My symptoms are made worse with medication.....does anyone have any success
Restless legs : My symptoms are made... - Restless Legs Syn...
Restless legs
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Baz33
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You need to tell us more about what medications you are taking. For RLS a nd other medications which could be exacerbating your symptoms.
I have had a level of success not going on to medication. I get RLS in my legs back and shoulders at night. 4 things that help me the most -Resting my ankles on The Chi machine creates a wave motion up the legs and through the back which activates the vagus nerve and this results in a pleasurable feeling of relaxation and RLS goes away enough to get to sleep. I use medical cannabis dry herb vape 25% THC which enables deep sleep. I also eat a non-inflammatory diet- no sugar, coffee, lots of fresh veg and some high quality grass fed meats, ocean fish, eggs, magnesium, vitaminD, C, avoid seed oils. Other things that seem to help are walking barefoot on wet grass, hot baths. Good luck with trying some alternatives.
It may not have any connection but along with numerous other symptoms I have not had RLS since changing from taking Levothyroxine for hypothyroidism to Natural Desiccated Thyroid which contains T3 the active hormone. Over 8 years now without a recurrence of RLS.
Hello I notice you are in the uk - did you get this new medication through the nhs? I take 100 mg / 75 mg on alternative days. My rls and limb movement disorder has been off the scale over recent years despite trying possibly all of the medications out there. Is your GP on board with this change? And do you get it on prescription? Thanks
Hi , my gp.gave me pramiplexol which no longer works and ropinerol which never touched the sides ,my gp.suggested upping the dose and taking it with codeine ,which has done nothing, my feritin count went undetected in a recent blood test and I've been taking oral iron for a month now ,but yesterday was next level in terms of violent symptoms .This is a really helpful site .
Thankyou
You need to come off the pramipexole if that is what you are currently on or ropinirole if that is what you are on because you are augmenting. The last thing you need to do is increase the dose. Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations. To come off ropinirole, reduce by .25 mg every 2 weeks or so. To come off pramipexole reduce by half of a ,088 tablet. 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. But in the long run, you will be glad you came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole or pramipexole 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. 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 divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." 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). 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 atHttps://mayoclinicproceedings.org/a...
You say your ferritin count went undetected in a recent blood test. That's extremely unlikely. It sounds like you didn't have the right test. What was your TSAT (transferrin saturation? Ask if you were given a full iron panel test? A normal blood test won't give you your ferritin. If not ask your doctor for a full iron panel since you are suffering from augmentation, it is important that you do so. Stop taking any iron supplements 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. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, using a standing desk, listening to music, meditation and yoga.
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.
This is incredible,I'm completely blown away,I will show this to my gp tomorrow, thankyou so much .
Hi, I saw my gp today ,my ferritin levels are 32!!!! They refuse to give me an iron transfusion and I had to argue to come off the pramiplexol and go onto the gabapentin, it was quite shocking , she told me not to reduce the pramiplexol just to stop it ..... should I reduce it still, thankyou for your support
Absolutely reduce it unless you are a gluten for punishment. It will be hard enough reducing it as I suggested.
Since you can't get an iron infusion then take two tablets of 325 mg of ferrous sulfate or two tablets of 25 mg 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, 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.
This is so helpful, thankyou ,
FFS. Excuse my language but I am so sick of the constant ignorance, negligence and incompetence of UK doctors.This has to stop.
Please file a report via the Yellow Card Scheme. See pinned posts.
Then write a formal complaint to your GP, referring him/her to RLS UK website, the information on augmentation, which your GP should have picked up on when you failed Ropinirole, and the Mayo Clinic Algorithm.
Iron infusions should be first line treatment. They help 60% dramatically and can reduce the drug induced worsening caused by Pramipexole.
You can get iron infusions if you pay privately, but I got mine on the NHS by writing direct to St George's in Tooting.
Your ferritin is way too low.
As long as your TSAT is below 48, taking ferrous bisglycinate every other night now will be fine.
Follow SueJohnson schedule to reduce Pramipexole.
Who do I write too in tooting please ? And what's the yellow card scheme?.
