Restless Legs Syndrome (RLS) Discussion Board

Hi Everyone - First, I must say that this forum is a lifeline for me. I suffer from severe RLS and have tried the dopamine antagonists (i.e., Ropinerole, etc...) to no avail and my doctor has me taking Oxycodone 5mg at bedtime then a half during then night (.25) so a total of 7mgs per day. This seems to work. But I have developed a bad case of SIBO (Small Intestinal Bacterial Overgrowth). I am on my second round of antibiotic therapy (Xifaxan & Neomycin) to treat it. The Oxycodone is the only thing that I can think of that is the root cause. I am also following a strict low FODMAP diet. I am also working with the RLS Care Center team at Scripps in San Diego. They also just prescribed me with Pregabalin 50 MG at bedtime. Jury is still out.
Has anyone else encountered SIBO while on Opioids? I so, how did you overcome it? Your help is GREATLY appreciated!!!

Reposting for better clarity.

I too suffer from severe RLS and have been educating myself on how SIBO plays a role. I first became aware of SIBO while listening to the webinar conducted by the RLS Foundation in January. I went to see my gastroenterologist and I have SIBO. I am on my second round of antibiotic therapy (Xifaxan & Neomycin) to treat it. I noticed a marked improvement in my brain fog, sense of well being, bloating, and the ability to climb stairs on day 4 of taking the antibiotics! When the initial 2 week treatment wore off, my symptoms slowly started to return. I am on a second round of treatment for a longer duration (4 weeks) to ensure that the SIBO is completely eradicated. Fingers crossed that that will fix my digestive issues and bloating. I am also strictly following a low FODMAP diet. I've lost 11 pounds.

I have tried the dopamine antagonists (i.e., Ropinerole, etc...) to no avail. I am treating my RLS with a low dose Opioid. I have read that Opioids can cause SIBO and have researched it as well and it is valid. I currently take Oxycodone 5mg at bedtime then a half during then night (.25) so a total of 7mgs per day. This seems to work. I recently went to the RLS Quality Care Center at Scripps in San Diego and the neurologist added Pregabalin 50 MG at bedtime in addition to the Oxycodone. Waiting to see if this helps with getting a better nights sleep.

Scripps is also recommending an Iron Infusion. My Ferritin is at 40.2 but my hematocrit is a little on the high side at 53. I am working to get this down so that I can be better suited for the infusion.

When my RLS symptoms start to occur, I get a pain in my abdominal area (similar to acid reflux) and have convulsions in my trunk (between my waist and shoulders) and get a weird feeling in my head (similar to severe brain fog). Has anyone experienced this? It only subsides after taking the Oxycodone.

I often feel very hopeless and can't imaging living the rest of my life this way or being in a state later in life where I am unable to communicate my condition to others (i.e. nursing home).

Ny help is greatly appreciated.

Welcome, Trophyman. I think many of us can feel hopeless at times. We're glad you're here and finding information that is helpful.

I wish I had something to tell you that would help, but there are so many possibilities, but so far, there is nothing that works for all of us. Many of us just have to find something that works on OUR symptoms, even if it doesn't help others.

Thanks for your reply Ann. It means a lot to me that you reached out. I am feeling quite hopeless and will continue educating myself in hoping I find some help.