For individuals living with ALPIMS-related conditions, movement can be a powerful tool for restoring rhythm, regulating the nervous system, maintaining joint function, and supporting emotional well-being. However, unlike the general population, people with ALPIMS must approach movement through adaptive pacing, self-awareness, and gentleness.
When done mindfully, movement can:
- Support more restful sleep
- Alleviate pain and stiffness over time
- Regulate stress hormones and immune responses
- Improve proprioception (body awareness), especially in those with joint hypermobility
- Reduce anxiety and improve mood
- Restore a sense of agency and body trust
But this only works when pacing and sensory regulation are at the center of your movement plan.
🧭 What Is Adaptive Pacing?
Pacing means:
- Doing things within your energy and sensory envelope
- Stopping before symptoms spike (not pushing through)
- Listening to your body’s cues, especially subtle ones
- Treating rest, regulation, and movement as equal parts of care
Even small activities — like brushing your teeth, having a phone call, or walking around the block — can act as stressors when your nervous, immune, or pain systems are sensitized. This is not a sign of weakness. It’s a biological signal that your system needs protection and calibration.
📓 Start with an Activity & Energy Log
Keeping a daily log can help you learn:
- When your energy naturally peaks and drops
- Which activities leave you restored, neutral, or depleted
- How different types of exertion (mental, emotional, sensory) impact physical symptoms
Rate your energy on a 1–10 scale throughout the day, and log symptoms like:
- Joint instability or sharp pain
- Rashes, flushing, or heat sensitivity
- Anxiety spikes or sensory overwhelm
- Sleep quality
This will guide when and how to safely introduce movement.
⚖️ Identify Your Personal Stress-Activity Balance
- What must be done?
- What could be modified, broken up, or delegated?
- What brings joy or a sense of purpose, even if it uses energy?
These questions help prioritize low-load, high-value activities. Grocery shopping might need to be spread across three days or replaced with delivery. Socializing might be limited to 15 minutes but still be mood-enhancing. Joyful activities are not indulgent — they are therapeutic.
🔁 Reframe Movement as Nervous System Nourishment
You don’t need to “work out.” You need to move in ways that nourish you.
| Type of Movement | Goal | Example |
|---|---|---|
| Regulatory | Calm the nervous system | Rocking, stretching, rhythmic movement, body scan |
| Proprioceptive | Support joint awareness in hypermobility | Resistance bands, compression, grounding walks |
| Circulatory | Improve blood flow, reduce stagnation | Gentle walking, aqua movement, leg slides in bed |
| Mood-enhancing | Increase serotonin/dopamine | Music + sway, short sunlit walks, dancing in bed |
🧘 Types of Exercise for ALPIMS Profiles
1. Aerobic Movement (when tolerated)
- Walking, slow cycling, aquatic movement
- For POTS/ME/CFS, start horizontal or reclined (e.g., recumbent cycling, bed yoga)
- Use heart rate monitoring if needed (stay within anaerobic threshold)
- If a 5-minute walk causes a flare, try 1-minute walks with long rests or use “movement snacks” throughout the day
2. Strengthening (especially for hypermobility)
- Prevents deconditioning and supports joint protection
- Focus on low-resistance, high-control movements
- Avoid overextending or locking joints
- Work with a hypermobility-informed physio if available
3. Stretching (sensory and mobility support)
- Always warm up first (after shower, heat pack, or movement)
- Never stretch into pain
- Use proprioceptive feedback tools: foam rollers, therabands, gentle resistance
🛑 Red Flags to Watch For
Stop or modify movement if you experience:
- Post-exertional malaise (crash 24–48 hrs later)
- MCAS flares: rashes, flushing, itch, tachycardia
- Joint instability or “giving way”
- Dizziness or orthostatic intolerance
- Sensory overload or meltdown triggers
These are not signs you’re failing. They are cues to adjust the plan — perhaps by reducing intensity, breaking up activity, or adding more rest buffers.
🧩 Build Your Personal Movement Plan
| Component | Example (customize to your needs) |
|---|---|
| Green Zone – Movement feels nourishing | Gentle stretches in bed, 5-min sun walk |
| Yellow Zone – Activity causing symptoms | Pause, hydrate, deep pressure input |
| Red Zone – Full flare | Recline, weighted blanket, grounding breath |
Build up activity by 5–10% per week, if tolerated. Progress is not linear — fluctuation is normal. Use your diary to adjust and celebrate any increase in body trust, not just activity levels.
