First and foremost, I really have to thank all on here that contribute so much time and knowledge to those of us in need. It is very much appreciated.
My basic history:
I remember back in college around 1998, my calves would go crazy at night like spiders crawling under my skin. It would come and go maybe 1-3x week. Poor college kid, no insurance…I did not see MD, I just tolerated it. Really kinda chalked it up to drinking too much beer and being dehydrated.
Through the years it has gotten worse from 1-3x month to 1-3x a week in which I still tolerated it well and didn’t bicker. Usually, it has about a one hour long episode of me walking around barefoot and doing calf raises. That is until Covid hit and when I got Covid, it became insane. Went from 1-3x a week to every night and episodes were hours in length. I would go to sleep in bed, 20mins later up to living room chair then to couch then to spare bed, back to recliner for hours- with zero sleep all night long. It became to where it changed my functional lifestyle and I had to seek medical attention.
I went to a sleep clinic and the MD started me on Gabapentin 100mg, worked some but then did not, then to Pregabalin for two weeks- kinda worked but then did not work, then to Doxepin and small dose of Ropinirole. Doxepin made me into a morning zombie but Ropinirole worked for about 3-4months. So kept Ropinirole and added Lunesta.
RLS started back up recently and I found this site and learned about augmentation and stopped Ropinirole all together. The RLS abated somewhat and I was sleeping decently with just the Lunesta. Well now, this is the 4th night in a row I’ve gotten up in middle of night and walked around for an hour doing calf raises- then back to bed at 2am only to be woken up again at 4am.
I just can’t figure this shat out…I am in the medical field (physical therapist) and understand a lot of neuro/physical. I make mental notes on what I eat, times I eat, zero alcohol intake, I run 3x week in good health and there is zero pattern to this at all. The only thing that I know for sure is drinking beer is a sure fire trigger other than that I don’t have a clue- it will disappear for 1-2 days and then come back for 10days. Sometimes for 1hr, sometimes all night long.
52 y/o white male, in good health exercise daily and eat a healthy diet. Zero knowledge of family history. The only health condition I have is high cholesterol and do take following meds:
Zeta- .5mg
Crestor- .5mg
Baby aspirin-
Fish oil omega3- 1000mg
Vit D3
CoQ 10- 100mg
I know that cholesterol meds can exacerbate RLS but .5mg is a very low dose. Had an Iron Ferritin test last year of 103.
I am due for a yearly physical with MD on Jan2 and thinking of asking for another iron test.
I know y’all are busy with more serious cases but was wondering if you could educate me with your thoughts and opinions.
Thank you.
Written by
Ddski5
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I took ezetimibe (Zetia, Ezetrol) when I couldn't tolerate a statin: it didn't give me RLS problems - although it does for some - but I've had to give it up because it gave me bowel problems following post radiotherapy proctitis.
I didn't find rosuvastatin (Crestor) as bad as atorvastatin (Lipitor) for triggering RLS, but even a low dose of the former did still cause me problems.
Ferritin of 103 is fairly marginal for helping RLS: you would be better aiming towards 200. And was your iron test done in the morning after fasting overnight and after refraining from iron supplements for 48 hours? If not, your ferritin reading could have been unrealistic.
100 mg of gabapentin is below the starting dose of 300 mg and you probably didn't take enough of pregabalin either. And they aren't fully effective for 3 weeks. So no surprise - they didn't work. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Since you stopped ropinirole cold turkey it is no wonder you are suffering now. You need to wean off it slowly. I would suggest you go back on your previous dose and wait until your symptoms settle. Then to come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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.
Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) 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. 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. (You don't need to split the doses with pregabalin) 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, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).
Since your ferritin is so close to 103, I would try to raise it higher as some people need 200 to 300. 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 other 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. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months. And in addition to fasting overnight and not taking any iron even in a multivitamin 48 hours before, don't eat a heavy meat meal the night before and have your test in the morning before 9 am if possible.
On your cholesterol: statins like crestor can definitely make one's RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but as Chris Columbus said it didn't trigger his RLS and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol as you found out, 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.
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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist at
Yes, reading/researching through this site tells me that the MD had me cycle through Gabapentin and Pregabalin too fast. I wonder if staying consistent with one of those would have been the key. He seemed more as if to throw meds at it rather to understand what was going on.
Pregabalin and gabapentin take 3 weeks at full dose to be effective. 100mg gabapentin is the starting dose. Average dose is 1200-1500mg at night in spilt 600mg doses 2 hours apart. Average Pregabalin dose is 150-200mg at night.I suggest you go back and start again on either gabapentin or pregabalin and follow the Mayo Clinic Algorithm.
Hi Joolsg, you are in the UK and youve served me well so far. Do you know if a gp in the UK can do a prescription for Pregabalin or Gabapentin without a neurologists input or has a neurologist got to initiate the first prescription?Thanks
Absolutely. My GP prescribed pregabalin. My GP has also prescribed Buprenorphine, which has been brilliant for me.
Different health areas have different rules though. Buprenorphine is 'red listed' in many UK areas and only a specialist can prescribe it.
However, pregabalin is mostly prescribed by GPs in the UK. It is prescribed 'off licence' but there are hundreds of members on here who have been given pregabalin by their GP.
It's best to start slowly. 50mg first day, then add 25mg every other day until you reach 100mg. Stay on that for 3 weeks and monitor results. If it helps great. If not, increase by 25mg every other day to 150mg and monitor.
