I have been doing much better since I have been supplementing with Iron (650mg x1 per day, in the evening.) I have been supplementing everyday for the past 4 months. My iron test is soon, I postponed it because I got a cold.
Even my sleeping is getting better. I also take 900mg of gabapentin diner to bed. I should also mention, I have stopped taking Melatonin about 1-2 months ago, I think I am sleeping better without it (I think).
However, lately I am waking up with RLS symptoms. Granted after sleeping fairly well (maybe 4-5 hours).
Does anyone wake up to RLS symptoms. I haven't changed my medication.
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WideBody
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I wake up with rls all the time. Usually around 5.00am. I make myself a cuppa pace around for a while and then try and go back to sleep, Sometimes it works, other times it doesn't, I then give up and start my day. I tend to suffer with rls during the day as well as evenings and at night. Such a wretched affliction!
Yes, and no. I believe the reason is because most women have a lower iron level do to obvious reasons (menstrual cycles and pregnancy). So even though RLS is more prevalent in women, as long as it is not genetic, there is a better chance that iron will help.
To add to what you said WideBody and I heard this from the specialist himself that the iron loss that women suffer during pregnancy and mensturation just adds up to the iron loss we have suffered over the years and that is why the RLS is much more intense as we reach our mid 50s and 60s.
Yes iron and vitamin d may help restless legs. Vitamin d works in synergy with iron. I take vitamin d 3 which is the sunshine vitamin converted in the skin to the liver. Though sunlight is said to give supplies which last for months I have to keep out of the sun. It is not as easy to find as you think in large enough amounts in foods . You can find a daily supply from cup mushrooms in about 4 oz. Salmon sardines canned tuna. Milk does not contain much neither does milk or yogurt and meat. Tofu soy milk fortified cereals and fortified juices might help. Too high vitamin D can cause kidney stones . D 3 is found in the foods listed.
There is most definitely a connection between low iron and low Vitamin D. At least in me there is. I read somewhere they are absorbed in the same place in the colon. When I was told my Vitamin D was low, my response to the doctor was. "Look at me, I am more tanned than anyone I know" I am outside a lot, I hike and bike. I generally don't wear sunscreen. (that is changing).
Also, Vitamin D gets absorbed by fat tissue, so heavier people need more. BTW, when people diet the Vitamin D is released. I guess I don't need to worry about that!
Yes. Been reading an paper title Effects of Calcium, Citric Acid, Ascorbic, Vitamin D3 on the Efficacy of Microbial Phytase in Broiler Starters Fed Wheat-Based Diets 1 Performance, Bone Mineralization and Ileal Digestibility. College of Agriculture Isfahan University. Dont think it would appear in the BMJ but results seem to show that the bioavailability of vitamin c in ascorbic acid in soy based infant formulas. As a consequence the effectiveness of Microbial Phytase may be enhanced by feeding it to the chickens in combination with an organic acid. Have looked at supplements of iron and vitamin C and now realise it is added to help the microbial digestion in the upper digestive tract. Vitamin D plays a role in calcium and Phytase absorption and influences their utilisation. 1993 Edwards data suggests that vitamin D and dietary phytase phosphorus absorption. It helps to understand how the food chain if supplemented may help absorption of vitamins and minerals. If you have digestive or thyroid disorders you may find it hard to assimilate iron and ferritin levels may be lower. Restless legs is not an easy syndrome to understand as there may be hereditary factors with digestive disorders which are never diagnosed and people may find it difficult to assimilate iron. Pleased your levels are ok but NHS levels are below optimal levels to feel healthy. Thats why people still don't feel well when their levels are said to be normal.
Yes, I'm still taking a DA. I'm tapering down from 9 mgs and am at 2 mgs atm. I tried tapering down to 1.5, but struggled too much at that dose so went back up to 2 mgs. My symptoms are probably due to withdrawal and augmentation still. I'm taking codeine in the short term and am seeing the consultant on Wednesday afternoon to see what can be done so that I can finally be rid of the DA. Hopefully he'll give me something to see me through the worst of the withdrawals and something else to deal with the RLS. Keeping fingers crossed that the consultant knows about RLS and doesn't treat me dismissively!
