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The feeling of being exhausted is prevalent among people who have fatigue, and it is likely to be a continuous companion for those who have hypermobility (especially with EDS).
Chronic fatigue is a contributing factor to poor health-related quality of life in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), and it shares symptoms with a condition known as myalgic encephalomyelitis (ME) or chronic fatigue syndrome, which is a combination of the above two. Some persons with ME/CFS are likely to have EDS or HSD that has not yet been diagnosed. Examining and testing for persistent tiredness in EDS and HSD patients should be done with care and attention to detail. Many factors can lead to exhaustion, including difficulties sleeping, long-term discomfort, and the body developing accustomed to being inactive for lengthy periods. While no one prescription can relieve fatigue, some drugs can assist. Treatment of fatigue should focus on preserving current abilities, offering support, screening for new issues, and examining potential new therapies, in addition to symptom management.
Fatigue Is Difficult to Quantify
It is referred to be chronic fatigue if a person’s fatigue has persisted for more than six months. Chronic fatigue is defined as persistent or recurrent fatigue that lasts for more than six months and is not explained by other conditions or the result of ongoing exertion that is not substantially alleviated by rest and that results in difficulty engaging in average levels of activity.
Fatigue may be a significant symptom in patients with hypermobile type Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) (HSD). Doctors can misdiagnose persons with ME/CFS who have hEDS or HSD, resulting in therapy that is less effective than it could be. Large, high-quality trials investigating the treatment of tiredness in patients with EDS or HSD are lacking. The few articles that provide recommendations are based on either short research or expert opinion, and neither is particularly helpful.
Because tiredness is a subjective experience that is difficult to define or cure, professionals are sometimes dismissive of the condition. On the other hand, chronic tiredness is a burden and has a negative impact on one’s quality of life.
Fatigue in EDS
In connective tissue disorders, EDS is the name given to a set of conditions defined by a lack of collagen, which weakens the strength of ligaments, tendons, muscles, skin, and blood vessels.
Fatigue is persistent among EDS patients who are hypermobile (hEDS).
Sleep difficulties, muscular deconditioning (loss of muscle tone and endurance), headaches, and dietary inadequacies are potential contributors to fibromyalgia development. Before proceeding, it is critical to rule out other possible explanations, such as anemia or persistent infection.
The majority of the time, chronic pain is the cause of exhaustion in hEDS.
Causes of Fatigue
Things that make tiredness worse or better, sleep disturbance, things that induce stress, and how the person with fatigue perceives their influence on their well-being should all be noted. In addition to being a probable cause of a person’s health difficulties, psychological well-being should be considered as a result of those concerns. A comprehensive physical examination and collection of all necessary information are essential in treating weariness, which is a sign of many disorders.
Poor sleep quality or chronic pain, the body is becoming accustomed to inactivity, problems associated with standing (fainting, low blood pressure, or rapid heart rate), digestive system issues (being unable to absorb enough nutrients from food), night time urination, anxiety and/or depression, and headaches/migraines are all common causes of fatigue.
Chronic tiredness may be caused by anything other than the usual suspects. Some of the warning signs of a severe and different condition that requires medical attention are weight loss, enlarged lymph nodes (which are felt as lumps under the skin, typically in the neck, armpits, and groin), high temperature, and night sweats; red, swollen joints; skin color changes; and a later age at which the condition first manifested itself.
Management and Care
There is no single best method for determining how tired you are. There may be another condition causing the fatigue, and it is the effect of that problem that is the source of the problem. The use of questionnaires to evaluate fatigue is one method, but possibly more important is the information gathered from patients who record their daily activities, their overall function, and any disabilities they may have. Patients’ activity journals can serve as a starting point for them to define objectives and measure their progress based on their accomplishment of these goals. Personal electronic gadgets that measure activity are now available, and they might be valuable for keeping track of how much physical exertion one is putting in.
Ways for Dealing With Fatigue in EDS
The majority of persons who have hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD) feel chronic tiredness, similar to that experienced by those who have other long-term diseases. The causes behind this are not entirely understood. While there is no simple cure for chronic tiredness, various coping methods may be used to alleviate the symptoms. Interestingly, chronic tiredness associated with hEDS/HSD and chronic disease is distinct from ME/chronic fatigue syndrome, even though they are both coping mechanisms for ME/chronic fatigue syndrome.
Your doctor should talk about the various causes of exhaustion, the consequences of fatigue, and the phases of therapy. While there is no specific therapy for tiredness, several drugs are beneficial in alleviating the symptoms of conditions that may be contributing to it.
For example, prescription analgesics and antidepressants meant to treat pain may also be used to reduce exhaustion secondarily. Managing autonomic cardiac dysfunction, high blood pressure, and frequent midnight urine may also be beneficial.
Other proposed methods of reducing tiredness include the following:
Stay Hydrated
Maintaining proper hydration is critical while attempting to combat fatigue since it helps to guarantee that blood is delivered to the brain on time. Having a sister ailment, such as postural tachycardia syndrome (PoTS) or orthostatic intolerance, since these disorders can also restrict the amount of oxygen and nutrients reaching your brain. In addition to water, electrolyte-rich beverages such as coconut water or sugar-free sports drinks can assist you in maintaining proper hydration. Urine should have a light golden color.
