Did any body read the recent article in the british daily mail newspaper. An american doctor believes cutting sugar in ones diet could help relieve rls. I just wondered what other peoples thought were on this.....im currently taking a spoonful of kratom before bed, this is a recent thing, but the last week or so ive managed to sleep with very little rls after a very bad few weeks, where i felt like giving up. I understand kratom can be addictive but there again so are most of the meds the ,in my case, that the ignorant gp's are giving us. Mine has got me on amtrypteline at the moment which is an anti depressant
Sugar free: Did any body read the... - Restless Legs Syn...
Sugar free
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Griso1100
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Cutting out sugar or all sugary food or drink can help some people. It’s a trigger for RLS . Depends if it’s your trigger. Sugar or any sugary food has no worse affect on my RLS. So i can eat chocolate cake , sweets etc. It’s a try it and see if it helps. 😊
This was recently the subject of a post. See healthunlocked.com/rlsuk/po...
kratom is great but it will lose effectiveness over time so is not a long term solution.
amitriptyline makes RLS worse for most. The only safe antidepressant available in the UK is trazodone.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not 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, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. 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.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thanks for that sue...i have not had the ferritin levels checked but i will suggest it to my doctor next time i see her. I do take iron supplements (feroglobin) because i was found to be anaemic a few years ago. Thanks for the advice. I understand kratom is not a long term solution , my rls tends to come and go, but i had had a couple of really bad weeks. It was affecting my work, i was having to take sick days as i was so exhausted, but in the short term it has helped me get some sleep the last week or so, or was at the end of my tether. Ill let you know about my ferritin ,tsat etc if i can convince the doctor to do them. Otherwise ill try and go private . Cheers
Checking your ferritin is the first thing your doctor should have done which shows you that your doctor doesn't know much about RLS.
Hopefully kratom taken only when you need it will never lose effectiveness for you but if it does don't let him/her prescribe a dopamine agonist (DA)like ropinirole (requip) or pramipexole (mirapex). Gabapentin or pregabalin are now the first line treatment for RLS.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Feroglobin is a slow release form of iron and bypasses the area where it is absorbed. Instead take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout.Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Again, thanks sue. A lot to take in, im gonna get a note book and write all this down to take to the doctors
Hello Sue Johnson, can you please tell me where I can get kratom. I live in Northern Ireland and suffer with osteoarthritis, osteoporosis and spondylolisthesis and awaiting date for spine surgery. I am on the urgent waiting list and terrified of going through with it. Thanking you. x
Hi aoibheann, im using kratom at the moment to help my rls. You can get it fron kratom.co.uk, you want red vein for pain and to help with sleep. Order online comes next day . Not cheap but been a godsend for me . Hope this helps
Grisco has answered your question but I have some information for your surgery. Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine and ask if there will be any drug interactions from what they will give you. Naloxone can affect anesthesia so tell them if taking. Also talk with the patient representative ahead of time. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran (ondansetron) for anti-nausea. You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also there is a 2 page handout "Surgery and RLS: Patient Guide" on the RLS Foundation website which is very helpful. Also "Hospitalization Checklist for the Patient with RLS"
Are you still taking Amitriptyline? It is a tricyclic antidepressant and makes RLS worse for many. Are you taking it for depression or for pain? If for depression I recommend trazodone which is safe for RLS.
I see you were on pregabalin and gained a lot of weight. You might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiply the pregabalin amount by 6 to get the correct dose. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not 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, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. 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.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thank you for all that information. I’ve a medical a pre assessment tomorrow for surgery. I’m going to cancel my surgery, it’s tricky and May end up worse than before. I’m 73. Have you any thoughts on my decision. XX
Only you with advice from your doctor can decide that.