That explains it, augmentation. Good luck with the consultant.
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I take iron tablets and now very rarely get jumpy legs anymore. Phew.
What do you mean by augmentation? I know what the word means but not in terms of RLS. Excuse my ignorance.
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Gteat that thr iron tablets work for you.
It sounds as if you appreciate that iron can have a significant impact on RLS. However, hopefully you appreciate that iron doesn't work for RLS in the same way a medicine does. If you take a RLS medicine it will typically reach full effect within 3 hours. Then depending on which one it is, the effect will halve about 6 hours or more. .Within 24 hours it will cease to be effective.
However, iron works because RLS depends on the amount of iron the body has "stored" and that is indicated by a blood test for ferritin. For at least 50% of RLS sufferers RLS is improved if their ferritin level is over 100ug/L. If it's less than that then it's worth taking iron tablets with the aim of raising the ferritin level. However, it takes a long while to raise ferritin, weeks or months. If you stop tsking iron it may fall again, but also slowly.
Hopefully, you also appreciate that it is not easy to absorb oral iron and most of what you take may actually go straight through. To help absorption, it's best to take it every other day, rather than every day, take it on an empty stomach with a glass of orange
Apologies if you already knew that, it is an important point.
"Augmentation" has a different meaning for RLS. It's only really relevant if you take a medicine for RLS. In particular taking a medicine for RLS from a class of drugs known as dopamine agonists, (DAs). In addition it also applies to people with parkinsons disease who take a DA or anyone who takes L Dopa.
Augementation is where, after taking a DA for some time, i.e. years, but sometimes only months, instead of making RLS symptoms better, it makes them worse.
Once this happens, Symptoms get much worse and the DA has to be stopped. Stopping a DA can be a nightmare and for a few people, it's impossible.
Because of this it's recommended that either DAs are no longer prescribed for RLS or are restricted. Unfortunately a lot of doctors don't yet know this.
If you don't take medicine for RLS, then you have nothing to worry about.
If you ever need a medicine, do NOT take a dopamine agonist, pramipexole, ropinirole or rotigotine.
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Thank you that explanation, very informative.
I didnt know its best to take iron tablets every other day and on an empty stomach; i always thought it had to be directly after a main meal.
The recommendations are to take iron the evening because that is when your brain needs it he most. Nothing to eat two hours before or one hour after. If I don’t follow that rule, I get black stools or constipation.
As ferritin rises the body produces hepcidin to block absorption. To work around this, take iron less frequently. I started with 325mg twice a day. My ferritin was 120 last test. I now take 650mg once a day.
I suspect and hope that when my ferritin is between 200-300 I will be supplementing every other day.
The iron in the evening is probably recommended because a) it may be hours after the last meal of the day and b) peristalsis, gut movement, slows down at night. Hence the iron will stay for longer in the intestines so more can be absorbed.
The empty stomach is most significant.
Iron being needed more at night, I don't think, is accurate.
Hepcidin does inhibit, but I doubt it's linked to ferritin. It's more to do with iron levels in the blood and liver. Hepcidin levels also, unlike ferritin are quick to change.
Although I see recommendations that iron should be taken daily, or even several times a day this may trigger the release of more hepcidin. Hepcidin is part of a quick reacting self-limiting homeostatic mechanism which protects you from too much iron.
Hepcidin disorders like haemochromatosis are serious and disabling, fatal if untreated. Luckily normally, because of hepcidin, the amount of iron you absorb is restricted. But then, that causes restriction on raising brain iron levels.
So you will find that there are recomnendations that you only take it EVERY OTHER DAY.