🧘 Gentle is Powerful
In ALPIMS, exercise should never mean force. It means relationship with your body — moving together at the pace of healing.
If you are not ready for physical activity, start with breath, visualization, or grounding practices. Rest is not weakness — it is an active phase of healing.
Movement & Pacing for ALPIMS + Neurodivergence
Movement is a form of regulation — not punishment, not performance. For people living with ALPIMS and neurodivergent traits, exercise must be adapted to account for fluctuating energy, joint instability, sensory overload, emotional dysregulation, executive dysfunction, and trauma responses.
🧠 Why Movement Can Be Challenging in Neurodivergence
| Challenge | ALPIMS-Neurodivergent Explanation |
|---|---|
| Executive function difficulties | Hard to start, plan, or remember sequences of movement |
| Time blindness | Hard to feel when it’s time to pause or resume |
| Interoceptive differences | Hard to detect when tired, hungry, overstimulated, or in pain |
| Sensory sensitivities | Environments (gyms, public pools) may feel overwhelming or unsafe |
| Social trauma or performance anxiety | Past PE/sports trauma may trigger avoidance |
| Monotropic focus (autism) | Hyperfocus may lead to missing body cues or overexertion |
| Rejection sensitivity (ADHD/autism) | Difficulty tolerating “not doing it perfectly” or fear of failure |
🛠️ Pacing Adaptations for Neurodivergence
| Core Pacing Principle | Neurodivergent-Friendly Adaptation |
|---|---|
| One step at a time | Use visuals, checklists, or routines with clear cues |
| Flexible goals | Let intensity and duration change daily – even hourly |
| Listen to your body | Use external reminders or trackers if interoception is unclear |
| Rest is active care | Schedule “do nothing” zones; avoid guilt for unproductive time |
| Plan recovery time | Build-in post-activity decompression, even for fun things |
| Joy matters | Include dopamine-boosting or stimming-style movement (e.g., bouncing, dancing) |
| Permission to stop | Encourage self-directed endings — no “push through” mentality |
🔄 Reframing Movement for ALPIMS + ND Bodies
Rather than “exercise,” think of:
- Movement as regulation
- Activity as self-connection
- Body awareness as communication
Even repetitive stimming, chair rocking, pacing, or stretching in bed counts as therapeutic movement.
🧭 Neurodivergent-Inclusive Activity Planning
Use a “movement menu” with 3 categories:
| Type | Purpose | Examples |
|---|---|---|
| 🟢 Low-Energy / Safe Mode | Gentle movement for regulation | Cat-cow in bed, stretching under blankets, rocking, walking inside |
| 🟡 Medium-Energy / Zone Challenge | Builds stamina without overload | Slow walk outside, 5-min dance to music, proprioceptive resistance |
| 🔴 High-Support / High Risk | Only when well-rested + regulated | Aquatic therapy, physio sessions, outdoor errands |
Allow freedom to switch levels. Your nervous system may move between zones rapidly.
🧘 Sensory and Environmental Adaptations
| Barrier | Solution |
|---|---|
| Noise, light, temperature sensitivity | Choose calm, dimly lit, cool spaces (home-based over public) |
| Clothing discomfort | Use soft, non-binding clothes; no tags or seams; barefoot if grounding helps |
| Overstimulation from crowds or unpredictability | Avoid gyms; use online videos or familiar routines |
| Movement aversion due to past trauma | Redefine success: 30 seconds of movement = valid |
💡 Motivation and Support Tools
| Tool | Why It Helps |
|---|---|
| Body Doubling | Helps with initiation, especially in ADHD |
| Timers or visual cues | Overcomes time blindness; creates start-stop structure |
| Playlist or themed movement | Engages dopamine system; turns repetition into play |
| Flexible habit trackers | Encourages reflection, not perfection |
| “Zone Check” self-scan | Prompts body awareness: “Green = energize, Yellow = slow, Red = rest” |
📓 Neurodivergent-Friendly Activity Log
Instead of just energy levels, log:
- Did I enjoy this activity?
- Was the environment supportive?
- How did I feel before / during / after?
- Would I do it again? What would I change?
Use emoji, symbols, or color codes if words are hard to track consistently.
