I found this website that is located in the US. I recently started it, using mostly all the recommendations. The Blog owner does not appear to be profiting from it, or and of the supplement recommendations. If anyone else has or is using it. I would appreciate some feedback, good or bad. Here’s the link , you may need to use a VPN to access it therestlesslegsblog.wordpre... Good luck to everyone, hopefully it helps someone.
RLS Cure Blog: I found this website... - Restless Legs Syn...
RLS Cure Blog
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Wanman4
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I just tried to use the link that I attached to my recent post regarding RLS Cure. It won’t open from the link, but if you have access to the Brave Search engine, you can copy and paste that link to it and it opens ok. But, you may need to use a VPN to access it.
I had no problem opening the link with firefox in the US. And I agree with Joolsg.
if I cut that lot out I might as well join a monastery 😊
Eryl will like this. Diet only helps a small proportion of RLS sufferers. But it's definitely worth a try. If after 6 months there is no change, you can assume diet is not the cause of your RLS.
No matter what your health condition is, a proper diet of low carbs, fresh fruits and vegetables, as well as no hydrogenated seed oils. Use unsalted butter instead. In addition, for fiber you need leafy vegetables such as salads, and zero sugar or high fructose corn syrup. They will lead to Insulin resistance and cause weight gain, and as well as both diabetes 1 or 2, as well as heart disease. Cutting caffeine and alcohol also is essential to good health, in addition to moderate exercise to include mild stretching such as Yoga.
Believe me, I know all about anti inflammatory diets. I've spent years on them. Currently on keto diet for my MS. It makes zero difference to my RLS. Only Buprenorphine has helped the RLS.As I said, diet definitely helps a small proportion of RLS sufferers, but not everyone will benefit.
Put caffeine in the search box and you'll find that it improves RLS for many. Me included.
I still believe in most RLS cases the cause of this disease is in the gut (SIBO, pathogen bacteria, yeast or mold, bacterial dysbiosis, missing keystone bacterial species, inflammation etc). Depending on the specific gut issue if someone is lucky enough may find the solution using diets like anti inflammatory, carnivore, vegan etc, but in most cases diet on it’s own is not enough the fix the aforementioned gut problems, especially if the diet you choose is not proper for your particular gut issue. If I’m right the most important is to find your particular gut issue(s) and then focusing to find the best solution to get rid of them.
Sibo is definitely implicated in many RLS cases.My belief is that there are several causes of RLS.
Anaemia is the most common cause.Increase brain iron by raising blood iron and the majority of cases will improve. Anti depressants/sedating anti histamine meds are another common trigger.
Then spinal injury, either through accident, operation or disease. RLS is more common in MS and Parkinson's where the brain & spinal cord can be damaged. Hip, knee and back surgery can cause it.
Then kidney disease and then food allergies/intolerances and SIBO.
And then there are many who have had it from childhood with no obvious cause or trigger. Maybe diet & gut bacteria play a role?
That's why there is no ONE solution that helps everyone with this disease.
Many are lucky enough to find the cause ( Anaemia/sibo/food intolerance) & can be med free.
Others ( spinal injury, kidney disease) have no choice but to rely on medication.
It's trial and error to find the cause/trigger for most of us.
Well, what is the reason of iron deficiency anemia? Iron is not able to absorb from your small intestine into your bloodstream . Possible reasons: low stomach acid (due to helicobacter pylori infection, low zinc, B1 or B6 vitamins, long term antacid or ppi usage for acid reflux/GERD, age) , inflammation in the small intestine (SIBO, pathogen infection, gluten etc), especially in the duodenum where most of the iron should absorb, SIBO as the bacteria need iron to thrive, thus they consume the iron before it could be absorbed.
Spinal cord, hip, knee, back injury or surgery: all of these can affect vagus nerve, which also connects your gut and brain in a bidirectional way and also responsible for your gut motility. Problems with vagus nerve can lead to impaired motility or migrating motor complex (MMC) which is suspected to be the main reason of SIBO.
Blood brain barrier (BBB) issue, which suspected to be one of the reasons of RLS in case there are enough iron in the bloodstream: studies suggests a connection between BBB and the gut state, as inflammation in our gut could induce the inflammation of our BBB.
Parkinson’s, Alzheimer and other neurological diseases like autism, depression, anxiety are all now suggested by several studies to be a cause of gut microbiome issues.
I have my RLS since my early childhood, when I got at least a dozen antibiotic treatments, which can completely destroyed/altered my microbiome in a bad way. As I wrote earlier here, last year I had a microbiome test and the result of the test was that I’m suspected to having a neurological disorder, mainly because I nearly lack all of the most common lacto and bifido bacterial species , which are capable to produce neurotransmitters, like serotonin, GABA, glutamate etc. Moreover I have way more pathogens (6%) in my microbiome than for example the overall lacto and bifido bacteria (0,05%), but interestingly I had/have only very mild gut issues. So even if someone doesn’t have serious issues like constant diarrhea or constipation, neither reflux nor bloating, can have unhealthy microbiome which could cause neurological problems.
