This Article suggests SIBO ( small intestinal bowel overgrowth) may be linked to RLS. As gut inflammation can cause malabsorption of Iron, and iron deficiency is linked to RLS, this looks very interesting.
Stanford are looking for more volunteers to take part in the study so if any of our USA visitors live near Stanford, please consider taking part.
Thanks Jools, that's something I'm going to look into as I have consistently low iron. I had an iron infusion recently and it improved (but didn't altogether remove) my periodic limb movement.
Don't give up hope yet- studies show it can take up to 6 months for iron infusions to have an effect.
I'm going to find out how I can get a SIBO test here in the UK. Most treatment is free here but I'm pretty certain my doctor will tell me to get a private test.
Thanks Jools, that's a really interesting finding. I've just read a book all about the gut that someone on here recommended (Gut the Inside Story of Our Body's Most Underrated Organ by Giulia Enders), and it was fascinating. it wouldn't surprise me at all to find there was a link. There seem to be so many avenues for research which must give us hope!!! 
Or at least, some of us as the thing that's seems most universal with RL is that nothing works the same for everyone.
I am convinced the gut and. RLS are related. I had occasional RLS eg on a plane or in the theatre. Then I had a very bad frozen shoulder. I used ibuprofen then naproxen and Omeprazole. Then the nightly horrors commenced. I had my gut bacteria tested. Although it did not show SIBO it did show yeast overgrowth. Medication definitely changes the gut microbiom. I went on a diet cutting out practically all sugar including only being able to have things like carrots and sweet potatoes once or twice a week, no yeast no alcohol (the yeast feeds on these). I have not had my bacteria re tested but feel so much better. The RLS has not gone but is improved. Although I have done other things so you never know what has worked. A nutritionist also told me 50% of our dopamine is made in the stomach not sure if that is true or what conditions are needed to make it.
Its true...50% of dopamine is made in the gut.
Great book. Who knew there were neurons on the gut! I recommend that book to all my friends.
Expect you have already researched MS as an autoimmune disease which may be associated with gluten sensitivity. Interesting article in Multiple Sclerosis news today.com
Title - Gluten- free Diet and MS. Gut problems including IBS may be linked to diet and tests for food intolerances are available with finger prick blood samples sent to labs. Gluten in grains is one sensitivity in grains and causes a sticky stringy substance to build up in the body which can damage organs. However there are 27 different proteins in wheat alone which form a sensitivity in the gut which is not gluten related. Tests for celiac disease another autoimmune disease may be linked to other autoimmune disease. Egg dairy and grains are tested but this is a limited range of food tests. Glad your meds are helping.
Yep. I was gluten free from 1995 to 2015. Made no difference at all to my MS (or RLS).
Tysabri,however, transformed my life. Now eat whatever I want. Diet has no effect on my RLS but I have found caffeine and moderate alcohol help. I know that is contrary to the usual advice on RLS.
Gluten is not the only substance which is in grain. Having tested as being gluten tolerant a further smart test indicated I had wheat rye barley maize rice dairy egg and banana. The drug you are on must somehow help your gut. The test was new to UK in 2017. Other gluten like substances mimic them in coffee and chocolate powders. The tests here with state medicine are skimpy only testing for a few foods common to celiac disease. Guess you have had tests already for celiac disease. It must be so difficult with MS with restless legs. Suppose you have had sodium and potassium levels vitamin d and calcium ferritin and iron tests within the last 6 months. Celiac disease can lower iron absorption in the blood making you tired. Must look that drug you are on as it seems to have transformed your life.
It’s a monoclonal antibody. Natalizumab is the correct name. I have followed many very strict exclusion diets over the years for extended periods ( more than a year). I have Gulia Enders book ‘Gut’ and am aware of the link between the gut and the nervous system ( there are neurons in the gut).
I can honestly say no diet has ever made any difference to either my MS or my RLS.
I do use good probiotics and prebiotics and use ferrous bisglycinate every other night to raise ferritin levels & fool Hepcedin. I also take magnesium, high dose Vit D & other weird & wonderful supplements.
Diet definitely helps some people and I’m sure it’s because they have ‘leaky gut.’
As we say often on here WAAD.
We are all different.
