Did you know that fatigue is the second most commonly described symptom of hypermobility, after pain, according to the NHS and Cleveland Clinic websites? It’s something many of us with Ehlers-Danlos syndrome (EDS) share in common. But maybe if we could learn to pick up on the subtle signals sooner, we can learn to better manage our energy and fatigue. 

You wouldn’t leave your car roadside or your cell phone dead without a recharge, would you? Why do that to yourself if you know how and when to stop it? Maybe you just need to learn to see the warning signals.

Fatigue differs from the tiredness the average healthy person feels after long periods of work or exercise or when they haven’t slept well. True fatigue is a feeling of constant exhaustion that makes it hard to get through the day, let alone participate in activities you enjoy. Fatigue is often very frustrating. It’s not something that your doctor can measure or test for. It’s often not evident to others, but it is very real for you. The more severe it is, the more debilitating it can be, leading to more chronic fatigue symptoms. 

If you experience fatigue that completely saps your energy, don’t try to push through it. As much as you want to for various reasons, especially if you’re trying to remind yourself that you really want to and likely shouldn’t. If you have chronic pain, you may push yourself to do lots of physical activity when you are having a “good” day.  Unfortunately, later, your pain is usually so severe that you have to rest for a long time to recover. This is the pain cycle, and it’s bound to repeat itself if we don’t figure out how to properly pace ourselves to avoid the boom and bust. Learning pacing can be very challenging, but in the early stages of fatigue, these basic ideas may be helpful in general:

• Take it easy. Don’t try to do too much. If you get tired, allow yourself to take a nap, or do something restful like reading, listening to music, meditating, or a creative activity. Schedule rest breaks throughout the day if that helps. Allow yourself a ‘permission slip’ without guilt for self-care.
  
• Plan ahead for activity. If you have limited energy, use it for the most important activities on your calendar. If you have a busy day ahead, make plans the night before to make the day go easier, or plan for a recovery day after. 
  
• Inform family and friends. Tell people you are close to about your condition and explain that it can cause fatigue so they will better understand if you need to cancel or modify plans.
  
• Get comfortable asking for and receiving help. This can be a big mental barrier, especially when we are used to taking care of others. 

When Fatigue is More than Just Tired: Chronic Fatigue
Fatigue is considered chronic if it lasts more than six months (Source). Chronic fatigue is described as “a persistent, overwhelming sense of tiredness, lack of energy, and feeling of exhaustion”(Source). It’s not something that goes away with a nap – though naps can be helpful to many.  In the American Journal of Medical Genetics, the EDS experts write in their research publication about the relationship fatigue has been found with EDS…

“Its persistence and impact on daily activities and quality of life are recognized descriptors of Chronic Fatigue Syndrome (CFS), also known as myalgic encephalomyelitis (ME)...Fatigue may be a principal presenting symptom in Ehlers–Danlos syndrome—hypermobile type (hEDS). However, a clinician may diagnose CFS without appreciating the presence or pre-existence of features that may have led to a diagnosis of hEDS. The risk then is attention may be taken away from specific triggering factors for fatigue and adaptations to management specific to hEDS such as physical therapies.” 

What To Do About More Severe, Debilitating & Chronic Fatigue
When you have chronic illness, disability or any other form of being consistently worn down, fatigue goes to a whole new level and requires a more complex approach. Enter the potential customizable system to manage your own individual warning signs we’re sharing in this article, the Fatigue Scale. This is a personalized, pre-written plan you create with your caregivers to have a strategy to learn how to recognize the warning signs and red lights going off before you overdo it and pay the recuperation costs over the next day(s). It is self-care and self-management at its finest, where it’s much easier to say than to implement on a daily basis, but let’s try.

This concept has been referred to as many different concepts in chronic illness communities, such as the spoon theory, the red light theory, and many other energy conservational names and descriptive terms. I prefer to call it “energy management,” as that sounds more like a cool, environmentally focused project, than just me working to get through my daily struggle with illness, which can feel never-ending. Use whichever analogy speaks the most to you so you can relate to the intended purpose – to stop yourself before it’s too late and you’ve overdone it because only you know how you might pay for it in a new pain cycle. Just remember, “start low and go slow” is the motto for fatigue management overall.

The 1-10 Scale for Fatigue and Frustration Management
Pay attention to how you feel both physically and/or cognitively on the escalating scale from 0 to 10.

10	COMPLETELY DONE!
8-9	EXHAUSTED!
6-7	TIRED.
5	Somewhat Tired.
3-4	Little Tired.
1-2	Not perfect, but good to go!
0	Feeling Fine!

The idea here is simple red-to-green/blue light zones similar to how the medical community treats and talks about pain levels on a scale of 1-10. Ten being the worst fatigue imaginable, 1 being non-fatigued. Using this descriptive language if only for yourself can assist you in finding ways to identify your personal triggers, reactions and behaviors you might not realize are happening. That way you and your caregivers can better protect your precious batteries for what matters most to you. It may seem simple, but can be challenging to sit down to actually identify, then implement the warning system. But well worth it if you can learn how to pace yourself better. 

