By Toni Marshall
and Elly Brosius, MS
People with CFIDS often have orthostatic intolerance (OI), a condition that
affects the body’s ability to maintain proper heart rate, blood pressure, body temperature,
digestion, alertness and respiration. Symptoms usually develop after prolonged standing or sitting and
include irritability, irregular sweating and/or feeling suddenly hot or cold, nausea, cold
hands, blurred vision, swallowing problems and memory difficulties.
Simple acts, such as brushing your teeth or cooking a basic meal, can trigger
OI symptoms. But through years of experience, we’ve developed strategies that
may lessen or even prevent an OI episode. Here are some suggestions:
Shop, don’t drop
Standing while chatting, waiting in line
or doing chores can bring on OI symptoms. Many people with CFIDS (PWCs) find
that they can minimize their chances of experiencing OI symptoms by adding
movement to their tasks. If you’re washing dishes, for example, scrub a couple
of pots and then walk around the kitchen table to put something else away. Avoid
standing over the sink and using hot water for more than 2–3 minutes at a time.
Shopping can be a real challenge for PWCs with OI. Standing still to read
labels or wait in line often causes waves of symptoms. Many PWCs start doubting
the need for items they’ve put in the cart. They become desperate to leave,
overheated, embarrassed, flustered and frustrated. The urge to get moving is so
great that some leave without finishing their shopping.
To improve your shopping experience, always use a cart, because carrying even
light items can trigger symptoms. Immediately remove your coat or sweater when
entering the store to avoid overheating. Bring a folding stool, or use a
facility-provided wheelchair/scooter. Sports Authority sells sturdy, portable
golf stools for about $20. Ask management for help, too. Some stores will
provide an employee to stand in line for you, or let you go to the head of the
line. Calling ahead makes it less stressful for all.
Be laid back
Sitting upright causes the blood to drain
from the brain and heart, a trigger for OI. Instead of just sitting, try a
semi-reclining position, with your head supported and your legs elevated, knees
slightly higher than hips.
Reclining reduces gravity’s strain on the circulatory system. Of course, this
can prove difficult while working at a desk job, driving, eating out or using a
desktop computer. We’ve found that the keys are to look for reclining
opportunities and to commit to frequent breaks.
When driving or riding in a
car, try reclining the seat, cranking up the air conditioner or fan, supporting
your head with a rolled towel or pillow or pulling the seat closer to the
dashboard to raise your knees. Make frequent stops to walk around.
People with OI often get lulled into sitting too long when working. We get
calls from people in a fresh relapse who protest, “But I only worked at my
computer for a few hours!” Unfortunately, it doesn’t take much to trigger OI.
Try using a high back chair that tilts back, and use a slanted foot rest.
Rearrange the computer so you can work in a more reclined position. Laptops help
if used when reclining. When possible, print out text and read it while
reclining rather than reading off of the screen. Recline when you talk on the
phone. And use a pencil
or space pen (sold at
www.worldpen.com) for writing while lying
Eat, drink and be wary
Certain foods, especially milk,
soy, gluten and excess carbohydrates, may trigger OI symptoms in some people. In
addition, sugar, caffeine, alcohol, some supplements and hot peppers can alter
blood circulation. Discovering which foods trigger your OI symptoms can be a
challenge. To help identify food sensitivities, write down what, when, and how
(upright?) you eat, how you feel and when you feel it throughout the day.
Symptoms may take days to appear. With careful monitoring, Elly found that just
four ounces of caffeinated water (1-888-WATERJOE) every morning helped her to
hold her head up into the evening instead of flopping over at 4:00 p.m. She also
has suffered less severe post-menstrual headaches. More than four ounces,
however, ruined her sleep.
Intravenous (IV) fluid replacement once a week may help some PWCs with OI.
Consult with your physician to see if this is possible for you. We fare best
with lactated Ringer’s solution. A very low dose of heparin increased both of
our own abilities to remain upright longer and our cognition.
Squeeze, don’t sneeze
To minimize OI symptoms, employ
available tools and control your environment. For example, support hose
(tax-deductible) are a great tool for combating OI, even if you wear them only
an hour or two a day (Hosiery Hotline 800-849-2497). Improving muscle tone in
the back, abdomen and legs is like giving yourself internal support hose. Start
low and go slowly with hose strength and with any exercises. Back off if
necessary. Doing one repetition of one exercise once a day is infinitely more
helpful than doing none.
In summer, keep the inside temperature at a cool 68 degrees and wear a
sweatshirt. In winter, moisturize the air to preserve body fluids; Vornado makes
a low maintenance humidifier. Wear polarized sunglasses and a wide brimmed hat
to help with sun and light sensitivities.
Allergies make OI worse. Histamine, released when you are exposed to an
allergen, is a potent vasodilator that interferes with circulation. Itching,
sneezing, and congestion are the hallmarks of excess histamine, but symptoms may
be subtle. Consistently taking a non-sedating antihistamine (that does not drop
your blood pressure or crank up your heart rate) along with the prescription
expectorant guaifenesin, which keeps internal fluids moving, can reduce allergy
and OI symptoms and make you feel better in general.
Addressing seemingly unrelated issues can also improve OI symptoms. For
example, Elly found that her long, narrow, flat feet make her knees and ankles
roll, impairing her balance and causing pain. By wearing shoes (New Balance 841)
that provided stability, she was able to succeed at leg strengthening exercises
that lessened her OI.
It is natural to want to look, act, and be normal. But face it: OI makes us
different. It is not normal to leave a store in a crisis or to use a portable
stool at the checkout — but the latter gets the shopping done, builds confidence
and honors you and those around you.
Working within your energy envelope saves your body’s natural resources.
Giving up something now, or for a year, or for six years, does not mean forever.
You can spend precious energy physically pushing beyond your current capacity,
being upset, hiding your condition or hiding behind your condition.
Alternatively, you can make peace between you, your body and your condition, and
find that a good life with CFIDS/OI is possible.
This article was written on a laptop, while conferring by speakerphone,
using space pens by reclining facilitators of the Northern Virginia CFS Support
(Hose) Group. Toni Marshall lives near Annapolis, Md. She has had CFS since 1993
and OI since early childhood. Elly Brosius, of Centreville, Va., has had CFS
since 1991 and OI since age 11.
Reach them at
410-647-7578 or 14404 Brookmere, Centreville, VA 20120.