🧩 Involving Others
- Ask for movement partners who respect pacing and consent
- Let therapists or physios know about sensory needs and trauma triggers
- If verbal communication is hard, use written or visual signals for pain/overload
upports for Pacing & Exercise in ALPIMS
Including Health Care, Allied Support, and Cost-Effective Strategies
🏥 1. Healthcare & Allied Health Supports
| Professional | What They Can Offer | Tips to Maximize Value |
|---|---|---|
| GP (ALPIMS-aware) | Referrals, care plans, medication oversight | Ask for a GP Management Plan for chronic illness |
| Physiotherapist (HSD-aware) | Gentle strength plans, joint stabilization | Request short, home-based programs; look for trauma-informed care |
| Exercise Physiologist | Activity pacing, graded return to movement | May be bulk-billed via Chronic Disease Management (CDM) |
| Occupational Therapist (OT) | Energy conservation, sensory tools, task planning | Excellent for ND + fatigue adaptations |
| Dietitian (MCAS-, gut-, POTS-aware) | Nutritional support to optimize energy and reduce flares | Ask for input on meal prep pacing and hydration needs |
| Clinical Psychologist | Support for anxiety, pacing burnout, and body trust | Ask for help with activity avoidance cycles and trauma processing |
| Speech Therapist (ND-aware) | For AAC/communication or feeding if needed | Especially relevant if sensory or energy limits impact eating |
| Neurodivergent Coach or Peer Mentor | Help with motivation, executive function, planning | May be covered under NDIS or disability services funding |
💸 2. NDIS & Alternative Funding Options (AU)
🟢 NDIS (National Disability Insurance Scheme)
You may be eligible under:
- Autism Spectrum Disorder
- Functional impact from ME/CFS, POTS, hypermobility, MCAS
- Psychosocial disability (e.g., chronic anxiety, trauma, executive dysfunction)
📌 Helpful NDIS Categories:
| Category | What It Can Fund |
|---|---|
| Capacity Building: Improved Daily Living | OT, physio, EP, pacing education, psychology |
| Core Supports | Support workers for exercise pacing, shopping, meal prep |
| Consumables | Sensory aids, resistance bands, compression garments |
| Assistive Technology | Rollators, shower chairs, mobility devices |
📝 Tips:
- Use functional assessments from OT/physio to demonstrate impact
- Document fatigue, executive dysfunction, and sensory overload
- You don’t need a diagnosis if you can show substantial functional impairment
🟠 Alternatives to NDIS (if not eligible):
| Option | Description |
|---|---|
| GP Chronic Disease Management Plan (CDM) | Up to 5 subsidised allied health sessions annually |
| My Aged Care (if over 65) | Includes supports for pacing and ADLs |
| Community Health Centres | Often provide free or low-cost physio, dietetics, OT |
| Mental Health Care Plan | 10 psychology sessions per year (bulk-billed options exist) |
| Not-for-profit services (e.g., Mind Australia, Carers Australia) | Peer support, social workers, pacing help |
| University clinics | Supervised student clinicians offer low-cost allied health care |
| Disability employment or peer programs | Can fund coaching and pacing-friendly routines |
🛠️ 3. Low-Cost & Cost-Reducing Supports for Pacing + Exercise
| Support | Cost-Saving Tip |
|---|---|
| Movement apps (ND/adapted) | Many free or low-cost apps now offer bed-based or pacing-friendly options (e.g., Curable, Yoga for Spoonies, Paced breathing apps) |
| YouTube videos | Look for trauma-informed yoga, gentle hypermobility, or fibro-friendly routines |
| Sensory tools | Use homemade options (weighted lap pad with rice, deep pressure from blankets) |
| Compression garments | Request prescription for subsidised compression via GP (DVA, chronic illness supports) |
| Energy log or pacing sheets | Use printable versions or apps like Flaredown, Bearable, or a simple Google Sheet |
| Peer pacing groups (free) | Online ND/ALPIMS-friendly communities (Reddit, Facebook, Discord, ME/CFS forums) often share resources |
🔄 4. Practical Delegation and Life Hacks for Energy Conservation
| Task | Alternative |
|---|---|
| Grocery shopping | Ask for help, use delivery, or break into 3-day sequence: plan > list > order |
| Cooking | Batch cook on Green Zone days; freeze meals in small containers |
| Cleaning | Use support workers (NDIS or carer programs); do 5-min micro-tasks |
| Appointments | Use telehealth whenever possible |
| Dressing/exercise | Keep easy-to-access tools (resistance bands, stretches) near your bed or chair |