Hope this helps someomlne even just one person x Long time since I posted on here. Years I think. I was getting shocking a sleep and my RLS was so bad on an eve. Particularly as I tired and got drowsy. My consult has been really good but I think despite my raising it at every single doctors session and consultant meeting no one has listened to my protestations about my iron levels. They're normal they would say even if we adjust for RLS levels. I would point out that my mum was told the same thing but when the finally gave her iron treatment she improved instantly. So anyway I've been talking to my doctor who refused to put me in iron treatment but suggested iron supplements of around 28mg instead. Found a really good one and it's made a massive difference along with drinking 2l of water per day and walking 3 miles every 2 nights. I'm on 3mg ropinirole, 1200mg gabapentin, very low dose clonazepan which help me sleep and I probably can't do without now. My findings though are this: - too much food before bed instigates a nasty indigestion that for me seems to totally negate all of my tablets.
- water I drink at least 2l of water per day because it seems to help.
- exercise too much triggers my rls but every 2 days seems to help and I feel better for it.
- iron tablets made a big difference to my breakthrough early eve symptoms.
I'm not preaching it's hard!! the only thing that drive me to exercise and water was a crippling pulsing pain behind my knee. I decided it was time to kill or cure!
Unfortunately I don't think I will ever be able to reduce my tablet use even though it leaves me tired all the time. Because the fear is that maybe all of these things are required to control it.
For me it's evolved, got worse and I'm constantly adjusting my routine to cut out triggers and include better healthier choices. Which isn't a bad thing
I hope this does help someone. If at the very least it does offer hope. At one point I was very depressed couldn't even think about looking for a lady partner as itv wasn't fair to lump this on them. Kicking like crazy white watching a film upside down against the wall is not sexy boyfriend material! Still cautious about that tbh.
But I have improved for some time now.
Good luck everyone. Sorry for the ramble lo
Dave
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Oh boy. Sounds like augmentation. You will not like it, but in the end most likely you will be better if you reduce your ropinirol. Slowly, very slowly. And at some point you may need a strong painkiller (tramadol, maybe oxycontin) to help you reduce further. Increasing your iron (focus on ferritin) will help. And check for aggravating triggers.
Have a thorough look at rls-uk.org or rls.org websites. And on this forum find one of the almost daily replies by Sue Johnson in which she summarises the Mayo Clinic treatment algorithm supplemented with knowledge acquired through the many users on this forum.
Iron is not a factor in my RLS. Not more iron, and not less iron. I had my doctor check my levels, based on the experiences of people here, but iron was not the solution, nor the cause. I'm glad it worked for you though! I did show this site to my doc, and he was intrigued by some of the suggestions. I'm just glad he was open to learning about this condition. We ended up agreeing on low dose opioids. In 8 years, I've never had to increase the dose. I can take it 4 to 6 x a day (24 hour period) to relieve the symptoms. I don't exaggerate when I say it's been a life saver for me. I don't even care that my records indicate that I have a "mild dependence" on the meds. That designation is completely different that being labeled as "addicted", and at 72, I really don't give a FF. I hope for everyone that they find a doctor who isn't an AH.
The gabapentin won't help your RLS until you are off ropinirole for several weeks and your symptoms have settled. You augmented on pramipexole before and then switched to 3 mg ropinirole and as you were told in the past 4 mg is the maximum dose. You would be wise to get off it as you will augment again and the longer you are on it the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the iron and gabapentin won't work. Here is my usual advice:
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole, Neupro and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin Normally you would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks you may find that it controls your symptoms. If not increase it by 100 mg every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. Since 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.
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
Have you had your ferritin checked not just your iron levels? If so what was it ? ASK don't just accept it is normal That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
If you want to take iron in the meanwhile: If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, 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. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way, 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 (or magnesium rich foods), calcium (or calcium rich foods) 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 turmeric as it can interfere with the absorption of iron. 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.
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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Thank you for your advice I will have a good read. Appreciate it. Although it doesn't sound good. Way worse than I thought actually. As I said below I'm in the UK and my consultant thinks we should leave it .
Edit: ferritin and tsat doctors say are within normal limits. Not "low". But I firmly believe I'm different for some reason wether it be I need more to function or just don't absorb the same. Doctor having none of it though.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in
Sorry uk is the country. And yes I did augment on pramiprexole. At this point I can't every imagine a stable working life without gabapentin and ropinirole. my consultant is off the opinion if it's working leave it be.
Look for posts and replies by Joolsg. She is also in the UK and a board member of rls-uk, the patient organisation. She has been on ropinirole and came off. And her RLS is as if almost non-existent now. There is good info on rls-uk.org or how to reduce ropinirole. And on what the iron values should be for rls patients (see also Sue Johnson’s replies). Here on HU there is also shared knowledge on good m, meaning knowledgeable doctors, if you let us k ow where you are based.
