Q: I have fibromyalgia and have begun feeling lightheaded, dizzy & nauseated when I stand up - have to lean against the wall for a bit. My doctor said my BP was fine (only sitting down though) and I wonder if there’s something I can do; some other testing?
A: People with disorders involving the autonomic nervous system, such as fibromyalgia and “chronic fatigue syndrome” (ME/CFS) often have problems maintaining blood pressure in an upright position.
“Near-syncope” is the result of the dysfunctional autonomic nerves that cause fluctuations in our blood pressure, especially when we go from a sitting to a standing position. (The autonomic nervous system maintains the "automatic" bodily functions performed by many organs, muscles and glands, and drives responses to physical or emotional stress - fight or flight.)
People with near-syncope and FM and/or ME/CFS do not have loss of consciousness (true syncope), but we get a lightheaded feeling as if we are about to faint but we don’t actually faint.
We have unsteadiness, a feeling of weakness or fuzziness without loss of consciousness. This is often synonymous with orthostatic hypotension or orthostatic intolerance. [Orthostatic means “standing upright.”]
With orthostatic hypotension or intolerance, the blood pressure drops when we change positions because we tend to overshoot and undershoot nerve responses to the blood vessels when we change positions. Thus, we are more at risk for fluctuations in our blood pressure, particularly a drop in our blood pressure, when we change positions.
Increased stress and certain medications including muscle relaxants, antidepressants and migraine medicines make us more at risk (on top of the risk we have with fibromyalgia & ME/CFS).
Evaluation of Near-Syncope…
can include checking blood pressure and pulse in the standing and lying down positions and examining the heart. An EKG, cardiac stress test, and tilt table testing may need to be considered.
The tilt table test is one of the ways to confirm orthostatic hypotension and document dysfunctional autonomic nerves as the cause.
An individual having a tilt-table test lies down flat on a table and is monitored. The table is then slowly tilted up and the blood pressure, pulse, and EKG are continuously monitored for any changes [see video ]. In people with FM/ME/CFS, about 25% have a significant drop in blood pressure and an increase in pulse rate.
Scores May Be Distinctive for ME/CFS
Dr. J.E. Nachitz published a study in which he performed a head-up tilt-table test of 40 persons with chronic fatigue syndrome [compared with 41 fibromyalgia patients, and various other groups, see “The head-up tilt test with hemodynamic instability score in diagnosing chronic fatigue syndrome”]. He found a distinct hemodynamic instability score - a measure of blood pressure and change - in tilt test, and the results of those with CFS may differ from those with fibromyalgia taking the same test. There seems to be a distinctive dysautonomia (or dysfunctional autonomic nerves) in chronic fatigue syndrome that is different from other conditions causing fatigue – even fibromyalgia – according to Dr. Naschitz.
Treatment of Near Syncope Includes the Following
1. Drink Extra Fluids.
Many times we are subclinically dehydrated, meaning we haven’t been drinking enough fluids each day. If we do not have enough blood volume we are more at risk for a drop in our blood pressure and thus more at risk for near-syncope. I recommend 64 ounces of water (8 glasses) per day.
2. Increase Salt Intake.
Sodium helps maintain our blood pressure and thus helps prevent decreased blood pressure in near-syncope. Many people are so concerned about salt intake because they think it is bad that many times they don’t take enough salt.
Too much of anything can be bad, including too much salt, but if we are bothered by near-syncope it is recommended that we be more liberal with our salt because extra salt will help keep our blood volume up and decrease the risk of hypotension or near-syncope.
A trial of 2 to 6 grams of extra salt a day may help.
3. Prescribed Special Diuretic.
Florinet (fludrocortisone) can be prescribed in severe cases of near-syncope. This is a salt-retaining diuretic that acts to increase blood volume and hold up our blood pressure.
4. Beta Blockers Such as Metoprolol.
It may seem like a paradox to treat someone with low blood pressure with a blood pressure medicine. Beta blockers block beta nerve signals from the autonomic nerves. If someone has hypertension (high blood pressure) blocking the beta nerves can help reduce blood pressure.
However, these beta nerves are thought to play a major role in causing the low blood pressure in near-syncope, so blocking these beta nerves with a beta blocker can help reduce near-syncope episodes by stabilizing the blood pressure.
5. Compression Garments
Tight-fitting leg garments or stockings (e.g., thigh-high TED hose or Jobst® stockings) can help minimize orthostatic blood pressure changes by decreasing the amount of “pooled” blood in the legs.
Gravity forces tend to pull the blood into the legs more when standing, increasing the risk of an orthostatic drop in blood pressure. The stockings press the blood from the legs and keep it in the body’s trunk – the main blood “pool,” to help maintain the blood pressure.
6. Posture Change Strategies.
Often times it is the sudden change from sitting to standing that triggers the autonomic-mediated drop in blood pressure (near-syncope). A treatment strategy is to eliminate any sudden changes in posture. This means gradually changing positions.
For example, when first getting out of bed in the morning, one should:
• Sit in bed tor 15 to 30 seconds first,
• Then swing the legs over the edge of the bed and sit there for 15 to 20 seconds,
• Then plant the feet on the floor and stand up slowly but stay next to the bed for 15 to 30 seconds,
• Then start walking.
This gradual step-wise process can help eliminate near-syncopal episodes.
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If you want to know more, see also:
• The CFIDS Association of America’s handout offering tips for coping with orthostatic intolerance during hot weather, when symptoms may be worse. To quote the August 2008 CFIDSLink e-newsletter: “Many people with CFS experience orthostatic intolerance - problems with upright posture that can include dizziness, feeling faint, muddled thinking, increased fatigue, nausea and profuse sweating. These symptoms can be worse in warm temperatures, so we offer these tips to cope during the summer months (and year round, if needed).”
• Phoenix Rising (www.aboutmecfs.org) Founder Cort Johnson’s encyclopedic article, “The Perils of Standing: Orthostatic Intolerance and Chronic Fatigue syndrome (ME/CFS)” - a highly detailed description of how the autonomic nervous system deals with changes in bodily position normally and in those with orthostatic problems, as well as ME/CFS-related variations, tests and studies.
• Information Provided by Some Leading Orthostatic Intolerance Research Centers
Vanderbilt Medical Center Autonomic Dysfunction Center, Nashville, TN
New York Medical College Center for Pediatric Hypotension, Valhalla
New York University Dysautonomia Center
National Institute of Neurological Disorders and Stroke, Bethesda, MD
* Dr. Pellegrino, himself a fibromyalgia patient, has seen more than 20,000 patients with FM and associated illnesses in his practice at the Ohio Rehab Center, and has been a fibromyalgia patient himself since childhood. This information is excerpted with kind permission from Chapter 25 of Fibromyalgia: Up Close & Personal by Mark Pellegrino, MD. ©Anadem Publishing, Inc. and Mark Pellegrino, MD, 2005, all rights reserved. This information-packed 424-page book may be purchased directly from Dr. Pellegrino’s office at 330-498-9865 or 800-529-7500.
Note: This information has not been evaluated by the FDA. It is generic and is not intended to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.