Restless legs

[alemaprls]

I'm new on this forum

I started RLS when I reached the post menopausal stage, there is definitely a link with a lack of certain vitamins or iron which you do have at this stage. For the last couple of years I have taken paracetamol but now that doesn't work on its own so I have added a codeine tablet and that gets me to sleep. I have got so fed up with it the doctor has given me a blood test to check calcium levels, B12 and iron. Hope to get the results soon. Its almost every night now and its driving me crazy as I hate taking painkillers as its not really a pain is it.

[Madlegs1]

The codeine should be a great help- just use the lowest dose that will give you a reasonable nights sleep. And avoid all the various triggers that can set people off. ( see elsewhere by searching rls triggers)

Re bloods- its the serum ferritin that's important- get the actual figure , not an assurance that you are 'grand'. It should be around 75 - 100 for rls avoidance. But if triggers are at work , no amount of iron will help.

Good luck.

[involuntarydancer in reply to Madlegs1]

Again ... typing the same things at the same time ...

The force is strong in us !! (Yes, I have just binge-watched Star Wars ... just to please my son you understand)

[Dana0612 in reply to Madlegs1]

I have some Norco left from my bout of shingles in September. I'm going to give that a try tonight just to see if I can get a full nights sleep.

[involuntarydancer]

Hi there and welcome, sorry you have cause to be on here with this truly awful condition.

As you identify, there is a well documented link between low iron levels and Rls. It is advisable to get your serum ferritin levels checked (a blood test). Make sure the GP gives you the actual figure - they often simply advise that you are ‘normal’. For people with Rls, levels should optimally be over 100.

Also check out the lovely post above yours by Dave who is feeling ‘blooming marvelous’ (and who wouldn’t want to feel like that!) thanks to a twice daily dose of magnesium. Sadly, magnesium doesnt help everyone but it seems to be good for lots of people on this forum.

There are prescription medications you can get but they all bring some problems of their own and it is worth researching what people have to say about them (if your GP suggests that route) on this forum as they are often more knowledgeable than the medical profession about this poorly understood condition.

It sounds to me like you might benefit by raising your iron levels - if they turn out to be low - to see if that brings improvement (most people on here use a formula known as gentle iron - iron bisglycinate - which can be obtained online or in Holland and Barrett and other health food stores). maybe try magnesium and possibly some gentle stretching exercises (many recommendations on this forum and across the internet) before embarking on medication. Codeine is a useful treatment but better if you can get it without the paracetemol.

Best of luck ...

[alemaprls in reply to involuntarydancer]

thank you for that information, it was most helpful. I've made some notes of what you have said and I will be armed with it when I get my blood results. This forum is really good I'm glad I joined now, no-one else I know gets it so I've been feeling quite alone with the condition especially 1 am, 2 am and 3 am in the morning, still moving around while everyone else sleeps.

[Dana0612]

All of my bloodwork comes back with good levels of vitamins and iron. I've taken multi-vitamins, COQ10 for the cramps. No relief.

[Joolsg]

Hi Dana,

Read IDs reply. If your doctor says your levels of iron are good- ask for the exact serum ferritin figure. Good or normal is 12 or above for doctors!!!!

For RLS it must be far higher.

[Madlegs1 in reply to Joolsg]

Might there be a slight mixup there between hgb (should be 12+) and ferritin (should be 100 +)?😉

[Joolsg in reply to Madlegs1]

Yup, Mea Culpa, mea maxima culpa! Apparently, normal serum ferritin is anything above 40 for non RLS peeps. RLS peeps should be above 100 ideally.

[alemaprls in reply to Joolsg]

My result was 58.7 for ferritin so I'll ask the doctor for iron suppliments or buy some.

Thanks

[Joolsg in reply to alemaprls]

Get ferrous bisglycinate and take every other night ( apparently it works better and quicker).

You should definitely see an improvement in your RLS.

Let us know how you get on.

[alemaprls in reply to Joolsg]

Whats hgb stand for in the blood is that haemoglobin?

[Joolsg in reply to alemaprls]

Yes.

[Hidden]

I'm pretty certain that somehow the RLS feeling is transmitted along pain pathways. It's certainly very unpleasant even if not a pain. Hence eg codeine helps a bit. I use it too with paracetamol ( I think paracetamol is meant to enhance the effectiveness of codeine somehow ) but I try to keep to 30 mg once a night. It has a mildly beneficial effect which can give me 2 or if I'm lucky 3 hours sleep at a time at some point during the night. Because I have a peripheral neuropathy I have no problem having it prescribed even though my neuropathy isn't painful, just numb. I try to take great care though as it's very tempting to take more. For a start that would make me very bunged up!!

[alemaprls in reply to Hidden]

Hi Alison

I try so hard not to have to use Codeine as I know its addictive and causes constipation but when nothing else works and in the middle of the night I feel I have no choice. Im going to try vitamins first along with waiting for the blood results. What a bind!!!

[Hidden in reply to alemaprls]

Hi, I am the same. I think codeine is indispensable during the night. I try not to take a 2nd dose.

Many folk say that with care codeine and stronger opiates aren't addictive and many use Tramadol or Oxycontin or Methadone. I sort of don't dare though I may be denying myself things which are hugely beneficial. I really don't know how high the risk is.

There was recently a podcast from an interested neurologist giving the go ahead for drs to prescribe opiates for RLS if necessary but saying the risk wasn't that high but did exist.

It's the desperation you ( ie I ) feel during then night when the RLS is driving you mad which makes me make rules for myself in advance

[Twitcher]

Hi, it might also be worth checking Magnesium levels too - I absolutely believe there is a strong link and it is reported that more than 80% of women are deficient in it. If you look at my long thread on the solution currently working brilliantly for me which is a combo of B6, Magnesium, Zinc, Passion Flower and Cramp bark - called Migraine Stop (I know but it was discovered to work for RLS by accident!!) Good Luck and welcome.

[alemaprls in reply to Twitcher]

Hello, I have been out to Holland and Barrett and bought high dose Magnesium combining Calcium, and B12 tablets the highest again. So will try those, thanks. Yet another night of not much sleep last night.

[Hidden in reply to Twitcher]

Pregabalin effectiveness was found by accident too and then had to have the research carried out to prove it. I once in my work field called a renal physician about a dialysis patient who I thought had it ( because I recognised what she was describing because I had it ) once I'd discovered pregabalin for me ( before it stopped working! ) if I could prescribe it and in what dose ( doses need changed for dialysis patients ) and that physician already knew about it as it was mainstream in their world. Dialysis patients are apparently very prone to RLS and need tint doses of Pregabalin only.

A lot of things are discovered by accident and then turn out to be the answer. The same happened with Penicillin, it was a fluke situation in a lab when there was a fungus producing penicillin in the air - Most of you will know that I know.

So let's just hope our fluke happens soon!

[Twitcher]

I mine it’s magnesium chelate and vit b6 - don’t know if that makes a difference. 🙃

[Hidden]

Try Neupro patches.

[involuntarydancer in reply to Hidden]

Neupro patches are great for many Rls sufferers but it is important not to exceed a 3mg dose (indeed preferably 2mg) and once they cease to be effective at those doses, look for an alternative med or use something else to cover breakthrough symptoms. Otherwise there is a substantial danger they will cause augmentation of your existing symptoms and a considerable amount of misery.