My SIBO Story

Do certain foods seem to trigger your RLS? Or, when you experience bloating or abdominal fullness, do these conditions seem to exacerbate your RLS? If so, read on.

I finally made the connection between my restless legs and many years of (undiagnosed) Irritable Bowel Syndrome (IBS). I heard from Caroline Chamales, the RLS Foundation support group leader in San Diego, that Dr. Leonard Weinstock, a gastroenterologist at Washington University in St. Louis, was collaborating with Dr. Arthur Walters, a well-known RLS expert, Professor of Neurology at Vanderbilt and an active member of the Foundation's Scientific and Medical Advisory Board, to study the relationship between a gut infection that causes IBS-like symptoms and RLS. I jumped at the chance to learn more.

I went to my local gastroenterologist and insisted that I get tested for a gastrointestinal infection, called SIBO, which stands for Small Intestine Bacterial Overgrowth. To get a better footing on the subject, my gastroenterologist (GI doctor) suggested that I read the book, A New IBS Solution by Dr Mark Pimentel, Director of the GI Motility Program at Cedars Sinai Hospital in Los Angeles. Dr. Pimentel has devoted his career to studying IBS and is responsible for developing a breath test that diagnoses bacterial overgrowth in the small intestine that causes distress.

In St. Louis, Dr. Weinstock’s practice actually includes an RLS Clinic where he treats patients with the two diagnoses. Because Dr. Weinstock’s clinic is in Missouri and I live in the vicinity of Cedars Sinai, I chose to get treatment locally.

I took the breath test, was diagnosed with SIBO and treated with an antibiotic used to treat IBS, travelers’ diarrhea and hepatic encephalopathy called Rifaximen. And, in what seemed like a miracle, into the second week after taking the full course of the antibiotic, my RLS improved significantly. My nighttime RLS disappeared!

However, a potential complication is that people who have been diagnosed with SIBO frequently relapse. After the bacteria is killed, there is a healing period that is required. Because this is still considered a gray area of medicine, there is no standard regimen that has been embraced yet by mainstream medical providers.

I wish that I could close with a happy ending. I too have suffered a relapse filled with sleepless nights, difficulty swallowing, reflux, food intolerances and leg pain which at times triggers a full-blown attack of RLS. The journey has been no walk in the park, but I do harbor the hope that there is a rainbow somewhere in my not-so-distant future.

During the six years that I have suffered from both SIBO and nightly RLS, I had been diagnosed with osteopenia and nutritional deficiencies including Vitamin B12, and my ferritin was on the borderline reading of 50. Some have postulated that the overgrowth of bacteria in the small intestine causes malabsorption of nutrients. The bacteria were literally eating my lunch!

One takeaway from my experience is that the Low FODMAP diet, developed by the Monash University in Australia, helped with my symptoms as well as with my RLS. FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. In simpler terms, FODMAPs are carbohydrates (sugars) that are found in foods. However, not all carbohydrates are considered FODMAPs. Once diagnosed with IBS by your gastroenterologist, you can discuss if the FODMAP diet is an appropriate nutritional therapy for management of your IBS. Current research suggests the FODMAP diet reduces symptoms of IBS. A majority of individuals with IBS also have SIBO, a major contributing factor to the development of IBS.

If you have been diagnosed with IBS and think that you may have SIBO, seek the professional opinion of a gastroenterologist for further evaluation.

Susan is the RLS Foundation's support group leader in Southern California.