Dr Elizabeth Rhodes, haematology department. However, they'll only treat patients within the catchment area.Yellow Card Scheme is on pinned posts on this site and is the UK reporting for adverse drug side effects.
Pramipexole and Ropinirole worsen RLS. Doctors are unaware of the EXTREMELY high rate because patients and GPs don't report augmentation.
So look at pinned post on this page, report it as a severe side effect and hopefully, doctors will stop prescribing.
I've been,I've been given a patch and booked in for an iron infusion ,thank god x
What patch????Please don't say Neupro /Rotigitone. Do NOT start it.
If so, your GP is even worse than I first thought and you need to send an official complaint.
The Neupro patch is another dopamine agonist.
Great about the iron infusion, but your RLS will remain severe and get much worse if you don't get off ALL dopamine agonists.
The patch will work initially, for about a month, then worsening will start again. The patch is much more difficult to reduce.
Go back to GP, ask them to read the basics of RLS, especially about augmentation on dopamine agonists,and ask for Pramipexole to continue so you can start reducing them now.
It's hard, but the ONLY solution is to get off these drugs.
Many of us have done it.
OK thankyou ...do you recommend I just reduce the pramiplexol and take medical cannabis until I see if the infusion works
Yes. Start reducing Pramipexole now by half a 0.088 pill every 2 weeks. The RLS becomes worse at each reduction. Take codeine or medical cannabis to reduce symptoms.Iron infusions can take up to 6 weeks to show results (if you are a positive responder).
Start pregabalin 75mg at night 4 weeks before your last dose of Pramipexole. Increase by 25mg a night up to 150mg. Pregabalin takes 3 weeks to be fully effective, but doesn't help until withdrawal symptoms settle (around 4 weeks after the last dose of Pramipexole).
Then hopefully the iron infusion will have happened and the pregabalin will cover your RLS completely.
You can keep us updated and everyone will advise further if the iron infusion and pregabalin 150mg do not fully cover all your RLS symptoms.
Oh god this is such a long process .I logged a complaint with my health care provider for the northwest and they have got straight back to me and are calling me this afternoon.
Thankyou so much for your help.
Did you see the post today by Paul about Pramipexole? His husband lost £00000 gambling and tried to kill himself because of this drug.They are very dangerous and should no longer be prescribed.
No I didn't, where was this ??? The pregabalin wasn't the drug I was offered. It was something else ,I wasn't offered the pregabalin as its from.the same fa.ily as gabapentin ,
Posted today on this forum, 2 hours ago. Just above your post today.You were offered the Patch and another drug. If it wasn't pregabalin, can you remember what it was?
Pregabalin and gabapentin are now first line meds. Are you allergic to gabapentin?
The other drugs used for RLS are low dose opioids ( tramadol, codeine, oxycodone, methadone, Buprenorphine) or benzo diazapenes.
It's great that they replied! Excellent.Refer them to RLS UK website and the Mayo Algorithm.
Copies attached.
NHS and NICE guidance are outdated, so don't let them fob you off by saying the GP was following NHS guidance.
mayoclinicproceedings.org/a...
rls-uk.org/augmentation-reb...
They refused my iron infusion and read from NICE guidance and put me back on oral iron without sleeping tablets ,I was there 7 hours in tears
I'm so sorry but not in the least bit surprised.Take ferrous bisglycinate at night, every other night. It raises serum ferritin levels quicker than once or twice daily.
Sleeping tablets don't help much as they don't stop the RLS at all so you wake and are then very groggy. It increases risk of serious falls.
You could get an iron infusion by seeing a sleep specialist or neurologist privately. If you let us know where you are, we can point you towards someone who may know more than the basics. As NHS and NICE guidance are out of date and don't have iron as first line treatment, and don't recommend iron infusions, the NHS doctors will try to fob us off.
It's scandalous.
Dr Jose Thomas at Gwent Sleep Clinic ( operates out of Cardiff privately) and Prof . Walker at Queen Sq will both arrange iron infusions for private patients.