Thanks Manerva. I get my information from Dr. Early in this wonderful video about Iron and RLS. If you start at about 24 minutes, he begins to explain the studies (in apes) about serum iron and the needs of the brain. Only a very small amount of iron we take makes it into the brain. 0.5%
I highly recommend this video, it changed my life.
I read too much. But I can say, I supplemented everyday for a year, once a day, in the morning. My ferritin went from 18 to 217. It didn't touch my RLS, probably because I had 0 iron stores. But I also think my body wanted the iron so badly, it never made it to my brain.
I now supplement at night, I absolutely know it is not an immediate effect. One of my regrets is that I did not get an infusion sooner. I am using every chance I get to increase my absorption. So far it is working (mostly), so I am staying with it.
Thank you Manerva for all of your explanations, I still have to use a medical dictionary to look up all the words, but I am getting there.
This might be a matter of the timing, i.e. when exactly you take the gabapentin.
As its half life is only 5 to 7 hours, if you take it too early, it might be wearing off before your dopamine levels have started to rise in the morning.
Obviously if you take it too early, then it won't have taken full effect by the time you go to bed.
You could try splitting the dose, say 600mg 2 hours before bed and 300mg 2- 3 before that. Depending on your current regime, this could mean you're taking some of it later, so it will last through the night, and some of it earlier so you can get to sleep.
Strangely, because of the absorption characteristics of gabapentin, you will actually absorb more of the drug than if you take it all at once.
Thanks Manerva, that is pretty much how I take gabapentin. One at around 5, then around 8 and one at 9, bed before 10, if all goes well. Last night was closer to midnight.
I too more often than not have AM RLS. well, really now its just non-stop RLS until about 5:30-6AM. but even before it became a non-stop all night thing I had it in the morning. its so frustating! It calms down just before I have to get up for work.
I always wake up with RLS. I take repronole the full dose. It stops it for the evening and the nightime but I always wake up about 6 to 7am with RLS make myself a decaff coffee and sometimes go back to bed again for an hour or so. If I didn’t take reprinole I would have RLS all day and all night except when I’m active.
I am taking a course of iron from the doctor and he is trying to get me up to a level of 100. He said my current reading has gone up to 60. It was 49 and now I’m on 3 tablets a day. The doctor told me that RLS patients should have an iron level of 100. I’m really hoping this works. The doctor also told me that taking vitamin c with the iron as it helps the body absorb the iron better. I am 75 years old.
Does anybody get a sensation of
Water running Down their leg? And I wasn’t having a wee!! I get sciatica as I have spinal stenosis and thought it was to do with that, but the doctor on the geremy vine show on radio 2 said this was a symptom of RLS, so I am wondering if there is a link with spinal problems and RLS. I first was aware that at night a weird feeling in my feet that kept me Awake about 4 years ago which i have realised was the start of my RLS.
Ever since going on pramiprexole. My symptoms are WAY worse in the day (comes and goes) and only occasionally better in the night. Still waiting to see a neurologist sigh :(. Meanwhile my sleep starts at 3am and ends at 6am most days now. zopiclone helps every couple of days when I'm so exhausted I have to sleep. I do a very technical job and feel muggy headed and have been warned about being off sick too! Thanks to hr for the understanding! So yeah day time got worse for me.. it's no fun
I am not an expert, but I can say, DA drugs destroyed my happy life. I would rather die from RLS than every take a DA drug again. It sounds like the pramixepolie is not working for you. Did they test your iron levels? What was your Ferritin and TSAT? (Transferrin Saturation Percentage).
Really sorry to hear that, you have my utmost sympathies Iron (cant remember 46? 4.6) and ferritin (99) OK according to them?! I had to specifically ask for ferritin check but what is TSAT???
Had rls just over a year, but didn't know until I self diagnosed 6 months ago! so I'm a beginner really. I seem to have augmented really quickly on prami. :(. But at the moment it's better than nothing.