Just let me know, if you interested in any of the topics I mentioned above and I could explain it in more details or provide links to related studies, articles or documents.
I can recommend an excellent book. Gut by Julia Enders. I've followed her for years. I've taken Symprove for years to improve my gut micobiome and ensure I eat pre as well as probiotics.MS is now strongly linked to EBV so trials of anti virals will hopefully happen within the next 5 years.
I'm glad you've found the cause of your RLS and a solution.
Well, the solution to my RLS has not been complete, as 10 days in a row were the maximum time I was RLS free since I’m working on the fix so I’m still trying to figure out the solution that works for me long term. At the moment I take a phage complex to reduce E. Coli, one of the pathogens found in my microbiome I suspect as one of the possible root cause. Will see if it has any effect.
To be clear I’m not implying that eating a healthy diet is going to fix or cure RLS. But, it only makes sense that you try to maintain healthy energy levels, as well as avoiding degenerative diseases that are usually associated with poor diet. It can help with getting regenerative sleep, as well, as allowing you the energy to moderately exercise, which will help your sleep. As we all know, everyone’s RLS levels are different, so no one thing is going to work for everyone. That’s why we come here to learn.
Totally agree. Diet is definitely worth a long trial if nothing else has helped. To use Involuntary Dancers acronym, WAAD ( we are all different).
Can anyone explain to me the long term downside to eating a healthy balanced diet, I agree it’s probably not going to cure your RLS, but you may feel better overall. I know I do.
Hi Joolsg, still hanging on. I have tried all of the suggestions on this forum and elsewhere with no avail! Searching on the net and reading everything to find an answer for the past 7 years.Blood infusions, Gabapentin, Pregabalin, alternative remedies etc. My meds are Rapramil and Clopiderol which my Dr refused to take me off I've recently stopped the former and I'm taking aspirin instead.
Still hanging on. My GP's still can't prescribed Tramadol it's banned for RL S or Bupremorphine for me both are not allowed in Wales. She gave me Oromoph 5ml x daily, but I has no effect on me. I was given 10mls in hospital after 6 nights and days of no sleep and walking the ward, I managed 2 hrs.
So here I am again just hanging in.
If I was a dog eating little, wasting away, walking or tapping non stop, crying out etc. I would have been euthanized long ago. How can professionals see how devastating this condition is.
I am still desperate, no life at all. If feel I'm due for the third stroke. My family, see how I am and not being able to help its affecting them too. My dear husband cries with me knowing he can't help me.
I'm with you all the way but .........
Love and God bless.you all
P
Can you ask for a referral to a sleep clinic? 5ml of oramorph is the starting dose for RLS. 10-45ml is the effective dose range, so no wonder you aren't sleeping.I had no idea tramadol and Buprenorphine were not allowed in Wales. Maybe your GP means he's not prepared to prescribe them for you.
As you have a history of strokes, sleep is essential. More sleep will reduce blood pressure and improve your arteries etc.
Insist on an urgent referral to a sleep clinic. I know there is one in Birmingham, not sure if there's one in Cardiff.
A sleep clinic or knowledgeable Neurologist would prescribe a low dose opioid to reduce your severe RLS and allow you some sleep.
Show the GP the Mayo Clinic Algorithm and the RLSUK website, both of which set out the dosage for tramadol, oramorph and Buprenorphine.
I'll see if I can find a decent neurologist/sleep clinic in Wales. Are you North, South or mid Wales?
abuhb.nhs.wales/hospitals/a... this sleep clinic.
cardiff.ac.uk/cardiff-unive... sleep clinic.
Tell your GP that Shumbah was able to stop her High blood pressure meds once on Buprenorphine because it stopped her RLS and she slept properly for the first time in years. Sleep reduces HBP and your GP is depriving you of sleep.
Dear Joolsg
Thank you so much for responding to me, I’m so desperate. I have to wait for 23 months to see a neurologist. So have contacted Mr Early in London. Morphine didn’t affect me at all. My blood pressure is ok I can’t eat much a small amount of veg & or avocado, eggs, tuna, & so it’s helped there. My hospital has just phoned me, I have a 12 mm lump on my kidney so needs investigating, my body is disintegrating fast. Thank you for your interest and helping me. XXXX
I'm so sorry to hear that. The lump on your kidney may be worsening your RLS because kidney disease and function can cause severe RLS.Do push for an urgent sleep clinic referral. Contact them direct and set out in the email all your symptoms and meds and, if you can, keep a daily diary, noting the times if RLS and lack of sleep. Copy your GP surgery.
Dr Earley is in the USA. Do you mean Prof..Walker at Queen Sq?
Ok thank you, no wonder I’ve had no response. I’ll contact Prof Walker soon as. X
Hi JuolsgThank you for your kind response.