Thankyou so much ..im.in lancaster but can get to either of these ...
in reply to Baz33
Hi Baz, you’re not taking any HRT are you? Or melatonin or an SSRI? These will make the symptoms of RLS worse than they have to be. I’m not big on iron infusions. Pretty much ineffective for most people unless you have IDA then it’s miraculous. I take 50mg of ferrous bisglycinate on an empty stomach about an hour before bed. My RLS melts away in one hour for one night. So must be repeated every night. Give it a shot. Here’s a few others for which this works, even as a stand alone as it does me. There are many more.
healthunlocked.com/rlsuk/po...
healthunlocked.com/rlsuk/po...
healthunlocked.com/rlsuk/po...
in reply to
in reply to Baz33
For a long time the iron not only got rid of my RLS but knocked me out and I could never figure out why. Then a member on here suggested it might be the Glycine in the ferrous bisglycinate. I’m glad you didn’t get the infusion - sometimes things happen for a reason. Besides, everyone should at least try the iron at night trick before going down the infusion route. If the iron at night works for you (or not) I can give you what I believe is the definitive explanation as to why it does…tomorrow.
in reply to Baz33
I’m taking a look back at your history. You were on oral iron for a month but seemingly did nothing because I’m assuming it was the wrong kind at the wrong time of day.
The RLS UK website lists medications that worsen RLS.
Dopamine agonists like Pramipexole, Ropinirole and the Neupro patch all worsen RLS for the overwhelming majority which is why they're no longer first line treatment.
Many of us have success with medical treatments.
I have zero RLS on 0.4mg Buprenorphine. Madlegs takes 25mg Oxycontin over 24 hours, SueJohnson takes gabapentin.
Let everyone know what meds you're currently taking and what meds didn't work for you.
Thankyou I'm going to research your meds and suggest them to my gp tomorrow.
As I said 11 days ago, the Neupro Patch worsens RLS. Do NOT take it.Your GP really, really, needs to read up about dopamine agonists and augmentation. Please, please file a written complaint.
GPs will continue to treat patients badly until we complain and make them leaen the basics of RLS.
Sadly, we have to read and educate ourselves about this disease.
Read RLS-UK website.
Read the Mayo Algorithm. Look at the articles about augmentation.
Your D1 dopamine receptors are over excited/stimulated by dopamine agonists and that causes the severe, all over body RLS, which will get worse and worse until you reduce Pramipexole slowly and go through withdrawal.
Hi, I appreciate this is already on here somewhere,please can you repeat the times of day I should take my ....magnesium and iron ,the gabapentin has crucified my thighs and given me cramp in my feet so I'm.going to try the magnesium.and iron ,last night I took 3 x nightol twice throughout the night and got some sleep .....thankyou ,this site is a godsend
It's probably the withdrawal from Pramipexole that is causing the pain in the thighs and the toe cramping. It's common. I used to fall out of bed in agony with the toe cramps when withdrawing from Ropinirole.Take magnesium 3 hours before gabapentin dose. Take gabapentin in the evening, in 600mg doses 2 hours apart. So 600mg at, say 6pm and 600mg at 8pm.
Take iron last thing at night before bed and don't drink tea/coffee within 2 hours of the iron.
Nytol is an absolute no no for RLS. It contains dyphenhydramine which worsens RLS.
You would be better asking your GP for zolpidem, but only use it short term, preferably no more than 3 times a week.
Anything that is normally used to knock people out, like Nytol, night nurse, benadryl, contain ingredients that trigger/worsen RLS.
RLSUK has a list of the meds that can worsen RLS. Scroll down under treatments to
MEDICATIONS TO AVOID
Nytol is in there.
Oh wow really ???? It's helped in the past 2 nights,it's the green 1 so valarien not the blue 1 .....he wouldn't give me ANYTHING nothi g other than codeine ...which doesn't touch the sides.I have been given some cannabis is a biscuit so I'm.going to try this to.ight
Sadly, nothing your GP gives you will really help withdrawal symptoms.
Mine gave me tramadol and it really didn't do much. Cannabis was better. Getting off Pramipexole or Ropinirole is more difficult than heroin or cocaine withdrawal according to experts.Arrange 2 to 3 weeks off work for when you stop the last dose of Pramipexole.
