Not the most catchy title I admit but read on if you have ME/CFS, or a teenager with it, or unexplained anxiety.
If there is one thing worse than having ME/CFS, it is watching your child go through it; their life and education on hold, unable to leave the house, with little support or understanding. If I had found this information earlier, I may have been able to help my son more, I hope it helps you.
ME/CFS and POTS
The IOM’s (Institute of Medicine) new definition of ME/CFS or SEID (systemic exertion intolerance disease)
- A substantial reduction in activity
- More specifically: A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest
- Post exertional malaise
- Unrefreshing sleep
- Either cognitive impairment or orthostatic intolerance
POTS or postural orthostatic tachycardia syndrome has a lot of symptom overlap with ME/CFS and may be one cause of it. Sufferers cannot tolerate moving from a lying position to an upright position – that is the orthostatic part – as it causes an abnormally large increase in heart rate, called tachycardia and brings on symptoms. Symptoms include “headaches, fatigue, palpitations, sweating, nausea, fainting and dizziness”. They often feel short of breath.
In POTS, blood pooling can occur in the extremities, and feet can appear mottled and purplish in colour due poor circulation as blood vessels being too weak and “stretchy”; heartrate increases to try to compensate and improve circulation, as not enough blood and oxygen is getting to the brain.
“ PoTS may be under diagnosed in those with chronic fatigue syndrome (CFS) and is estimated to affect around 25-50% of people with CFS. It has been suggested that these two conditions may be part of the same group of conditions with similar causes”.
Dr Phil Fischer of the Mayo clinic summarises POTS in this useful 5 min video. He mentions mono or mononucleosis. We call it glandular fever in the UK and it is caused by the Epstein-Barr Virus (EBV). POTS has only quite recently been studied and recognised in teenagers.
POTS could be causing a lot of the chronic fatigue in teenagers, and it is treatable. (Also common in 30-50 age group in women).
Causes of POTS
Taken from POTSUK, a great website resource.
- Abrupt onset may follow infection, pregnancy, surgery, immunisation or trauma. May be auto-immunity.
- Developmental PoTS affects teenagers (gradual onset around age 14 with symptoms peaking age 16) and 80% resolve within a few years.
- Hyperadrenergic PoTS – (genetic defect)
- Deconditioning (e.g. after prolonged bed rest following illness)
- Joint Hypermobility Syndrome an inherited multi-system connective tissue disorder.
- Other medical conditions – diabetes, amyloidosis, sarcoidosis, SLE (Lupus)
- Poisons – alcohol, heavy metals
- Cancer or chemotherapy
Joint hypermobility and POTS
Interestingly joint hypermobility can cause secondary POTS. About 20% of the population have joint hypermobility, many have no symptoms but others suffer from POTS and extreme exhaustion, as well as joint dislocations and digestive problems and a range of other symptoms. They have a defect in collagen in connective tissue causing lax ligaments and weak blood vessels that allow pooling of blood in the legs. This pooling may lead to exaggerated cardiovascular responses to maintain the output of blood from the heart.
Joint hypermobility and anxiety
“When the heart has to work extra hard just to circulate blood, it brings the entire body to the verge of a fight-or-flight reaction, with increased pulse and hyperventilation, requiring very little to set off panic”.
Moreover, individuals with joint hypermobility had a bigger amygdala, a part of the brain that is essential to processing emotion, especially fear. So joint hypermobility is linked with anxiety and this may be an interesting example of a purely physical disorder being the cause of mental health problems.
So heart rate increases, activating the sympathetic fight or flight rather than the parasympathetic rest and digest branch of the autonomic nervous system, so dysautonomia.
Breathing retraining for hyperventilation (Buteyko) is likely to help in these cases, it is excellent for rebalancing an imbalanced autonomic (involuntary nervous system) and quickly relieving anxiety.
The POTS control methods below may also be of use.
Non-medication control of POTS
There are many things to try from compression stocking to reduce blood pooling in the legs, to increasing blood volume by increasing consumpion of salt (preferably unprocessed sea salt rather than table salt) and water, taking care to regulate body temperature, being careful to get up slowly, sit down if you feel dizzy, and many other tips and tricks, very well described here; look in the “living with POTS section”. One of them is exercise, see below.
Exercise for POTS
Deconditioning due to exhaustion and feeling ill after exercising can make the situation worse, and exercise is indicated for POTS sufferers, but initially only in a horizontal position as in some Pilates exercises, or on a recumbent bike for example, slowly building up to using an upright bike and other exercise.
Exercises to strengthen leg muscles to help pump blood and stop pooling in the legs would also be useful.
Here is a great exercise that could do just that, does not need special equipment, and it can be done lying down, (the second one in, foot circles and point flexes); pay careful attention to the instruction and alignment, and see if you can gradually work up to doing 40 of each.
Medications for POTS
If non-pharmacological approaches don’t work, medications are available. Drugs that slow down heart rate such as Beta blockers tend to be effective for many. More information on medications can be found here.
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