Hello from newbie

[Lovejoy100]

Hi all, fellow RLS sufferer here, for about the last 7-8 years. Been to a couple of GPs who were pretty unsympathetic TBH so I gave up on them and, after much experimentation, I now ‘manage’ the 3-6 bouts a night with magnesium and potassium tablets (as each bout comes on). Doesn’t matter what strength the magnesium is, it doesn’t seem to have any effect after a couple of hours. For some reason the mag/pot combo only stops the twitching if I distract my brain with 30 minutes of Pyramid Solitaire Saga on the iPad, it seems to require enough concentration for my brain to ease the RLS. Then there’s the fun bit of trying to get back to sleep! I average about 6 hours a night in 3-4 sessions. Gave up alcohol two months ago and moving onto low carb tomorrow to see if that helps - but I am sure that mine is menopause related - anyone else think that? Sorry for the long post and look forward to reading your experiences.

[Hidden]

Hi Lovejoy and welcome to this forum. I hope you find.it useful.

Sorry to hear your GPs haven't neen sympathetic. I have to say that may have been a blessing in some ways. Often you find that GPs who are willing to do something are so inept when it comes to RLS that they do more harm than good!

It's possible that menopause may be a factor in your RLS, but it may not be the most significant thing.

I wonder if your GPs have done absolutely nothing, no blood tests, no advice no prescription?

Your idea of taking magnesium is, in principle, not a bad idea. Certainly a magnesium deficiency can be a factor in RLS. Potassium CAN be a favtor, but it's unusual unless you have kidney problems.

I have to say, the relief you feel you get from taking magnesium and potassium and then distracting yourself is probably more to do with the solitaire than the minerals!

If you take a magnesium.tablet, this may he helpful in preventing RLS, (if you have a deficiency), but not so helpful if you wait until symptoms start and then taking it.

It would be more effective to use a magnedium cream, gel or oil ribbed into your legs than take a tablet.

In any event your situation doesn't sound satisfactory at all and yoyr RLS is out of control.

[Lovejoy100 in reply to Hidden]

Hi Manerva, thanks so much for your reply - and it is lovely to know I’m not alone in trying to cope with this horrible thing.

I don’t even remember how I got into taking potassium, think it was a herbalist but I’ve been doing it for years - these things become a bit habit forming and it’s scary to think about trying something else! I do also have mag oil and cream and use those too. If I take the tablets or apply oil before I go to bed I still get an attack 2-3 hours later, so I just wait until the tingling starts before I take/apply anything.

You’re right of course, I need to go and see another GP and hopefully get a more sympathetic hearing as well as all the tests, but I don’t want to take chemicals and fear that’s what they will offer.

But I do need to consult the GP, as the frequency is increasing and this can’t keep going on. I did notice others talking about venous insufficiency, which I have, so there’s a fair bit of health improvements to tackle!

All the best, Lx

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Part 2!

If your GPs haven't done anything at all, then I'll try to give an overview of what they should have done, plus what you can do yourself.

Blood tests : ask a GP for tests for iron deficiency, i.e. serum iron, transferrin, ferritin and haemoglobin. This is the first thing a dr should do as iron deficiency is a major factor in RLS. More on this later.

It might also help to have blood tests for vitamin B12 and vitamin D.

If there's any suspicion of thyroid problems, kidney problems or diabetes, have tests for these.

Get the results of the tests, i.e. the actual numbers. If you're told your results are "OK" or " normal", do not accept this, get the numbers. This is particularly important as regards ferritin Normal ferritin is anything above 15ug/L but really, for someone with RLS anything below 75ug/L is insufficient. This is even if there is no anaemia. The iron deficiency in RLS is in the brain, not blood.

The second thing anybody with RLS should consider is whether there are any aggravating factors or triggers making symptoms worse.

This could be something you regularly ingest. There are many medications that make RLS worse and there are things you eat or drink that can make it worse.

Avoiding these can help relieve symptoms.

Better to say what medications you take rather than write out the whole list here.

Food and drink.

Alcohol amd added sugar can trigger RLS the same day. Sugar taken regularly and refined carbohydrates in food can cause RLS longer term.

It may be that you are gluten or lactose intolerant and avoiding these could help. These can cause chronic inflammation which is a factor in RLS. Even in the absence of these intolerances an anti-inflammatory diet can help.

I suggest you carry on with the magnesium but could add a cream or gel.