The RLS becomes extremely severe, all over, and causes violent leg jerking. You end up without any sleep or rest for the first 4 days. Then it starts to improve day by day..
Try to get a friend or family member to stay up with you for the first 4 nights as falls from exhaustion are common.
A deep tissue massage gun and vaping medical cannabis can really help at this stage. You'll think you can't make it, but you will. Keep telling yourself that it will settle. The temptation to take Pramipexole will be overwhelming. Don't!
Stay strong and get off Pramipexole.
Your RLS will settle once you're off it.
Many of us have been through it and now campaign to get these drugs banned and doctors educated.
It's RLS Awareness Day so.take a video of your legs playing up and post it on social media and to your friends and family.
Everyone thinks this is a mild irritation. We need to show them how serious it is.
That was really helpful ,thankyou x
in reply to Baz33
Baz, did your RLS take a turn for the worse before or after they prescribed the Prami? Based on some of your posts it sounds like you haven’t been on the dopamine agonists for all that long or that they were ever that effective? I’m not sure your RLS will improve greatly once you’re off the Prami if that is the case. Do you have any other illnesses?
Baz33 in reply to
Hi ,I was on pramiplexol I can't remember maybe 2 months, then augmented but didn't know it was this ,was put on reprin...didn't sleep.for 4 days was in agony ...went back on pramiplexol augmentation again was told to take 3 per night and 2 codeine, symptoms 1000 x worse ,the night I found this forum I hadn't taken any because I was in agony and my whole body just went up , that's when I went to the gp and had to beg and I mean beg for gabapentin.....but no information about weenie g off,or how to take this or iron,magnesium...nothing g
Baz,Were you officially diagnosed with RLS recently, or have you had it for years.
Have you read RLS-UK diagnostic criteria?
What meds were you taking for RLS before Pramipexole?
If, as SalemLake has pointed out, you only started Pramipexole 2 months ago and you had NOT been on Ropinirole before, the Pramipexole should instantly have stopped ALL the RLS.
Did it?
It would be helpful if you wrote a timeline.
eg
Jan 23 -No meds
June 23 -started Pramipexole ( give dose)
August 23- started Ropinirole( give dose)
When did you start gabapentin? At what dose?
List ALL meds you have taken in the last 6 months, and we can then try to work out exactly what is happening and why you are experiencing pain and inability to sleep.
You may have peripheral neuropathy or fybromyalgia, rather than RLS.
I slept ..no.symptons last night following your advice ....just woke up now.
2 x gabapentin 5pm
Another 2 7pm
4 x iron and 2 x nytol 9 am.
Was asleep by 9.30
No symptoms !!!!! Amazing .
I'm.a personal trainer and teach fitness classes so work.with fybromyalgia and don't present with those symptoms.
No one giagnosed rls ,just growing pains .
Timeline...
March pramiplexol
May repri x 4days then off .
June pramiplexol..blood test showed ferritin 12 .
August ...Still pramiplexol started iron .
September gabapentin but wasn't told how to use it in conjunction with coming off pramiplexol or taking iron.
in reply to Joolsg
Jools, I don’t think the green Nytol has any Benedryl in it.
Baz33 in reply to
Hi, it doesn't, it has ethanol....and valerian
Joolsg in reply to
I've just looked up Green Nytol, and you're right, it doesn't contain dyphenhyramine.I didn't know there were 2 versions.
Apologies to Baz.
in reply to Joolsg
Let’s hope she’s fast asleep. Deep sleep.
Baz33 in reply to
I was !!!!!! Just woke up ...I have clients at 6am.otherwise would have stayed in.bed.I followed your instructions.......amazing!!!!
You guys are a godsend,thankyou !
in reply to Baz33
Clients at 6am??? May I ask what u do for a living??? Of course you slept well. Sneaking our brains some highly bioavailable iron at night is one of the best things us RLSers can do. It should/will never fail you. No, please don’t take any iron during the day. The iron at night thing works better if you take all the iron every 24 hours at bedtime. I’m thrilled for you. Welcome to the club.
