I've suffered from restless legs since I was a teenager (I'm late 50s now), but in the last few months I've gone from having it maybe a couple of times a week to every night. It's the overwhelming-urge-to-move type of RL, no pain or other sensations. A few years ago I asked my GP if there was any medication I could take for it, to which she replied, "Not really"! Then, after reading about other people's experiences with side effects, augmentation and withdrawal, I decided I didn't want to go down the medication route anyway. But I'm only getting 4 or 5 hours sleep a night at the moment and it's making me feel quite depressed.
So, here are my questions:
Do you think my RL is bad enough to warrant prescription medication? How much was your sleep being disrupted before you started taking medication?
By the way, I've tried a whole host of non-med stuff over the years - iron, magnesium, B vits, compression socks, CBD oil, warm bath, ice packs, etc, etc, etc. I was so desperate, I even tried the soap-under-the-sheet trick, and can only think that whoever thought up that one must be having a good chuckle (ah well, at least someone's happy).
Thank you for reading, and looking forward to your pearls of wisdom.
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Leggy_MacLeg
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"Not really" wasn't a particularly helpful response!
The first thing that should be considered for RLS is a treatment. The treatment for RLS is iron therapy.
The drugs only relieve symptoms. they do not treat one of the main causative facators in RLS, that is, iron deficiency.
As you'd expect, this isn't as simple as it sounds. Firstly, this does not refer to iron deficiency anaemia. Although aneamia can cause RLS, your RLS is "primary" form the sound of it.
In the case of primary RLS it is brain iron defgiciency which is the problem as for some reason there is insufiicient iron getting across the Blood Brain Barrier.
Secondly, unfortunately iron therapy isn't guranteed to work for everyone.
The accepted indicator that there is brain iron deficiency is a blood test for ferritin.
My first suggestion then is to ask for some blood tests for serum iron, transferrin and ferritin.
50% of RLS sufferers can benefit from a ferritin level greater than 100ug/L, ideally it should be at least 200ug/L.
I note you've been taking iron, but to really know how effective this has been you need to know your ferritin level.
A simple rule is that if it is under 75ug/L you may be able to benfit form taking an orla iron supplement, but you may need to consider how to make this more effective.
If it' already over 100ug/L it's very difficult to raise it any higher with oral supplments you would need an IV iron infusion.
RLS does get worse with age, but I also note that you say it started getting worse a few months ago.
There are quite few things which can aggravate RLS, make it worse. If something changed a few months ago then this may be an aggarvating factor.
The main aggravating factors are medications. The main ones are antidepressants and sedating antihistamines. There are many others e.g. some antacids, anti-emetics, some statins, some BP tablets, non-potassium sparing diuretics + others.
If any of these are aggravating your RLS then avoiding them or changing to alternatives can help.
Unfortunately, iron therapy and avoiding aggravating factors doesn't always work and certainly may take a while.
As for your questionabout severe RLS has to be before you need medication.
That remains a matter of choice, but it does sound as if your RLS IS severe, i.e. every night and only 4 - 5 hours sleep WILL have an impact on your overall health.
You may have heard all sorts of horror stories about the drugs used for RLS. Some people have bad experiences of some of these that otjhers have no problem with.
They all have drawbacks and you have to weigh up the pros and cons of each.
The golden rule is that any medication you take gives you more benefit than problems. Are you overall, better off taking it than not taking it?
The two main medications recommended for the first line treatment of RLS in the UK are the "alpha 2 delta ligands" (A2Ds) and the "Dopamine Agonists" (DAs).
They BOTH have some quite nasty side effects, which not everybody gets, nor to the same degree.
THE main difference between these two is that the DAs have the risk of some major complications. These are dopaminergic augmentation, loss of efficacy and Impulse Control Disorder.
The risk of dopaminergic augmentation is quite high.
Because of this, currently some organisations no longer recommend the DAs for the first treatment for RLS.
I recommend you visit the following web site. This is "official" guidance for UK GPs on how to manage RLS. There is a lot of information there which I think you should look through. You can also refer your GP to this if necessary. They cannot dispute it!
Many thanks for all the information, Manerva. I will book a phone appointment with my GP tomorrow and ask for those blood tests. It would be a relief if it could be sorted out by something 'natural' like iron.
