Deep Dive: Spectrum of Pain Relief Options for EDS
PAIN IS A SPECTRUM: From Ibuprofen to Fusion—The No-BS Guide to What’s Out There (and Why It’s Complicated)
Let’s get one thing straight: if you live with Ehlers-Danlos Syndrome (EDS), you’re no stranger to pain. It’s not just “a symptom.” It’s a whole damn lifestyle. The ache that doesn't quit. The lightning bolts in your joints. The full-body tension that makes sleep, movement, and even breathing harder.
But let’s also make something else clear: the constant language of “fighting” pain isn’t helping. The whole “you’re such a warrior!” pep talk? It’s cute—until you realize your nervous system is stuck in a constant state of fight-or-flight, jacked up on adrenaline, pain signals, and past medical trauma. The truth is, most of us don’t need another call to arms—we need tools to get out of survival mode. To calm the storm, not charge into it.
So this isn’t a battle cry. It’s a breakdown. A reality check. A fully-loaded, deep-dive into the spectrum of pain relief options available for people with EDS—from the most basic over-the-counter helpers to the most invasive surgeries. No hype, no promises, no one-size-fits-all. We’re all different and need different therapies. Just the full picture so you can make informed decisions with your providers—not the internet.
LEVEL ONE: BASICS IN THE BATHROOM CABINET
OTC Doesn’t Mean Useless
Acetaminophen (Tylenol) – Minimal anti-inflammatory action, but can still ease low-grade, chronic background pain. Easy on the gut. Harder on the liver—especially if you’re also taking other meds. Think of this one as the volume dial, not the mute button.
NSAIDs (Ibuprofen, Naproxen) – Often the go-to for acute flares. They reduce inflammation, especially if you're dealing with swelling, mild injury or mechanical strain. But NSAIDs come with baggage: they can mess with your stomach, kidneys, or mast cells (especially if you’ve got MCAS riding shotgun).
Topicals (Voltaren gel, lidocaine patches, menthol creams) – These won’t fix deep instability, but for surface-level pain and flared-up fascia? They work smarter, not harder. Added bonus: fewer systemic side effects.
Compression, heat, ice – Not sexy. Still effective. Ice for inflammation, heat for muscle tension, compression and even weighted blankets to calm sensory input and joint wobble. These are low-risk, high-reward tools—especially when used in combo.
LEVEL TWO: MOVEMENT, MANUAL WORK, & BODY-BASED RELIEF
When It’s Not in Your Head—It’s in Your Fascia
Physical Therapy – The right PT can change the game. The wrong one can wreck you. EDS-aware PT is all about stability, not stretch. No hyperextending. No "push through it!" Look for someone trained in joint preservation and neuromuscular retraining—not general ortho protocols. Stick with the good ones and do you regular “home” work.
Fascial Therapy (Myofascial Release, Craniosacral, Rolfing, Graston Tool) – Fascia, the body’s webbing (think of the white part covering each piece of the fruit’s orange segments), can get twisted and inflamed—especially when joints are unstable. Loosening it up gently can release pain, ease nerve pressure, and regulate the nervous system. But aggressive bodywork? That’s a one-way ticket to a flare. Know thy practitioner.
Trigger Point & Dry Needling – Sometimes helpful to break muscle tension loops. Sometimes it stirs up trauma responses or sets off mast cells. This is a “start low, go slow” modality, and it depends entirely on the skill of your provider. Some do it well, others can turn on your instincts to punch someone. Be warned for first-timers.
LEVEL THREE: PRESCRIPTION PAIN MANAGEMENT
Relief with Side Effects. Proceed with Eyes Wide Open.
Standard disclaimer - we are not doctors. Listen to your medically trained provider when in doubt.
Muscle Relaxants (Tizanidine, Baclofen, Methocarbamol) – Helpful for spasms and sleep, but can lead to drowsiness, dependence, or complete body shutdown. Think short-term resets—not long-term solutions.
Gabapentin / Pregabalin (Lyrica) – Designed to quiet nerve pain and central sensitization. Works for some, but many report side effects like weight gain, brain fog, or emotional numbing. Start small and track everything.