This fatigue scale was adopted from one provided by an occupational therapist from Rehab Without Walls, a neurocognitive rehabilitation in-home care services company for people with brain injuries, strokes, EDS and other neuromuscular disorders. Here is a sample written personal Fatigue Scale plan from another patient for your use and reference, highlighting each type of scenario to focus on when evaluating fatigue: cognitive, physical, social and emotional types of fatigue, and the symptoms and/or behaviors that you might also notice in yourself to get you started. 

How to Establish Your Personal Fatigue Scale
Understanding and managing fatigue requires a personalized approach, tailored to your specific needs and experiences. The Fatigue Scale offers a detailed framework for assessing and addressing fatigue levels by understanding what symptoms you see as you escalate to worsening fatigue levels. Here’s how you can use this scale to establish your own personal fatigue monitoring system and manage your energy more effectively:.

Step 1: Symptoms During the Scale

The Fatigue Scale ranges from 0 to 10, with each level providing a detailed description of physical and cognitive states. The key is knowing when to pause. For example, when you are in the 5 or yellow range, take a 5-10 minute break. Here’s a brief overview:

• 0: Rested and restored.
• 1-2: Slightly fatigued but still functional.
• 3-4: Little tired, maybe feeling fuzzy, slower processing, and mild frustration.
• 5-6: More tired, significant effort required for basic tasks, increasing anxiety, and physical discomfort.
• 7-8: Very tired where coping strategies become less effective, widespread pain, and heightened irritability persist.
• 9: Extremely tired soon cuts into a survival mode, with severe pain, and cognitive shutdown.
• 10: Complete exhaustion is when we must sleep immediately, severe brain fog, and face potential physical collapse.

Step 2: Personalizing Your Fatigue Scale

To tailor the fatigue scale to your personal experience, start by monitoring your daily activities and how they affect your energy levels. Note specific physical and cognitive symptoms at different points throughout the day. Here are a few questions to ask yourself that can assist in finding those steps from one stage to the next and give you an opportunity to pause. 

• How do I feel physically and mentally in the morning, afternoon, and evening?When am I at my best?
• What activities increase my fatigue? When am I at my worst?
• What symptoms do I experience at different fatigue levels?
• How do my mood, pain, and physical abilities change as I get more tired?

Step 3: Regular Monitoring

Create a daily log to record your fatigue levels at different times. Include details about your physical and cognitive state, activities performed, and any breaks taken. Over a week or so, this log will help you identify patterns and triggers for fatigue. Monitor your:

• Physical Symptoms: Pain levels, muscle weakness, balance issues, dizziness, and vision problems.
• Cognitive Symptoms: Memory lapses, difficulty concentrating, slower processing, and confusion.
• Emotional State: Irritability, anxiety, frustration, and mood swings.
• Activity Levels: Types of activities, duration, and intensity.

Step 4: Implementing Strategies

Based on your monitoring, develop alternative strategies to manage your fatigue more effectively. Also see the yellow and red zone strategies outlined on the next pages for more ideas.

• Take Breaks in Activities: Spend time outside, meditate, practice mindfulness, or engage in light physical activity like stretching or yoga.
• Ensure Hydration and Nutrition: Drink water and eat healthy snacks.
• Make Environmental Adjustments: Use earplugs or soft music to reduce noise, and take regular breaks from screens.

Step 5: Adjusting Your Routine

Use the insights from your fatigue monitoring to adjust your daily routine as needed. Schedule high-energy activities during your most alert times and incorporate regular breaks to prevent reaching critical fatigue levels. I am most alert and capable in the morning, so I plan any important activities then for example.

How to Recognize Your Warning Signs at Each Level of Fatigue

I’m not really a fan of the similar 1-10 pain scale.  Yet, this system could help you learn to identify when to stop before the bust. Here are some questions you can use to help identify symptoms and warning signs for each level of the fatigue scale.

Level 0: Rested & Restored

• How do I feel physically and mentally when I am fully rested?
• What activities do I enjoy and can perform effortlessly?
• How is my mood and overall sense of well-being?

Level 1-2: Slightly Fatigued but Good to Go

• What are the first signs that indicate I am starting to feel tired?
• Do I notice any minor physical discomfort, such as slight muscle aches or a mild headache?
• How does my concentration and attention to tasks feel?

Level 3-4: Little Tired

• What physical sensations do I experience when I start to feel more tired (e.g., heavy limbs, slight dizziness)?
• Do I find myself getting frustrated or irritable more easily?
• How is my cognitive functioning, such as memory and decision-making?
• Are there any early signs of pain or discomfort that started to appear?

Level 5-6: More Tired

• How much effort do I need to exert to complete basic tasks?
• Do I feel an increase in anxiety or worry about not being able to keep up?
• Is there a noticeable decline in my ability to concentrate or remember things?
• How does my physical discomfort change (e.g., headaches, muscle tension)?

Level 7-8: Very Tired

• What specific activities become challenging or impossible to do at this level of fatigue?
• How does my mood change (e.g., feeling overwhelmed, tearful, or irritable)?
• Do I experience widespread pain or physical symptoms such as nausea or dizziness?
• How effective are my usual coping strategies at this point?

