Hi All. I’ve been suffering with RLS for 19 years since my first pregnancy. It’s got worse and worse over the years and the last 6 months have been awful. Not just the intense jittery feeling in my legs but really bad pains. I’m hardly sleeping. I do all home remedies etc. Workout, don’t drink, don’t smoke. Healthy diet etc etc. I have been to drs before many years ago but decided I’d try and manage it myself. I then finally went back to drs yesterday about it and they’ve prescribed me Pramipexole. I have read mixed things on this medication. I did ask for Gabapentin but was told I shouldn’t start on that? I am concerned to start this Pramipexole. Do you think I should push for gabapentin? Any advice would be much appreciated. Thanks so much xx
Advice please : Hi All. I’ve been... - Restless Legs Syn...
Advice please
The fact that you first experienced RLS during pregnancy, indicates an iron issue.
Have you got a blood test for a complete iron panel.
Depending on the result, you may need iron supplementation, either oral or infusion.
Do come back to us with your actual results.
Meanwhile, check for any triggers that might be setting off the RLS. Could be foods ,drinks or medications.
Good luck.
Thanks so much for replying. I had full bloods a couple of weeks ago. I’ve been put on iron. They said cos my periods are so heavy due to perimenopause. My serum ferritin level was 12 (says should be between 15-200??) I was on sertraline for 14 days a month due to severe PMS but have stopped this now. Otherwise not on any meds. I’m on a mainly low carb/sugar diet. Xx
It's good that you stopped Setraline, as it triggers/worsens RLS. The only safe anti depressant in the UK is trazodone.
Jools has answered comprehensively!👍
Do NOT start Pramipexole. Sadly the UK still has these drugs as first line treatment.
Iron deficiency is the main cause of RLS and iron infusions should be first line treatment.
Your serum ferritin at 12 is the probable cause of your RLS. It is incredibly low.
It needs to be above 100, preferably 200 for RLS.
sciencedirect.com/science/a...
While you push for an iron infusion, start taking ferrous bisglycinate, 50mg every other night. It raises levels more quickly than taking every night or several times a day.
pubmed.ncbi.nlm.nih.gov/314...
Ask for an immediate referral to a sleep clinic. If you're near St George's in Tooting or The Royal Cornwall in Truro, both will give iron infusions for RLS.
If you can afford it, see Dr Jose Thomas privately in Cardiff. He won't prescribe meds until after iron infusions in cases like yours.
Treating with iron is the FIRST step. Doctors aren't taught about RLS at any stage and are unaware Pramipexole and similar meds can cause severe worsening of RLS, impulse control disorder and permanent damage to dopamine receptors.
You could be med free by raising ferritin and iron levels.
As well as taking the ferrous bisglycinate every other night, take magnesium pills every night.
Cannabis can really help and is now legal for medical use in the UK via private clinics.
The NICE guidance on RLS suggests Pramipexole OR pregabalin as first line meds.
In your case, I think you should hold off on meds until you've raised your iron and ferritin.
If the RLS is very difficult, take co codamol occasionally, until you get that iron infusion.
Wow thanks for all this Jools. It amazes me how GP's operate! I am going to contact the GP again and say I have done my own research and am not happy to take the Pramiprexol. I looked back through my blood results and in October 2022 my iron was at 15 but because the NHS states that 15 is acceptable they don't do anything. In March 2021 it was 25. So not that great then either but my RLS was more manageable then.
I am currently taking (and have been for 7 days) Ferrous fumigate 210mg - 1 tablet each morning. Is this an acceptable dose?
I am going to ask GP to refer to sleep clinic and also about an iron infusion but can imagine this is not going to go down well as they don't like us minions telling them how to do their job! If all else fails I will go private. I am on South Coast but could travel to London. Will defo need some Co-codimol to tide me over I think. I am a tearful, tired mess over here 😂
Thanks again. xx
Joolsg is 100% correct on iron.
