I have RLS and got some bloodwork done. The following came up:
IRON , SERUM 91.0 µg/dL
TOTAL IRON BINDING CAPACITY ( TIBC), SERUM 353 µg/dL
FERRITIN , SERUM 116.1 ng/mL
I was wondering if Oral Iron would be useful for me or end up giving me toxic levels of it.
Welcome to the forum. You will find lots of help, support and understanding here.
Your ferritin is fine. There is no point in taking iron. It just needs to be over 100.
However I see you listed pramipexole on your profile. Are you aware that up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it 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 now first line treatment for RLS gabapentin or pregabalin won't work. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.Https://mayoclinicproceedings.org/a...
.5 mg is the maximum but even at .125 mg one can suffer augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
If this is the case with you or if you want to get off pramipexole, reply back here and we can give you some advice. It would be smart to get off it before you suffer from augmentation as it will be a lot easier.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, 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, C, 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.
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.
Hi Sue, thank you so much for the comprehensive response!
I don’t take pramipexole anymore. Only took it for about a month and a half from mid dec ‘23 to end of Jan ‘24 and then stopped since it wasn’t working.
I have tapered off of the escitalopram too.
I have been off all medications since the last 3 months. Unfortunately, the RLS has remained. In fact strangely in the last 2 weeks, it has spread to my arms. I can’t identify a reason why. The only thing that changed is that I was taking a lot if supplements, Magnesium, iron, vitamin b complex, C, Selenium, Boron and then stopped because I ran out of them.
Fortunately (and knock on wood) my symptoms are mild enough that massage and some stretching is enough to be able to sleep. The symptoms are most noticeable in the morning right after waking up and at night right before sleeping. Lately at night they’ve become painful rather and excitatory but is still say that the overall intensity has not changed much in the last 3 months or so.
I do take melatonin (1mg) some times. Other than that I plab to start taking the mentioned supplements in a few days again.
Several things are strange about your experience. It is not common to have symptoms in your arms. It is not common to have pramipexole work for only a couple of nights, it is not common to have RLS worse in the morning and clonazepam which does help sleep has not been shown to help with RLS so coming off it might have caused withdrawal effects but not RLS .
When you have your RLS do you have an urge to move your legs?
Does walking help?
I have sensations of excitation, tickling, sometimes pain in my legs when I lie down with them outstretched at night. Yes, walking and movement in general does make it better temporarily only for it to return a few minutes later when I lie down.
I didn't have the symptoms in my arms originally. They appeared out of nowhere 2 weeks back. They feel a little different from the sensations in my legs. More like someone's pinching them or sometimes burning. Sometimes they feel similar to the sensations in my legs. Sleeping on them i.e. with them tucked under my belly helps to an extent. I couldn't identify what changed that I started having symptoms in my arms except that I ran out of the supplements I was taking: Magnesium glycinate, boron, selenium, iron, Vitamin B complex and C.
I took 0.125 mg pram for 4 days back in December and then I was told to up my dose to 0.25 mg and maintain it at that level. It worked the first couple of nights, I could feel the sensations quiet down (but not go away completely) 1 - 2 hours after taking it. This stopped happening about a week after I was on it. I continued taking it for a month and when it didn't help, I stopped it on my own against the doctors advice who suggested I keep taking it.
Clonazepam and benzos in general are a treatment for RLS (they're last line though even after opioids). When I asked the doctor, why I was having RLS all of a sudden after tapering off clonazepam, they explained that the clonazepam was masking my symptoms the whole time I was taking it. Coming off of it caused it to resurface.
I am seeing a new doctor right now who suggested oral iron therapy and improving my sleep hygiene. I must admit that I have been inconsistent with maintaining a proper sleep schedule due to moving a lot and stress from work.
The most important thing is the urge to move the legs. If you don't have that you don't have RLS.
And although you can continue to have RLS in the morning it is not worse then unless you were taking medicine for it and it wore off by then.
