Wondering how many here have Irritable Bowel Syndrome as well as Restless Legs Syndrome?
I have read that there is significant relationship between the two- presumably around inflammation. Would like to know if others have found this?
Have noted my husband's restless legs seem better when he has avoided FODMAP foods that affect him. Not sure if coincidence and hard to test as so many things seem to influence his symptoms. He has never been on it for long enough to narrow down a list of the main offenders.
Thank goodness for this group.
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Correlating RLS to diet is difficult due to there often being a delay in symptoms resolving after the foods are removed. Also there isn’t much useful science on the subject as most papers focus on testing drugs or as an avenue developing new ones, as well as the emphasis on RLS as a neurological disease, which it isn’t; it is a motor sensory condition.
If you follow the discussions on forums there is a noticeable lack of interest or discussion in mechanisms or ‘cause and effect’, which gives a freedom to just say anything without at least a reason for it. This leads to fractured and often pointless statements that are very random. This is not the fault of the posters, but of the researchers and medical community.
My view is that diet or digestive system issues have a clear mechanism for a good percentage of people with primary RLS, which I differ on in some areas of the scientific definition, for those that get benefit from exercise, physical treatments and supplements; including iron.
So the main diets reported are FODMAPs, Keto and where I found success, low oxalates. These can be an instant success or a long drawn out process creating doubt.
IBS, leaky gut and microbiome problems would likely be part of the problem if not the situation to start issues with RLS.
My observation too. Tantalising when you feel there is a key there somewhere. Aware of oxalate issue as it clearly ( but unpredictably) affects my husband,Greg. Never managed a strict exclusion for long. Should try again. Thank you Accipiter.
Oxalates are a wild ride to take, it is not easy and even though it is the source of my RLS I swear it has nothing to do with it at times after not sleeping due to symptoms.
It is another added level of cruelty as you have a poisoning to add to the problem of not sleeping.
If your husband wants a support person, or an oxalate buddy, send me a message and I will make contact.
The bit about antibiotics has made my brain hurt working out a mechanism. It could be a 'just you' thing or some very interesting insight into the condition.
Probiotics have never helped me, but maybe it is not a lack of, but something that shouldn't be there and taken out by the antibiotics and repopulated after.
There is a definite link with SIBO so perhaps when antibiotics are taken it kills of the ovegrowth reducing whatever the problem it is that affects RLS... ??? It would be temporary as the overgrowth mechanism would continue if the initial issue isn't resolved and so continues to affect legs???
For any RLS mechanism theory to work it has to incorporate all the treatments and experiences within reason. But that starts with speculation and building from there.
The micrbiome is so complex with interactions, it could be cause or act as a treatment when messed with.
SIBO and Restless LS associated according to Weinstein studies (US I think). He treated with particular antibiotic ( not available in Oz far as I know) with significant success. They were actually trialing it for SIBO only and then noted the results with those who also had RLS. I have read from people who had success with that treatment that it still comes back eventually- and they repeat the antibiotic. Obviously not desirable long term.
However, I did wonder if anybody has tried faecal transplant used successfully for very bad gut issues. The main researcher for that is here in Australia (he is the one who developed the appropriate medication treatment for Helicobacter caused stomach ulcers). If the biome were the basis of the problem, at least desirable probiotics would not be destroyed in the process. Very early days in biome research but I see that they have already identified a 'Parkinson's signature' in the biome. Given Parkinsons affects same area of brain as RLS (Substantial Nigra) albeit differently, I watch that research with interest.
This is the sort of research that breaks the back of the much needed mechanism of RLS. I have in previous posts put together how oxalates can be one complete model, with other causes slotting in somewhere. Mast Cell Activation Syndrome (MCAS) is another identified cause of RLS that kind of fits in with oxalates, but with a few holes here and there.
Antibiotics should be commented on more widely if generally having an impact on RLS. So it must be for a specific cause of RLS being either just SIBO , or only identified in SIBO cases and more widespread but still making up a small percentage of RLS cases. It is a very significant discovery with regard to an RLS mechanism.
What a bummer that antibiotics are a solution as they are unsustainable, or at least undesirable. As with stems cells, microbiome science has been a massive let down over the period that I have been reading about it and hoping for good outcomes. Faecal transplants or ‘trans-poo-sions’ have resulted in some very bad outcomes so has had the brakes applied generally.