If you decide and manage to come off ropinirole, do NOT start another dopamine agonist. Don’t go back to pramipexole and most of all don’t accept any offer of rotigotine / Neupro patch. Many doctor still believe it has a low chance of augmentation. This is not true, chances are more or less the same. And from our collective experience we know that if you have experienced augmentation before, it will return. Sooner than later.
Your choice of course. But it eventually it won't and then the iron won't work and your only choice will become opioids which can be hard to get a doctor to prescribe.
Unfortunately, i'm a senior programmer and it's critical my thought processes remain clear and I get sleep. Or be unemployed so unfortunately it's not really a choice but once I can be sure things are remaining stable I'll have another word with my consultant. BTW my ferritin was 74 lasttime it was done so 44 above 30 which I believe is minimum. I've added acc image of my serum iron tests. Not sure how to read that lot. But thank you for your very knowledge and helpful input. It's appreciated
Nice one , it's similar to mine , 150km a wk in my bike , sifrol 2.5mg and heaps of iron tabs , works for me sleep like baby I think the exercise has a lot to do with it at least you have found something that works
Om, did you get relief from the first iron tab. There are MANY of us at this point that get immediate relief from iron (preferrably ferrous bisglycinate) about 2 hours before bed on an empty stomach. Should relieve symptoms in about 1.5 hours for one night. So must be repeated every night. RLS has absolutely nothing to do with ferritin unless you’re anemic. But RLS has everything to do with serum iron that plummets at night and we get RLS. Iron is the grease and glue that keeps our lousy dopamine receptors chugging along. See below:
Just a change is not enough. It has to completely eliminate your RLS for that night. And if you don't take it the next night it doesn't. So if that is the case take it every night. Otherwise take it every other night to raise your ferritin.
Looks like your experience is mixed. It sounds like the iron could help you. Often RLS sufferers benefit from higher levels of iron, well above what Doctors regard as normal, so as Sue says in the 100 to 200 range and possibly higher e.g. 300. I take supplements (iron biglycinate) and raised my ferritin from 70
to 140 and while I still wake every night I feel things are less restless.
However you are still on a reasonably high dose of two other strong drugs Ropinirole and Gabapentin which will probably have much more effect and make it difficult to work out what's going on. In particular I note you say your RLS is evolving and getting worse. I'd suggest you look into augmentation which is where dopamine agonists eventually stop working and in the long run make the RLS worse. RLS itself generally progresses over time so it's not always easy to be clear on what's going on but you are in the position where the Ropinirole doesn't work as well and your doctors are telling you to increase it that's a red flag and you should look into augmentation. It's possible that iron and gabapentin might be able to control your RLS on their own but it's difficult to know without coming off the Ropinirole which won't be easy and you shoudl do very slowly if you decide to try it. Please have a look at these and the one page guides on the useful resources page.
I agree with Sue that the Gabapentin mat not be helping alongside the Ropinirole so you may be taking two powerful drugs unnecessarily.
The other things you mention such as not eating late helping, and intense exercise triggering RLS are quite common and it's always good to get feedback from people on what helps.
However in your situation the elephant in the room is the dopamine agonists and possible augmentation. The difficulty here is that the longer you are on dopamine agonists the greater the risk of damaging your dopamine receptors which means other therapies may not work so well.
No. Lots of them aren't. The term given to it is called augmentation, meaning that over time the RLS drugs like requip,mirapex,etc will make the RLS much worse. Avoid them at all cost.
Ropinrol is definitely causing augmentation. You need to have a dr start weaning you off of it. I was miserable once I augmented from it. I was only on 2mg and it still took me 5 weeks to get off of it. Then my RLS returned to being only in evenings and nights. Also bring your iron up. My dr wouldn’t order an iv rather but I got it over 100 with a supplement. Good luck.
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even just one person x Long time since I posted on here. Years I think. I was getting shocking a sleep and my RLS was so bad on an eve. Particularly as I tired and got drowsy. My consult has been really good but I think despite my raising it at every single doctors session and consultant meeting no one has listened to my protestations about my iron levels. They're normal they would say even if we adjust for RLS levels. I would point out that my mum was told the same thing but when the finally gave her iron treatment she improved instantly. So anyway I've been talking to my doctor who refused to put me in iron treatment but suggested iron supplements of around 28mg instead. Found a really good one and it's made a massive difference along with drinking 2l of water per day and walking 3 miles every 2 nights. I'm on 3mg ropinirole, 1200mg gabapentin, very low dose clonazepan which help me sleep and I probably can't do without now. My findings though are this: - too much food before bed instigates a nasty indigestion that for me seems to totally negate all of my tablets. 
my consultant is off the opinion if it's working leave it be. 
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