When you have a rare condition, such as Ehlers-Danlos, POTS, mast cell disorder, or chronic fatigue syndrome, fatigue tends to be a significant symptom. However, you do not have to succumb to it as wholly and completely as you have been!
According to an informal study conducted by Diana Klurfeld Cares, you do not have to live day to day, dragging yourself from bed to recliner to dining room table and back again. Exhaustion doesn’t have to be par for the course. It can be a symptom that you deal with occasionally rather than fight with daily. Following are the tricks to overcoming the plague of fatigue when living with a rare condition.
We interviewed Diana Klurfeld who is using her years of experience in the medical field to launch a start-up awareness site that will hopefully serve as a resource for those currently struggling with rare diseases. Diana is not a doctor and advises to consult your physician before engaging in any self help methods like the ones discussed here.
Find the Root Cause
Q: What tends to cause fatigue in rare diseases and how can you manage it?
Diana Klurfeld: Every condition is different of course and we’re primarily talking about the ones for which fatigue is a byproduct. But, don’t assume your condition bears all of the blame for your feelings of exhaustion. Your disease or condition might not be the only cause of your fatigue. There may be other things contributing to it. Sometimes, these things are obvious, such as poor sleep cycles, lack of exercise or overexercising, or following an unhealthy diet. Sometimes, they take some digging to get to the bottom of, such as being a perfectionist, not being positive or being overcritical, or food sensitivities. At other times they take a doctor’s careful eye.
According to Ms. Klurfeld, maladies the doctor might find may include:
- Hyper- or hypothyroidism
- Hormonal imbalances
- Adrenal burnout
- Mitochondrial dysfunctions
- Toxins in your system
1. Routine Is Your Friend: Chart Your Habits & Keep a Healthy Routine
Q: I’ve heard you talk about keeping a routine. What kind of routine is most helpful?
Diana Klurfeld: The first step to finding the root cause is to examine each of these areas carefully. Even if you know beyond doubt that your chronic fatigue is rooted in your EDS, POTS, mast cell disorder, or other rare condition, improving yourself in these root areas will improve your fatigue, so be sure to complete this exercise.
Make notes of how well and long you sleep each night for one week. If you take naps, note those, their length, and how well you slept during those as well.
Take scrupulous notes of what you eat for one week. Eat normally. Write down what you eat, how much you eat, and when you eat it. How do you feel after you eat that particular food? If a food makes you feel tired, nauseous, or otherwise strange, note that.
Write down each time you exercise. Note the date, time, and length of the exercise. Write what type of workout you did and how vigorously you exercised. How did you feel afterward?
2. Chart Your Mood
Q: Do you record the data of how certain exercises or foods make you feel?
Diana Klurfeld. Yes. Exactly! Another thing I want you to do is to keep a mood journal. Write down how you feel emotionally throughout the day and why. Are you depressed? Critical? Negative? Perfectionistic? Why? When? Note that. Everyone has their times, but we’re looking for a pattern.
3. Examine Your Notes
Diana Klurfeld: These notes will help you examine your mood and habits—sleeping, eating, and exercise. At the end of the week, scrutinize them. Are you living a healthy lifestyle? Where can you improve? Improving in these areas will improve your chronic fatigue.
4. Put Together a Plan of Action
Q: Sounds good, but what do you do with all of this data once you have it?
Diana Klurfeld: Next, you need to implement a plan of action to getting these areas under control. As I said, getting your sleep, diet, exercise, and mood where they should be will improve your fatigue whether it’s predominantly caused by your condition or not. You may find that one of these factors is making your fatigue ten times worse.
Instituting a Plan for Sleep
The National Sleep Foundation recommends that adults get between seven and nine hours of sleep each night. There are a few ways to help yourself do this.
Q: Is there any catch all advice that applies to most situations, or is everyone so different that no universal tips apply?
Diana Klurfeld: We’re all different, but we all have a lot in common too. We all need sleep for example Cut off all your electronics an hour before you go to bed. The lights from the screens mess with your brain and keep you from quickly falling asleep. Instead, find something relaxing to do for that hour before bed.
Go to bed at the same time each night. Having a set bedtime gets your body used to shutting down at a specific time. That “specific time” should be around 10 PM. If it must be later for reasons beyond your control, make sure it’s before midnight. The optimal sleep hours are between 10 PM and 3 AM.
Keep your cellphone and other electronics away from your bed. The electromagnetic field (EMF) from electronics is bad for you and can disrupt sleep. Some experts suggest keeping your cellphone in a completely different room.
Wake up at the same time every morning. Again, make sure that this is at least seven-to-nine hours after your bedtime.
Institute a Plan for Diet
Q: Any special diet that you think is best for all?
Diana Klurfeld: I’m not a nutritionist or a doctor. So I can only tell you what I’ve learned from my research. But it seems that the common thread is that the most important diet moves for chronic fatigue are eliminating junk food, processed foods, and sweets and reducing or eliminating alcohol and caffeine.
