I am 33F. I had RLS (in my shins) as a teen-early 20s, but it was usually a sign of being tired and going to bed was enough. Eventually it got worse, moved up to my thighs and would not always go away with sleep...
The last 3 years it has increasingly become unbearable. I have it deep in my hips, up my spine and in my arms. It starts up whenever I am remotely at rest -- at my desk, watching TV, reading, meditating, during massages, in the dentist chair....
I've tried many many things-- multiple types of magnesium, I am fairly active (walks/pilates), I practice yoga and meditation regularly. I do cold plunges and hot baths with salts. I use massage tools, weighted blankets, compression socks. I found antihistamines and melatonin make it worse so I avoid those and other triggers I've identified. I think electrolytes help some, but not enough. CBD does nothing, actual THC / getting high takes the edge off but not for long.
I've been told my iron is fine, but I did take a high quality supplement for 3 months earlier this year with no relief either. I just had my bloodwork done again, Iron was 21.2 umol/L, transferrin was 2.03 g/L, Transferrin Saturation 0.42(no unit).My B12 was fine, but D was low so taking a supplement now.
Doctor put me on 0.25mg of pramipexole..... I cut them in half and have been taking that for 4 weeks now. Which has been working great... I am finally getting sleep and can relax during the day....but now I read the risks of augmentation.
I took pregabalin a few years ago for anxiety... I really didn't like that drug but maybe should consider trying it again.
My question though --- should I try IRON again and what is the best supplement?
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Catsmeow13
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Get off the pramipexole while you haven't been using it for very long as it will be much easier and your doctor started on twice the normal starting dose so you are already at half the maximum dose.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .088 [.125] tablet) (ask for a prescription of these if needed)every 2 weeks or so. 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.
Dopamine agonists like ropinirole and pramipexole and the Neupro patch (Rotigotine)are no longer the first line treatment for RLS. Gabapentin or pregabalin are. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off 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 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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Apparently your ferritin was not checked in your blood work and that is the most important number for RLS. This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. So 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.
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...
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.
Thanks I double check if the pramipexole is ER or XL.. the pills do have the scoring to cut on half as I have been doing to keep my dose low. I'll ween off...
And yes I have tried basically everything natural you suggested over the last few years, I can't take it anymore, at my wits end and needed relief... Need sleep.. need to stop smoking weed!
Hi Cat, first off, you must see if you’re an “immediate responder” to the ferrous bisglycinate, like me, and dozens of others on here. Try taking around 50mg of the bisglycinate on an empty stomach, 1.5 hours before bed. Your RLS should go in one hour for one night - if you’re like the rest of us. It should work that very first night. If not, then you can follow the advice of the “regulars” on here who refuse to acknowledge this superior treatment. See below.
You shouldn’t be having RLS during the day, especially at your age. Are you on SSRIs, anti-psychotics, or birth control (including the ring)? PPIs? Trazodone? All of these drugs will make the “symptoms” of RLS much worse than they have to be. Wellbutrin is the only RLS friendly anti-depressant, as far as we know, for now. We used to think Trazodone was friendly. It most likely is NOT.
Thanks! Yes I am shocked how bad it is at my age.. I am on an SSRI, Viibryd...For a couple years now so perhaps that is something! I am starting to taper off it very slowly as I never really felt it helped much and I have my anxiety/depression mostly under control with therapy and other healthy practices.
Problem solved!!! 😁🌈💥 GO SLOW. TAPER OFF THE DA TOO! I have a feeling the iron will help you tremendously, but you will need a minimum dose of 50mg. Do not take it during the day, it will make your night time dose less effective. If the iron doesn’t get you to 100% RLS free then ask your doc about low dose codeine instead of the DA.
Only one kind in my opinion - ferrous bisglycinate. But if you have sulfate at home and are desperate tonight then try two capsules with vitamin c. If the iron at night trick works then call your doc and let him know what you’re doing and that you’ll be adding nightly iron and cutting back on the DA. Ask the doc when your last ferritin test was as well as the number. Ferritin has little to nothing to do with RLS, unless you’re anemic, in which case that is a trigger no different than the SSRI. It’s all about serum iron (that free floating iron in our blood) which plummets at night (lowest point is midnight) and brings on our RLS. The ferrous bisglycinate raises that serum iron and we get relief…for one night. Dopamine also plummets at night, in everyone, just like the iron, only we who are predisposed to RLS and have a lousy dopamine transport system, need every drop of that dopamine and iron. Our RLS brains can’t handle that double dip. So you can take a DA, as you are doing, to raise dopamine (and worsen your dopamine receptors in the process) or you can take some iron.
