Here we go again!

[Sher78]

Many of you may recall that I have suffered terribly with restless legs and arms for decades and that I FINALLY got some relief when I was prescribed Ferrous Fumarate for constantly low iron levels.

Although the nightly RLS is still under control, in the past 2 weeks I have actually woken up in the morning because of it, although it is nowhere near as intense as the night time sessions, it still prevents me sleeping until the time I WANT to get up.

Still taking 2 Ferrous Fumarates a day (one in the morning & one about an hour before bed). Currently taking 2 before bed to see if that helps but so far, no. No medication/diet changes etc (those who are familiar with me know I am a creature of habit and routine) so was hoping someone could offer an explanation or some insight into this before I go back to my GP.

[SueJohnson]

I have no insight on your problem, but you are taking your iron wrong. When you take iron, the body responds by releasing hepcidin a peptide hormone which prevents you from absorbing any more iron for up to 24 hours. Also iron redistribution in the brain is highest during the nighttime hours and studies suggest it may be better absorbed later in the day"

You probably know most of this but just in case you don't: Take your iron with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time so it is at least 24 hours apart 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 or calcium take them at least 2 hours apart since they interfere with the absorption of iron. 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. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. Low vitamin D can cause high hepcidin so make sure your vitamin D levels are normal. Inflammation from say a cold can cause high hepcidin. Excess minerals like zinc, calcium, magnesium and copper interfere with iron absorption. Blood loss from menstrual cycles cause low iron absorption.

[Sher78 in reply to SueJohnson]

It has worked for me the way I have taken it for almost 2 years so flummoxed as to why all of a sudden it seems to be trying to rear it's head mornings.. I have to keep taking the iron due to my anaemia as that's primarily why I was put on it in the first place (it was just coincidental it helped my RLS). As for taking with other meds/supplements, I follow all the rules (no coffee/tea etc 2 hours either side, take my evening dose with vit C, am on vit D anyway, all other vitamin/mineral levels fine (had them all checked recently) and don't have menstrual cycles due to being on meds for adenomyosis. May drop my am one and take 2 in the evening instead and see if that helps, thanks Sue. Don't really wanna start on the RLS med route.

[SueJohnson in reply to Sher78]

Good luck. I hope that works.

[Sher78 in reply to SueJohnson]

Thanks, so do I!

[Hidden]

Hi Sher, it’s been a while since we chatted. Maybe think about switching to ferrous bisglycinate - and take two before bed like the fumarate. I’m sure you know not to eat anything in the middle of the night/early morning. A crumb at 5am will give me all-out RLS (within about 10 minutes) for a good 20 to 30 minutes. So disruptive!!! Yet I can’t tell you how many times I find myself doing just that. Ya know, you can take yet another iron upon early awakening. Since your ferritin is so low you don’t have to worry about hepcidin being released and stopping the absorption of that iron. Also, you may have gotten to that age where certain medications that didn’t bother your RLS before, bother it now. Or if you changed the amount or timing of those medications that might be the reason for the early morning RLS. Please keep us posted.

[Sher78 in reply to Hidden]

What would the switch of iron type do? Kind of reluctant to change the type due to not being able to maybe get the same kind of strength of gentle iron as the fumarate from the Doc. Definitely no change in meds or timings of meds. Wondering if the menopause may be affecting things? All I know is it's doing my head in, I really thought I had this licked. Think I may just take a little of what Sue has said but take 2 before bed instead of having one in the am and one in the pm for a bit and see how that goes. Thinking about it, actually, it seems to possibly maybe coinciding with the trigger point in my calf playing up again so will try and sort that out also. As I stated, at least it's still kept at bay night times. Will check back in once I've had a mess around Thanks Salem!

[Hidden in reply to Sher78]

yes, taking the full dose of iron before bed (hence every 24 hours) is a must and on an empty stomach. Those are the golden rules around here. If you wake up with RLS and a hot flash then I think you’ve found your culprit - menopause. Don’t get out of bed and assume you’re done in terms of sleep. The RLS may very well pass in a bit and you can then get some more zzz’s.

[Tildabri]

Like you, I have had RLS for many decades, and until recently it's mainly affected me during the morning or in the evening. Lately, however, it's been waking me up in the early morning (4-5am) and I haven't been able to get back to sleep. I don't take any RLS meds (or any other meds apart from the occasional aspirin). In recent months I have taken 20mgs of 'gentle iron' with vitamin C on every alternate morning.