That is a really great & comprehensive reply from Manerva who is very knowledgeable & helpful & I agree with it all. Your ferritin level & if you are taking other aggravating meds are very important & your GP mustn’t be able to fob you off & say your ferritin is normal because our RLS normal is different from non RLS folk ( I was a GP & am not dr bashing but there is loads most drs don’t know.
Then I’d ask myself if it is interfering with my life & ability to function. Do you have a job to go to? Is there any time you can catch up on sleep day time.
Unfortunately the horror stories are correct & you can be so pleased to take a treatment which feels like a miracle & then it comes back to bite you.
Pregabalin, not a dopamine agonist, was a miracle to me but then made me worse & possibly permanently. Mine has been nightly for several years now ( I am 70 ) & the longest I ever sleep at 1 time is 3 hrs £ that is rare. I am up several times each night. I don’t take anything just now
So I would advise to ask for treatment if you are desperate only ( assuming ferritin is ok or iron hasn’t worked ) & I wouldn’t take a DA.
Manerva’s reply is so complete but feel I must add my own anecdotal experience just in case it could help you. I am in my late 50s. and have also had RLS since my teen years. I was having same issue as you about 8 years ago. Sleepless nights while trying to maintain a demanding career was making me desperate for an answer. A lady at a nutrition store recommended I try magnesium citrate. There are different forms of magnesium (ie oxide) and I had tried them before to no avail. I was not optimistic but took her recommendation. The magnesium citrate I use is in a powder form. When I’m having active RLS (typically when retiring to bed) I put a teaspoon of the magnesium powers in water and stir it. It provides me with almost instant relief. When I lay back down, after taking the magnesium, I have a soothing “flowing” sensation in my legs in place of the dreaded gnawing feeling of RLS. Again, magnesium citrate is what has worked for me. I also have used magnesium carbonate and it worked well too. Always in powder form. Anyway, I know everyone is different but wanted you to know hoping it may provide the same relief to you.
Manerva offers excellent advice! Iron supplements worked wonders for me (ferrous bisglycinate chelate). Recently, I added a magnesium supplement called Magtein. It's a patented formula with increased absorption. Prior to this and when my RLS was the worst I also had nightly leg cramps. While not associated with RLS, leg cramps can be caused by low magnesium. Prior - all magnesium supplements gave me a paradoxical reaction - excitable instead of relaxing (enhanced insomnia). I don't know what changed, but I take it daily now.
Thank you, everyone, for your replies. I've got a GP appointment next Tuesday and will report back anything of interest!
Like you, Jphickory, I take magnesium citrate (it helps with my migraines but not the legs). They are tablets, but I crush them into powder as they're too big to swallow whole. I've never taken them at bedtime though, so that's something else to try. Thanks.
Hi Leggy-MacLeg. Very sorry to hear of your worsening symptoms as of late, but happy you have reached out to the forum. As you can see, there are many very kind, well informed people on this site. I don’t have any of that kind of expertise to offer, but wanted to respond to your more personal questions. Everyone’s symptoms seem to have a slightly different presentation and of course we all have varying thresholds of what we can endure and/or what seems reasonable. For me personally, I don’t function well without sleep for consecutive nights. So when my symptoms consistently began to prevent any real sleep for more than two or three nights in a row repeatedly each month, I realized something had to be done. My work and personal life we’re suffering (and I was suddenly crying all the time-likely from desperation and exhaustion)- so the potential benefits of the prescription drugs began to outweigh the risks.
You seem to have dealt with things for a very long time on your own (my hat goes off to you). I hope you can employ some of the suggestions made by the informed people on this site and find relief. I agree with Alison7. If at all possible, continue to avoid taking a DA. Good luck with your GP. Please let us know how it goes.
Thank you for your reply, Guitarpickin. You're right, there are some very kind people here, and I certainly feel a lot more informed now. There is so much advice about RLS on the internet, some of it contradictory, that I'd got quite overwhelmed by it all. Thanks to all of you on here, I now have a straightforward plan of action. 👍
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Pramipexole tablets seem to be miracle cure but.....augmentation??
Is this RLS?