Hello, my Consultant and my GP don’t advise me either way. Consultant says he cannot guarantee success and my GP says it’s tricky, so then they say it’s up to me to make the decision. I’m extremely reluctant to go for surgery and my husband and grown up children don’t want me to go for it. My son said to me, you’ll go through huge trauma for little reward if successful. His words struck me like a bolt of lightning and I do agree with him. Thank you for taking time with an elderly woman Sue. XX
Hi. I have stopped taking sugar and stopped having any caffeine, either coffee or tea, after 6pm ( I usually go to bed about midnight). I take Iron tablets and a shot of Ginger in the morning. I am taking 2mg rigotatine along with 600mg of gabapentin with 10 mg of baclofen. I have stopped taken tramadol altogether as well. I have not had an episode for approximately 12 weeks which is the best I have ever had, I have no side affects from the Rigotatine which I am totally surprised with. I know everyone is different and suffers in different ways but hope this gives some information for someone.
Thanks for replying...i have cut down to 1 coffee when i get up, the rest of the time its redbush tea, caffeine free. Its really trial and error i think, you need to find what works for you
Do you think the ginger shot has made a big difference?
Yes, it was picked up by both the Mail and the Sun: Sue has given the link to the post and the replies
Cheers chris.....ive taken what sue says on board and will be following the advice...the last few weeks have been the worst ive ever suffered with my rls so something needs to be done. Im with bupa ,so instead of my gp i may try and get referred privately to a specialist... although ,generally , the doctors ive seen dont seem too well informed on rls.....i dont think people understand just how distressing rls can be
I have cut all sugar and caffeine out of my diet. I don't eat anything after 7pm. I also take raw ginger, garlic, and honey every morning (as suggested in a previous discussion). All of these actions have made a huge positive impact on my Severe restless legs. I could not have kept going without the support and guidance of this wonderful group of people who really understand RLS.
UK doctors aren't trained in RLS, and rely on outdated guidance from NICE/NHS to inform themselves. RLS-UK has tried to engage with the Royal College of General Practioners but they are unwilling to meet or listen. Most RLS experts are in the US, and the 'bible' on RLS is the Mayo Algorithm:
mayoclinicproceedings.org/a...
This was an interesting read. I have a private physician in the US who has attended panel discussions on rls between neurologists, gastroenterologists, nutritionists, and naturopaths. Each treats patients with rls and had different approaches. There is some disagreement as to which comes first. Does it begin in the gut or in the brain? Personally, other than tramadol, I have had little relief from pharmaceutical treatments and I have tried them all. They either have worse side effects than the disease itself or simply fail over time or both. In my case, everyday for over 30 years, diet is critical and if I control my gut, I control my rls, at least to a manageable degree.
There are people who treat RLS and there are some real experts. As a matter of interest have you read the Mayo Algorithm? It's not absolutely perfect, as it's a consensus across a panel of experts, and it doesn't tackle diet, but it's the nearest we have to an RLS 'bible'
mayoclinicproceedings.org/a...
Yes, I read the whole thing prior to my response. It is interesting, however it does focus almost exclusively on pharmaceutical treatment, which I think leaves out some useful information and alternatives, but that's normal for medical papers.
I suffered from RLS for 40 years or so, but as you can see from my profile I've never taken meds for RLS, never had low ferritin or found iron helpful.These were my personal solutions:
Magnesium Citrate daily
Cutting out diet drinks and foods - the artificial sweeteners were triggers particularly aspartame
Reducing sugary foods and drinks
Reducing caffeine
Trying to take regular moderate exercise
Staying cool in bed (temperature wise!)
Sleeping as much as possible on my side or front rather than on my back
Avoiding statins
Try adding Mag Glycinate, it’s one of the most muscle relaxants of the Mags. Citrate will definitely soften your stools.
Citrate is fine for me, I've been using it for years, and despite having bowel issues since radiotherapy it still doesnt give me issues (although ezetimibe, prescribed instead of statins, does). It helps if you spread it out through the day rather than try to take it all at one time. It's also readily available OTC in the UK, whereas glycinate has to be ordered online. Some however can't tolerate citrate and need to source glycinate, which also has the reputed benefit of helping sleep.
