I am 55y/o woman from Sydney, Australia and have had RLS for as long as I can remember. To be brutally honest, there was a period in my 30’s when the RLS was so bad I could hardly function at work because of the sleep deprivation and I truly considered amputation. Doctors were of no help. They must’ve considered me a mental case when I tried to describe the feeling in my legs at night. The only reason I did not look into cutting my damn legs off in greater detail was because in my 40’s I had a miraculous reprieve from this terrible affliction for close to 10 years. I can’t tell you why I had the reprieve because I have no idea. It may be because I stopped smoking around that time, I don’t know. Regardless, that reprieve is expiring unfortunately. Over the last few years the RLS has been coming back. It’s gradual, but no mistaking that horrible feeling in my legs when I am trying to go to sleep. I have also heard that it can get worse with age so maybe that’s is what’s happening to me, I don’t know but it doesn’t matter. What matters is that it’s coming back and I need to be ready to deal with it before it gets on top of me. I am not ready for medication just yet but if I get to that stage I will be coming here first and talking to you people before I go to see a doctor. Although these days at least most doctors have heard about RLS (I always mention RLS when I see a new doctor because codein sets my RLS like crazy), there is no substitute for experience, and people here have that. I have been following this site for a while now because it gives me hope that there are people I can turn to for help if this damn thing becomes unbearable again and I truly want to thank you for being here for people like me. Although I don’t contribute I am in the background and I read most posts, always with gratitude for the person posting. So thank you all.
By the way, I have been getting some relief from my RLS when I’m trying to fall asleep by turning on my stomach, moving towards the foot of my bed and letting my legs hang off the bed from my knees to my feet (while lying on my stomach). Maybe because it’s hyper expanding the back of my legs it’s helping mask the RLS, not sure. Anyway I am testing this method of sleeping so I will report my results. If anyone had tried or now tries this way of sleeping please let us know how it goes.
Regards,
Suzana
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Gypsy-AU
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Thanks for you reply Manerva. I have been anemic for years and take over the counter iron supplement for that. I am also vit D deficient so take Calcium & Vit D (combined) tablets daily. I also take vit B complex, fish oil and magnesium (at night).
I don’t smoke, am fit(ish), avoid processed food and sugar as much as possible (chocolate wins more often than it should, though), and have 3 coffees a day. I like my coffee. I don’t drink alcohol at all. I used alcohol to help me fall asleep for years but that turned into a problem itself so stopped drinking about 14 years ago.
I have ADHD and take Strattera and Allegron for that. The Allegron helps a little with falling asleep quicker at night so I am grateful for that.
I try to lead as “clean” a life as I possibly can so that I don’t aggravate the RLS more. The aim, of course, is to stave off medication for as long as possible.
It does sound as if you're doing more or less all you can at the moment.
It is possible that you also have some food intolerance that could be casusing inflammation but might not actually cause symptoms. You can try keeping a food diary, but the effects of this are longer term. In whcih case it's a matter of eliminating things from your diet to see if it has any effect.althoguh it may take weeks to notice any effect.
Oral iron is difficult to absorb, a lot of what you take actually passes straight through!
Things that can help more to be absorbed are -
Take it 30 mins before or 3 hours after eating
Take vitamin C or drink orange at the same time
Do NOT take magnesium at the same time
Only take it once in the day and only every alternate day, NOT daily.
If you know why you suffer anaemia that's fine, but if you don't, then the cause needs to be investigated.
I hope you can manage to avoid the medications as long as possible.
I have never had the anemia investigated. On the face of it, there is no reason for me to be anemic, but I am. Red Cross rejected me when I went to donate blood that’s how I found out that I was anemic. That is the first time anyone used the word “anemic”. I have regular blood tests but no doctor ever said you are anemic and should take iron supplements. I think I will go back to my doctor and look into it a little deeper.
I was taking the iron tablets every day but than few months ago I read on this site someone’s comment (I think it was yours 😊) that it is better to take them every second day so that’s what I am doing.
As for food allergies, I agree. Although I don’t have any apparent symptoms, I I think I have some allergies, but not sure to what. Couple of days ago I had pizza for dinner, which is not something I do very often. That evening I was sitting in bed trying to read a book but couldn’t sit still because my legs were driving me crazy. Never made that connection between pizza and RLS before but now I’ll see if it happens next time I eat pizza.
Yes, I will try to keep a food diary and see what makes the RLS worse. Thank you for the suggestion.
Thanks... I'll start that TOMORROW. Been taking iron and C on an empty stomach. Then a half hour or so later my magnesium with breakfast. Darn. Is it decreasing the amount of iron I absorb? Or decreasing the magnesium? Or???
Wow, Manerva. Not sure why none of my naturopath and functional drs have ever said this.I take more supplements than this, but I don't want to overwhelm you. I just googled and now I see fiber supplements need to be taken separately too. How does this sound:
8:30am Fiber (acacia seneca)
9:30 am Bioshield (contains green tea), NAC, glutathione
10am magnesium threonate (for my brain!)
