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Fatigue and EDS-H / JHS
What are the causes of fatigue in symptomatic-hypermobile patients?
In non-hypermobile people, joints are held firmly in place by the ligaments. Current thought is that in hypermobile people their ligaments tend to be more stretchy, therefore, muscles have to take on part, or all, of the work in order to compensate. Having to work so much harder means that the body’s muscles fatigue far more easily and more quickly than those in someone who is not hypermobile, leading to an over all feeling of fatigue.
Apart from being more prone to noticeably obvious injuries, such as joint instability and, or, dislocation, in symptomatic hypermobility it is thought that the collagen related areas of the body are subjected to 'plentiful micro-injuries' (microscopic strains/tears etc.), a cycle in which the body is trying to heal whilst continuing to receive microscopic injuries, leading to physical fatigue.
It is also thought that over time these 'plentiful micro injuries' may over-stimulate a hypermobile person’s pain pathways, leading to the malfunctioning of the pain signaling system and, in turn, the chronic pain syndromes from which so many symptomatic hypermobile people suffer. (Explained to me by Professor R. Grahame, Hospital of St. John and St. Elizabeth)
It is extremely important for people with symptomatic hypermobility to manage their fatigue by learning to pace the amount of activity they do, thus avoiding cycles of ‘boom or bust’. By the time they are diagnosed some people may have already learnt to limit how much they do each day, in order to make sure they have sufficient energy reserves to get through the following day. However, many do not and, instead, make the mistake of doing as much as they can ‘when they are feeling up to it’ and then paying for it by ‘crashing’ later, or the following day.
It is important not to confuse ‘pacing yourself’ with not exercising at all. The key to management of fatigue is to establish a baseline level of activity that can be repeated each day with no exacerbation of symptoms. It is important that the patient understands that this does not necessarily equate to a symptom-free day. The aim is to avoid the typical boom (high –activity day) and bust (low-activity day with exacerbation of symptoms) pattern. Properly monitored exercise under this regime can be extremely beneficial. Muscles in those with EDS-H / JHS have to work at least twice as hard as those in a non-hypermobile person, just to achieve the same tasks. An exercise programme is therefore very important to try and ensure muscles are kept 50% stronger than in people without this condition.
Another cause of fatigue in symptomatic-hypermobile people can be triggered by a malfunction of the autonomic nervous system (Dysautonomia) from which many people with EDS-H / JHS suffer.
Dr Alan Pociniki explains this as follows:
'The autonomic nervous system regulates all body processes that occur automatically, such as heart rate, blood pressure, breathing, and digestion. To compensate for stretchy blood vessels and increased venous pooling (too much blood collecting in over-stretched veins) most people with hypermobility appear to make extra adrenaline, which may account for the high-energy, always-on-the-go lifestyles of many hypermobile people. Unfortunately, if you get too tired, your body responds by making more adrenaline, so you keep going, not realizing how tired you really are. It appears that as you get more and more run down, your body gets more sensitive to adrenaline, so the small amount you have left can produce the same response a larger amount used to, so you still don’t feel tired even when you are. Even when you do feel tired, you may continue to “push through” the fatigue, collapsing when the adrenaline wears off. Years of not feeling, ignoring, or pushing through fatigue may be one factor in the development of illnesses like chronic fatigue syndrome' (Quote: Dr Alan Pocinki MD, PLLC 2010).'
Hypermobile people often struggle to sleep due to pain or, what many describe as, an inability to get or stay comfortable. Stimulated adrenaline caused by anxiety, stress and pain can also have a detrimental effect.
‘If they are able to fall asleep, they may continue to make too much adrenaline overnight, giving them a shallow, dream-filled sleep, so that they wake feeling unrefreshed. Pain further stimulates adrenaline, making restful sleep even more difficult. When studied in the sleep lab, they often have a relative and sometimes complete lack of deep sleep, and/or an increased number of sleep-disrupting “arousals.” Poor sleep can cause irritability and fatigue, which in turn can trigger more adrenaline (to try to overcome the fatigue), which in turn can make sleep worse. This vicious cycle can eventually cause serious disability. (Quote: Dr A Pocinki MD)
Good Sleep Hygiene should be encouraged
establishing fixed times for going to bed and waking up (avoid sleeping in after a poor night's sleep)
trying to relax before going to bed
avoiding use of computers, video games and tv in the hour before bed.
maintaining a comfortable sleeping environment (not too hot, cold, noisy or bright)
avoiding caffeine, nicotine and alcohol late at night
avoiding exercise within four hours of bedtime (although exercise in the middle of the day is beneficial)
avoiding eating a heavy meal late at night
avoiding watching or checking the clock throughout the night
'When these measures fail, then medication is indicated, since virtually every system in the body is strained when you don’t get a good night’s sleep.' (Quote: Dr A Pocinki MD)
Not sleeping well not only makes you tired and irritable and can affect your mood, it also affects mental functions like memory and concentration, and has recently been shown to be a major contributor to weight gain in some people. Besides treatment for sleep apnea and limb movements when these are present, medications specifically for hypermobility-related sleep problems are often helpful.
As mentioned earlier, one possible explanation for the frequent arousals and lack of deep sleep is that patients are making too much adrenaline at night, just as they often are during the day. Some patients (however), unfortunately seem to make too little during the day, waking tired and dragging through the day, only to get a “second wind” of energy (or a “first wind” for many!) at 9:00 or 10:00 at night, just as they are trying to wind down and get ready for bed. Heart rate monitors showing increased fluctuations in heart rate and occasional sudden increases in heart rate corresponding to arousals and awakenings lend support to this theory, as does the observation that medication to block or offset extra adrenaline helps many patients get a better night sleep. Adrenaline-blocking medications include various types of beta blockers, while medications like Valium (Diazapam) and Ativan work partly by raising the levels of calming chemicals in the brain to offset the extra stimulating ones. Also, since chronic pain is so common in this patient group, appropriate pain medication at bedtime is often essential to achieving a restful night’s sleep. (Dr. Alan Pocinki MD)
Fatigue appears in EDS-H / JHS as the result of multiple factors, including dysautonomia, muscle weakness, micro-injuries, traumatic injuries (dislocations etc), poor sleep, respiratory insufficiency, over use of (or side affects from) analgesics, malabsorption in the intestines, reactive depression/anxiety. Treatment at a multi-disciplinary unit specilising in EDS-H / JHS would include lifestyle recommendations in addition to any medications or medical investigations prescribed (see 'Resources and Links' section of main menu).
References: For references and information sources used within this site, please see 'References' page, under 'Resources and Links' on the main menu.