Baz33 in reply to
I'm a personal.trainer ...can't express the absolute relief at having a pathway.....you've been incredible. All.of you ,thankyou so much x
in reply to Baz33
You have clients and I should start winding down - I’m in the U.S. I will give u a more complete description of why it works so well… in my morning💥
in reply to Baz33
Well let me say this again. I am sooo very glad you tried the iron at night thing before the infusion. Once a person has an infusion the iron at night thing is much less likely to work because of the boatloads of hepcidin that your body releases after an infusion. For weeks, maybe months, after that infusion, hepcidin blocks the absorption of iron from the gut. That’s why I wish anyone on here who advises newbies to go for an infusion preface it with “but you MUST first try 50mg of ferrous bisglycinate - at night and on an empty stomach, blah blah blah.” So simple, yet after a decade on this site I am still the only one who explains this nifty little trick to newbies. 😕. Your turn 😃
in reply to Baz33
I like your adjective…”amazing..” That’s exactly how I felt over a decade ago when I tried it after reading on another RLS site to “just take some iron at night, there’s just something about that free floating iron that seems to help .” You see, I didn’t discover this myself, I borrowed it from someone else who probably got it yet from another person. Look at the title of the below post from 7 years ago. Time flies when you’re paying it forward 🫣.
healthunlocked.com/rlsuk/po...
Hmmm, wish GillRLS would make an appearance now and again.
Welcome to the forum. You will find lots of help, support and understanding here. But we need to know more before we can help you. Also it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and any other health conditions you have
I suspect you are taking a dopamine agonist and suffering from augmentation but as others have said we need to know what medication you are taking.
Oh sorry,it was the middle of the night and I was sitting in the bath.Female ,UK,aged 53 but started when I was 7..
in reply to Baz33
Baz, I don’t think anyone on here, including myself, really understands your RLS history, including what medications and for how long you have been taking them, or even how your RLS has played out over the decades. We may have needlessly scared you regarding augmentation and convinced you that iron (oral or infusion) is the answer or opiates. Before you heed any of our advice I would provide more specifics.
Good luck in the future my friend!
Baz33 in reply to
Aged 7 growing pains.Into 30s I.thought it was lactic acid ,I used to.run alot .
Into 40s it was light a flick.switching 8pm.boom I'd have to go.to.bed take 2 paracetamol spent most of the night kicking .
Went to gp 2019 covid stopped my blood tests, they wouldn't give me a telephone consultation...so had to wait until out of covid .
Granny had parkinsons but I'm aware that's not hereditary....I was eventually seen ,bloods taken ,results told as fine .they weren't they were ferritin 12 !!!!!
Had been on pramiplexol for 2 months ,neurology ordered bloods,gp looked at old test and said ,oh ye these at 12 too low,ordered iron tablets ,I requested an infusion, they literally laughed ,felt better after 4 weeks on oral iron then dived ,obviously prami, gp swapped to repri.,I was on holiday didn't sleep for 4 days ,was put back on pramiplexol told to take 3 pramiplexol 2 codeine, awful impact,took myself off. Went to gp. Neurology ordered an infusion, got to hospital yesterday they refused ......6 months in total
Just to clarify, until 2 months ago, all you had been taking were 2 paracetamol?It does sound like RLS and PLMD.
But Pramipexole should have worked, at least at first.
Did it stop the RLS/PLMD at first or did it never help?
If it worked at first, you have suffered augmentation extremely quickly.
in reply to Baz33
Ok, the worsening has been more gradual than I thought. 40s it sounds like as is the case for many of us. Then the next decade of life comes and worse still. Add really low iron stores and a couple months of Prami and here we are. Though once again I think RLS has more to do with that serum iron drop at night than ferritin or anything else. No researcher/has ever found a correlation between RLS and Ferritin. Because there isn’t one unless we’re talking about anemia which is a trigger no different than melatonin
Baz33 in reply to
There is a doctor online talking about ferritin levels needing to be 100 in People with rls ......I haven't taken the fumarate prescribed just the bic you suggested 4 x nightly ....should I take the other iron during the day ?
