Dizzy in CFS or Fibromyalgia? What It Means and What to Do

Most people with CFS, fibromyalgia or long COVID experience dizziness or disequilibrium. This tends to fall into several categories:

1. Lightheadedness on standing. This tends to be associated with POTS (orthostatic intolerance). Basically, when you stand up, gravity sends blood to your feet, and it stays there for a while.
2. Disequilibrium on standing or when you've been walking around for a while. This dizziness feels more like you're on the deck of a boat, resulting in poor balance.
3. Vertigo. This is when you, or the room you're in, feel like you or it is spinning in a circle. This is less common and suggests infectious triggers.

Fortunately, none of these are especially dangerous. New research shows that the disequilibrium can be treated as well as the POTS. Here are simple at home tests you can do to tell which type(s) you have and how to treat them.

Three Types of Dizziness in CFS/FMS/ME/LC

Dizziness Type 1: Lightheadedness on Standing

Do you find you sometimes get briefly lightheaded when you stand? Have problems with occasional racing heart? Get brain fog when you’ve been standing up for a while? This are symptoms that tend to be associated with POTS (Postural Orthostatic Tachycardia Syndrome)—see POTS: When Your Blood Pressure and Pulse Go Haywire to learn more about this condition. You'll also learn about two simple at-home tests to screen for this along with detailed instructions on what you can do to get better.

The 10-Minute Pulse Test

Try this test. Minimize salt intake for one day. The following day, simply lie down on your back quietly for 10 minutes and then check your pulse (and blood pressure if able). Then stand up and check your pulse (and blood pressure) again every two minutes for 10 more minutes while standing in place (don’t walk around or lean on anything).

If you have CFS, fibromyalgia or long COVID and your pulse rate goes up by 15 beats per minute any time during the 10 minutes while standing (relative to when you were lying flat), then IMHO there's a good chance you're experiencing orthostatic intolerance. If it goes up 30 bpm or more, the diagnosis of orthostatic intolerance is confirmed.

What to Do

Simple measures can help:

1. Increase your consumption of water and salt.
2. Wear compression stockings (medium pressure of 20-30 mm) when up and about.
3. Take Adrenaplex® to support adrenal function.
4. Take PEA Healthy Inflammation Response and/or Low-Dose Naltrexone (LDN) to address the microglial activation.

In addition to LDN, other medications that help include Midodrine, DDAVP, Ivabradine and many others.

Dizziness Type 2: Disequilibrium

This type of dizziness feels more like swaying when walking on a ship. This form of dizziness also occurs on standing or when you've been walking around for a while. It is often worse when standing with one’s eyes closed.

Disequilibrium can be triggered by:

1. Middle ear congestion. I suspect this when nasal or sinus congestion are also present. If it's not seasonal, it's most likely associated with Candida or fungal overgrowth.
2. Microglial activation (brain or nerve irritation from CFS or fibromyalgia). This can be helped by the PEA or LDN noted above. Interestingly, a new study showed that the antibiotic Minocycline can help with this type of dizziness, and the Minocycline also decrease microglial activation.

You can screen for disequilibrium with a simple at-home test called the “Romberg Test.” Watch this video to find out how to perform this test.