2 things though. Take your iron and magnesium at night 2 hours apart. with 100 mg of vitamin C or some orange juice since that helps its absorption. You can 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. Take your magnesium also at night but at least 2 hours apart. If you take 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 inflamation 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 or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
Wow you peeps are all amazing. Thanks so much. Dr has never said any of this. I will follow what you say Sue, thanks so much x
Switch taking iron to nighttime. Dopamine levels drop dramatically at night ( which is why RLS mainly affects us in the evening and night) and iron is needed to transport /uptake dopamine. Taking at night means the iron is readily available to help dopamine and therefore RLS.Many of us first developed RLS in pregnancy and it never went away. Standard treatment is Pramipexole or Ropinirole. Most of us started on these drugs and took them for years. If our doctors had known about the link with low serum ferritin and low brain iron, we would all have been given iron infusions during pregnancy and the majority of us would have seen a dramatic improvement.
Instead, we spent years on brain damaging meds that worsen RLS 1000% over time. Withdrawal is hell. So, avoid meds at this stage and raise your iron.
There are many people on this site who are med free after iron infusions.
One day, it WILL be generally accepted, but we have a long way to go.
Hopefully your GP will be willing to learn about RLS and the dangers of Dopaminergic drugs.
If you're on South coast, Prof. Walker at Queen Sq, London will do phone appointments and would arrange an iron infusion for you. His NHS waiting time is over a year but privately, he'd see you faster. It may also be worth calling Dr Thomas as he may be able to arrange an iron infusion locally for you. The NHS has strange rules about doctors in different areas arranging treatments though!Alternatively, you could write direct to the haematology department at your local hospital and argue your case. More haematologists are becoming aware of the link between RLS and low brain iron.
You could send the research links to help your case.
Hi 
I am on the South Coast too. Ask to be referred to the Sleep Clinic at Queen Victoria hospital in East Grinstead. I’m under their care for RLS and they are REALLY good. They will make decisions upon what you need medication wise and then update your GP so that they can manage it going forward. I also have regular follow ups with the clinic. I’m on Pregabalin 300mg and I take it a couple of hours before bedtime. I’m also back on iron tablets. Good luck! I’ve only recently joined this site and the support and help/information you get from people is fantastic. You’ll get there!!!
Best
Sharon
When your take iron it releases hepcidin which prevents the body from absorbing iron for up to 24 hours which I'm sure you know. The reason it is advised to take iron every other night is to prevent someone from taking it at different times and thus taking it sooner than 24 hours. For someone whose ferritin is really low taking it every night at the exact same time will increase their ferritin faster.
I do know about hepcedin. The only research article I'm aware of says to take iron every other night to increase absorption. I'm happy to share updated research though. I also am aware of research saying Vit C isn't needed. Interesting that articles testing iron absorption in young women produced different results to studies on iron absorption in men. Vit C seems to help men but not younger women.pubmed.ncbi.nlm.nih.gov/314...
jamanetwork.com/journals/ja...
I don't have any research but it seems logical to me. After 24 hours has gone by hepcedin doesn't prevent the absorption of iron and if one can take iron every day then one is getting twice the amount of iron.
Thanks so much Jools. I certainly have a lot to look through. I will do as you say and take the iron at night now. I take mag phos but is that the correct magnesium to take so you think? I last took the iron this morning so won’t take anymore til tomorrow night?? So it’s after the 24 hours?? You’re all so knowledgable. Can’t thank you enough xx
Any magnesium is good. Some take citrate, others threonate.
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.
If you do find your need medicine insist on gabapentin or pregabalin as these 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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist like pramipexole at Https://mayoclinicproceedings.org/a... If needed print out the appropriate section to show your doctor.
Thanks so much. I’m waiting for dr call me. I will refer to the Mayo Clinic info. I’m so grateful to you x
By the way magnesium phosphate is rarely mentioned. It's probably fine but magnesium glycinate is the one often used so you might want to get that one when you run out of the other.
I’ve ordered it already Sue. Thanks so much. Got GP appointment tomorrow morning. Going armed with all the info! X
Wow! All I can say is how lucky to have Jools & Sue for advice.I started RLS aged 36 (I am now 73). Pregnancy is a known trigger for RLS.
I was sent to St George's, Tooting, and they used me to trial various stockings to wear as in those days it was thought RLS was a circulatory problem
Nothing they gave me worked.
I then tried everything known to man. No al cohol, special diets, FODMAP, even laying on of hands & many many more.
Nothing worked.
6 months of magnesium citrate. Do try as taking double the dose (advised by alternative doctor) may at least give you some respite.
I honestly would do magnesium citrate first & blood before you go on drugs.
