Management of Elbow Grinding Sensation in hEDS with POTS and MCAS
Your elbow grinding is likely due to joint instability and tissue laxity from hEDS, and you should focus on joint protection through physical therapy emphasizing proprioceptive training and muscle strengthening around the elbow, while avoiding mechanical triggers that could exacerbate MCAS symptoms.
Understanding Your Symptom
The grinding sensation (crepitus) you're experiencing is a common musculoskeletal manifestation of hEDS. This occurs because:
- Connective tissue in hEDS is softer and less stiff than normal 1, leading to joint instability
- The altered collagen structure causes abnormal joint mechanics and increased friction during movement
- Joint hypermobility allows excessive or abnormal motion patterns that create the grinding sensation
Immediate Management Strategy
1. Avoid MCAS Triggers Related to Joint Stress
Since mechanical stimuli (like friction) can trigger mast cell activation 1, you need to minimize repetitive elbow movements and avoid:
- Repetitive gripping or lifting
- Prolonged elbow flexion/extension
- Activities causing joint friction
2. Physical Therapy Approach
Based on evidence that physical therapy is central to managing hypermobility conditions 2:
- Proprioceptive training: Improve joint position awareness to reduce abnormal movement patterns
- Muscle strengthening: Focus on muscles surrounding the elbow (biceps, triceps, forearm muscles) to provide dynamic joint stability
- Avoid overstretching: Many patients report iatrogenic injuries from inappropriate interventions 2—hypermobile joints should NOT be stretched further
3. Joint Protection Strategies
From occupational therapy evidence 3:
- Use adaptive equipment to reduce elbow strain during daily activities
- Consider elbow bracing or compression sleeves for support during activities
- Apply energy conservation techniques to avoid overuse
4. MCAS Management to Reduce Inflammation
If MCAS is contributing to joint inflammation 1:
- Histamine receptor antagonists (H1 and H2 blockers)
- Mast cell stabilizers (cromolyn sodium has shown benefit 4)
- Avoid known triggers: temperature changes, emotional stress, certain medications (particularly NSAIDs, which you should avoid anyway due to tissue fragility)
When to Seek Further Evaluation
Consider imaging if:
- Pain becomes severe or constant
- You develop swelling, warmth, or redness
- Range of motion becomes significantly restricted
- Numbness or tingling develops (suggesting nerve involvement)
Initial imaging should be plain radiographs 5 to rule out:
- Intra-articular bodies
- Osteochondral lesions
- Occult fractures
- Osteoarthritis
If radiographs are normal but symptoms persist, MRI may be warranted to evaluate soft tissue structures (tendons, ligaments, cartilage).
Critical Pitfalls to Avoid
- Do NOT use NSAIDs: These are MCAS triggers 1 and should be avoided
- Avoid aggressive stretching: This worsens joint instability in hypermobile individuals 2
- Don't ignore the symptom: Chronic joint instability can lead to early osteoarthritis and permanent damage
- Ensure proper POTS management: Poor cardiovascular control can affect exercise tolerance needed for rehabilitation 6
Multidisciplinary Coordination
Given your complex triad of conditions 1:
- Physical/occupational therapy: Primary management for joint issues
- Cardiology/neurology: If POTS symptoms interfere with rehabilitation (increased fluid/salt intake, compression garments, exercise training 1)
- Allergy/immunology: If MCAS symptoms are prominent or poorly controlled
The grinding itself is not dangerous, but it signals joint instability that requires active management to prevent long-term complications. Focus on strengthening and joint protection rather than seeking to eliminate the sensation entirely.