Sweets and Junk
Diana Klurfeld: The bad thing about sweets and junk is that, though they taste great at the time, and though they’re a quick pick-me-up, they also drop you fast. Sugar and refined carbohydrates mess with your blood sugar and leave you feeling like a wet noodle—drained and dragging.
If you want a quick snack with a sweet taste, reach for an apple and almonds instead. Apples actually give you a boost of energy and don’t drop you. They hit that need for sweet, and they fill that empty spot and keep you full since they’re full of fiber. Almonds have enough protein to stabilize your blood sugar and keep you from crashing. Perfect combination.
Q: What’s wrong with caffeine?
Diana Klurfeld: Maybe nothing, depending on your doctor’s advice. But not after noon and in moderation. Sure, coffee might seem like that sweet nectar of life when you have chronic fatigue and need to make it through the day, but is it really? Or is it “playing” you like a fool? The truth is that you’re being taken. Coffee gives you a quick pick-me-up, just like sugar, then it steals back what it gave you and more, zapping you of your energy. At that time, you jump for more coffee.
Some people are not affected this way. However, they are the exception, not the rule. If you are using coffee as a crutch to get through the day after not getting enough rest, or if you don’t metabolize caffeine well, your body is sure to respond poorly.
Q: And Alcohol?
Diana Klurfeld: Some people use alcohol to “calm down” or to “take the edge off.” However, you may find yourself completely drained within a few hours of drinking it. You should reduce or completely eliminate this product if you want to overcome the plague of fatigue.
Q: Are certain foods off the list in addition to the processed foods you discussed earlier?
Diana Klurfeld: Remember that food charting that you did? Remember that part where you wrote how the food made you feel? Did you have any foods that made you feel sleepy, sluggish, nauseous, or otherwise blah? You most likely have a sensitivity to this food. It would be best if you considered speaking to a nutritionist or your doctor about removing this food from your diet. This food may be a contributing factor to your chronic fatigue.
A few common food sensitivities are gluten, dairy, grains, sugar, and artificial sweeteners.
Institute a Plan for Exercise
Q: How do you exercise when you’re feeling exhausted?
Diana Klurfeld: There is a secret to exercising when you have chronic fatigue. For one, overexercising makes chronic fatigue worse. In fact, it can cause it. Furthermore, it can be the main cause of chronic fatigue syndrome itself!
Many people with Ehlers-Danlos, POTS, or another type of rare disease don’t feel like spending hours at the gym anyway. Here’s the good news. You don’t have to! It’s not good for you. It will only make you more tired.
There are only a few types of exercise that are recommended for people with rare conditions. One is gentle stretching, such as Yoga. Another is high-intensity interval training (HIIT), which is the most effective exercise for increasing energy. HIIT training may be difficult at first, but these exercises are very short in duration. They are short, intense “bursts” of activity that give you a full-body workout in a short amount of time.
However, if you’ve not been exercising, getting moving at all will make a difference in your fatigue. If you dislocate easily or have other issues you will need to temper this advice and remember to always consult your doctor and other medical professionals, such as your physical therapist, before doing anything new.
Institute a Plan for Fixing Your Mood
Q: It’s hard to stay positive when you’re battling chronic fatigue. Any advice on staying upbeat?
Diana Klurfeld: If your mood is sour or negative or if you’re uptight or a perfectionist much of the time, this can be contributing to your fatigue. You must find ways to relax.
There are a few ways to do this. One way is to find something that you love to do and spend some time doing it at least twice a week. You should make this part of your self-care routine. It might be something as simple as reading a book, taking a bath, or painting a picture. Do something for yourself. Relax.
Another way is to meditate. Many people find that meditating centers them and helps them to feel relaxed and at peace with themselves. If you choose to meditate, try doing this every day for a few minutes. Most people who meditate find that 20 minutes seems to be that sweet spot.
Other people practice deep breathing techniques to reset their mind. This not only helps to relax you, strengthen your mind and your mood, and give you peaceful thoughts, but it will also help you through anxiety attacks should you face them.
Practicing relaxing your mind will not only help to reset your mood, helping you to be more positive, which will help your fatigue, but it will also help you sleep better, which will also help your fatigue. This is a win-win!
If You Don’t Find a Root Cause
Q: What if you’ve tried everything and still at a loss of what’s causing the fatigue?
Diana Klurfeld: If you try all of these and still have issues, it’s time to speak to your doctor. Explain to him or her what you’ve tried already and exactly how you feel. Be your own advocate. Speak up and tell your doctor if you feel there may be something more going on with you. Ask her to check for the other things mentioned above. She’ll let you know if you have cause for concern in those areas. If you do, she’ll test. If she doesn’t, you have to advocate for yourself again by doing the research online to find the tests you think you need and then ask your doctor to perform them.
Odds are, though, that changing your diet, exercise routine, sleep habits, and mood will improve your chronic fatigue. These are the first steps to overcoming the plague of fatigue when living with a rare condition.
** No part of this article is to be taken as medical advice, as the writer is not a doctor. If you think you have chronic fatigue syndrome, POTS, Ehlers-Danlos Syndrome, mast cell disorder, or any other rare disease, or are suffering from chronic fatigue, please see a doctor.