Yep you have had good meds. But you still have restless legs? What about potassium levels ?Are they low normal? Are you oestrogen dominant as this can drain your minerals? Have you read the article -Restless Leg Syndrome Cause
Proceeding heme iron polypeptide is now replacing infusions in the States as it is absorbed easily. Better for people who can't absorb it due to their auto immune disease. It's great you are doing so well. No need to reply.
I’ve read extensively about oestrogen dominance and even bought the natural progesterone recommended. And guess what? My RLS went through the roof. Progesterone in any form makes my RLS much worse.
I appreciate your sending me the info but I have literally tried EVERY possible suggestion over the years- even went vegan for a year, bought acupuncture mats, and yes, I even tried the ridiculous soap under the bed sheets.
I now realise that dopamine agonists prescribed by well meaning neurologists over 20 years ago ( before research revealed the link with low brain iron) have permanently damaged my dopamine receptors and nothing will relieve the RLS except low dose opioids and cannabis.
My mission now is to warn others of the dangers of dopamine agonists and to try to resolve their RLS by raising brain iron levels, whilst accepting this will only help 46-50% of sufferers.
Sleep well.
Get it. Last suggestion have you tried eating bananas and drinking tonic water. Sometimes ge tpainful leg cramps and it helps within minutes . Hot baths and compression socks or those used for travel by aircraft might help. Epsom salt footbaths with a spoonful of salts might help . Sure you will find other info along the way which you haven't seen before.
Yes to bananas for the potassium- I also drink adrenal support (orange juice with Cream of Tartar & himalayan rock salt). No to quinine as it works for cramps but waste of time for RLS & MS spasms. I can send research papers on this if you need them. Quinine has been linked to heart irregularities so use with caution.
I have used compression socks during Augmentation and they helped a tiny bit and I also know about very hot baths.
As I mentioned, I have almost tried EVERYTHING. I have a rooms full of expensive devices/contraptions/supplements.
The only things left for me to try are LDN ( I need to pluck up the courage to try this as I have to stop all other meds & the thought of severe, non stop, suicide inducing RLS is unpleasant) and Methadone/Buprenorphine which are not prescribed in the UK for RLS, but hopefully that will change if more research is carried out.
I do appreciate your suggestions but I have a lot of time on my hands and I research extensively.
Take care
Jools
Recent research 2018 pub med shows that MS sufferers are low in vitamin K. Supplements may help mitochondria. What does your neurologist say about the problem concerning the blood brain iron barrier and the drug you took? You can report this on the yellow card keys in gov system .Profile analysis tab gives info to effects of drugs in graphs ,without giving personal information.
Reported Augmentation on both the Yellow Card Scheme & the FDA equivalent 4 years ago. My MS neurologist now prescribes pregabalin as first line treatment for RLS after I printed off all the latest research on DAWS & DAs and after she saw how traumatic withdrawal was. She wrote to my GP surgery & advised them to treat me as a patient expert on RLS. She acknowledges that I know far more about RLS than she does ( as I have the time to read the latest research papers).
My RLS neurologist is not so good- Professor Chaudhuri at King’s College in London. He and his team still recommend the Neupro patch ( Rotigitone) after augmentation on Pramipexole and Ropinirole which goes against ALL the latest studies & research in the USA.
As far as MS is concerned, I have only had one relapse in 11 years on Natalizumab. My MS is not the problem. My RLS continues to be problematic but I manage to get enough sleep.
Joolsg, I'm glad I read your paragraph re Prof Chaudhuri as I was considering contacting his private clinic. I won't bother now! I thought he was supposed to be one of the best RLS experts in the UK and he's still prescribing DA's!! Shame on him! Oh well, I'll stick with my current consultant. x
I was really shocked- I’d waited 9 months & saw his Senior Registrar. By then I’d been off Ropinirole for 7 months & was doing well on oxycontin & pregabalin but the registrar kept insisting the Neupro Patch had ‘less risk of Augmentation’. Unbelievable- I explained I’d had dreadful augmentation & withdrawal.
I know King’s are still transferring people onto the Patch. They’re only good for confirming to your GP that it’s acceptable for you to stay on low dose opioids. I speak to a registrar every 6 months for follow up & I have asked why Methadone & Buprenorphine are not prescribed by King’s. The answer is money. They won’t rely on US studies, they need to carry out their own research, there’s no funding for research. AAGH.