"The efficiency of clonazepam has not been established and they should not be used to treat RLS symptoms" according to NightWalkers Fall 2021 which is the monthly magazine put out by the Restless Legs Foundation which includes the world's top experts in RLS.
And the pramipexole is actually a test for whether you have RLS. It probably worked for a few days because of the placebo affect and shouldn't have stopped helping after 4 days especially at .25 mg.
Remember most doctors are NOT experts in RLS and yours is definitely not or s/he would never have put you on pramipexole in the first place.
In short I really wonder if you have RLS. There are many other things other things that can have similar symptoms.
Well moving makes it better so in that sense there is an urge to move. The sensations as I’ve mentioned before, feel like a small electric current causing excitation. Kind of like chill running up your spine but in your legs instead. This is the most common one, other than that I’ve felt pulling/cramping, stabbing pain (mild), dull ache.
I wonder why my symptoms are strong in the morning. They’re at their highest intensity immediately after waking up when I start gaining awareness of my body and then go away a few minutes after. They remain at the same lowish intensity through most of the day only noticeable when my arms or legs are at complete rest when I lay down with then stretched out.
Should I try a higher dose of pram (0.375mg) for a week to see if it works?
A week back I tried pram (0.25mg) for just one night to see if it would work and it didnt. I thought it’s the kind of med that doesn’t need to build like unlike gabapentin and escitalopram.
As i mentioned in a previous post, I have periodic limb movement disorder (PLMD). I also have some RLS. My PLMD symptoms are most intense early morning anywhere between 5am and 7am. This is probably more to do with the fact that i'm in a lighter sleep and am noticing them. Your description of the electric current very much matches my experience. PLMs most typically happens when asleep but can happen when awake. Sometimes i experience a low-level restlessness in my legs also.
I only ever experienced movement in my arms when i augmented on pramipexole (and possibly coming off it but it was a long time ago).
If you were taking the escitalopram at the same time as pramipexole, it may be that the pramipexole dose wasn't sufficient to counter the effects of the escitalopram. It may be worth trying the pramipexole again at the lower dose, just to see if it works (not as a long term therapy) and to establish if it's RLS/PLMD.
I did try it just for a day on 2 occasions (I took 0.25mg) and it wasn't effective at all. I wonder if I should either try it for more days like for a week or try a higher dose.
My understanding is that it works straight away, and typically at a lower dose. It worked straight away for me, as in from night #1. I remember distinctly the sheer bliss of getting restorative sleep.
If your symptoms are mild, and 0.25mg pramipexole isn't working, i do wonder then if it's even RLS/PLMD.
Did it obliterate all symptoms for you? or tone it down?
The first time I took it was in December last year. I could feel the RLS sensations reduce in intensity. Not that the intensity was way high to begin with. It brought them down from say a 3/10 to 1/10. Was that the case for you too?
I will try it out for another week. I am in the middle of moving to a new place right now so a bit reluctant to start any drug. Let me see what is going on.
There are a couple of other vitamins I was found to be on the lower on on or outright deficient like vitamin B12, D. I also have a slightly higher than normal TSH (5.8). I wonder if these are related.
I did take vitamin D for several months and B as well. I haven't checked my levels though lately. Health care in the US is astronomically more expensive than my home country. I wonder if I'll be able to afford it even with an American salary.
My main issue is PLMD, so pre-medication (and lifestyle changes) i would wake up feeling as though i hadn't slept despite having been asleep for 7 to 8 hours. When i took pramipexole, i don't recall having any RLS (until augmentation set in) and i felt really refreshed on waking. So i would say in those first few months, it obliterated it completely.
Both Vitamin D and B complex are good vitamins for RLS. The more bio-available the better.
Yes, from what i have read on this forum, healthcare in the US does seem very costly.
However, as someone once said to me, "everything is downstream from health".
Did i see you mention that you take melatonin occasionally? That is a big RLS trigger for many.
No I wouldn't try .0375 mg.
I see that you've made two posts a few hours apart, getting good advice against both.