I suggest you start taking a non-prescription iron supplement. You don't need a doctor for this. Buy a "gentle" iron. This will be less upsetting on your gut.

For an iron supplement to be effective, the aim is to raise your ferritin to at least 100ug/L, that's why you need the blood test. To do this, it's more effective to take the iron every OTHER day. Also take it on an empty stomach along with a glass of orange.

There's also no harm inntaking vitamins B12 and D.

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Part 3 - marathon!

These measures may take time to have any effect e.g. months.

In the meantime if you're really strugging with your RLS and it sounds as if you are then there are medications that if taken regularly will not just relieve your symptoms once they start they can prevent them happening in the first place.

If this is something you want to consider, no GP has any excuse for not prescribing an RLS medication. Do all the other things anyway.

Keep a journal of what symptoms you're suffering and record how much sleep you have and read it out to them.

There are two classes of medicines your GP can prescribe. Dopamine agonists.or gabapentinoids.

I strongly advise you to first request a gabapentinoid NOT the other. I'll explain the reason for this another time.

If you have any problem with your GP, refer them to the NICE guidelines for the management of RLS. Your doctor will be familiar with NICE even if not with these particular guidelines.It would be good to familiarise yourself with what the guidelines say.

here's a link

cks.nice.org.uk/restless-le...

[Lovejoy100 in reply to Hidden]

Wow Manerva, you are amazing! Thank you so much for all the time taken to help me out!

I'm lucky in that I don't take any prescribed medication but also tend to reach for herbal supplements for various issues (which do help) - so I'll get some iron today, and register with a surgery (if I can).

I always put off going to the GP, can prevaricate for England and find any excuse not to go, but I've learned so much through your posts, and I feel much more equipped to go and see them now - forearmed is forewarned, and that all :).

Thank you again! xx

[DicCarlson]

You're going down the right road! Mg and Potassium do seem to help with RLS and leg cramps. I don't know how but my RLS is related to leg cramps. I take 1/4 tsp sea salt with 1/4 tsp cream of tartar (for potassium) most nights. I also use Mg oil on occasion. The big change for me was the iron supplements - ferrous bisglycinate chelate - eliminated the severe RLS within a week.

[Lovejoy100 in reply to DicCarlson]

Thanks so much Dic, I’ve ordered some Iron right now and will report back. After chatting with Manerva during the night I did try just mag oil but it took a lot longer to kick in (pardon the pun lol) so will stay with the mag/pot combo too. Sitting here like a wet rag trying to do some work! Spoke to a GP surgery earlier, four weeks plus to register and see the nurse, blimey! Still at least it’s not uber urgent x

[Cowbsky]

Hi,

It might sound weird.....

I have been suffering from RLS for some 50 years, since kid. Medication wise, best solution for me was benzos, clonazepam in special.

However, lately i am very happy to completely tame tem within maximum 15 minutes, mid of night, with tapping accupoints and impact some recognizing and acceptance words (EFT relaxation self applied tecchnique); no medication at all.

On EFT, Just in case, you might want to learn everything coming From Dawson Church, in their respective, or Gary Craig websites.

Good luck!

[Lovejoy100 in reply to Cowbsky]

Thanks Cowbsky, appreciate you sharing what works for you. All the best.

[Netball-50]

You will find this forum a great help they know more than the GPS I don't know wot I'd do without it honestly don't. If u read my posts u will see what a struggle I've had with GPS neurologists no idea. Manerva gives great advice which I follow more than gp as it has worked for me. Good luck on your RLS journey

[Lovejoy100]

Quick update - I've got a new GP who is completely au fait with RLS and has booked me in for full bloods next week. I had to go into hospital recently for cellulitis which led to atrial fluttering (such fun, not), and the bloods then showed anaemia - so he's aiming to put me on a course of iron, etc - but has warned that it will take three months to have an effect.

He has also provided a short term script for Ambien, for when I'm really sleep deprived, and recommended a magnesium oil called MG Sport - amazon.co.uk/gp/product/B07... - which is wonderful stuff, it works in about 20 minutes and is much more effective than any other oil (and I've tried 'em all!). It also works faster and lasts longer than the magnesium/potassium tablets, which I was gobbling down like sweets, to dangerous levels - but the doc understood this was out of sheer desperation for some relief!

It is just so wonderful to feel like I'm finally getting a sympathetic ear (apart from here), so I'll report back on any new developments.