Probiotics and RLS

[sjw_1978]

Hello all, I'm new on the forum. anyone got any experience of probiotics helping RLS? I mainly mean Symprove rather than the yoghurt drinks you get in the supermarket. I've been reading there is a significant overlap between people with Irritable bowel syndrome and those with RLS.

[Hidden]

The chances of Symprove knowing what and how much of a particular micro-organism our gut microbiome needs is next to zero.  Researchers have been delving into this for decades now and are still coming up empty handed.  The best these researchers have to offer at this point is a fecal transplant from a seemingly healthy donor.  With that said, there are at least a dozen people on this forum alone who have reported complete or near complete remission of RLS symptoms with antibiotics.  And it's probably only certain antibiotics at that.  The most amazing story was someone who had contracted MERSA and he was hit with antibiotics that probably wiped out most of his gut microbiome (albeit temporarily) and he got complete relief.  That tells me it's not so much our lack of a particular strain of micro-organism but too much of them.  Once again, with that said, probiotics might just crowd out the ones that are tending to cause or worsen our RLS.  It's like looking for a need in a hay stack.  If you're besides yourself with IBS and RLS I recommend getting a hydrogen breath test (completely non-invasive) and seeing if SIBO (small intestinal bacterial overgrowth might be causing your symptoms.

[sjw_1978 in reply to Hidden]

Thanks for the info

[frances1 in reply to Hidden]

Hi where can you get test, if positive what can you take for IBS, RLS

[sjw_1978 in reply to frances1]

Further to my last answer this has all been through the GP and NHS.

[Hidden in reply to frances1]

Frances do you have Fibro or IBS in addition to RLS?  Not that it matters because supposedly SIBO can cause just RLS or just migraine headaches.  You don't also have to suffer from Fibro or RLS.  Yet it seems that the best chance of getting the test ordered is via a GI doctor.  Do you have one that you like?

If it's positive then the doctor will prescribe one of two antibiotics (or both) depending on which bacteria is over-growing.  The bacteria that givesoff hydrogen, and which tend to cause diarrhea, are sensitive to an antibiotic called Rifaximin.  If your test shows high levels of methane (those bacteria cause more constipation) then I believe Neomycin or Erthromycin is prescribed.  I think it's an eight week course of treatment.  People feel great while they are taking the antibiotic(s) and shortly thereafter and feel they have been given a new lease on life.  Like I've said on here before, those little organisms want to live and be happy every bit as much as you and I do.  They tend to return so you have to keep chasing them.  I may not have SIBO but I truly believe that I have a raucous gut microbiome in my large (not small) intestine.  Everyone's large intestine is a zoo but mine I think get out of control.  I'm hitting them hard right now with natural antibiotics and a prescription anti-fungal.  So far so good.  I'm getting a little improvement in my gut and fatigue level.

[frances1 in reply to Hidden]

Doc said I will have to get private test, I was reading Frob I have nealy all symptoms .RLS IBS  TMJ  painfully neck and do not sleep much been taking magnesium and co codamol . Did not know about  SOBO test  is a worth paying for thanks for info

[Hidden in reply to frances1]

Here are some reviews for Xifaxan/Rifaximin which was recently approved by the FDA for IBS-D.  TV commercials come on every hour for it in the U.S.

everydayhealth.com/drugs/xi...

Maybe your doc would prescribe a two week course or whatever he would do should your test come back positive.  In the U.S. it is approved for long term use because allegedly it stays in the gut and kills the microbes without much of it entering the bloodstream.  One reviewer had side effects but I bet they were due to what's called the herxheimer reaction.  When bugs start dying off inside of you then you get flu-like symptoms for a few days.

[sjw_1978]

I don't speak with any authority, only experience of both and a bit of Internet browsing.