Hi, just a tip from my experience.1 change at a time.
Don't start weening off everything at once.
Definitely get your iron checked as it would be fabulous if an infusion was the answer.
I would get off the prami and get on the Gabapentin. I had a hell of a time getting off it and wish I never took it. You have a great window of opportunity to get off it now.
Def look at all possible triggers but go easy on yourself.
It's a lot to take in.
I feel for you, RLS sucks and doctors are all twits.
You can look at weening off the SSRI after you can sleep and your RLS is under control.
In addition, keep taking the vit D supplement diligently. And make dure you get as much natural light on your bare skin as possible, as the most natural source of vit D. It may help ease or even resolve your current RLS. I would think you are fairly young to get on the serious medicine path. Try to last without as long as you can, as usually RLS gets worse with age. Unfortunately.
I know I tried to hold out SO long avoiding the medication route, already hate all medication I've tried for my insomnia/anxiety which I think I have mostly under control now without medication but the RLS is so so bad.
I do usually take vitamin D in the winters but doctor found my levels low right now in the summer so I am on a prescription D now for a few weeks.
I'll take vitamin D, get my ferritin checked, and get off my SSRI and hopefully things calm down but as you said.. age and God knows what menopause will do when I get there!
I was at my wits end like you with rls and plmd. After trying lots of other things the dr prescription pramipexole for me. I took my first 0.088 dose and could watch telly and get a nights sleep! It was a miracle. Fast forward 10 months I was on 5 x 0.088 at night with lots of symptoms again. Augmentation is real, I saw my neurologist last week and I’m am now having to come off them. I feel sick/rough with a headache all day until about 10 mins after I’ve taken the lower dose in the evening. I would stop them now if I were you. Good luck 😊
Everyone else is suggesting getting iron levels up as well as gabapentin/pregablin. I was on pregablin once, for different reason, it is also hard to come off of but I don't think there is risk of augmentation if it works.
I’ve been on iron for months and months and my ferritin had gone from 33-62 which the Neurologist said is rubbish. He’s suggested an iron infusion but is going to speak to his colleagues who are more familiar with my predicament. Gabapentin and pregabalin didn’t work for me but then I don’t think the dose might have been high enough. It’s something I would be open to try again.
I do believe my RLS was better when I was on 150 pregablin but it was so long ago and with how bad it's been or how it changes (going up my hips , spine, shoulders now now even in my shins anymore and all day not just evening) + everything I've tried... it's been a blur.
I've been sticking to 0.125 pram for 4 weeks now and only start to feel it slightly in my hips near the end of the day.. but I'm going to take everyone's warning and find alternative. As well as ween off my SSRI which could be culprit for the severity of mine.
I also tried iron supplements for a few months earlier this year and it didn't really help.
Just wanted to add my 2 cents about the D supplements. I have been taking Vit D supplements for about a year now with noticeable results. Not completely gone but definitely feeling a difference. I take 800 UI once a day with dinner in winter, 400 in summer or not at all if I have gotten allot of sun. The best absorption ones I have found are in pearl form like these for example:
* It took 3-4 weeks before I felt any improvement.
* If I took too much I had a hard time falling asleep. I learned that this is because your liver has to filter out the excess and this can interfere with sleep.
Thanks for sharing ! I do take vitamin D in the winters but doctor just found my levels were low and put me on prescription D a few weeks ago, every bit helps I hope!
Pahaha oh I do. I do. Every night or during the day if I really can't take it. But it doesn't last forever, and my poor asthmatic lungs don't appreciate lately.
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arguing GP's - RLS-iron
Seeking thoughts on lab results (and my condition in general)
Blood test (Iron) results - likely the cause of my RLS?!
New to blog, but sufferer of RLS for many years
Why is RLS affecting my arms for the first time now that I’m off pramipexole?
