How to Treat EDS: Joints, Pain Relief, and POTS

Ehlers-Danlos syndrome (EDS) has no cure, but a combination of physical therapy, pain management, joint protection, and treatment of related conditions can significantly reduce symptoms and prevent injury. Because EDS affects connective tissue throughout the body, treatment touches nearly every system, and the most effective approach is multidisciplinary.

Physical Therapy Is the Foundation

Strengthening the muscles around unstable joints is the single most important long-term strategy for managing EDS. Exercises that focus on movement control and stabilizing muscles are generally the best fit. Low-load exercises, meaning lighter resistance with controlled movement, are preferred over heavy or explosive ones. The guiding principle is to start low and go slow: begin with few repetitions, light weight, and short sessions, then increase gradually.

People with hypermobile joints should avoid high-impact activities like running and jumping, combat sports, and anything that emphasizes flexibility. Stretching requires caution. Overstretching beyond the normal range can actually worsen instability if the muscles can’t stabilize the joint afterward. Sometimes a muscle that feels like it needs stretching is actually overworked and needs strengthening instead. When stretching is appropriate, the more flexible areas should be stabilized first so the stretch targets what’s actually tight.

Proprioception training, which is exercises that improve your sense of where your body is in space, is particularly valuable. People with hypermobility often have reduced proprioception, which contributes to the cycle of subluxations and dislocations. Balance work, controlled single-leg exercises, and movement awareness drills help your nervous system better protect your joints. Finding a physical therapist who understands EDS is critical, since standard rehab protocols can do more harm than good.

Managing Chronic Pain

Pain in EDS is complex and often resistant to simple fixes. Over-the-counter options like acetaminophen and anti-inflammatory medications can help with mild to moderate pain, especially when inflammation is involved. However, many people with EDS have gastrointestinal issues that make anti-inflammatories hard to tolerate.

For nerve-related pain, medications originally developed for depression or seizures are sometimes used, though they require careful monitoring because of the increased risk of autonomic nervous system issues in EDS. Muscle relaxants can help with painful spasms but are generally discouraged for routine use because they may increase joint instability, potentially making pain worse over time. Opioids are considered only for short-term use. There is strong evidence that long-term opioid treatment is not viable for EDS and may actually increase pain sensitivity.

The honest reality is that expert consensus indicates medications alone are often not effective for long-term pain management in EDS. The most successful approaches combine physical therapy, joint protection, psychological support, and careful use of medications for flares rather than relying on any single drug.

Braces, Splints, and Joint Protection

External support can prevent subluxations and reduce pain during daily activities. Ring splints are one of the most widely used tools for finger and thumb instability. They limit excessive movement at the finger joints, helping with hyperextension, side-to-side instability, and subluxations. Plastic oval-8 splints are an affordable starting point and can be trialed before investing in silver or metal ring splints, which are more durable and discreet. Each joint that needs a splint must be individually measured for fit.

Wrist splints, ankle braces, and knee supports serve similar purposes for larger joints. Seeing a hand therapist or occupational therapist before purchasing splints is worthwhile, even if you end up ordering them yourself afterward. A professional can identify which joints actually need support and which type of splint will work best for your specific pattern of instability. Custom orthotics are generally recommended when off-the-shelf options don’t provide adequate support or don’t fit well.

Sleep and Ergonomic Support

Nighttime subluxations and morning pain are common in EDS, and the right sleep setup makes a noticeable difference. Body pillows, particularly U-shaped pregnancy pillows, provide full-length support that helps side sleepers keep joints aligned. Placing a pillow between your knees, under your belly, or behind your back distributes weight and reduces strain.

Memory foam pillows contour to your body’s shape and help with spinal alignment. Buckwheat pillows offer firm, adjustable support and are popular in the EDS community for the same reason. Cervical pillows specifically designed to support the neck’s natural curve can reduce cervical instability issues. Wedge pillows placed behind the back, under a hip, or near an elbow can help prevent dislocations during sleep. Even smaller supportive cushions placed under a knee or shoulder can turn a painful night into a manageable one.

