Adding good news

[Marlayna]

Hi all. I thought I would pop in and share some good news. I have refused to take all the drugs that have been offered to me. But even experimentation with lower levels of hydrocodone and OxyContin have been uncomfortable enough that I refused to go in the opioid direction. What has worked for me and continues to work for me is taking chelated iron and not eating sugar. I have a very severe case of RLS and it’s in my arms and shoulders as well as my legs.Taking 18 mg iron around 7 PM at night has done about 95% of the trick for me. I hope this helps someone out there as I found this information on the site and it has helped me tremendously.

[Joolsg]

That's brilliant Marlayna. Raising iron levels helps 50% of RLS sufferers so it should always be the first step before starting any meds. Sleep well.

[LotteM]

That is wonderful news indeed, Marlayna. Thank you for sharing. It once again underscores that the first step in treating RLS (apart from moving, but we can't help that) is iron. Assess your iron levels and start taking it. For others, here is the relevant paper outlining it all : sciencedirect.com/science/a...

[MumofSam]

I’m so pleased you’ve found something that’s working for you, and thank you for sharing.

[RLSofManyYears]

Glad to hear this 😀

[Gypsy-AU]

I am so glad to hear that you found something that works for you. We suffer with this condition so much and to hear that someone found some relief is so encouraging to me. I am anemic and at the moment take over the counter FerrogradC iron every second day. So far my RSL is … bearable, but it is getting worse slowly, as I am getting older I think. And I notice that when I eat (more than I should :)) sugar it gets a whole lot worse. My RLS is also very closely connected to how much stress I have in my life, which I try to keep as low as possible. I am in a high pressure job so that doesn’t work out for me all the time. Next on my to do list is to get myself informed more on the correct iron supplements to take for RLS. Thank you for sharing your success.

[Marlayna in reply to Gypsy-AU]

My ferritin was 7 when I started and now at 240. No wonder I was crawling out of skin!

[Gypsy-AU in reply to Marlayna]

Oh wow. Did you RLS improve? If so, by how much?

[Hidden in reply to Gypsy-AU]

Marla indicated that nightly iron gives her 95% relief.

[Gypsy-AU in reply to Hidden]

I take mine on an empty stomach in the morning but I will definitely try taking it at night as well and see how I go. Thank you.

[Hidden in reply to Gypsy-AU]

Yes it’s a must. If you’re like me it will relieve the RLS in one hour, but only for that night

[Gypsy-AU in reply to Hidden]

Any relief is welcome. Ill let you know how I go.

[Hidden in reply to Gypsy-AU]

Yes, please let us know how it goes...for better or worse.

[Davidbaldbloke]

Do you have a link to where I could buy this on line? Thanks in advance.

[Marlayna in reply to Davidbaldbloke]

I don’t. But if you Google iron, make sure that it’s chelated and 18 mg to start. I’d buy mine at Whole Foods, our local health food store.

[Runedrun26 in reply to Marlayna]

What time do you take your iron.

[SimonMorriss]

Amazing news. Well done

[Jumpey]

Great news.Long may it continue. X

[BBMBRB]

I've just started taking iron as I agree I do not want to go down meds route. I take codydramol for pain and I do notice that if I don't need to take them then my legs start so I always take 2 late in the evening.

[DicCarlson]

Excellent! I too found iron deficiency was the chief cause of my RLS. At no time did any of the docs offer this to me. They wanted me on DAs and said it was the only choice. I discovered the connection on the Johns Hopkins website and confirmed it here.

[Marlayna in reply to DicCarlson]

You are the one who wrote me about iron and you have changed my life. My ferritin went from 7 to 240. I can never thank you enough for mentioning it to me, as I haven’t seen a single doctor with any advice outside of drugs. 🙏

[DicCarlson in reply to Marlayna]

Great news! I always wonder why are people iron deficient - and for me why was I, but not anymore? I think there is a gut absorption connection.

[NonnieJ in reply to DicCarlson]

My ferritin was also down to 7 last December and at last I was given an infusion. (I have Coeliac disease and can't absorb iron.)After 6 months I asked for another test as it had dropped to 91. Incidentally I had a good Ferritin score a few weeks after the infusion.

My doctor was happy with 91 and wasn't interested in letting me have an infusion.

By now it must have fallen again and I feel a beginning of a return of my RLS.

Do you know the lowest it should be allowed to fall to for RLS sufferers.

I have managed after three weeks of waiting to get a doctors telephone appointment tomorrow.

Thank you in advance.

Nonnie.

[DicCarlson in reply to NonnieJ]

I had raging RLS with a Ferritin level of 49 - raised it to 105 in 3 months with oral supplements, Ferrous Bisglycinate Chelate. Johns Hopkins says "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." More here...

hopkinsmedicine.org/neurolo...