Eventually after years & years they discovered pramipexole and that gave me YEARS of relief but when it stopped working it was hell so I was immediately put on neupro rotigotine patches which gave me IMMEDIATE relief for 5 years so I was switched between the 2.
When they both stopped working it was hell on earth coming off.
So now at 73 I am on gabapentin (no side effects) & I have discovered Jools & Sue & all this wonderful support group.
It has changed my life.
We are indeed so lucky to have this community. How amazing everyone is.
I had drs apt this morning. Lovely dr. Phew. Listened to all I had to say. I’ve been prescribed gabapentin and higher dose of iron. Blood test in 11 weeks. If iron not where we want it then will go for iron infusion. Nhs say you have to be on oral iron for 3 months before they will do infusion. I have the gabapentin for if it becomes too much - it’s already too much!!
SueJohnson and Joolsg I can’t thank you enough for your help and knowledge. You’ve been amazing xx
Lovely doctor indeed.
My advice is to absolutely AVOID pramipexole! I used to be on it and it made my RLS much worse and in an irreversible way. Getting off pramipexole is hellish !
Gabapentin is a good drug to start with. The only problem with it is that it doesn’t get consistently absorbed. It’s hit or miss and may not work for you. But it is a safe drug and I believe it is a first-line drug to use.
Perhaps the best advice I can offer is for you to find a sleep specialist or a pulmonologist. In the US at least they are the best experts to treat this condition. Believe it or not *most* doctors are not up to date with RLS treatments and tend to start patients off on ropinirole or pramipexole and these drugs in my opinion are more dangerous than gabapentin or even pregabalin.
Also please look for posts by Sue Johnson on this site. She provides lots of excellent advice which I rely on in addition to the medicine I am on
Best wishes for restful sleep. It IS attainable!
Thanks so much. I have now been prescribed gabapentin and have another blood test in 11 weeks. If iron still not where we went it after 22 weeks of oral iron then I can have iron infusion. Whoop whoop.
Drs are defo not up to date on RLS in the UK. Lovely dr I saw and she read and referred to all the info I had with me (RLS website, Mayo clinic etc) but admitted she didn’t have a wide knowledge. I defo knew more than her but she writes the prescriptions so was glad to get her on side xx
Hi, I also have had RLS fir as long as I can remember and am now 62, for meany years I was on pramapexole, some weeks ago I contacted this forum for advice, I was on the highest dose and was getting no relief, felt my weight was increasing passing urine constantly through the night, had sone brilliant advice in hear, I went back to the doctor who put me on gabapentin, starting on one tablet for one week next week increasing then increasing age on the third week, these past couple of days have been the best sleep I have had for a long time, I no I have a way to go but feeling much better,
I have just been prescribed gabapentin today after refusing to take the pramapexole. I am doing one tablet at night too to start with. Fingers crossed it works for us both 🤞
Yes first week was one tablet 2hours before bed, following week 2 tablets, third week which I’m on now 3 tablets 2hours before bed.
Good luck, hope all goes well.
Hi I can absolutely resonate with you I’m 48 & have been a sufferer since my late teens…like you I take nerve blockers (for different condition) but came across some papers about how effective’Magnesium’ is & I did more research & discovered which type to take & have been taking it each day now for almost 3 years & I’ve amazing results from it!! I’ve had less than 4 attacks of RLS during this time & haven’t had any now since last year. I know we all can find different remedies etc but this has worked so well for me…I can send you the exact type I take if you would like to buy some to try for yourself it did a while approx 6-8wks before it stopped completely but like you I was so desperate to try whatever I could. I really hope you can find some helpful tips here from us all and wish you all the best with this…and even some peace 🥰🥰
Dear RedRobin,
I have been looking at the replies to Somebody77 and was interested to see your reply regarding Magnesium. I have been on Ropinirole and Pramipexole for over 20 years since my 2nd pregnancy. I have come off of Ropinirole and haven't taken it for 4 weeks. My sleep is dreadful at the moment and am expecting an Amazon delivery of Magnesium Citrate 400mg which I will start once I have spoken to my doctor.
Would be very interested to know the exact type you were taking as you clearly have had excellent results from it.
Thanks in advance.
Stay connected to a good doctor. I take up to seven medications a night, which include some over the counter meds, but my RLS is pretty much under control.
There is something called augmentation when the doctor has to increase one of your meds. But that works wonderfully. I’m on a Neupro patch which helps me immensely.
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