The problem is both conditions are essentially diagnosed on the basis of a range of symptoms which usually cannot be pinpointed and "fixed" by any one thing.  I used to manage my IBS with loperamide (anti-diarroheaa medicine) and enteric peppermint capsules (coated so they reach the intestines rather than being dissolved in the stomach). Thankfully since I no longer work night shifts it has abated by itself mostly. I had a colonoscopy and a number of blood tests to essentially rule out any alternative causes of the symptoms, leading to my diagnosis or IBS.

With my restless legs, up until a month ago I had been moderately successfully managing it with Pramipexole which as I understand it is medication that influences the brains production of dopamine. I have seen a neurologist about my legs and had some blood tests. The diagnosis essentially boils down to the patient describing certain symptoms.

In the last month my RLS has worsened significantly and coincided with a small amount of IBS and also I have bizarrely got very sore feet which feel bruised to walk on for no apparent reason, and are becoming quite debilitating.

I've just been referred for tests on my nerves, an MRI scan and further bloods.

The more I read though, the more I suspect all my issues are interconnected and I have some sort of inflammatory issue or autoimmune problem.  There are lots of articles on the Internet suggesting but not proving that these sort of things are potentially influenced or even caused by the balance of bacteria in people's digestive systems, hence my question about probiotics.  Frankly I'm prepared to try anything if there's a realistic chance it may assist.

[Hidden in reply to sjw_1978]

Well first of all, I believe that the enteric coated peppermint helped a lot.  Maybe try taking it again and see if RLS goes back to mild mode as well as IBS.  I've never tried the DAs but my understanding is you have to keep upping the dose to get relief.  When my RLS acts up I take one capsule of iron bis-glycinate.  Completely gets rid of RLS for one night.  I don't want to get into all of the whys and wherefores but put "some answers" in the search box above and then scroll down a little bit when the page pops up and you will see a long post with lots of replies.  My post includes a long conversation I had with a member of another forum that I named Mr. X.  I am Jane Doe.  He was my biggest skeptic.  He bought and tried the iron bisglycinate and now he's hooked.  Mwahahaha.

[Hidden]

I dealt with IBS for quite a few years too, unable to eat anything with any fat content at all. (Severe abdominal cramping.)  I know, by and large, people are going to think this is completely hoaky, but it was after I started regular chiropractic visits and my lower back got straightened out that RLS eased up to where it's now tolerable, and IBS has completely vanished. I used to take a world of digestive enzymes to try to control the IBS, but it did little good. It was chiropractic that fixed it, and I mean it's gone. And yes, I can "see" all of you rolling your eyes!!!!! But that's what happened. So in my mind, the common denominator between IBS and RLS is some spine/nerve thing. I grew up in a family that considered chiropractors quacks, but when you're desperate, you do what you have to do. They certainly aren't in the "quack" category in my mind any more- they have made my life livable, and I sleep at night.

[nightdancer]

I take probiotics every day for many tummy issues, including IBS, and none of them have ever helped my Primary RLS.

[Hotlow in reply to nightdancer]

Stop posting negative comments on this forum, i have read most of your posts and you are soooo negative.

Get a healthy diet and you will heal.

And ps... Get of Big Pharmas pills, only short term relief.

[Lapsedrunner in reply to Hotlow]

Hello Hotlow,

I think Nightdancer is just saying that they don’t feel that probiotics are influencing their RLS. Sounds like a statement of fact for them, doesn’t sound negative to me.

Do you have RLS?

[Hidden in reply to Lapsedrunner]

Agree Lapsedrunner.

[Hidden in reply to Hotlow]

I think you should know that a healthy diet is not the answer for everyone's RLS. Also many people take meds as the only thing that works for them, and depending on which meds you take, can be taken long term for relief.

[KellyDBrille in reply to Hotlow]

I agree Hotlow -- it seems like she posts negative replies almost all of the time.

But in Nightdancer's defense, her RLS started when she broke her back and got worse as she had more and more back surgeries. So nothing will probably help Nightdancer except strong drugs.

I would be bitter and negative too if I were in her situation. But having said that, I agree that she should stop negating what is helping or what has worked for others.