SIBO

[Savanna1!]

Does anyone else have intestinal problems with their RLS? I'm curious about SIBO and see it's a topic at this year's patient symposium. I get stomach pain (not nausea) after eating, have lost weight and often have diarrhea. My RLS is severe, but treated with long-acting pramipexole & opioid. Thanks.

[Rustsmith]

There was a clinical trial performed at Stanford about two years ago looking at this topic. As I understand it, the results were inconclusive. Some were helped but many were not. Which is sort of typical for RLS.

[Savanna1!]

Thanks Steve. I also am wondering about iron levels. Mine were 76 (non fasting), and I started taking a supplement when I read 100 might be needed for severe RLS (mine is). But then at my next test, my iron was 66 despite the supplement. My doc doubled the dose & I test again in 3 months. I take pramipexole long-acting & 15 mg morphine at 5 p.m. each day. By 3 p.m., if I'm not on my feet, I get symptoms, which usually are relieved by 7 p.m. with what I'm taking. My doc isn't averse to opioids (cautiously) or IV iron; we'll be discussing it in Nov. Any thoughts? Thanks.

[Polar Bear]

How long have you been taking pramipexole. This medication is most likely to eventually cause augmentation and if your symptoms are starting earlier in the day this is something to be considered. Most long term rls sufferers find that an opioid is the answer.
You are fortunate that your doctor is not averse to opioids.
Take a look at the Augmentation Form and see if you can relate to this. Also the link in my signature.

[Savanna1!]

Hi Polar Bear,
I've been taking pramipexole long-acting about 4 months. Previously, I had been prescribed ropinirole but only took it 2 months b/c it didn't help me. Until my iron levels get straightened out, it's hard to say if it's augmentation. I hope not b/c it's so soon, but I am aware of the risk. I keep hoping I'll be in that 20% that doesn't get it. The opioids have many regulations, and my dose is very small, so at the moment I don't have any trouble getting it. I have a kind doctor who cares ... and yes, it took a long time to find her. I saw her today, and she sent me to GI for scope and biopsy to determine if I have SIBO or some other problem. This is such a complicated illness.

[Polar Bear]

With your pramipexole and requip you've been on a DA for 6 months. It's not very long but it is possible to augment within this time. You could do a search for SIBO and see what comes up. Unfortunately our search facility is very basic and it's time consuming to have to read each 'hit'.
I hope your scope is clear.

[Trophyman]

Hi Savanna1! - 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 too 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.

Just curious...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). Have you experienced this? It only subsides after taking the Oxycodone.

We'll get through this. Its about self education and experimentation. 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).