Sleep well x
How disappointing for you with King's response! When will the so called UK experts take their fingers out of their ears and just listen to the latest studies?! My consultant also wanted to put me on the Neupro patch for the same reason as yours!! It's as though they are like a herd of sheep! I flatly refused and he did respect my decision but still mentions it when I speak with him! That said, he's agreed for me to have an iron infusion so we'll see if that helps me. You never know, I might be one of the lucky ones that it does! You too sleep well. x
That is so disheartening. On the flip side though, its good that they at least agree to continue low dose opioids. In India, it is pramipexole all the way. Just yesterday, I found someone who takes pramipexole 0.5mg twice a day for her RLS 
You are a very courageous person to have worked out your treatment plan yourself. It is odd that sometimes a paper clicks and you go on a trail to find what is the neuropathway. I do think homeopathy might help. There is a detailed compendium of different ailments and the appropriate substance. These are not harmful and have helped many. My hubby found an old pot of muscle oil which helps his muscle aches soothing them. I use a hot and cold skin device with ultrasound which helps frozen shoulder and arm. Hope you find the answer to your problem
Argentum nitricum, Causticum and Arsen alb are effective homeopathic medicines - source
drhomeo.com/homeopathic treatment/homeopathic medicine restless legs.
Have used homeopathic remedies used with conventional meds and they helped . Some practices have a referral to this medicine for free. Some chemists have leaflets to explain use and there are online websites with links to free self help and to homeopaths. Take care.
Hi. Very interesting. I have been reading all about this just this afternoon. I find it really interesting because for the last year I have had trouble with a sore tight abdomen and after an ultrasound and tests nothing showed up. I was reading about the low FODMAP diet and came across stuff to do with the gut. I wouldn't surprised if there is a connection with my rls.
The fodmap diet has some ardent supporters on here.
Cheers for this.Intuitively I agree.I believe I have an absorption problem. Please post if you get a Sibo test on the NHS.I would be keen to do the same.x
I will- & if I can’t I’ll find where I can get one done for as cheap as possible. I seem to remember my daughter had one a couple of years ago/ she’s into alternative health in a big way.
I have spoken to my GP and she said I would have to get a SIBO test done privately- it costs an average of £160 if you do a postal kit or £300 if done as a day patient,
If the test is positive you would then need a prescription for Rifaxamin antibiotics. My GP said these are expensive antibiotics and she wouldn’t write an NHS prescription.
So I calculate it would cost about £700-900 to be tested and treated.
I’ll maybe wait/ save up a while before spending more money.
Hopefully more studies involving more patients ( it was a very small study) will be carried out and if they show a clearer link, we could lobby NICE to recommend everyone with RLS has a SIBO test.
I have had my share of IBS and supposed SIBO (never tested for it), GERD and RLS. Most recently I started on a course of Oil of Oregano (2-4 drops in a carrier oil - I used Walnut Oil). It mostly stopped the GERD and I no longer have the IBS symptoms - horrible bloating, etc. I have also eaten Kimchi daily and taken probiotics for years (now only periodically). Here's 2 good articles on Oil of Oregano and SIBO
sibosurvivor.com/oregano-oi...
ncbi.nlm.nih.gov/pmc/articl...
Thanks for the link. Off to buy my oregano oil capsules!
I'd seen places where the gut is called our second brain, so I googled that and found a fairly short but interesting article here- mindful.org/meet-your-secon... It doesn't mention RLS, but it does mention connections between the gut and depression and stress. Everything is interconnected and looking like anything that will improve your health one way or another can only help. Thanks for the link!
Apparently Aristotle said 3000 years ago that all diseases originate in the gut. It really does seem to be the new frontier in medicine. Pretty sure that all the antibiotics we all take and the increase in sugary, processed food has changed our microbiome in the gut. It’s not the main cause of RLS, I’m sure, but I’ll bet it makes it worse.
Really interesting article. Thanks.
I will organise a SIBO test soon to see what it reveals.
Fantastic! I have just come across your post as I was searching for posts relating ibs or poor gut symptoms with RLS, as I have both and I’m really interested in the microbes too. The gut is like a second brain.
I’m reading 10% human by Alanna Collen at the moment which is a great read too.
So much research still to be done I don’t think we know the half of it yet!
RLS differential diagnosis
Parkinson’s and RLS
Hepcidin as biomarker for RLS - study
rls