The average dose for RLS/PLMD is 150mg but the max dose is 450mg.
If it works, and you start to sleep well, you should see an improvement in your blood pressure and you could then review the many meds you're taking that worsen PLMD.
I doubt that pregabalin is red listed where you are.
This may also help to explain why your GP may be unwilling to prescribe pregabalin. It became a controlled drug in 2019 because of drug addicts abusing it.
However, it can be prescribed for a month at a time.
Besides a diet that may trigger it, is there any logical rationale on how/why it can be sporadic? Good to go for three days and then minimal one day, full blown the next and then minimal? I mean do you think the causative factor is a decrease of dopamine when one retires for the evening and your system calms down?
A thought you may be interested in is whether RLS is a Mind Body syndrome. Website of Dr Schubiner unlearnyourpain.com gives an explanation of this phenomenon. I have used it with remarkable and really fast success for my debilitating and long standing long covid and Dr Schubiner maintains that rls is a Mind Body syndrome. I am now trying the strategies for my rls- early days.
I’d be interested to know what you think. Some of the characteristics that suggest to me rls may be a Mind Body condition are that it is sporadic for many people myself included, is triggered by a huge variety of factors for different people eg caffeine and hot cold can help/ make it worse for different people, and different meds help different people.
RLS follows the dopamine cycle. Dopamine levels start to rise/increase around 6 am in the morning and then decrease early evening and night. That's why most RLS starts early evening and during the night.Some lucky people find their 'triggers' early on and control RLS purely by diet. Some follow paleo, others Low Fodmaps or low oxalate.
Many find that they can control RLS by taking magnesium tablets at night, or rubbing magnesium oil on their legs.
Some take a ferrous bisglycinate pill last thing at night.
For others, there are no food or drink triggers and meds are needed to control the disease.
Many medications trigger or worsen RLS, including anti depressants and sedating anti histamines.
The more you research and learn, the better the outlook.
RLS isn't taught at med school or during medical training in the UK and I believe that is the same in the USA.
Start with the Mayo Clinic Algorithm and Dr Berkowski website at relacs.
Yes, thanks for that correction. I had initially put serotonin but meant dopamine. So since it’s a dopamine issue, I tend to wonder if this has any correlation to onset of Parkinson’s?
I plan on getting some ferrous bisglycinate and starting that.
Https://rls-uk.org/faqs says "Most people with Restless Legs Syndrome have the "idiopathic" form - meaning there's no known cause. Consequently, there is currently no known risk of RLS progressing to more serious conditions, such as Parkinson's disease."
No. Parkinson's patients have low dopamine levels in the brain, whereas RLS patients have enough dopamine, but seem to have a problem with dopamine receptors. We can't use the dopamine properly.
Around 30% of Parkinson's & MS patients also have RLS.
The overwhelming majority of RLS patients do not have Parkinson's and will not develop it.
There is no definitive answer to why some people have good & bad days. Some have food and drink triggers, some don't. But RLS follows the dopamine cycle. Dopamine is highest in the early morning, around 6 am and slowly decreases over the day. When it is lowest in the evening, that's when RLS affects people the most.
I’d suggest keeping a diet/activity log to see if that helps identify triggers. My main one was salty meals. Interestingly it was a trigger when I was on DA (pramipexole), but doesn’t seem to be now that I’m on buprenorphine. Cannabis helped me get through the DA withdrawal. Starting buprenorphine has stopped my symptoms completely.
You might also try taking an iron supplement on empty stomach before bed to see if that helps.
So I know for sure fried foods for dinner, ice cream for desert around 7:30pm, or any alcohol (beer/wine) will fire it right up…I experimented with THC gummy bears, thinking it would have a calming effect but that only flared it up worse.
Gonna try the ferrous bisglycinate iron supplement.
Intense exercise such as running or cycling tends to make my RLS worse and is generally regarded as an aggravating factor. I do it anyway because I like the other benefits but it will normally makes things worse for 2-3 days. Conversely if I rest from it for a week I normally find I sleep better. Moderate exercise such as walking for up to an hour is normally beneficial. No exercise is almost as bad as too much.
You are sooo right and that make no sense to me…I play soccer and run 5k’s/10k’s. My legs go crazy after any kind of intense training. Not to sound hard core but I am not conditioned to only minimally exercise, if I am going at it then it’s usually all out.
The eating at night is very interesting…something I have not considered but will definitely take into account. My problem is that I work all day, come home, train and then need to refuel after working out/running. No, not on any melatonin or anabolic steroids/testosterone or tryptophan. Just good ole exercise followed with healthy foods and on occasion ice cream. I do, however, like to drink beer during the weekend when out in the yard weedeating and cutting grass. That’s something I’m just gonna have to stop I guess.
I am going to try the ferrous bisglycinate, thanks for that suggestion.
You know, it is not as bad if I sleep on my stomach and I most definitely have to have my legs uncovered! It is considerably much much better during the winter (cold weather) but here in South Louisiana…our Winter is very short lived.
I have not gotten the iron yet. I can tell you that no food after 7pm has made a noticeable difference. I really miss my 8:30pm bowl of ice cream, dammit! But shat, if that what it takes….RLS has woke me up at 2am a couple of times this week and I did balance activities in the living room. I find the one legged balance activities dissipate the creepy crawlies faster than squats or calf raises.
Went to the MD for my annual checkup and he is ordering a current iron test. What exactly should be tested with this- just Ferritin?
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