Low-Dose Naltrexone (LDN) – A wildcard- some love it, some hate it. Yes, we’re all different. Used off-label to calm immune responses and help regulate pain perception by blocking opioid receptors. It’s subtle, slow-moving, and not magic—but for those with autoimmune overlap or neuroinflammation, it might be worth exploring. Start low and build up to no more than 4.5mg per standards. Can cause POTS flush-like episodes for some.
Newer Non-Opioid Drug – Recently FDA-approved, this class of treatments targets pain signaling without the addictive loop of opioids. This most recent major FDA approval in pain management is for Journavx (suzetrigine), a first-in-class non-opioid analgesic. However, it is important to note that this drug is currently approved only for moderate to severe acute pain in adults, not for chronic pain. As a non-opioid analgesic in a brand-new class: it is a selective NaV1.8 sodium channel blocker. It works by blocking pain signals in peripheral nerves and is approved for acute pain management, not for muscle relaxation or neuromuscular conditions Source. Still in the early phases for chronic conditions like EDS, but it might show promise. Keep an eye out, but don’t believe the hype just yet.
LEVEL FOUR: INJECTIONS, ENERGY, AND NERVE INTERRUPTIONS
When Pills Don’t Touch It
Nerve Blocks – These injections can break the feedback loop of pain—especially for things like occipital neuralgia, lumbar radiculopathy, or pelvic pain. Temporary, but sometimes just enough to allow other therapies and strength-building to start working.
Radiofrequency Ablation (RFA) – A more permanent solution than nerve blocks. This involves literally burning specific nerve fibers to stop chronic pain signals. Works best when the pain source is mechanical or positional. Can work for up to a year- whew relief!
Trigger Point Injections (Local anesthetic or Botox) – Good for stubborn knots that compress nerves or throw off posture. Can reduce muscle spasm and allow better alignment. But... temporary and must be repeated.
Prolotherapy / PRP (Platelet-Rich Plasma) – These regenerative injections aim to stabilize hypermobile joints by stimulating collagen production to build stabilization. Results vary, and studies are limited in EDS—but many report reduced dislocations and pain over time as cells can rebuild better tissue.
Stem Cells – Hype-heavy and wallet-emptying. Some report miracles. Others get nothing but debt. Still largely experimental, and results are hit-or-miss depending on source, site, and practitioner skill. Do your homework on all of the above.
LEVEL FIVE: SURGERY AS STABILIZATION, NOT SALVATION
Read This Twice Before You Book the OR
Joint Fusions (SI joint, cervical spine, etc.) – Sometimes, when a joint is dangerously unstable and conservative care fails, surgical fusion is the last line of defense. But fusing one joint shifts the load elsewhere—and your connective tissue may not hold up. It's a trade-off, not a fix. Think domino effect.
Tethered Cord Release, CCI/AAI Decompression, Chiari Surgery – These are niche, controversial, and high-stakes with very few skilled providers with long wait lists to get seen. But for patients with confirmed structural collapse and neurological symptoms, they can be life-saving. The key is documentation, not vibes. Do not pass go without MRIs, upright imaging, and specialists who understand EDS.
LEVEL SIX: ALTERNATIVE & INTEGRATIVE THERAPIES
When You’ve Tried Everything Else—or Want to Avoid the Big Guns
Let’s be clear: “alternative” doesn’t mean “fake,” and “integrative” isn’t a synonym for “woo.” These approaches are often what’s left when mainstream options stall out—or when your body can’t tolerate the usual protocols. For many with EDS, this tier of care isn’t an afterthought—it’s the foundation.
Acupuncture
Rooted in Traditional Chinese Medicine and increasingly studied in Western science, acupuncture uses fine needles to stimulate nerves, circulation, and regulatory systems. Many zebras report relief from chronic pain, nausea, migraines, and autonomic dysfunction symptoms like dizziness or anxiety. But results vary, and those with mast cell sensitivity may react to needles or topical agents. Find a practitioner who understands chronic illness—not just sports injuries.
Massage Therapy
Massage can help ease muscular tension, reduce fascial restrictions, and promote relaxation—but only when it’s EDS-aware. Too much pressure, the wrong technique, or an aggressive therapist can trigger pain flares or even injuries. Look for gentle myofascial release, lymphatic drainage, or neuromuscular massage from someone trained in hypermobility. Skip anything labeled “deep tissue” unless you know exactly what you’re walking into and the average wellness spa won’t cut it.