1pm Lunch (I intermittent fast, so no breakfast) B complex, D, glutamine, quercitin, milk thistle, etc
5pm acacia seneca
6 pm Dinner magnesium glycinate
9 pm iron & C (might try valerian or melatonin to see if they help. Ok with iron?)
This is getting complicated. If you can simplify it or re-arrange it, have at it!
Yes. That's why I wrote I might try it. My naturo wanted me on it. Took it for years. Not sure if it made my RLS worse or not. I won't start it yet, but maybe later will try again and see if it has negative effects on me. It does have anti-inflammatory properties so it's a real bummer if I/we can't take it. Thanks again!
I have to sleep on my stomach too but with my legs on a heat pad , this is the only way i can fall asleep ...you arent alone there which i find comforting x
I've noticed that it definitely helps me to sleep on my stomach. But only when RLS is not severe. If so, I've a cold shower on my legs, then I go to bed with wet legs and leave them up, right angle for a while, like 10 min, to have all the blood coming down. It does help to fall asleep again. In that position you can also massage them to get the blood down....
Hi Gypsy, I have had RLS for over 35 years so have learned a lot about it. Manerva's comments below are right on target and to what she has said I would also recommend that you join RLS.org. They are the best! An annual membership only costs $35 and all their contributing doctors are specialists in RLS. I would also like to add that because of their website I discovered that SIBO (small intestine bacterial overgrowth ) is at the root of my RLS). This can be diagnosed with a breath test. I am on medication for it and sharply curtail carbs and sugar from my diet and this has helped enormously. Last night, in spite of the strict diet, I had intense creepy crawlies in my left leg so tried stretching the leg and the RLS completely disappeared for the night. You can google "stretching exercises for RLS" and try some of them. Hope these suggestions help!!
Thank you for the suggestion to join RLS.org. I will look into it. I will ask my doctor about the SIBO test too.
BTW, my left leg is always worse than the right, I and I’d love to know why. I guess I should be grateful for the times when it’s not both legs at the same time 😁
I also get marginal relief by sleeping on my stomach. My legs are not over the edge of the bed though but rather want to straight and one is pulled up slightly. It's weird isn't it?
Yes, it is strange. I discovered that sleeping like that helps a bit only recently. I wish I knew about it earlier. I’ll try anything to fall asleep ... accept the soap bar at the end of the bed, won’t try that 😂
I'm another who found lying on my stomach with leg (usually my left) pressing into the mattress has helped. I haven't used that position for a while, mainly as I've had a lot of relief from taking iron tablets and also take co-codamol at night. However I keep a tubular elastic support bandage on the bedside table and put that on at the first sign of twinges as I settle down or if I waken in the night. It might be the pressing that previously helped rather than the position, since the bandage is often effective in calming things down.
The tubular bandage I use is for a large knee (I have skinny legs!) and is a cheap one without much compression, just enough to make me feel its presence. If anyone is considering using a support bandage in bed, please read up on it first as it's not generally advised.
I am trying to picture the tubular elastic support bandage you are using. Is it the one some people use to support their sore knee, like it goes under the knee cap and supports the knee cap? Also, where do you put it on the leg? Thank you.
Apologies Gypsy-AU, I didn't see this at the time. The tubular bandage is simply that - a long tube of elasticated fabric that I pull on over my foot and draw it up in a single layer until it stretches from ankle to mid thigh. I deliberately use one which is not very tight on my leg, just enough to let me know it's there. I woke at 3am after maybe 3 hours sleep last night with the twinges starting, put on the stocking without getting up to walk about, and within a few minutes all was settling down again.
The stocking is a little stand by, my main relief from RLS comes from co-codamol at night and taking gentle iron. Finding out about the iron on here and starting on it about 5 months ago made a major difference for me.
Hi Suzana, I used to live in Sydney. Years ago, I had friends at Royal Prince Alfred Hospital. One night I was chatting with an asthma research scientist MD from RPA and U of S about RLS. She said that on intake, all of her asthma patients are tested for "iron stores" and those with low results usually have(or will have) RLS. Her clinic then treats the iron problem along with asthma issues. I don't know her name, but suggest that you try RPA asthma clinic and U of S asthma clinic. Research hospitals/univ. are always the best places to go for stuff like this. Scientists like a challenge and something "new". Also, as Manerva said, plain old oral iron probably will not work. I use the stomach sleeping trick, just like you describe. Give my love to Sydney! Ah, the nurse from Wollongong
Before I found medication for it, I used to go to sleep lying on my stomach with my knees bent and my feet up in the air. I'd pull the sheet or blanket tight to hold them in that position until I fell asleep. I tried doing it as you describe, with my feet hanging over the edge of the bed, but this worked better for me.
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