The Northern Virginia (NOVA)
CFS/ME, FMS, OI, Long Covid
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A. One of my favorite topics. And some practical help, too! - Elly

Non-technical, Practical CFS/FMS & Orthostatic Intolerance 101   

Chronic fatigue syndrome (CFS) was linked to a cardiovascular and neurological disorder called neurally mediated hypotension (NMH) in 1995, and later, also POTS, postural orthostatic tachycardia syndrome. Fibromyalgia Syndrome (FMS) patients were also shown to have some POTS and NMH in research as well. NMH and POTS are dysautonomias, dysregulations of the autonomic nervous system. They can be thought of as forms of Orthostatic Intolerance (OI), which literally means being intolerant of being upright and still. 

Sometimes, orthostatic intolerance is considered just one symptom of CFS, FMS, POTS, NMH, and even mitral valve prolapse syndrome / dysautonomia (MVPS/D).  Standing still, even standing still, if your circulation isn't up to compensating for gravity, can make a person feel terrible! Moving around allows your muscles to help push some blood around.

In NMH, where there are sudden drops in blood pressure (BP), triggers can be things that tend to lower BP such as heat, alcohol, and standing up or staying still while upright.

In POTS, where blood pressure and heart rate tend to increase with prolonged standing and or high stress, triggers which make things start or get worse tend to be things raise blood pressure (BP) and heart rate like stress and stimulants (caffeine, citrates, aspartates, Vitamin C). 

Changes in circulation occur with communication between the heart and the brain, both of which are structurally normal in typical OI patients. People with CFS, FMS, or a long history of OI are generally very fatigued, in a lot of pain, both and/or other. They can be  kind of near the limits of what their bodies can handle, so any activity can bring on old, recognizable symptoms, or sometimes new or a new degree of symptoms. 

Two factors that can be involved triggering more circulatory symptoms are:

1) a low level of blood in the heart due to low circulating blood volume (possibly from dehydration) and/or blood pooling in the arms and legs while in an upright position, and

2) increased adrenaline which causes the heart to beat faster and harder.

The symptoms that make a person feel terrible from either of these are a built-in  beautifully life saving compensating mechanisms to help a person know to lie down, move, or get away from the current situation, drink more water, adjust electrolyte intake... and that can be seen a good, survival communication from the body. The better one gets at recognizing the symptoms and triggers and adjusting for them, the more comfortable one can become between episodes. The episodes can become less frequent (!!!) the better one gets at avoiding the triggers whether they be physical, emotional, intellectual, related to weather, stress, environment, or personal biology. While figuring the triggers out is not always easy or possible, never mind consistently applying what you've learned.... we've found having fewer symptoms and less severe symptoms to  be worth striving for and a relief to we can do something to help ourselves.

See also from The Children Heart Institute:
Venous Pooling in the Standing Position
Syncope: How the Brain Controls the Heart

NMH is usually identified easier in people who faint than in CFS and FMS. By fainting, a person becomes horizontal and blood is redistributed evenly and the body starts to reset itself sooner rather than try to keep struggling against gravity, heat, or other strains. If the struggle becomes too much, a reflex signals the brain that blood pressure needs to be lowered. The brain complies, causing blood vessels to dilate and the body to start fainting.  With CFS and FMS, you'll probably do it in slow motion. Generally, OI, CFS and FMS patients have time as they start feeling worse and worse to notice and start compensating activities, sometimes without realizeing it: walking or pacing, sitting, lying down, putting feet up, talking more with hands, or changing something to stop the actual faint. The more conscious the effort to use these helpful behaviors, the more functional one can become... at least up to a point.

Chronically fatigued people who rarely faint or have never fainted, but get there half way and keep walking around not really thinking well, might also be suffering from NMH. That was true for me some of the time. Warning signs that a faint is starting, (lightheadedness, nausea, pain, changes in vision, hearing, or other senses, etc.), would probably lead one to move, sit down, cool off, or in some other way abort or interrupt the faint. Even so, the after effects of starting to faint remain. After effects of just beginning to faint, withdraw, shut down can include fatigue for hours or days, more cognitive problems, pain, shakiness, and depression or irritability. If the NMH reflex is set off repeatedly, chronic fatigue, chronic pain, and other chronic problems may result. 

NMH can also be what happens after lots of POTS and PANS (problems within the Autonomic Nervous System). The body provides many hints one must lie down now after pushing too hard to keep going. That's what my tilt table tests showed. Because I got to experience POTS as well as NMH on tilt table tests, I learned what symptoms and feelings happen with which types of readings. Many episodes of what I called "heat sickness" and stress overreaction started making sense...with all the fatigue that resulted.

For more technical discussion see:

General Information Brochure on OI and Its Treatment, 2016 CF Clinic JHMI, Rowe
POTS, an Overview Dysautonomia Information Network

What are the symptoms of Orthostatic Intolerance (OI) conditions?