But was that serum ferritin number the result from a blood test taken in the morning after fasting overnight, no iron supplements for 48 hours? If not, it could be artificially high.
If it was a fasting morning test, it's a moderately good number but you *might* benefit from raising your serum ferritin further - to 200+ - but starting from 116 this would be a very slow process using oral iron. An iron infusion would be quicker. But if you were to try to do this you'd also want to check and monitor your transferrin saturation (TSAT) percentage, as this needs to stay below 45-50% if you're to avoid iron overload.
I never had low ferritin yet suffered with RLS for 40 years well into my 60s, never taking medications for RLS, before I finally identified my triggers. Now in my early 70s I only suffer with RLS if I binge on something that I supposedly know that I shouldn't. But then I never took a dopamine agonist or an antidepressant which can have lasting effects.
Hi Chris, thank you very much for your response.
Yes the results are from an iron panel after an overnight fast and without taking any iron supplements 48 hours prior. I will take another in the future to confirm the results.
I am not on pramipexole anymore. I stopped in Feb and only took it for a month and half.
I want to know if exercise, muscle gain and fat loss made any difference. I have led a very sedentary and inactive lifestyle till now. My diet is also mostly crap. My sleep routing is a little irregular and am trying to get it regularised. I wonder if these things make a difference to RLS.
Moderate exercise during the day is good, not too strenuous or too late in the day. Too much sugar, carbs, MSG, too much salt, spices, diet foods and drinks containing artificial sweeteners (particularly aspartame), alcohol, caffeine in some cases, can be triggers for some (including some for me). On the other hand, diet makes no difference to others.
Some people get relief from magnesium supplements and in the past some posts have claimed that vitamin B and/or B1 supplements have helped so your problems maybe related the fact that you’ve stopped your supplements. Supplementing iron with normal OTC oral iron supplements is unlikely to cause iron problems because of your body’s natural iron regulation mechanism I.e the hormone hepcidin. I raised my ferritin from 70 through 140 to 170 ng/mL and it seemed to help my RLS a little. Most Doctors and Haematologists don’t have problems with ferritin levels above 100 and up to 300 ( in fact the “normal” range is something like 25 to 250) so it may be worth trying supplements. The 100 level is really just a guideline and our bodies don’t do anything special at this level. The number to be careful of is TSAT% which the Mayo Algorithm says should be less than 45% so you should check that in your blood work and if you are very close or over that then don’t supplement. Regarding dopamine agonists they do tend to work very effectively, I take 2mg Ropinirole very occasionally if I absolutely have to sleep and it’s difficult to be up and walking about and it works very well. I do wake once or twice but have no symptoms and go straight back to sleep so your experience with pramipexole is atypical although I can’t comment on whether the dose is suitable. Again morning intense symptoms seems unusual, mine are “classic” - worse at night and late evening and restricted to legs although very occasionally it feels like back and arms. I just have to move and don’t get pains. On the movement it really is impossible not to move, if you can grit your teeth and endure the sensations then that would be unusual and not in line with the normal description although we see so much variability in symptoms, causes and response to medication that it’s hard to be absolutely prescriptive. Right now resuming supplements and maybe adding iron seems an easy and safe way to experiment. There are other (more recommended) drug options such as pregabalin but maybe worth trying these others first and looking at other possible causes for the pain e.g. neuropathy. Co-incidentally pregabalin/gabapentin are also used to help with neuropathy.
Lots to consider for you. My (severe) RLS was indeed iron related. I also had it in my arms. I could not lay down (let alone sleep) for more than an hour before I HAD to get up and walk around. My Ferritin level was 49 and I raised it to 105 in 3 months - RLS mostly went away. Sleep disturbances remained but not the horrible urge to move. Iron article...
help for a friend
Appointment with Robin Fackrell
UPDATE: RLS, magnesium, calcium and hard water
ASHA AND CHEWIE
Which treatment after dopamine agonist withdrawal?
