Autonomic Dysfunction in CFS and Fibromyalgia

Treating POTS, NMH, Low Blood Pressure and Orthostatic Intolerance

As I've discussed before, the "energy crisis" seen in CFS and fibromyalgia triggers a malfunction in a main control center called the hypothalamus. This controls:

1. Sleep
2. Hormonal function
3. Temperature regulation (98.6 is actually a fever in this illness), and
4. Autonomic function

Autonomic function regulates blood pressure, pulse, sweating, and gut function. This is why many of you find that you have weird sweating issues along with irritable bowel syndrome (gas, bloating, and alternating diarrhea and/or constipation) and acid reflux.

Treating with the overall S.H.I.N.E.® protocol can help all of these. But it's also important to specifically address low blood pressure problems, as this is a major contributor to the postexertional fatigue that limits your activity.

Diagnosing Orthostatic Intolerance

These are often called POTS (Postural Orthostatic Tachycardia Syndrome) and NMH (Neurally Mediated Hypotension). This means that when you stand up, the blood pools in your legs, essentially starving your muscles and brain. Normally, the autonomic nervous system tells the legs to send the blood back up to your brain, where it is needed. But this doesn't work very well in fibromyalgia.

The classic way of diagnosing this is by doing a tilt table test. This is expensive, uncomfortable, and often unreliable, and I don't generally recommend it. There are two easier ways to make the diagnosis.

The easiest is to do a simple quiz. This is the one that we use as part of our free Energy Analysis Program (a free program we provide that analyzes people's symptoms and lab's to determine what's causing their fibromyalgia "energy drain" and how to best address it). Below is the quiz. Follow the instructions to create a total score. A score of 9 or higher suggests a very high probability of orthostatic intolerance. I find that those with CFS or fibromyalgia who have a score of 6 or higher feel better when it is treated.

Self-Report Orthostatlc Grading Scale

Mayo Clin Proc. 2005;80(3):330-334 ("orthostatic symptoms" include worsening dizziness, fatigue, racing heart or brain fog when standing).

Score 0-4 for each of the symptoms below as best applies to you:

A. Frequency of Orthostatic Symptoms

[0] I never or rarely experience orthostatic symptoms when I stand up.

[1] I sometimes experience orthostatic symptoms when I stand up.

[2] I often experience orthostatic symptoms when I stand up.

[3] I usually experience orthostatic symptoms when I stand up.

[4] I always experience orthostatic symptoms when I stand up.

B. Severity of Orthostatic Symptoms

[0] I do not experience orthostatic symptoms when I stand up.

[1] I experience mild orthostatic symptoms when I stand up.

[2] I experience moderate orthostatic symptoms when I stand up and sometimes have to sit back down for relief.

[3] I experience severe orthostatic symptoms when I stand up and frequently have to sit back down for relief.

[4] I experience severe orthostatic symptoms when I stand up and regularly faint if I do not sit back down.

C. Conditions Under Which Orthostatic Symptoms Occur

[0] I never or rarely experience orthostatic symptoms under any circumstances.

[1] I sometimes experience orthostatic symptoms under certain conditions, such as prolonged standing, a meal, exertion (e.g., walking), or when exposed to heat (e.g., hot day, hot bath, hot shower).

[2] I often experience orthostatic symptoms under certain conditions, such as prolonged standing, a meal, exertion (e.g., walking), or when exposed to heat (e.g., hot day, hot bath, hot shower).

[3] I usually experience orthostatic symptoms under certain conditions, such as prolonged standing, a meal, exertion (e.g., walking), or when exposed to heat (e.g., hot day, hot bath, hot shower).

[4] I always experience orthostatic symptoms when I stand up; the specific conditions do not matter.

D. Activities of Daily Living

[0] My orthostatic symptoms do not interfere with activities of daily living (e.g., work, chores, dressing, bathing).

[1] My orthostatic symptoms mildly interfere with activities of daily living (e.g., work, chores, dressing, bathing).

[2] My orthostatic symptoms moderately interfere with activities of daily living (e.g., work, chores, dressing, bathing).

[3] My orthostatic symptoms severely interfere with activities of daily living (e.g., work, chores, dressing, bathing).

[4] My orthostatic symptoms severely interfere with activities of daily living (e.g., work, chores, dressing, bathing). I am bed ridden or wheelchair bound because of my symptoms.

E. Standing Time

[0] On most occasions, I can stand as long as necessary without experiencing orthostatic symptoms.

[1] On most occasions, I can stand more than 15 minutes before experiencing orthostatic symptoms.

[2] On most occasions, I can stand 5-14 minutes before experiencing orthostatic symptoms.

[3] On most occasions, I can stand 1-4 minutes before experiencing orthostatic symptoms.

[4] On most occasions, I can stand less than 1 minute before experiencing orthostatic symptoms.

Add your scores. A total of 9 or higher suggests orthostatic intolerance. If you scored 6 or higher, you will likely find that the treatments below will help you.

Treating Orthostatic Intolerance

1. Treat adrenal fatigue. I recommend this if people have symptoms of irritability when hungry (what the commercials call "Hangry") or a morning cortisol level of 11 mcg/dL or less. This can be done with a supplement called Adrenal Stress End and/or by using the medication Cortef at a very low dose (20 mg a day or less). Cortef is very toxic at high doses, but it's been shown to be very safe at these low doses (20 mg a day or less). This medication is very toxic at high doses, but has been shown to be very safe at these low doses.
2. Increase your salt and water intake — a lot! If your mouth and lips are dry (and you're not on Elavil) you're dehydrated. So drink more water (or herbal tea or lemonade sweetened with Stevia), not sodas or coffee. Celtic Sea Salt is an excellent form to use. I know you already drink like a fish, but you also pee like a racehorse! Drink more water and eat more salt. The main benefit of following the government guidelines for salt restriction, for people in general, is that they die younger — and the Social Security system thanks you. Unless you have high blood pressure or congestive heart failure, eat more salt!
3. Use compression stockings. Get medium pressure (20-30 mm) thigh-high compression stockings. People find that this often results in a dramatic increase in stamina. Wear them whenever you are upright for an extended period or doing significant activity. There are many videos on YouTube that will teach you about how to use these (search on "compression stockings"). Don't get the medical ones, as they'll make you look like your great grandmother. Instead, go to a sporting goods store and get fashionable ones. Low-cost, no side effects, and dramatic benefit.
4. Consider Midodrine. Midodrine (Rx, Proamatine) 5 mg, 1/2-2 tablets. Take 2-3 times a day (for NMH/POTS) but don't take later than 5 pm. Lower the dose or stop it if it makes you feel overstimulated.
5. Consider hyperactivity medications. The hyperactivity medications Adderall, Ritalin, or Dexedrine can be very helpful. These are in the amphetamine family and therefore tightly controlled. I do not see addictive problems as long as the dose is kept under 20 mg a day, and most adults do best on 2 ½ to 12 ½ mg daily. These can also be taken intermittently instead of daily.
6. Consider antidepressants. Interestingly, the antidepressants Prozac and Zoloft also help orthostatic intolerance.

These simple treatments can markedly improve your function — especially the first three, which you can do on your own.

Also, for a superb and very detailed overview on this topic by one of my favorite OI researchers, Dr. Peter Rowe at Johns Hopkins, see this information brochure.

It's time for you to Get Well NOW!