in reply to Baz33
I don’t agree with him. And that number is a moving target. Some will say 200, others 300 and still others feel that 450 to 700 is best for us with RLS because then there’s likely to be more iron spilled over into the brain. You see, there’s a part of our brains called the substania nigra that is the control center for dopamine transport. We with RLS have waaaay less iron stored there than the non-RLS world. They’ve seen this on autopsy and imaging. And of course we have smaller and fewer dopamine receptors in this brain region as well, as compared to non-RLSers. But for most of the day we’re fine, right? That’s because during the day there’s plenty of that “free floating” serum iron (not ferritin) that our brains can suck up. Iron is the grease and glue that keeps people’s dopamine transport system chugging along. Mother Nature has seen fit to cause that serum iron to drop precipitously at night. The non-RLS world isn’t bothered by this drop because they have plenty of stored brain iron and of course healthy dopamine receptors. We, however, really feel that drop don’t we - especially when we’re older and our dopamine receptors are even more lousy. A lot of researchers seem to think that our brains have trouble calling up iron from the blood stream - that there’s problems at our blood brain barrier and that’s why we lack stores. I couldn’t disagree more with this theory. If that were true, we would have RLS all day long. But we don’t, just mainly at night. AND, you and I are living proof that our brains suck up that iron/ferrous bisglycinate like no tomorrow. So at least you and I don’t have problems with our blood brain barrier. 😅. We with RLS must lack an iron storage protein in our brains. ANYWAYS, the point I want to emphasize is how important it is for you and I to always take a highly bioavailable form of iron, which ferrous bisglycinate is. Mostly, the only substances that can cross the blood brain barrier are the ones broken down to their smallest component parts, which is amino acids. Ferrous bisglycinate comes broken down into amino acids for us. Ferrous sulfate is NOT. We have to hope and pray and wait for our guts to break down the ferrous sulfate into amino acids. My guts don’t do this very well. I tried ferrous sulfate at night one time, a long time ago and my nifty little trick didn’t work. I mean zippity do dah. And I totally expected it to work. I had no idea about “bioavailability” back then. I only bought “Gentle Iron” (aka ferrous bisglycinate) in the first place because I have a sensitive gut. Thank God I did because had I bought ferrous sulfate in the first place it wouldn’t have worked, I would have immediately given up and then gone on to who knows what? DAs? Then you and GillRLS, Sher78, RKM7, Pennygates and a few others might have met with a less than desirable treatment plan. I think that Pennygates no longer gets complete relief from the iron. People who have been on DAs for a long time and as they are drawing down on them do great with the iron at night thing. Oh, but when they’re down to that last little bit of the DA, and then completely off, it seems that the iron is like whistling in the wind. They need something in addition to the iron. Once their dopamine receptors have crawled back to baseline (6 months to a year) then they once again can see what a huge difference the iron makes. I think this is the case with a member on here by the name of Widebody.
Baz33 in reply to
Wow .....this is invaluable
in reply to Baz33
I know I always like understanding why and how something helpful works. 🌈
Baz33 in reply to
Do you take magnesium aswell for rls ?
in reply to Baz33
I used to take magnesium in hopes it would help my ultra sensitive gut. I saw no appreciable affect on RLS. But here is everything you ever wanted to know about magnesium but were afraid to ask. My two cents are in the below post as well:
RLSLearner in reply to
Hi SL,
Still trying to get my head around this. From the IRLSSG -
Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis-Ekbom disease in adults and children: an IRLSSG task force report
Richard P. Allen a, *, Daniel L. Picchietti b, Michael Auerbach c, Yong Won Chod, James R. Connor e, Christopher J. Earley a, Diego Garcia-Borreguero f, Suresh Kotagal g, Mauro Manconi h, William Ondo i, Jan Ulfberg j, John W. Winkelman k, On behalf of the International Restless Legs Syndrome Study Group (IRLSSG)
This line - CSF ferritin was found to be lower in RLS than controls, and also positively correlated with serum ferritin [37]. Earley CJ, Connor JR, Beard JL, et al. Abnormalities in CSF concentrations of ferritin and transferrin in restless legs syndrome. Neurology 2000;54:
I guess they are using CSF ferritin as a marker for Brain iron Deficiency (BID). Higher serum ferritin and higher transferrin saturation is used to be a marker for increased iron availability to cross the blood brain barrier. There seems to be a genetic weakness in transport of iron into the brain behind RLS. The idea behind pushing up the ferritin is for more iron to 'flow' into the brain. Which is why I am following this up. Will taking bisglycinate increase CSF iron in an hour or 2?
