site.


This hypersensitivity isn’t a reflection of someone’s emotional response or pain tolerance but an intrinsic part of EDS/HSD that can make even mild stimuli feel overwhelming. Central sensitization can be difficult to manage and adds a layer of complexity to treating pain in people with EDS/HSD, as it may impact the effectiveness of typical pain management methods.


Why Understanding Pain Types Matters


Pain in EDS/HSD often overlaps, with nociceptive, neuropathic, and nociplastic pain coexisting in the same individual. Recognizing these distinctions can:


  • Empower individuals to describe their experiences more clearly to healthcare providers.

  • Help tailor pain management approaches to target the specific pain type(s).

  • Validate the lived experiences of people with EDS/HSD, offering a deeper understanding of their unique challenges.


Looking Ahead: Managing Pain in EDS/HSD


Understanding pain types is the first step, but managing them requires a tailored approach. In our next post, we’ll explore practical strategies to address these unique pain challenges, including:

  • Techniques to reduce central sensitization.

  • Gentle exercises to improve joint stability.

  • Mindfulness and CBT approaches to address nociplastic pain.


Key Takeaways


Here’s a quick summary of the three types of pain:

Type

Cause

Examples

Common Treatments

Nociceptive

Physical strain or injury

Joint subluxations, inflammation

Physical therapy, bracing, anti-inflammatory meds

Neuropathic

Nerve dysfunction

Burning, tingling, nerve compression

Medications (e.g., gabapentin), nerve exercises

Nociplastic

Disrupted pain processing by the brain/nerves

Fibromyalgia, widespread pain

Mindfulness, CBT, graded exercise

Living with EDS/HSD means navigating a complex relationship with pain, but understanding these distinctions can help you advocate for yourself and find more effective treatments.



Looking for ways to manage pain and reconnect with your body? Explore ParaMotion’s program, where we offer gentle, EDS-friendly movement therapies tailored to your needs. Join a supportive community that truly understands your journey and helps you move through life with more ease, confidence, and less pain. Schedule a free 15-minute call to see how we can help you feel your best! Book your Free 15 mn call here!!

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