Medical-Grade Cannabis and CBD
For patients with intractable pain, insomnia, muscle spasms, or anxiety, medical cannabis and cannabidiol (CBD) offer legitimate symptom relief without the dependency risks of opioids. However, individual response varies, especially among patients with MCAS. THC and CBD can interact with other medications, so always discuss with a knowledgeable provider before adding this to your pain regimen.
Biofeedback and Neurofeedback
These high-tech approaches train your nervous system to regulate itself. By monitoring body signals like heart rate, skin temperature, and brainwave activity, you can learn to control stress responses, pain perception, and even autonomic symptoms. Not a quick fix—but over time, they may help recalibrate systems stuck in fight-or-flight.
Breathwork, Somatic Movement, and Vagus Nerve Reset
This is the quiet work that doesn’t look like much—until it starts working. Slow, mindful movement practices like Feldenkrais, Alexander Technique, or trauma-informed breathwork/yoga can reduce tension, improve proprioception, and regulate the nervous system. Sorry, we did just recommend yoga. But these breath-based therapies can help shift your body out of survival mode and into repair and recovery. These are low-risk, often underutilized tools that can help rebuild tolerance and trust in your own body. Did you know that physical healing cannot begin until you’re out of fight-or-flight mode? Start here maybe?
Mind-Body Therapies
Let’s be clear: this isn’t about blaming your brain for your pain. It’s about recognizing that chronic pain rewires the brain—and sometimes, you need to teach it a different script. Therapies like EMDR, pain-specific cognitive behavioral therapy, Acceptance and Commitment Therapy (ACT), tapping, and trauma-informed talk therapy can help process medical trauma, reduce symptom amplification, and create space for healing.
What to Be Cautious About
Not all "alternative" is safe for EDS. Avoid aggressive cupping, scraping (gua sha), or detox trends that stress your lymphatic or vascular systems. Be cautious with traditional chiropractic adjustments unless your provider has extensive experience with connective tissue disorders. And if anyone claims they can "cure" your EDS with a single product, protocol, or machine—walk away as fast as you can manage. Run if you’re able.
DON’T FORGET THE NERVOUS SYSTEM
Pain isn’t just physical. It’s emotional. Cognitive. Sensory. It’s a full-body experience. And for people with EDS, pain often comes with central sensitization—meaning your brain is stuck in pain-perceiving mode 24/7.
Tools to Help Unstick the System:
Breathwork to reset your vagus nerve. Try 4-7-8 or box breathing techniques.
EMDR or trauma-informed therapy to unpack medical PTSD.
Gentle movement (like somatics or Feldenkrais) to rewire body-brain communication.
Restorative sleep, food, and sunlight. Not glamorous—but absolutely foundational.
SO, WHAT’S THE “RIGHT” PLAN?
There isn’t one.
Some days, ice and rest are enough. Other days, it’s a pharmacy, a PT, and a prayer. You’re not doing it wrong if you’re using meds. You’re not weak if you’re avoiding surgery. You’re not failing if you need a brace, a wheelchair, or a nap.
Pain relief isn’t a destination. It’s a toolkit. Your job is to build it thoughtfully—with a provider who sees you, listens to you, and lets you lead.
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This is what happens when we take the power back. When we stop whispering about our symptoms and start naming what’s actually going on. Support the work, share it forward, and join the mailing list if you’re done playing nice with broken systems.
We don’t need a miracle.
We need the truth.
And a plan.
Thank u for putting this all in one place 🫂
This is so comprehensive and clearly laid out. I would definitely print this out and keep it handy. I would also add in Ketamine infusions for breakthrough pain. Ketamine delivered via a dr administered nose-spray can help some with depression and anxiety as well as pain. For flare resets, Meyers cocktail infusion with added B12 and glutithion can be really helpful Finding the right infusion center is key. You want a place informed by trained nurses and anesthesiologists (avoid trendy spas). Often for the cost of an ER visit, you can get these infusions in a privately set up place for about the same out of pocket costs. These places can also give you IV Torodol (a stronger NSAID) that can work more efficiently than oral meds. They also can give IV Zofran which works faster and better for severe nausea. Celebrex (NSAId) can offer some stronger relief than your typical ibuprofen (less potent than Torodol but can be used more frequently). Another doctor approved alternative for breakthrough pain is taking Tylenol and NSAID together to deliver breakthrough pain relief.