My daughter has contactel Dr Walker's office and spoke to his office. One of the consultants or his associates will responsible I hope.
I have obtained Cannabis. I took 2 drops yesterday at 5pm -
At 9am this morning.I took another2 drops.
I feel very tired and drowsy but not still able to sleep more than before. Would this amount help me sleep? Is it the type of cannabis I need.
My legs are on fire, back to walking.
Thank you for reading my message. X
I very much doubt it's cannabis oil with THC. Medical cannabis is only available from doctors at private UK clinics and it takes a while to arrange as you need to have a zoom consultation and the clinic has to contact your GP for medical records.It's expensive, about £50 for the consultation and then about £100 for a 30ml bottle of oil with THC. It's best taken at night as you can experience a 'high' so it's better to be asleep.
Sapphire Medical Clinic and the Medical Cannabis Clinic are both helpful.
Joolsg, continue as above.
Thank you for your response Joolsg
The Cannabis was obtained from non medical source , supposed for pain relief but only made me drowsy , Back to square one. I did get a few hours with a little less pain from the new Tramadol but no extra sleep. I’m still tearful and loosing weight.
I will hang on, just received letters, I’ve got a chest exray, kidney exray, colonoscopy and endoscopy examination coming up in the next 2 weeks.
Thank you Joolsg for your kindness, understanding and knowledge I’m much obliged. God bless. X
Nightwalker, I really think you should start a new post setting out your situation with the meds you are currently taking and your symptoms.There are so many knowledgeable people on here and someone may know a good GP or neurologist near you in Wales who can give you urgent treatment.
Tramadol is not the best opioid for RLS because it also causes augmentation. There's a useful explanation on Dr. Berkowski's helpful RLS website.
Oxycodone and oramorph and Buprenorphine are better options, but have to be taken at the right dose and time for RLS.
The RLSUK website has a printable table under 'treatments'.
Thinking of you.
Thank you so very much, just being in touch has helped me. I've been px Morphine as I mentioned, I took it x3 10mls yesterday and Tramadol at night. I slept for 6 hrs last night, so much better.
I'll do as you've advised. X
Some of you may be familiar with Tim Spector book Food for Life. It doesn’t deal with RLS but is a mine of information on foods and what you need to know to understand what you are eating and how it got to be the way it is.
What happened to the medical marijuana you said worked?
It helped for a short while, but a good quality CBD product worked better for me.
Is this diet helping you ?
Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
The link works fine for me, thanks.
Diet can certainly be an important factor in health in general and in RLS specifically.
From my own experience, as far as RLS goes, I know that I have to be careful with sugary foods, including chocolate, artificial sweeteners, caffeine... I have only experienced RLS on the few occasions over the last few months when I've binged on inadvisable things.
But plenty of RLS sufferers have experimented with all kinds of diets, excluding all sorts of foodstuffs. Some, such as Eryl, have been successful and rid themselves of RLS symptoms; but others have found that changing their diet has made no difference.
Diet is important to health in general, but it's not on it's own a universal answer.
In general I agree wholehartedly that the main problem is inflammation but disagree on some of the causes listed e.g. I do not find caffiene to be a significant problem nor red meat (at least in the quantities that I consume them). The things which I found were significant triggers for me were fruit juice and bread.
One thing that I have found recently which is a great reliever of stress which may also help some people sleep is the herb ashwaganda. As it lowers cortisol it also lowers blood pressure quite markedly and quickly if stress is the cause of your high BP.
How much Ashwaganda is recommended per day. I'd like to try it. Thanks
I would recommend a good and affordable brand such as NOW foods, and follow the instructions on the label. I personally take a Ashwanda supplement that I buy off Amazon, the Brand name is OGOBI. It’s contains not only Ashwanda, but also, Tumeric, Rhodiola Rosa, Ginger, as well as Black Pepper, which makes the ingredients more bioavailable. I take it to address my high cortisol levels, so far, that with diet and exercise they have been coming back into normal ranges. Always, try to talk to your Dr about it. I’m very fortunate that I have a MD who is also actively studying and applying Functional Medicine protocols to his practice. Good luck!
I find that one 500mg capsule before bed is enough for me though I have seen 2000 mg capsules sold.
I'm positive that there is a strong link for me with cortisol. I have diabetic friends who suffer from RLS. My sugar level is always on the upper limit but never over so they don't check me for diabetes. So this Ashwaganda should help a lot. Thanks Eryl, I've just ordered it
RLCure was one of the first websites I found - prior to discovering the iron connection. So, I jumped in with both feet and tried all of his protocols - all well and good, but nothing compared to just adding Ferrous Bisglycinate to fix my iron deficiency and release me from the severe RLS. I still have sleep issues and I take L-Theanine and ashwaganda most nights before sleep.
Glad to hear about the Bisgylcinate Iron helping you. I had no luck with it, but again we are all different.
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