Digestive Issues and Diet

Gastrointestinal problems, including slow stomach emptying (gastroparesis), reflux, and bloating, are extremely common in EDS. Dietary adjustments can meaningfully reduce symptoms. High-fat meals, especially high-fat solid meals, tend to provoke the worst symptoms. Low-fat, liquid or soft meals are generally better tolerated.

A small-particle diet, where food is cut very small, blended, or naturally soft, has been shown to improve gastric emptying time and reduce nausea, vomiting, fullness, bloating, and heartburn. Foods that tend to trigger symptoms include fatty, acidic, spicy, and fiber-heavy roughage-based foods. Foods that tend to help are bland, sweet, salty, and starchy. Eating smaller, more frequent meals rather than large ones also reduces the burden on a sluggish digestive system.

Treating POTS and Mast Cell Issues

Two conditions frequently overlap with EDS: postural orthostatic tachycardia syndrome (POTS), where your heart rate spikes when you stand up, and mast cell activation syndrome (MCAS), where immune cells overreact and cause widespread symptoms like flushing, hives, brain fog, and GI distress. These conditions amplify each other. One theory is that overactive mast cells release enzymes that break down connective tissue, worsening joint laxity, while the joint and autonomic problems feed back into mast cell activation.

Treating mast cell activation can improve all three conditions. Therapies typically involve combinations of antihistamines (both H1 and H2 types), mast cell stabilizers, and other targeted medications. In one study of 95 patients treated with mast cell-targeted therapy, 82% reported a positive response over an average follow-up of nearly three years. Suppressing overactive mast cells may not only improve immediate symptoms but potentially slow progression and allow some tissue healing.

Psychological Support for Chronic Pain

Living with a condition that causes daily pain, unpredictable injuries, and often years of diagnostic uncertainty takes a psychological toll. Cognitive behavioral therapy (CBT) has the most evidence for EDS specifically. In a study of 130 people with EDS who completed a CBT-based pain management program, all outcome measures improved significantly at one-month follow-up, with most improvements sustained at five months. The one exception was average pain intensity, which partially returned, though function and coping remained better.

CBT helps reduce kinesiophobia, the fear of movement that often develops after repeated injuries and leads to deconditioning. Smaller studies have shown that CBT improves not just pain coping but also physical performance measures like balance and stair climbing. Acceptance and commitment therapy (ACT), which focuses on building a meaningful life alongside pain rather than eliminating it, has also shown improvements in depression and psychological flexibility in EDS patients.

Surgery and Wound Healing Risks

Surgery is sometimes necessary for severe joint instability, but EDS creates three specific surgical risks: tissue fragility that makes wounds more likely to come apart, blood vessel fragility that causes difficult-to-control bleeding, and delayed wound healing. Tissues in EDS often don’t hold sutures well, and wide scarring is common. Many people with EDS also show resistance to local anesthetics like lidocaine, meaning standard doses may not provide adequate numbing.

These risks don’t make surgery impossible, but they mean any surgeon operating on someone with EDS needs to know about the diagnosis beforehand. Surgical planning should account for gentler tissue handling, longer healing timelines, and modified anesthesia approaches. For vascular EDS specifically, surgical risk is significantly higher due to extreme blood vessel fragility.

What’s Ahead for EDS Treatment

The diagnostic criteria for EDS, last updated in 2017, are currently being revised. The Ehlers-Danlos Society’s “Road to 2026” initiative is reviewing and refining the criteria for hypermobile EDS and hypermobility spectrum disorders, with updated guidelines expected in late 2026 or early 2027. For vascular EDS, a clinical trial called PREVEnt was testing a drug that reduced death from aortic dissection by 30 percentage points in mice, but the trial was suspended in 2022 due to funding issues. It remains paused, though researchers continue working toward restarting enrollment.