Hello. Been lurking for a while and so very very grateful for all the info and shared experiences in this group.
Diagnosed with RLS last November. Had mild bouts during pregnancy and then had some when I had anaemia but then it disappeared. Last September I started to get a few weird symptoms. Bladder problems etc but it turned out to be RGS, followed by RLS. The RLS went from nought to ninety in a few days. I was waking up every night to rub cream or stretch my legs. Then the insomnia started. I can’t sleep even before the RLS kicks in.
It was through this group I read about the ferritin and got onto my doc. My regular iron readings were fine but my ferritin was 8. Been taking gentle iron since November (75mg + vitamin c on an empty stomach) and got my ferritin up to 37 after four months. Still a bit to go but things got so bad on the sleep side of things that I eventually gave in and asked for medication and was given Horizant. It took a few weeks to kick in but my sleep improved immediately and it isn’t perfect but my rls is much better but I’ve noticed the insomnia crawling back in. I always assumed the insomnia was caused by interrupted sleep but now I can’t sleep even if the rls is behaving.
At the recommendation of this group I found a book called the Mood Cure and I was taking L-Trytophan and it seemed to work but now it’s stopped. Will be experimenting with the 5htp and other supplements in the next few weeks but so very very tired.
My GP has been great and she recommended I take the Horizant until my ferritin levels increase but when I asked for sleeping tablets she gave me 5 ( as in five tablets)(Belsomra) so I know she doesn’t like giving out sleeping pills. I haven’t taken them yet as I’m hoping the supplements will help.
It’s just the insomnia is so soul destroying. Does anyone have any tips on daily practices ( other than naps) that might take the edge off your tiredness? I do love coffee and alcohol but haven’t really touched them since my insomnia got bad. I eat kind of healthily and tend to stay away from wheat. I’m mid forties and I’ve got three kids and a full time job.
I know people have found ways to manage their insomnia (sort of) or just become resigned to it. I’ve read so many insomnia blogs that my head nearly exploded and I did try the bedroom etiquette routine and I get it but I think RLS insomnia isn’t your normal type. It did cause me anxiety in the beginning but now I’m just fed up with it and wrecked.
Thank you all for sharing your knowledge.
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Redeyed
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From your history it sounds like iron deficiency is at the root of your RLS.Have you considered iron infusion. If not ,you could discuss with your doctor.
Magnesium can help for calming, but must be taken 3 hrs apart from Horizant.
Melatonin ( 0.3mg) is good. I use the liquid form to be able to get such a small dose.
Thanks Madlegs, I’ll ask my doc about infusions next time but I know she’s keen on me staying with the gentle iron.
The hard part was for the whole month I started Horizant I actually slept better and there was two weeks of fairly solid sleep and now I see it all slipping away again.
A quick question if you don’t mind, magnesium ( my levels are fine) but what dosage do you recommend ? I’ve powder type and capsules.
The - ates are best, I use mg citrate 100mg, but you can go to to 400. I take it after evening meal.Best to Google whatever type you have, to check best dose.
Too much can have a laxative effect, so go carefully.
The gentle iron approach is good ,but takes a long time to get any effect.
No harm looking at your diet as well. Plenty of recent posts on that in the last week.
Thank you, thank you. Slept marginally better last night and didn’t have the panicky episodes so maybe the magnesium really helped. Just took me ages to get to sleep. Am watching my diet as I think wheat is very inflammatory for me buti don’t think it triggers my rls. Am currently off coffee and alcohol and taking very little dairy. Just been reading posts about salt and sugar so I guess their next. Thank you for being there, yesterday was hard but I’m feeling a little more hopeful today.
Hi, I agree with Madlegs about the iron. Your ferritin was orginally not only low for somebody with RLS is was below normal for anybody!
Both pregnancy and anaemia can deplete ferritin and even though the iron defiociency anaemia was corrected you may still have iron deficiency.
I am surprised that after taking iron for 4 months it is still so low. This does suggest that you may have some other issue in that either it is being lost excessively or you aren't absorbing it properly.
If the latter it would be good to identify why this is the case. Otherwise, as Madlegs says, you would be better to get an IV infusion if you can. This will by-pass the absoprtion problem.