[NonnieJ in reply to DicCarlson]

Thank you so much. The trouble is that with having Coeliac disease , oral medications aren't particularly helpful, as I have trouble with absorption.That was an excellent link you sent me, and thank you for it.

I had the figure of 75 in my head and as I have a telephone call with my doctor tomorrow I will ask for another test and if the result is lower than 75, I may be able to persuade her that an infusion is the right step to take. Thank you so much for taking the time to reply.

Kind regards

[Hidden in reply to NonnieJ]

Hi Nonnie, if you search PatchMd & Iron on the internet you will see these wonderful (and I mean wonderful) transdermal iron patches. I put one on about an hour or two before bed and relieves the RLS for the night. It enters your system slowly over an 8 hour period. I believe they come in 15, 45 and even 65 mg iron patches that also contain vitamin C & A and one or two other vitamins. I use the 45mg patch and try to take it off as soon as possible. I have no desire to raise my bodily iron levels beyond where they are now - 75ish. No point to raising your bodily iron stores when our brains are anemic not really our bodies. Unlike oral ferrous bisglycinate (called Gentle Iron and is the only form of iron worth taking) your stomach does not have to be empty for the patches to be effective. I like the oral iron because it really packs a punch and relieves the RLS completely within one hour. The patch seems oh so slow but still effective and really covers you for the whole night. Of course ask your doctor about it first. I am one of a handful of people on here that get immediate relief of RLS by taking ferrous bisglycinate at night on an empty stomach. Only lasts one night and must be taken every night that I have RLS symptoms, which is mostly every night these days. If your doctor says ok I would give the patches a go before the infusion which even if it helps it could take weeks and weeks for any improvement to show. Good luck!!!

[NonnieJ in reply to Hidden]

Thank you very much. The doctor is testing me now and referring if necessary to Haematologist who may or may not be willing to give me an infusion.When I was due for an op three years ago they said I needed an infusion prior to op as my readings were too low. And that was not because of RLS , so there is obviously a problem.

The patches sound really good and I will definitely consider them if I don't get the infusion.

Thank you again.

[WideBody]

Excellent work and thanks for reporting. This probably the first and best place to start. I will start taking my iron a little earlier before bed.

[Merny5]

Such great news Marlayna! 👏🏼👏🏼Best of luck for continued relief!

[Runedrun26]

Where do Ivey this iron from.

[Marlayna in reply to Runedrun26]

I buy mine from our local health food store.

[ruthgnatt]

glad to hear your good news!

[joker826]

Happy to hear your story and getting a good nights sleep.

[ESRDRLS]

Does anyone experience abdominal rls. I do. But some drs believe if you don’t get it in your legs and abdomen the abdomen symtoms are not rls.

[Marlayna in reply to ESRDRLS]

I don’t get it in my abdomen but I have it in all four limbs. It was really bad in my shoulders and I could only find relief by pushing all my weight down on one and then shifting back-and-forth all night.

[Hidden]

Hi Marlayna, maybe try taking 25mg of the iron and about 45minutes before bed and you might get to 100% relief. Once again, I don’t think people realize that while you got your iron level to 240 you STILL CANNOT STOP taking that nightly iron. I truly believe you could get your iron levels up to 700 and you will still need that nightly iron. In addition to cutting out sugar, try not to eat late or large meals in evening. That nightly dose of ferrous bisglycinate doesn’t provide everyone with nightly relief, but at this point, there are enough of us that it’s worth a try by most sufferers. Stomach should be empty too when taking of course.

[Marlayna in reply to Hidden]

Thank you. I have given up nightly meals and don’t eat after 3 or 4 pm. That definitely helps! Incidentally, when I was taking iron that is not calculated I did not have the same success. Also at one point I was taking too much iron which caused a lot of other issues. Dropping it down to where I am now is working, but I’m sure I could go up a bit in dosage as you suggest and still be OK. I have noticed if I forget two days in a row to take it, I will experience breakthrough RLS. For me at least, iron has been a magic bullet.

[Hidden in reply to Marlayna]

Ya know, when I was in my 40s I started taking melatonin and that’s when my mild sporadic RLS became the devil incarnate. It was in every part of my body and is when I read about the Gentle Iron. Finally I made the connection and stopped the melatonin. My RLS went quiet again for a decade then it started to gradually worsen. It’s only been the last several years that iron is a nightly routine. Why don’t you try only taking the iron in evenings when you actually feel the RLS coming on. I love the occasional night when I don’t have RLS and don’t have to take the iron.

[Hidden in reply to Marlayna]

I know this is an older post, but I think it’s important to note that the form AND timing of taking iron is important. Taking iron in the morning does nothing for my night time RLS. Nor does iron in the form of ferrous sulfate do anything. Like you said, it has to be chelated.

[Boldgirl45]

Just to be clear then, you had your ferritin checked, then started on the chelated iron. Can i ask which brand? Also, does it affect your stomach at all? Thanks!

[Hidden]

Any updates for us???