Orthostatic Intolerance ( OI ) and the Chronic Illness CFS /ME

Do you often feel dizzy, loss of strength in muscles, palpitations, chest tightness, difficult in breathing, and sensations you are about to pass out? If so read on because you are probably suffering from the condition known as Orthostatic Intolerance (OI )
Orthostatic what? I hear you say, never heard of it ? neither had I until I started looking into the above symptoms to see what may be causing them. CFS / ME causes low blood pressure and therefore low blood flow throughout the heart and reduced blood flow to the brain. OI means that when we stand or sit for extended periods of time the blood doesn't flow properly to our brain and heart causing the above symptoms. My hubby often asks me if I'm ok because of the frequent gulps of air I take in - I'm not aware I'm doing it but he finds it the most disturbing of the symptoms I experience.
There are at least two forms of OI associated with CFS/ ME, NMH and Postural Orthostatic Tachycardia syndrome ( POTS ), thank goodness for abbreviations I say. NMH is a sharp drop of at least 20 - 25 mm HG in systolic blood pressure when standing . POTS is a rapid increase in heart rate ( pulse ) of more than 30 beats per minute (bpm) from baseline, or more than 120 bpm total during the first 10 minutes of standing. It is also known as Chronic Orthostatic Intolerance or ( COI )
Common Symptoms of OI
Certain orthostatic symptoms have been linked to blood pressure and heart rate change associated with NMH and POTS such as nausea, fatigue, dizziness, breathing difficulties, headaches, sweating, swollen or bluish legs which provide evidence of blood pooling in the lower part of the body. These symptoms can be brought on more quickly and made worse by being in warm environments such as saunas or even sunbathing, so it really is a case of keeping your cool.
Most doctors are familiar with orthostatic hypotension ( OH ) which often results in fainting shortly after standing and can be checked simply in the surgery by taking your blood pressure while lying down and then taken again after standing. The fainting symptoms become apparent with OH within the first few minutes after standing. CFS / ME sufferers with NMH or POTS often have a delayed form of OI meaning the heart rate and blood pressure changes don't develop for many minutes after standing making the standard test for acute OH ineffective in diagnosis.
There are several causes of NMH and POTS relevant to CFS / ME but they have one in common, they all lead to inadequate blood circulation that reduces the amount of blood getting to the heart and brain. In healthy people when they stand, gravity causes the blood to flow to the abdomen and legs, resulting in a decrease in blood flow to the brain. In CFS / ME sufferers with POTS the blood flow to the brain decreases more prominently when standing.
In response to this reduction the brain releases chemicals that alter the pulse rate and blood pressure in an attempt to get the blood flowing upwards again. When this chemical response is accentuated, as in POTS and NMH sufferers of CFS / ME, a rapid heart rate, low blood pressure and sometimes as picked up by my hubby " breathing difficulties " follow.
Various treatments can help to alleviate some of the symptoms but rarely fully cures the problem. The first line of treatment should be non - medical because the use of certain drugs can make some of the symptoms of CFS / ME worse. So what can we do to help ourselves improve the situation.
Things to Avoid
Standing still for long periods of time without moving.
Sitting in the same place and position without moving for long periods ( most likely cause of me feeling so bad on my recent day out ) see attached link
Avoid dehydration, emotionally disturbing situations, saunas and other warm or hot environments, alcohol ( I find I can no longer tolerate even small amounts of alcohol ).
Stay away from starchy high sugar foods they tend to worsen symptoms.
Avoid over stimulating situations.
Things to do to help
Drink a glass of water before getting out of bed, then drink a glass of water every two hours aiming to drink over two litres of water a day, drink more during hot weather.
Take a cool bath with knees bent and arms by your side, this improves blood pressure and lymphatic flow which returns blood to the brain quicker, it also avoids showering which can provoke symptoms by the combination of standing still and a warm environment.
Elevate your feet to help blood return from your extremities and back to your heart and brain, also raise the head slightly when sleeping this helps the body retain more fluid rather than losing fluid into urine.
When sitting try to contract your legs and abdomen muscles. Sit with one or both knees up, leaning forward when sitting and try squatting , they all help to push blood out of your lower body and back into circulation in the upper torso.
Light exercise can be difficult for we CFS/ ME sufferers but trying to do a little exercise can be helpful and beneficial, simply tensing and relaxing muscles can avoid stiffening up and helps blood flow. Some exercise is required to keep the " muscle pump " in the legs functioning this helps to prevent blood pooling in the legs when standing. A simple exercise to do are calf raises, stand up, lift your heels from the ground and then relax back down repeat as many times as you can comfortably manage.
Increasing your intake of natural salt ( not processed table salt ) along with fluid intake can increase your blood volume which is low in many CFS / ME sufferers, this increases the blood flow to your heart and brain. A word of caution here, you should never increase your salt intake without consulting your doctor first incase you have high blood pressure. Failure to do so could result in serious health consequences.
Wearing waist high compression stockings or support stockings can help to push blood from the legs back into the torso ( same principle as when you have an operation ) and you are made to wear those support socks.
Avoid large meals at night, the digestive system requires added blood flow which draws fluids away from other body functions. Always eat smaller meals throughout the day.
Air travel can cause problems for CFS / ME sufferers as experienced by myself shortly after being diagnosed I went on a pre-arranged short flight of two hours. The combinations of standing in lines to check luggage in, passport and security checks, changes in air pressure, little room to move my legs due to being on a budget flight and general stress of travelling, resulted in me experiencing an almost total blackout with violent shaking which was so debilitating it resulted in me being taken off the plane in a wheel chair.
In order to minimize the same thing occurring I would recommend the following: drink plenty of fluids prior to flying, take advantage of wheelchair facilities at booking in controls to minimize standing times, wear support stockings during the flight, get the maximum leg room your budget will allow and try meditation during the flight to prevent stress and finally carry out some simple foot exercises to keep the blood flowing.
As you can see there are many things you can try to avoid and many more things to try to help alleviate some of the symptoms associated with Orthostatic Intolerance so let me know how you get on. You may know of other things to help with Orthostatic Intolerance which we could publish on the site to help fellow sufferers. If so go to the contacts page and leave a comment

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