I wonder if you are taking any antacid regularly, or if you have any gaastrointestinal problem?
I do appreciate your problem with insomnia. It has been more or less lifelong problem for me. I can either get to sleep OK but wake up early or can't get to sleep for a long while.
When my RLS was at its worst, I hardly slept at all, but when it's under control, I still have problems. I wonder then, if like me, your insomnia is not just due to RLS, but some other issue.
I find it a little strange but theoretically RLS consists of not just the sensori-motor symptoms but hyperarousal as well, i.e. being excessively alert. With RLS then, it's not just the symptoms preventing you sleeping, its' the hyperarousal. What's strange is that according to this you shouldn't feel drowsy during the day, even if sleep at night has been poor.
If you do feel drowsy during the day, it does suggest that the insomnia is more than RLS.
I think it's a good idea to follow sleep hygiene guidelines even if it doesn't seem to be working.
I've found particularly exposure to light and dark is a big factor. When I worked I used to use a SADS lamp as my work was always indoors. It's important to be exposed to natural light duing the day for at least a couple of hours.
It's also important to be in the dark in the evening and at night. Since the advent of electrical lighting since we can now be in light during the evening and night which is really not a good thing. Even worse has been the advent of TV and more recently backlit devices. The display on backlit devices emits full spectrum light. Therefore it's not good to watch TV within 2 hours of attempting to sleep, nor is it good to use laptops, tablets, smartphones etc, unless the display can be adjusted to filter out blue light.
Light inhibits the secretion of melatonin from the pineal gland which normally promotes sleep.
The importance of light was demonstrated in the sixties and seventies, e.g. when exprimenters spent long periods of time in the dark and others studied rats in environments where they controlled the light completely. They found they could completely change when the rats slept or woke, by changing the time when the light was on or off.
It was once thought that sleep patterns in humans are monophasic, i.e. we only sleep once a day. There is evidence that it's bi-phasic, two times a day. When nights are short the two sleep cycles merge and when nights are long they can separate. I sometimes find I sleep in two cycles sleep wake sleep,
Sorry for going on about it.
I am retired now and at time I wouldn't say I resigned myself to not sleeping, but I came to accept it and even did things to make positive use of the extra waking time it gives me. I even did this when I was suffering augmentation. Due to this I couldn't nap during the day, it was impossible.
Sorry to hear that. I had the insomnia before the Horizant so I don’t think it’s connected. I do think the Horizant helped me sleep when I started taking it but the effect has worn off. It didn’t clear all of my symptoms though and there are a couple of things that feel like side effects but it’s helped my rls. I hope you found something that works for you.
Thank you so for that information and your insight. Thinking about it now and after what you just said I think the insomnia is a separate problem, bright in by the rls but it’s not hyperarousal. I’ve got a a good bedtime routine but it can take hours to get to sleep. I’ve to be up at 6:40 so misty days is really love to just sleep more. Have invested in lamps for the house do we don’t have the bright lights on at night. For some reason I’vea funny feeling it might be hormonal, just a gut feeling so I’ll look into that. I might have suffered this even if the rls hasn’t raised its ugly headache.
As for my iron absorption, since i gave up wheat I’ve had no stomach or bowl problems. Don’t know myself with the regularity but I’m going to look into ways absorption might be affected. Thank you.
If cutting out wheat helps you might have a gluten sensitivity which would cause inflammation. Chemicals from inflammation can get into your system.
Inflammation does interfere with iron metabolism.
I recently discovered to prevent such leakage and get the bowel to heal there are some good nutrients that can help. Pomegranate is the best source. However the nutrients need to be converted to urolithin and this is done by favourable bacteria in the gut. Hence you need to make sure you have the bacteria as well.
Someone mentioned pomegranate so I’ll definitely try that. Gut health is so important. I’ve been making bone broth for years and fermenting but while my family eat well sometimes I forget to. The tiredness kind of clouds my judgment. Thank you.
