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 can 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 down.

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 CFSupport-owner@egroups.com, 410-647-7578 or 14404 Brookmere, Centreville, VA 20120.