I DON'T think Prami is "better than nothing". I personally believe it made my RLS worse and my life a living nightmare. Prami should work or it doesn't it's not a maybe if I take it at the right time.
The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency. So most Doctors and people would want to rule out the bigger issues.
The first step is a Morning Fasted Full Iron panel consisting of Serum Iron, Ferritin, Transferrin Saturation Percentage and TIBC. I believe the recommendations from the experts say that a Ferritin over 100 can help with symptoms, some Doctors are no recommending a ferritin of over 200.
"Since the 1950s, it has been known that iron therapy, even without the presence of anemia has benefits for RLS symptoms. Studies have shown a strong relation between body iron stores as determined by serum ferritin and the severity of the RLS symptoms. A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy (325 mg ferrous sulfate twice a day on an empty stomach) on average improved RLS symptom after 3 months. "
It is important to test, but I think three months of iron for someone suffering from RLS is better than nothing and a hell of a lot safer than Prami. BTW, watch out for behavior changes with DA drugs and DO NOT stop taking them abruptly!
I often wake up with it in the morning. I have rls but it actually isn't in my legs. It is in my feet. I get it in one foot at a time. It alternates. I have to position my foot on top of the one with rls whilst lay on my side. Then it goes and starts in the other foot. So I have to turn on my other side and position that foot. It is a nightmare. It is usually about 4.30-5.00am when it happens
I'm wondering if perhaps I would be able to stand this if it was only in my foot but if you have never experienced it anywhere but your feet then I'm sure it is quite agonizing for you. Right now I am in DA augmentation. My whole body is 1 big RLS mess.I feel like a fish out of the water flopping around on the ground. I've been in tears most of the day. And when I get like this I do not want my grandchildren to see me because it scares them. My mouth is so incredibly dry and my lips are so chapped they hurt. Everything I drink tastes horrible. I've tried my favorite bottled water yuck I've tried my favorite soda yak I've tried orange juice apple juice cranberry juice Sunny delight. The only thing I can see him to be able to swallow because it's not tasting like something I licked off a wall is milk. And of course the milk is making my mouth feel twice as dry. Sorry getting back to your foot. I'm sitting on the edge of my bed right now and my legs are back and forth back and forth sliding on the floor.. it's affecting my arms now that I'm in augmentation and my shoulders keep lifting up and down and up and down so my neck is very sore I keep rubbing my legs it doesn't really help this time around.
apparently sometime this afternoon my older grandson came to me and apparently I was half solutely hysterical. He said he was so scared he almost called 911 because it was almost like I was speaking in tongue. I remember getting mad at him for laughing at me. Apparently I can be quite sarcastic when I'm going through this new thing I'm going through. Just about the time that I really have to move and bend and stretch a lot more than before thanks to augmentation, but I am limited because at the end January I had my hip replaced. It helps when I lie on my side and massage the sides of my thighs and then switch and massage the other side and then bend down and massage my calf but I can't because of the limitation of movement that I have due to my surgery. All I want to do is lay on my back take my elastic band that goes around my foot and stretches my legs that I have to do with the good leg physical therapy. I can move my feet up and down and I guess if I only had it in my foot that would be quite helpful. I'm really sorry I am not trying to undermine your pain and anxiety. I realize that I sound like quite the b word but I just haven't slept in days. I hope you and all of us gives help soon from somebody.
Trust me it is just as bad in the feet. I also have to move about, feet jump. I stretch my legs and I also get it in my arms. It is was severe before my meds were prescribed. I also have yo get up to relieve it. I don't get pain. Never have had pain. Just this awful annoying sensation that prevents me from falling asleep. It's no different than it being in the legs. I have had this condition 47 years
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kidding aside. Thanks for the information, it was very informative!
Does anyone else suffer from these RLS symptoms? - Need Help, all comments appreciated
Why does the majority on here feel getting an iron infusion is horrible??? Have you ever had one??? I have and they are not bad!!!
Iron has helped!
total knee replacement triggering RLS