Fatigue, pain, cognitive dysfunction, and weakness are part of OI. Lightheadedness, nausea, and dizziness are also very common. Extreme stress sensitivity as well. Some other features are exercise intolerance, alcohol intolerance, feeling too hot or cold, heat intolerance, air hunger, and difficulty with quick movements, especially those that send blood to the feet. Not all symptoms have to be present for diagnosis. NMH and POTS and a similar cousin, Mitral Valve Prolapse Syndrome / Dysautonomia (MVPS/D) seem to run in families, and viruses or extreme stress or trauma often start a chronic bout with symptoms. For our longer list, see symptom section of the MVPS/D and OI page.

Can I have high blood pressure & NMH, low blood pressure and POTS?     

Having hypertension does not exempt one from having neurally mediated hypotension, nor does having hypotension exempt one from having postural tachycardia and climbing BP upon standing. The communication between the heart and brain to fight or flee or give up and pass out are events and usually triggered by something, what your regular BP and heart rate are isn't the most important thing. It can be quite relative. If your regular BP is very low and you have a sudden drop, you could feel worse than someone who has high normal BP and has a drop.

What is OI's relationship to CFS?

Many, many articles have appeared and research has been done since the first one I saw was published, "Is neurally mediated hypotension an unrecognized cause of chronic fatigue?" appeared in the Lancet on March 11, 1995. In fact, there was one before that by David Streeten in 1992 that asked if delayed orthostatic hypotension might be involved in CFS, but none of us found it. Dr. Streeten then collaborated with some CFS researchers and did some fine studies. A good recent discussion of CFS & OI is in an article by David S Bell, MD, The Symptom of Orthostatic Intolerance in CFS that appeared in the Spring 2005 ME/FM Action Newsletter. In it, Dr. Bell states, “In this paper, I would like to suggest that the central and most disabling symptom of CFS is not fatigue but the symptom of orthostatic intolerance.” 

How is Orthostatic Intolerance diagnosed?

OI can be diagnosed with a detailed history, but a tilt-table test can confirm it. The short description of a tilt table test is imagine your self standing still for 45 minutes. People without OI usually say, "What's hard about that?" People with OI say, "Groan.... I couldn't possibly do that!"

Measuring sudden drops in blood pressure that stabilize quickly can be tricky so it is important to report feelings and sensations during the test as well, without moving too much or getting too excited. A measurement must take place while the drop is happening; after an episode is too late. Since BP cuffs are used and measurements only taken every few minutes, it is still not a perfect test. Because blood pressure stabilizes quickly, it is nearly impossible to measure in a routine setting like a doctor's office. Also, simple standing, sitting, and lying-down blood pressure readings are not adequate for the diagnosis of NMH or POTS.     

For POTS, people are often very stressed in testing environments so their resting blood pressure and heart rates may be elevated. This may make difficult to show the increases that typically happen and would allow for a POTS diagnosis.

The tilt-table test is usually done in a hospital setting and may take a few hours.  Specialized cardiologists called electro-physiologists, are physicians that most often do tilt-table tests. Every center seems to do tilt tests in their own manner, varying the number and length of stages. Doctors interpret the results in the different ways as well. Be cautious. Many involved with tilt testing are probably not knowledgeable or accepting about CFS yet. Also, many CFS experts are still not yet knowledgeable about what it means to live with OI, even if they are somewhat more experienced with some kinds of tilt-table testing than they were 10 years ago.

They might do what during a tilt-table test?     

During several phases of the test, heart-rate and -rhythm data, blood pressure, and symptoms are recorded while the patient is strapped to a special table. The table has a board to place your feet on so you can support your weight when tilted up as in standing. One popular protocol for CFS patients, which has four phases, consists of lying on a flat tilt-table for several minutes; tilting at 70 degrees (head up) for 45 minutes; lying flat again while starting and adjusting to an intravenous (IV) adrenaline-like drug; and tilting again for 20 minutes while still taking the drug. Symptoms can fade in and out at any time. At some point if the body cannot compensate for position anymore, the person may begin to pass out. The test is completed and the tilt-table is lowered.  Note: some protocols do not include the adrenaline drug part, or stress challenge.  Some CFS patients will not have a positive test without it, even if symptoms develop.     

During the test, the patient should try to be as still and relaxed as possible. Talking, shifting weight, and answering questions are activities which can prevent blood pressure from changing a much as it could and a false negative test may result. So if taking the test brings on symptoms, but is considered negative, treatment for OI may still be effective.

A simple screening test for OI can be done under a doctor's supervision. It involves leaning perfectly still against a wall and reporting symptoms as they occur, usually within 5-15 minutes. Have the doctor watch for blue hands and feet, a sign of blood pooling or not moving as well.  A negative result is not conclusive because there is no stress challenge or the time may not be long enough. A good predictor of OI is hearing a person groan with fear at the thought of physically having to stand on line at a crowded grocery store. See also:

Procedure for Taking Standing Blood Pressure For POTS

What about treatment for OI?