The microbiome could be more of an identifier in many conditions, other than the cause. I find it hard to ignore all the other evidence and construct a mechanism for many conditions such as Parkinson's, but there is just not enough information to be conclusive at the moment.
I would speculate with RLS that an excess of some microbiome bacteria, or lack of, either allows excess oxalates or other compounds to be absorbed as one cause, and in the case of antibiotics that change impacts brain chemistry enough to disrupt the machinations of the RLS process temporarily. In reality the possibilities are endless.
With any speculation on RLS cause and mechanism, there is always other research and anecdotal experiences that have to be incorporated.
Something I read the other day regarding virus DNA in human chromosomes being connected to MS, and thought to be linked to other brain conditions, was very interesting. There are a variety of situations where the virus DNA is transcribed producing ‘alien’ proteins that wreak havoc. The first indication of this being a part of RLS would be the effect of antivirals on symptoms.
There is a big group of troublesome conditions of which cause and mechanism is largely unknown that could fit into microbiome and/or virus DNA as a factor.
I was diagnosed with ibs after having gall stones and gall bladder removed.This was years before I started having rls.Don't know if this brought on my rls?As previously stated on this forum,gp's do seem to be lacking in rls knowledge and what it could be linked to.I've never been asked to have my iron levels checked.
There is actually one researcher who has published some work about the connection between the two. Here's one article:
"Restless legs syndrome is associated with irritable bowel syndrome and small intestinal bacterial overgrowth. - PubMed - NCBI" ncbi.nlm.nih.gov/pubmed/215...
Unfortunately, there has been very little follow up. I imagine it's not a connection that the pharma industry sees much potential profit in. Hence, they aren't financing any studies around the topic.
In my case, intense SIBO came first, then came the RLS. Mine responds somewhat positively to keto, but it's far from gone.
Good luck with your research and journey into this topic!
Well you have opened up a can of worms! The gut/brain connection is a paramount driver of many mysterious health conditions. I constantly jigger my diet and supplements (amounts and timing) to help with RLS and insomnia. I've had IBS (which is a catch-all for any constipation/diarrhea affliction) for years - mostly on and off. I have self diagnosed with SIBO (severe GERD, bloating, IBS) and treated it with herbal antibiotics, fiber and specific probiotics. My interest stems from severe RLS for many months with a low Ferritin level of 49. Iron supplements completely reversed the severe symptoms. But the million dollar question remains - why was I iron deficient in the first place? More than likely an absorption issue.
I've written previously on posts that when I was not on any 'diet' I tried to increase my iron levels and managed to go from about 70 - 73 over three months - very tedious. I then started on FODMAP and within weeks had topped 100. My theory is that the intolerance to foods were interrupting absorption/or causing leaky gut making it hard for my gut to absorb the iron. Once I stopped stressing it with the questionable foods, I was able to absorb iron more successfully. Iron definitely IS related to RLS and if something is interfering with absorption, then diet can be related to it. It was an interesting observation, though scientifically, the two are not proven to be linked. However, it was interesting to ponder. There are many factors in this equation and we're only skimming the bucket! All thoughts though are worth putting out there.
I have RLS and stress related IBS so my IBS isnt related to food. I suffer with IBS-D. Also i want to point out that RLS IS neurological.
Iron definitely IS related to RLS- though many people have differing experiences of improvement with increasing iron. If something- perhaps some foods stressing the gut for instance, causing leaky gut, may interfere with absorption of iron, leading to an effect on RLS, then diet CAN be related to it.?
Nope not for me, when i first started getting IBS i was a teenager and it happened when in a work situation and i got stressed over work. I was referred to a dietitian by my doctor when it got so bad i was taking time of work, and had to take up to 3 imodium just to get to work, and it didnt help my IBS, then i retired 4 months early and once i stopped work my IBS stopped. Now its only when i get stressed over something, it will flare up and as i said its IBS-D.
I think we're talking at cross purposes Elisse. I'm not doubting your IBS is stress related, and also that it doesn't affect your legs. (I too used to suffer from it until I took up meditation.) I was simply saying that although RLS is neurolgical as you pointed out, it can be affected by gut issues i.e. inability to absorb iron readily, due to gut problems.
Hi restlessstoz, oops yes i think we were both talking about different things. Also i was pointing out that RLS was neurological , because another person was saying it wasnt, that wasnt directed at you.
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