I live in Australia and use cannabis oil successfully to help me get better sleep. Although it works well - it takes 1 - 2 hours to kick in. However I do wake up at night and on rare occasions I get whole body RLS and simply cannot get back to sleep. My doctor is sending me a vaporiser with cannabis buds because he says it is instant relief and works really well in helping to get your to sleep fast. This is legal and approved. I will let you know how I go when I try it.
No hope of anything like that where I am but looking forward to hearing if it works for you. I can get the standard CBD oil but I’ve yet to notice any benefits. Will try again. Thank you
Hi, during the day I find the best way to deal with the tiredness during the day is to keep moving, walking, housework, socialising. As soon as you sit and read or watch something on TV it's very easy to nap (although I now give in to naps when they seem inevitable and let myself have 40 minutes - set your phone alarm). For me the single most important thing for a better night sleep seems to be a moderate walk or exercise every day - up to an hour, reasonably brisk, and it will have the benefit of energising you for a bit during the day as well. I forgot to do mine for a few days last week and sleep deteriorated quite quickly, but recovered as quickly. Walking is such a huge benefit for your circulation, digestion, lymphatic system, bone density, core strength and general physical and mental heath that it's worth doing anyway. Other than that I think magnesium helps ... I just take Boots supplements which are magnesium oxide I believe, but am going to try the magnesium citrate recommended by others. I'm also suspicious of glutamate in MSG and other sources but the effect seems a bit inconsistent so I'm not convinced.
Thank you so much. I do infrequent exercise so I’m definitely going to get started on a better routine. I’ve always been terrified to take naps as I thought it might make things worse but I might start taking short ones when I can, just to take the edge off the exhaustion. Thank you.
Hi Redeye, it sounds like you have a genetic predisposition to RLS, as do we all. Then along came certain environmental triggers with the latest being anemia. Btw, it is not at all uncommon for anemic people to have insomnia. Anyways, then you start peeking around here and have your doctor verify that you are anemic and begin the iron regimen which alleviated your RLS pretty quick it sounds and eventually your anemia (55 is great btw), but not the insomnia. From your post it sounds like the Horizant was prescribed for insomnia, not RLS and that it actually helped the insomnia for a short while. I could be reading your post wrong, but that is my interpretation.
As you know this is an older post, but it helps in answering yesterday’s post about whether to continue the horizant as is or take a holiday. I guess it depends on why you’ve continued on it all these months when it stopped helping your insomnia after about two weeks?
Sleep is a strange and delicate thing, at least for me. One night of what I call “real” insomnia can lead to months of imposter insomnia. This is where I become like a cat chasing it’s own tail. In psycho babble it is called an anxiety disorder, not a sleep disorder. Michael Jackson had a fear of not sleeping and hence an anxiety disorder, but was treated like he had a sleep disorder with ever stronger sleeping pills at night. He needed to be treated during the day for anxiety. Like Michael and me, is this you? Lastly, it sounds like the RLS creeps in from time to time still? Is it on the nights you don’t take the iron? Not sure why you switched to every other when you were doing fine with every night.
Sorry just saw this now. Thankfully my insomnia was linked to hormones so once I started on HRT that all improved. It’s not perfect but it is improved. The reason for staying with the Horizant ( given for RLS) is that maybe it’s helping a little and I’ve this fear that if I wean off of it my RLS will be unbearable and then I don’t know where to go after that.
I’m feeling a little calmer now and a lot more open to the idea of giving Horizant a break.
Like all of us here I’ve had some horrible months and that cements a baseline that on you really don’t want to go back to. The insomnia with RLS was heart breaking for me ( full time work and three school going children) and I’m amazed I managed to keep functioning at all.
I’ve learned a lot about myself since then and I hope I’m in a better space mentally to deal with it all. That’s why this group is so wonderful, keeping it sane. My first Google searches all ended horribly and I got very scared. The fear then starts to permeate everything and every health issue becomes a bogeyman hiding in your closet.
Like the fear of not sleeping. It still creeps in. And one bad night can send my anxiety sky high.
It’sa balancing act really, managing it all and then just getting on with life.
For me my health is like a big tangled ball of string. I’m slowly unraveling it and sometimes it’s going so well and then I hit another knot.
Thank you always for your advice. There are a few Hiddens on here but I recognise you all the time💚
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