Last night, after reading the experience of another poster on here, I decided to try two iron tablets before bed. Apart from getting up once for the toilet, I slept soundly all night (first time in ages), and no RLS. This could absolutely have been coincidence, but I'm going to keep it up for a month or so and record the outcome. So it may be worthwhile for you to trial a change to the gentle iron and try 2 tablets before bed , following Sue's advice re timing and complementary/conflicting vitamins and minerals. Best of luck.

[Hidden in reply to Tildabri]

Oh no, never take iron in the morning for RLS. We with RLS generally get symptoms in the evening because serum iron (not ferritin) drops dramatically at night in humans. The non-RLS world can handle that drop, but part of the RLS pathology is low brain iron stores so we rely VERY heavily on that free floating iron in our blood. And when it drops at night we get RLS. By taking a highly bioavailable form of iron at night you’re giving your RLS brain what it needs and it rewards you with sleep. Alas, this trick doesn’t seem to work so well for people who have down-regulated their already pathetic dopamine receptors with either DAs or opiates. Iron is the grease and glue that keeps people’s dopamine receptors chugging along. But it seems that all the iron in the world won’t help if you’ve shrunk your receptors, or are taking certain medications like SSRIs, or have certain comorbid illnesses like MS. Please keep us posted.

Another happy camper like yourself:

healthunlocked.com/user/Gil...

[pennygates in reply to Hidden]

Hi Salmen Lake,I think I've learned something today from your reply to Tildabri. I was told by my GP that taking iron tablets wouldn't give any quick results with RLS as it takes months to build up iron stores. Your reply suggests that taking at night would help with brain iron during the night within 60 to 90 minutes. My GP has never heard of brain iron (no surprise there!) I also didn't know that opioids affected the uptake of iron, or that receptors are so damaged that it may not work. I'm taking opioids for another condition, but also to help with augmentation from Pramipexole. I wondered if you can find out if your receptors have been damaged? Would you suspect that if RLS didn't improve with iron then this could be the reason?]

[Hidden in reply to pennygates]

Yes, at first I thought down- regulation was the territory of DAs, but time and experience has shown otherwise. Most recently is Marlayna. She didn’t want to go down the opiate or DA route. She began taking iron. Next time she came on here her iron was 200 and her doctor told her to stop taking it. She was happy and RLS was under control. As soon as she stopped the RLS came roaring back. She disregarded her doctor’s advice and kept taking the iron, and for a long time that’s all she needed. Recently she’s been on here and it sounds like about 6 months to a year ago she started an opiate for neck pain. Now it seems the RLS is no longer controlled by the iron aline and if she’s late taking a dose of the opiate she pays for it with RLS. This tells me that opiates will down-regulate the receptors among other cases. The iron still works for her it sounds like, but now she needs both. So I definitely think you should give the iron at night thing a go and it absolutely does have an immediate effect for many people on here

I think once you stop the opiate, or DA, your receptors will begin the slow crawl back to baseline. And eventually all you may need is iron and GABA and eventually just iron??? Read RKM7’s story, it’s very uplifting.

[pennygates in reply to Hidden]

Thank you

[Hidden in reply to Tildabri]

Hi again, I see you have RLS during the day as well. Theoretically you shouldn’t. Would you mind telling us what other medications you are taking? Some drugs that make RLS worse are statins, calcium channel blockers, certain blood pressure medications, antacids like Zantac and Omeprazole, HRT and a host of others.

[Tildabri in reply to Hidden]

Hi and thanks very much for your interest. I don't take any medications at all, other than the occasional aspirin for headache. I started taking the gentle iron in the mornings on consecutive days after reading another posters comments on here, but I have to say it hasn't had much effect. However, after a second go at taking 2 gentle iron tablets before bed, I've had another good night's rest with no RLS. It seems to make me sleep more soundly also, as on both nights I've only woken once to go to the toilet (on other nights it is at least twice and often more).

Unlike most people, from what I read, my RLS has always been worse during the day, accelerating towards the evening, in which I just have to pace about, which has really affected my social life, and even my ability to relax and watch tv or pursue a hobby. So this morning I have taken another 2 iron tablets as an experiment. Maybe this is a big no-no, as you say, but hopefully won't kill me. It would seem that I have a need for more iron during the day too. My iron and ferritin panels are normal, and my doctor doesn't want me to take any additional iron because there is haemachromatosis in my immediate family (though I have tested negative for this, he is still concerned). Best wishes to you!