I was on a strict anti-inflammatory diet for 8 months, which meant no sugar (not even honey or maple syrup), no alcohol, no refined carbohydrates, etc. It made ZERO difference to my RLS, which meant I had flares almost every night. It's fortunately controlled by medication, but I had hoped to get off it. No such luck. Everyone's different, and my RLS is apparently not diet-related.
Hi there, as you have said I've avoided all those items food that can be related. No help at all.The wonderful Dr Jose Thomas. has Px Methadone for me. I'm up to 10 mil x am & pm, and I've just had the second IV infusion so I'm praying it will have the impact to stop the RLS.
I still have the crawling 24 hrs but the awful cramping, nasty, having to walking or tapping has reduced. I can only have the Px filled every two weeks so I have to catch two buses to the only chemist allowed to do this in this area. But I'm so lucky to be able to sleep 3-4 hrs instead of 1-2 hrs.
I'm pleased for you to have found a medication that has helped you.
Good luck nocturne.
I'm glad the methadone is working, but am so sorry about the hassle of having the Px filled every two weeks and traveling across town for it. What they make us go through! I really appreciate your positive attitude amidst all this; you're an inspiration. Best wishes to you, and I hope that one day soon you'll be able to sleep 7- 8 hours, rather than 3-4.
I have a diet that avoids all refined sugar. I still get restless legs but who knows it might be much worse if I ate sugar.
The reason for cutting out sugar is because sugar is inflammatory and inflamed nerves are hypersensitive leading to rls. Other foods can also cause inflammation so if you're diet includes those you might not notice the reduction in inflammation from cutting out sugar. There are lists available on the internet of 'foods that cause inflammation' and first and foremost on every list is refined carbohydrate be it refined sugar or refined starch. Refined seed oils can also cause inflammation as can artificial preservatives. These are all found in processed food and by avoiding this completely I have elminated my rls without drugs. Remember that fruit juice and flour are processed foods.
Of of the most inflammatory food sources are seed oils/transfats. They are very unhealthy and contribute to many health problems. A good YouTube Dr to follow is Dr Kenny Berry, he has videos on just about every health subject, based on recent scientific studies. Plus, he’s not trying to sell you supplements!
In my case, sugar and some carbs as well as alcohol are all triggers. I eat a high protein, very low sugar diet. Though it isn't a cure, it helps a great deal. I also notice that some food additives are triggers but not sure which ones just which foods I can't eat. Usually packaged foods. I use emulsified oregano oil tablets and hot water with ground ginger 🫚 fresh or powdered to stop the reaction from sugar or additives. SIBO or small intestine bacterial overgrowth, is fairly common in people with rls and that is true in my case. Cutting sugar is certainly worth a try to see if you can get some relief naturally.
Here’s a link to help those who struggle with sugar addiction
I have it up for 6mos. It made no difference in the severity of my RLS. I gladly incorporated it back in to my diet.
Amitriptyline can make RLS worse.
Sugar definitely triggers my RLS. Over Christmas when I gave into sugary treats my sleep was so disrupted, even though I take .5 mg of Methadone. I know, this, but sometimes I still poison myself with sugar. Sigh.
I substitute all sugar with stevia and I am managing my RLS without medications most nights with exercise, hot baths, yoga stretches etc. I also take medicinal Cannabis when I need. Generally I have taken an anti-inflammatory diet with smoothies made from celery, fennel, carrot, celery, radish, coz lettuce etc. I am very fit and no aches or pains apart from RLS at night. Given I am 75 I think not eating sugar, processed foods is keeping things manageable in my life. It hasn't elevated anything but it certainly helps me to live a reasonably normal life and with the cannabis I can get good sleep.
Anti depressants make RLS worse, as well as sleep aides and pain killers, for me
There are two safe antidepressants for RLS in the US if you need one - wellbutrin and trazodone . What sleep aide did you take - my guess would be melatonin which does make RLS worse. If you still need one l would suggest lunesta. What pain killer did you take?
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