Treatment is available, but it is not often easy or straightforward. Since there are two main triggers for NMH (improper blood distribution and elevated adrenaline), many treatments focus on one or the other. Unfortunately, sometimes treatments that help reduce one trigger could make the other worse. So, often a combination of therapies is required. As with CFS treatments, what works for one patient will not necessarily work for another.  There is a fair amount of trial and error, demanding patience from doctor, patient, and family members. Note that treatment ideas and strategies vary from doctor to doctor.     

There are many types of treatments: medications, lifestyle changes, diet modifications, and more. The goal of management is to prevent the abnormal reflex from taking place and to support the body if it does. Even simple changes can make a big difference. Medications available for treating different forms of OI are numerous and quite varied in how they work and none appear ideal. Working closely with a physician is very important because people with OI and CFS are very sensitive to drugs (and everything else!). Start with tiny doses to prevent adverse reactions; often a low dose is all that is necessary.     

Regarding lifestyle modifications, examine all of your activities for their potential to set off an OI episode. Do you often stand or sit still? Try fidgeting or walking around every so often. Do you feel bad after scary or suspenseful books or movies? Giving them up until your stress response is under control may help. Do hot showers make you extra tired or lightheaded? Try cooler water or baths. As with anything, make changes slowly and keep notes. 

My favorite all time helpful prescription medication for my types of OI doesn't appear or not by itself on most of the places that list OI or POTS drugs: time release prescription potassium (KCl CR). I went on it because of Florinef, which make some lose too much potassium. I had to stop the Florinef as it made me much sicker, even at minuscule doses. I couldn't take beta blockers either. I did okay on Norpace for awhile, but then it stopped working and we realized that required potassium to be effective, too. When I stayed on just KCl CR for OI and other gentle mineral OTC supplements, especially chelated calcium and magnesium in 4 small doses per day, I was the most stable. [Since starting the Chinese herbal protocol with FM/CFS specialist Jonathan Gilbert, I've been able to come off all meds and supplements and keep improving.]


Do try more of these to reduce OI symptoms

Drink water! Measure it, though. You can overdo it.
More liquids to choose from: Vitalyte, Selectrolytes, E-lyte, CeraLyte or bone broth! Fidget! Move often.
Add calm enjoyable entertainment, humor into your life.
Increase sodium and potassium -  back off if  have more lightheadedness or anxiety.
Fluid and salts raise circulating blood volume.     
    (Salted nuts & potatoes as well as tomato juice are great sources of sodium and
      potassium to experiment with.) 
Chelated calcium and magnesium supplements can help with sleep problems and anxiety.
Stay cool: use air conditioning, ice packs, and desk, floor, and portable fans;
Wear hats and white clothing in the sun.
Move constantly: shift, fidget, squeeze toes. Eat small, frequent meals of simple foods.
Try more protein and fewer carbohydrates. Or shift carbs to later in day.
Wear support hose or socks.
Tilt your bed frame with the head up - this helps retain water and salts during night.
Use relaxation techniques.
Even if you're not thirsty, drink more.
Keep arms low and legs below horizontal.
Walk regularly in a cool place.
Try easy water movements or only 30 seconds at a time on a mini-trampoline.
Evaluate current medications for effects on OI.
Increase fluids if attempting exercise or if under increased stress.
Start a gratitude journal/attitude.
Add more heart into your decision making

See also:
Inclined to Recline: Our Tips for Managing OI  by Toni Marshall and Elly Brosius
General Information Brochure on OI and Its Treatment 

Do try less of these to reduce OI symptoms:

Prolonged standing or sitting still: waiting in line, driving, desk work, doing dishes, etc.
Stressful relationships, situations, movies, etc.
Warm weather, sun or other heat on the skin, hot showers, getting overheated.
Sugar, caffeine, alcohol.
Eating large meals or missing meals.
Foods that make you feel strange.
Going from a cold place to a warm place.
Movements that send blood to your feet.
Medicines that may worsen NMH or dehydration (check with your doctor).    
See also POTS, What to Avoid
 

By consistently working with these ideas and others, it is possible to find ways to minimize fatigue, pain, thinking problems, nausea, lightheadedness, anxiety, odor/chemical sensitivity, sleep problems, and more.

For more CFS/NMH/POTS, information...
Resources: Orthostatic Intolerance NOVA CFS/ME, FMS & OI Support Group
Diagnosis: Orthostatic Intolerance (OI) CFIDS Association

Based on a tri-fold brochure on NMH and CFS from 1995 by Elly Brosius, MS.

Revised 9-7-06
NOVA CFS/FMS/OI Support Group

Information provided by patients sharing experience with other patients. We are not health or legal professionals. Please confer with knowledgable professionals. Follow any suggestions from there or here at your own risk/reward.