Living with Orthostatic Intolerance (OI) and ME/CFS
Orthostatic intolerance occurs when the systems responsible for keeping the blood flowing properly in your body as you stand break down. The most basic recommendation regarding OI is to avoid situations that stress these the systems.
These situations either require your blood vessels to narrow for long periods of time or do the opposite – prompt them to open up (or dilate). Either can cause blood to pool in your lower body – reducing blood flows to your brain – and causing you distress when you stand.
You’re probably aware of many of these but some may surprise you. Because eating a large meal causes massive amounts of blood to flow to the gastrointestinal system – thus reducing blood blows to the brain - its better to eat small meals. Since the autonomic nervous system plays a key role in both orthostatic intolerance and the ‘fight or flight’ response its good to avoid stressful situations.
Avoid These Situations (they make it difficult for your blood vessels to narrow)
- Standing in place for long periods
- Getting dehydrated
- Emotionally disturbing situations (fight or flight response)
- Situations that are over stimulating
- Narcotic medications such as codeine, morphine, oxycodone and anti-emetics such as Phenergan, Compazine
- Be careful with tricyclic antidepressants (e.g. amitriptyline, nortriptyline); they may be suitable in low doses
- Days around the start the menstrual period
Avoid these situations as well (they open your blood vessels too widely)
- Sitting in place for long periods
- Hot tubs, saunas and lying on the beach
- Other hot environments and hot showers
- Eating large meals
- Drinking alcohol
- Sitting in high chairs
Sitting and Standing
Postures that contract your leg and abdominal muscles can help because they push blood out of areas it has pooled in and back into the circulation. Most of the postures below do just that. Do what you can throughout the day the day elevate your feet to get blood to return to your heart.
- Standing with your legs crossed or with one leg on chair
- Sitting with one or both knees up
- Leaning forward when sitting or standing
- Sitting in a low chair (brings legs up, contracts abdomen)
- When standing fidget around, move your weight from one leg to the other, tense your calf muscles and gently squeeze your abdominal muscles
Elevate (yes, elevate) the head of your bed at night slightly (10-15 degrees). This would seem to increase blood pooling but actually it aids in fluid retention (blood volume) – an important aspect for OI patients who often have low blood volume.
Alexander Calder, a POTS patient, asserts studies suggest that this may be inadvisable in a subset of POTS patients whose blood pressure falls when they’re asleep.
Mornings are often rough for ME/CFS patients. The National Dysautonomia Foundation (NDF) recommends that OI patients drink a glass of water before they get out of bed. Since showering often increases symptoms consider taking your shower at night rather than in the morning (and stay away from hot showers.)
Because submerging yourself in water tends to tighten your blood vessels ( a good thing) and improve lymph flow consider taking cool baths rather than showers. Rosemary (50 grams at a low boil for 30 minutes in a liter of water) added to your cool bath water in the morning may help.
Wear Tight Pants – Very Tight Pants
It seems bizarre that wearing tight clothing can increase blood circulation but since doing so forces blood out of the areas it’s pooled in, it can.
Force the blood vessels to do their job by wearing tight fitting ‘clothes’ such as anti-gravity ‘G-suits’, military anti-shock trousers, medically prescribed Jobst support stockings or even waist high support hose or knee high support socks. Given their ability to stop blood pooling in both the abdomen and legs G-suits may be the best option.
- Dig Deeper! – A Complete Guide to G-suits – A wonderful website from an ME/CFS patient who has gotten great relief from using a G-suit
Dr. Natelson suggests patients use the highest compression available (30-40 mm.) when using Jobst stockings. DINET recommends BrightLife Direct for affordable compression hosiery. The NDF suggests trying L’eggs for people with varicose veins in a size smaller than you’d usually use. If you’re not into the above suggestions you might try tight bicycle pants. Go Victorian with a corset or abdominal binder or girdle (one size smaller than usual) in order to prevent blood from pooling in that area. Some online resources are below.
Several types of orthostatic intolerance occur in ME/CFS and some treatments will work well with some types and not with others. Wearing ‘tight pants’ does not seem to work as well in people whose blood pressure falls drastically when they stand (orthostatic hypotension) as in those people whose heart rate (‘POTS’) increases when they do.
Exercise is problematic in ME/CFS but many patients can increase their fitness and well-being if they engage in the right type of exercise program. Dr. Rowe reported of one patient who after beginning at two minutes of exercise a day was able to safely work her way up to 30 minutes three times a week. For the very disabled simply tensing and relaxing the muscles throughout the day can be helpful (and is a good stress reduction exercise).
The ‘muscle pump’ tightens up the muscles in our legs in order to limit the amount of blood that can pool in them when we stand. Some exercise is needed to keep the ‘muscle pump’ in the legs functional. Some studies suggest that rather significant leg muscle deterioration may be occurring in one subset of ME/CFS patients. Even small amounts of exercise can prevent muscle deterioration.
One way to enhance the muscle pump is to do calf raises: stand up, lift your heels from the ground (feel those calves tighten?) and then stand down. Another way is to wear light (1-2 lb) weights around the ankles.
Studies have shown that blood also tends to pool in the abdominal areas of some people with chronic fatigue syndrome (ME/CFS). While you’re standing simply gently tightening your abdominal muscles will redirect some of that pooled blood to the rest of the body.
- Dig Deeper! Check out the ‘Yaz’ Exercise page for more suggested exercises
- Dig Deeper! An exercise protocol for Chronic Fatigue Syndrome (ME/CFS) patients.
Because water compresses the limbs thus pushing the blood upwards jogging or walking in water may be particularly helpful. Dr. Cheney reports hydrotherapy involving standing in water may assist lymphatic activity as well. For the very severely ill simply standing in water up to their shoulders or neck can be helpful.
Between the changes in air pressure, very dry air in the airplane, the occasional long lines and the overall stress involved in traveling, air travel can pose problems for people with OI. The NDF suggests that you consider loading up on fluids and salt beforehand, wearing earplugs, taking anxiety reducing medication, getting bulkhead seating, requesting a wheelchair and taking a rest day off afterwards.
- Menstrual Period - Some women experience a flaring of their symptoms during their menstrual. Dr. Blitshteyn of the Mayo Clinic recommends they consider increasing or supplementing their medications in the week before their period starts.
- Pregnancy – some women with OI report feeling much better during pregnancy – possibly because of blood volume expansion).