Autonomic Dysfunction in CFS and Fibromyalgia

Treating POTS, NMH, Low Blood Pressure And Orthostatic Intolerance

As we have discussed earlier, the energy crisis seen in CFS and fibromyalgia triggers malfunction in a main control center called the hypothalamus. This controls:

1. – sleep
2. – hormonal function
3. – temperature regulation—so 98.6 is 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 SHINE protocol can help all of these. But it is important to specifically also address the low blood pressure problems, as this is a very important contributor to the postexertional fatigue that limits your activity. For more information on treating irritable bowel syndrome and acid reflux, see the free smart phone app Cures A-Z.

Diagnosing Orthostatic Intolerance
These are often called POTS or postural orthostatic tachycardia syndrome and NMH or 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 (www.Energyanalysisprogram.com) that analyzes people's symptoms and lab's to determine what is causing their fibromyalgia "energy drain" and how to best address it. Here is the quiz. Circle the number in front of what best describes your situation, and add the totals. A score of nine or higher suggest a very high probability of orthostatic intolerance. I find that those with CFS or fibromyalgia who have a score of six or higher feel better when it is treated.

Self Report Orthostatic Grading Scale
Mayo Clin Proc. 2005;80(3):330–334
("Orthostatic symptoms" include worsening dizziness, fatigue, Racing heart or brain fog when standing)

Circle 0 –4 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 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

Total Score Scores of 9 or higher suggest Orthostatic Intolerance

If you scored six or higher, you will likely find that the treatments below will help you.

Treating Orthostatic Intolerance
These simple treatments from our treatment checklist can be very helpful.

1. Treat adrenal fatigue. I do 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). This medication is very toxic at high doses, but has been shown to be very safe at these low doses. This was discussed in my earlier article on adrenal problems.
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— 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. 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"). Do not get the medical ones, as they will make you look like an 80 year old. Instead, go to a sporting goods store and get fashionable ones. Low-cost, no side effects, and dramatic benefit.
4. Midodrine (Rx, Proamatine)— 5mg. ½ – 2 tablets. Take up to one hour before ‘exercise/activity' up to three times a day (for NMH/POTS) but do not take later than 5 PM. Lower the dose or stop it if it makes you feel overstimulated.
5. 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. Interestingly, the antidepressants Prozac and Zoloft also helps orthostatic intolerance. These simple treatments can markedly improve your function—especially the first three, which you can do on your own.

It's time for you to Get Well—NOW!

fibromyalgia cfs Orthostatic Intolerance NMH