Baz, this is a common problem for us with RLS. Fortunately not all meds do this
Don’t give up try another med.
Gapapentin and Lyrica are two that don’t and there are others as well but
My gp regularly increased dosage of Mirapexin and Pramiprexole over the course of treatment from 2004 to 2021. Then when I Augmented in 2021 told me to stop taking the medication immediately . Both actions potentially harmful. I suffered night and day with RLS and experienced DAWs too. This group has been my saviour. Especially Joolsg. I tried Gabapentin and various other meds with no result. My condition is Refractory. I am now taking Buprenorphine and life is more manageable. My ferritin is 59. I am finally getting an iron transfusion next week. I'm 75, living in UK and have had this condition since childhood.
Did your gp OK the buprenorphine ? How long was it before they agreed to an iron Infusion ?.
My gp was reluctant to prescribe Buprenorphine sub lingual tablets. He had prescribed the Buprenorphine patches at a massive dose however.I found my own Neurologist eventually, Professor Walker in London . He instructed my gp to prescribe Buprenorphine orally about one year ago.
I've waited 2 years for the iron infusion.
Omg 2 years ...I'll have to pay private as this is just torture x
Iron infusions dramatically improve 60% cases, but 20% don't respond. Dopamine receptors are involved in brain iron absorption and the theories at the moment are that dopamine agonists cause permanent damage to our dopamine receptors and that could be why iron infusions don't help.Many of us don't respond to pregabalin and gabapentin, and again, the top US experts believe it's because our dopamine receptors have been damaged by years on Ropinirole and Pramipexole.
I only had pramiplexol for 3 months so I'm hopeful
in reply to Baz33
Yeah, you might have a touch of augmentation, but like I said before, it sounds like your RLS took a turn for the worse recently. Up until that point we’re you even taking anything for the RLS you had since age 7?
Baz33 in reply to
2 paracetamol.....I was told it was growing pains .....
in reply to Baz33
Is that all you’ve taken for 45 years to treat your RLS ? We were all told it was growing pains 🙄. My RLS was mild and intermittent until I reached my mid 40s, then worse again with menopause and also a one year nightmare when I was taking melatonin around age 40. Things like Suboxone and Buprenorphine do seem to be the magic bullet for “severe to very severe” RLS. However, for people who didn’t down regulate their receptors after years of DA use and who in general don’t have severe RLS, there are other less serious treatments like iron and Gabapentin. The iron at night trick should work that very first night so if it didn’t then you might want to switch to every other night as Jools suggested. The increase in absorption of iron between a once every 24 hour regimen versus once every 48 hours is nominal, but still ever so slightly more. So if that night time iron does relieve your RLS, stick with it. And stick with the green Nytol.
Baz33 in reply to
Yes that's all , no one was listening and when.they did it was pointless. I'm going to take the 4 iron now as suggested and 2 nytol ......how do you all have this information? Are you medics?.
in reply to Baz33
No medics, mostly paying it forward. Blogs like these saved our sanity so we’re returning the favor. Are you getting ready for bed? If so, then yes, please try the iron and the Nytol since that has been helping you. I’m a one trick pony - the iron at night thing. So if it doesn’t help (but I’m convinced it will 😅) then Sue or Jools or Madlegs or Eryl are all good advisors. Another thing, try not to eat after 7pm until morning. A lot of us find this helps.
Baz33 in reply to
OK..I'll post in the morning thankyou
4 days I didn't sleep so stopped it
Ok, well your withdrawal from Pramipexole may be smooth as you've only been on Dopamine Agonists for 3 months. And the iron infusion should really help as probably no permanent damage has been caused.That's good news.
Now, just to get you off the Pramipexole and to increase the gabapentin once you're off Pramipexole completely.
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