Maintain a Nutritious Diet
Fatigue can be caused by various nutritional deficiencies, including anemia (iron/hemoglobin shortage), vitamin B12 insufficiency, and vitamin D deficiency. Low vitamin D levels can become more of a concern during the winter months because you are exposed to less sunshine, which is necessary for your body to synthesize vitamin D. Having a nutritious and well-balanced diet will help you feel more energetic and avoid nutritional deficiencies. Taking a multi-vitamin supplement may also be beneficial.
Depending on whether you have gastrointestinal problems that result in malabsorption or taking medication that interferes with nutrient absorption (e.g., proton pump inhibitors, gabapentin, pregalabin), you may want to ask your doctor to check your nutritional levels. If you have a serious deficit, your doctor may recommend that you take a higher-dose vitamin supplement. Some people have reported that the supplements carnitine, co-enzyme Q10, and 5-HTP are also beneficial in combating fatigue, albeit the proof for this is anecdotal at this time. You should always consult your doctor before using supplements, especially if you are on any other medications.
Stay Away From Caffeinated Beverages and Sugary Treats
While coffee and sugar may temporarily help you feel less fatigued, they can make your exhaustion worse in the long run. Sugar and caffeine consumption must be reduced or eliminated to lessen energy swings and help you feel more steady and less weary.
Exercise
Although you may not like it, exercise may be pretty beneficial when experiencing exhaustion. It causes your body to release adrenaline and other chemicals that can help you feel more energized. You should begin by exercising softly and gradually increasing the amount of activity you can accomplish. It is crucial to prevent overexertion when you first start exercising. hEDS/HSD sufferers can benefit from various physical activities, including swimming, walking, and specialized physiotherapy.
Pace Yourself
Remember never to overdo it and take adequate rest in between activities, or you may pay the price the next day.
Good Sleep Hygiene
The majority of patients who suffer from hEDS/HSD report difficulty falling asleep and staying asleep. There are several things you can do on your own to make things better. You must establish a decent nighttime routine. Keep your sleeping schedule consistent (shift work can exacerbate the problem), and avoid using a computer or phone for several hours before bed (bright screens inhibit the release of a hormone called melatonin, which aids in sleep; the light from television should not have as much of an impact because you are sitting further away, but it may be beneficial to avoid watching television for several hours before bed as well).
Keeping your phone or computer away from your bed can also help you avoid distractions, and making sure there are no other distractions in the room will help you sleep better. In the few hours before night, taking a warm bath or drinking a warm (non-caffeinated) beverage, reading, or doing anything relaxing can all be beneficial. Caffeine, as well as any other stimulants, should be avoided for at least 4-6 hours before bedtime to ensure a restful sleep.
Pain is one of the variables that might contribute to sleep disturbances (also known as ‘insomnia’). Controlling pain is critical in the treatment of chronic conditions. Heat pads applied to painful joints before bedtime might be beneficial. If you think that pain is one of the primary reasons you cannot get a decent night’s sleep, it may be worthwhile to discuss pain management with your doctor to see if you can find a solution.
It is possible to obtain a pain medicine with a sustained release that works throughout the whole night in some instances. Sleeping pills may also be administered, although they are not typically recommended as a long-term cure because the body might develop resistance to their effects over time. Getting too much sleep might also make you feel more tired. Try to sleep for the same length of time each night since this will help you feel less fatigued and will help you get into a regular sleeping pattern. Most individuals require roughly eight hours of sleep; however, those suffering from hEDS/HSD or chronic exhaustion may require even more.
Brain Fog
Many persons who suffer from hEDS/HSD also experience cognitive fog. Their confusion, inability to absorb information, and forgetting things for no apparent reason are all common experiences. Although the exact etiology of hEDS/HSD has not been determined, it is believed to be related to the same factors that produce tiredness. Thus, managing exhaustion should also be beneficial when dealing with instances of brain fog.
It is believed that brain fog in people with hEDS/HSD is caused by a lack of blood supply to the brain, which is caused by blood pooling in the legs as a result of flexible veins. In order to corroborate this suspicion, further study will be required. Brain fog appears to be more prevalent among persons who have PoTS due to their hEDS/HSD, suggesting that there may be a relationship between the two conditions.
Several other factors may contribute to or exacerbate brain fog, and making a few minor adjustments to your daily routine may alleviate the situation.
Hormones can have an impact on weariness and mental fog. Brain fog is reported to intensify at specific periods of the menstrual cycle and during pregnancy by many women. Women who use some forms of birth control or hormone therapies may also notice that their symptoms intensify as a result.
Fatigue and brain fog can be caused or exacerbated by vitamin and mineral deficiencies. Making sure you eat a healthy, balanced diet is essential. If your symptoms are severe, your doctor may recommend that you undergo a blood test to see whether or not you have any particular nutritional deficiencies. Anemia (iron deficiency), B vitamin and vitamin D insufficiency, and potassium shortage are all examples of dietary deficiencies. In conjunction with prescription medicine, taking supplements if you have a deficiency can help alleviate the symptoms. However, it is crucial to consult with your doctor before taking any drugs or supplements, especially if you have already taken prescribed medication.
Some medications can produce weariness and mental fog, which are both unpleasant side effects. Some antihistamines, cough medicines, pain relievers, and antidepressants fall into this category. If you are concerned that they may be causing you issues, you should consult with your doctor about the matter. Changing the drug to one that does not cause such adverse effects may be an option for your doctor to consider.
Other medical issues may be contributing to your exhaustion and brain fog. Diabetes, heart disease, hypothyroidism, alcohol or substance misuse, emphysema, and obesity are examples of such conditions. Symptoms of these illnesses can be alleviated by appropriately managing them.