[Hidden in reply to Tildabri]

Intereting! So very interesting! Maybe try one during the day and wait until you feel the RLS begin? The iron takes 45 to 60 minutes to begin to work. I’m glad you said you sleep more soundly. For many years I would tell people it knocked me out and was met with skepticism. Then Typicallygaslit mentioned that the glycine in bisglycinate can do that to people. I believe that is the cause of our improved sleep. So another form of iron may not have this extra benefit. Another thing to pay attention to is whether eating (anything) begins the RLS during the day. Another possible culprit is some type of nerve impingement (not muscular) in your spine or legs. Keep up the good work!!!

[Sher78]

Am going to try the 2 Fumarate before bed for the time being as I can't afford for my iron to drop any lower.

[Typicallygaslit]

I don’t know if you could have a similar reaction to the one I had, but I found that once my ferritin levels had risen to over 70, the iron supplement seemed to start to cause more RLS. I think there’s some evidence that the body may have trouble absorbing iron after a certain level has been reached. I took a break, then started on a lower dose, 14 mg ferrous fumarate, and am keeping fingers crossed basically. I don’t use bisglycinate as I’m over sensitive to glycine.

There is also the hormonal issue since lower or higher oestrogen levels can affect things. I’m finding that oestrogen may be causing more RLS. I say ‘may’ because it’s difficult to know why the RLS goes up or down.

[Sher78 in reply to Typicallygaslit]

Mine is nowhere near 70, not even half of that. Completely get what you're saying though as I did read something about that a while back when I was researching RLS & iron. I'm wondering myself if it's more to down the fact that I am full on in menopause now (not taking HRT or anything though) as that's the only thing that has changed as such (was going through the menopause before but not as 'full on' as I am now). GP wants me to take HRT but I am reluctant (due to other chronic health issues) and to be fair, the symptoms of menopause are basically the same as some of the symptoms from my comorbidities so I'm holding off for as long as I can.

[Typicallygaslit in reply to Sher78]

I think we talked before about this, in fact, I started using ferrous fumarate after speaking to you about it, and it’s working fine for me. However, I do wonder about my ability to metabolise iron. I know I have a gene for problems with iron and dopamine. Menopause is indeed tricky. I know what you mean about not being able to tell what symptoms are due to the chronic illness. I have found that HRT is helpful for a while but tolerance seems to kick in. I realised oestrogen is a stimulant and that it might interfere with my tolerance in general. I tried to do without for a while, but it didn’t seem entirely sensible. I’m now on a low dose gel that I apply when I get up. My sleep problems were better for a few years before menopause and I do wonder if it was due to lower oestrogen levels… it’s really hard to figure anything out. 🙄🥺

[Sher78 in reply to Typicallygaslit]

Glad the fumarate is working for you! I have lupus & Antiphospholipid (among other issues) & there is a lot of debate over using HRT in these cases, especially if you have a history of strokes or clots (which I do) so I am trying to hold off as long as I can. I know I can't retain iron which is believed to be due to loads of bowel surgery and gastric issues (according to Gastro & a couple of the GP's I've spoken to). Waiting on gynae for a hysterectomy (diagnosed with adenomyosis and an antiflexed/antiverted cervix) so if they agree to the hysterectomy I may very well have to go on HRT afterwards depending. Plus just been diagnosed with TMJ and also waiting on Neuro to see about the massive increase of headaches and why the base of my skull makes a grinding sound, like it's turning on glass (possibly due to connective tissue issues).Just feeling really sorry for myself at the moment as everything seems to be kicking off at once.

[Typicallygaslit in reply to Sher78]

I’m sorry you’re having a difficult time. It does feel like a lot of things creep up with menopause and it’s so hard to figure out what these symptoms mean and what depends on what. Dopamine levels tend to go down, which is also a big reason more problems with fatigue and RLS show up. The joints start making noises as well as osteoarthritis sets in. And so on.

I had a hysterectomy in 2019 but left the ovaries. It seemed like a good idea at the time, not least as the surgery botched my insides and I was in bad shape for a long time. I wouldn’t have wanted to deal with any radical dips in oestrogen while I was struggling to survive other ordeals. I hope you’ll have some luck with the neurology department, they are not always helpful unfortunately ;(.

[Sher78 in reply to Typicallygaslit]

Thank you for the lovely reply