Level 9: Exhausted

• What are the most severe physical symptoms I experience (e.g., severe pain, inability to support my body)?
• How does my cognitive function decline (e.g., brain fog, difficulty understanding simple instructions)?
• What emotional states do I encounter (e.g., agitation, dissociation)?
• Do I need to lie down or find a quiet, dark place to recover?

Level 10: Complete Exhaustion

• What are the unmistakable signs that I have reached my limit (e.g., inability to keep eyes open, must sleep immediately)?
• How do my physical symptoms present at this level (e.g., severe pain, fainting)?
• What cognitive and emotional states accompany complete exhaustion (e.g., severe brain fog, extreme agitation, uncontrollable crying)?
• What immediate actions do I need to take to recover (e.g., sleep, medication, balance blood sugar with certain foods, turn off my phone notifications)?

Additional Considerations to Consider

• Are there specific patterns or triggers that consistently lead to higher levels of fatigue (e.g., certain activities, lack of sleep, certain types of stress)?
• What strategies or interventions have been effective in the past for managing my fatigue at different levels?
• Who can I reach out to for support when I recognize I am at higher levels of fatigue?

Strategies for the Yellow and Red Zones
Here are additional strategies tailored to help manage fatigue when you find yourself in the yellow (5-6) and red (7-10) zones, where energy management is most critical.

Yellow Zone Strategies (Fatigue Levels 5-6)

When you’re in the yellow zone, it’s essential to take proactive steps to prevent further decline. At this stage, you’re experiencing noticeable fatigue but can still manage some activities with effort.

1. Pacing and Planning

Break Tasks into Smaller Steps: Avoid overexertion by breaking larger tasks into smaller, manageable steps.

Use a Timer: Work in short bursts of 15-20 minutes followed by a 5-10 minute rest. This technique, known as the Pomodoro Technique, helps in pacing activities.

2. Rest and Recovery

 Scheduled Rest Breaks: Plan regular rest breaks throughout your day. Set reminders to take a break before you feel overwhelmed. At that first hint of pain or discomfort, stop.

 Lie Down: If possible, lie down for a few minutes to alleviate the strain on your body and mind.

3. Environmental Modifications

Ergonomic Adjustments: Use supportive seating and ergonomic tools to reduce physical strain.

Sensory Aids: Wear sunglasses to reduce light sensitivity and use noise-canceling headphones to minimize auditory overload.

4. Hydration and Nutrition

Stay Hydrated: Drink water throughout the day to maintain hydration, which can help reduce fatigue.

Frequent, Balanced Snacks: Eat small, nutritious snacks to keep energy levels stable.

5. Mental Health Strategies

Mindfulness and Relaxation: Practice mindfulness, deep breathing, or guided relaxation exercises to calm your mind and body.

Positive Affirmations: Use positive affirmations to combat negative self-talk and maintain a hopeful mindset.

Red Zone Strategies (Fatigue Levels 7-10)

In the red zone, fatigue is severe, and your ability to function is significantly impaired. At this stage, it’s crucial to prioritize rest and recovery.

1. Immediate Rest

Complete Rest: Cease all non-essential activities and focus on resting. Lie down in a quiet, dark room to help your body recover.

Comfort Measures: Use pillows, neck braces, and other supportive devices to maintain comfort while resting.

2. Pain Management

Medications: Take prescribed pain medications as needed. Ensure they are within the recommended dosage.

Heat and Cold Therapy: Apply heat pads or cold packs to areas of pain to reduce discomfort.

3. Cognitive Rest

Minimize Stimulation: Avoid mentally taxing activities. Limit screen time and exposure to bright lights and loud noises. Or just simply close your eyes.

Quiet Time: Engage in calming activities such as listening to soft music or nature sounds.

4. Hydration and Nutrition

Easy-to-Consume Foods: Opt for easy-to-digest foods such as smoothies, soups, and nutrient-dense snacks.

Stay Hydrated: Continue to drink water, herbal teas, or electrolyte drinks to maintain hydration.

5. Emotional Support

Reach Out: Inform a trusted friend, family member, or caregiver about your condition. Their support can help alleviate stress and anxiety.

Therapeutic Techniques: Practice gentle self-compassion and mindfulness techniques to manage emotional distress.

6. Long-Term Management

By learning to recognize and implement some of these strategies, you can hopefully feel more in control of navigating the yellow and red zones of fatigue, allowing you to maintain a higher quality of life and prevent further physical and cognitive decline. Self-awareness and proactive management are key to handling the challenges associated with chronic fatigue so start low and go slow!

Bibliography and Additional Resources

• Surviving the Rollercoaster of EDS and Chronic Fatigue  
• The Six Steps of Proper Pacing
• Hypermobility & EDS Fatigue: It’s not the same as being tired
• How to Use Pacing Systems To Help with Neurodivergent Burnout
• Chronic Fatigue in Ehlers-Danlos syndrome, Hakim A, De Wandele I, O’Callaghan C, Pocinki A, Rowe P. 2017. Chronic fatigue in Ehlers–Danlos syndrome—Hypermobile type. Am J Med Genet Part C Semin Med Genet 175C:175–180.