I have had RLS off and on for nearly ten years, and have tried lifestyle changes and vitamin and mineral supplements to ease the condition, and for a while it was controllable (meaning getting up just once a night to stretch and exercise my legs). But lately with more financial anxiety/relationship anxiety, the symptoms have radically increased. Today, my doctor recommended a low dose of gabapentin (100 mg) every night.
Has anyone tried this ? Thanks!!
That would be the starting dose. It will possibly be increased by increments until it is effective.It generally takes about 3 to 4 weeks to become effective, so don't get too fussed about no rapid effect.
900 is generally accepted as max effective dose for RLS, but some people have gone into the 1000s. Side effects can be an issue at high doses.
Hopefully you will find relief at low dose.
Have you had your iron checked?
And have you been keeping a food diary?
Good luck.
Thanks for your insights
I have not yet kept a food diary, because frankly, I've been in denial. I really had a good stretch, like a 12-18 months of solid relief via diet. But stress has led me to eat a little more bread and a little more chocolate. And both are no bueno for me.
I will get my iron comprehensively checked in the coming week. I saw an interesting video from a doctor at Johns Hopkins re: iron. Likely you know all this, but for some newbies it might be helpful.
hopkinsmedicine.org/neurolo...
Couple months ago I had a basic check-up blood test with my doctor that included iron levels which he said were fine. I since learned that eating before a blood test can impact iron results. And the bummer was today when I mentioned to my doctor that my prior iron results may be off/inaccurate because I ate food before my blood test, he scoffed at that, stating that what and when you eat before a blood test is meaningless. Well, the expert as Johns Hopkins says otherwise, emphatically.
So...next week, I will just go to a private lab and a more full battery of iron tests.
Hi Ken, welcome. Very good find, the iron video at Johns Hopkins. When you get your iron results, do ask for the actual numbers, because we people with RLS need something different from 'normal'. Ferritin and transferrin saturation are most important for us. Actually, you may ask for your earlier results, they are not totally meaningless and may safe you money- if that is an issue.
Here is also a link to a comprehensive advice on iron for RLS: sciencedirect.com/science/a.... Hope that getting your iron 'sorted' will solve things for you. Do take some time to read posts and replies here on the forum. You will become enlightened 💪🏻.
Hi Ken, I'm sorry to hear your having this difficulty.
Anxiety can be factor which makes RLS worse. I believe this is a fact. for which there is some evidence. and which you've concluded yourself. Unfortunately, it's a vicious circle and the worsening RLS can lead to worsening anxiety
I will give you my view of your options and then you can decide what it is that you want to do.
I hope you can see that it's important to break the anxiety - RLS - anxiety cycle.
In my opinion there's two main ways in which you could do this. This gives you two options, one way or the other and a third option is to do both.
The first way is to deal with the anxiety. There are several things you can do to relieve your anxiety.
Since anxiety, I hope you agree, is a psychological factor, maybe you'll accept you might utilise some psychophysiological measures to combat your anxiety. If so then I can offer some further information on this.
The second thing you can do, which is more immediate and offer more benefit in the short term is to go see a doctor and get a prescription for appropriate drugs. This is a a valid choice, if you wish.
From my perspective, in the longer term, this is not generally a good idea.
Of course, again you could try both.
Bear in mind that if you go to a doctor I imagine they will offer you only drugs, THese may deal with the symptoms, but don'tnecessarily dealwith the problem.
The second way is to deal with the RLS symptoms. There are quite few ways in which you can attempt this. It seems you have already tried some with little success.
For further help with this I agree that you did the right thing to see a doctor.
I'm not sure exactly what you discussed with the doctor but you do say they prescribed you 100mg gabapentin i.e. a drug.
What I don't know is what other measures they discussed with you.
There are TWO other things that I believe SHOULD be discussed with you before discussing drugs. By this I mean that they are repeatedly identifed in the literature and recommendations for the management of RLS. Not my opinion then.
The two things are iron therapy and aggravating factors.
Unfortunately neither of these are going to have an immediate effect on your RLS, but could benefit you in the longer term. Possibly meaning, at some point in the future you could manage without drugs.
Iron therapy is a well acepted treatment for RLS as iron deficiency is a main cause of it,
Yiour doctor could helpby doiung blood tests forserum iron, tarnsfaerrin saturation TSAT and ferritin. Also a "fullblood count" including Haemoglobin, Red blood cells and platelets.
The signficance of these blood tests is that if all results are normal, except ferritn, and ferritin isless than 75ng/mL, you may well benefit from starting taking oral iron supplements. My apologies if you already know this.
Here's a link to more information about this.
sciencedirect.com/science/a...
Aggravating factors. If you're taking any other medications for anything else, either regularly, intermittently, whether prescribed or over the counter, they may be making your RLS worse and if avoided can help.
If you're taking any prescribed drug that's aggravating your RLS then you can discuss with your doctor either eliminating the drug, or switching to a RLS safe alternative.
Common ones are antidepressants, sedating antihistamines, antacids, antiemetics plus many others. There is, I believe a list of these somewhere.
There are other things that can aggravate RLS which are outside a doctors remit. Hopefully others will inform you about these. They include diet, inflammation and hypoxia.
Finally - Gabapentin
The severity of somebody's RLS seems to be quite subjective. There is a rating scale you can use to give you some objective measurement of your severity. I can refer you to this if you wish. Based only on what you write, I'd say your RLS appears mild to moderate.
In which case I suggest you seriously consider if taking drugs is the right thing for you. My fear is once you start, then you may find yourself taking them for life.
All the standard drugs currently used for RLS are dependency producing. i.e. after being on one for even a relatively short time, you will find it very difficult to stop again.
The first drugs recommended for the relief of RLS symptoms are called pregabalin or gabapentin. They both amount to the same thing. Once pregabalin is absorbed it is converted into gabapentin.
Both produce dependency have similar side effects and more or less the same risks. The main risks are irreversible vison problems, respiratory distress and addiction. The risks are not at all common, I believe, and the latter two also depend on other factors, in the first - other "central" respiratory problems, in the second misuse fo the drug and in both concurrent opioid use.
If you decide to take the gabapentin then you will find a list of the side effects on the patient leaflet.
Both are known to be effective for relieving RLS symptoms- this is dose dependent. They can also help with anxiety and promote sleep.
Please be aware that it is commonly accepted that gabapentin can take a few weeks to start working, but can take a shorter time. Also the common side effects of dizziness, drowsiness and difficulty walking can occur with the first dose. These usually subside in a few weeks.
It's usually a good idea then to take it only at night (2 hours before bed). To avoid falls.
Often then, at first people starting on gabapentin experience side effects and no benefit and I have observed people saying that because of this they gave it up after only a few days and consequently have never benefited from it.
The recommended starting dose for RLS is 300mg (under 60 yrs old) and 100mg (over 60).
This can then be increased by 100mg a day or 300mg every 3 - 5 days. Recommendations on this vary.
Keep increasing the dose until it becomes effective, then no more. It's best to keep on the smallest dose possible that it effective. Typically, the minimum effective dose is about 900mg. This does vary between individuals. Some need more than 900mg. The maximum recommended forRLS is 2700mg,but it's better to switch to pregabalin if you need more than 1200mg.
Heres some excerpts from the UK national guidance on the medical management of RLS
Please note that the medical guidance does not identify broader non-physical aspects of coping with RLS.
Address any underlying cause that may have precipitated or exacerbated restless legs syndrome (RLS). For example:
1) Iron deficiency anaemia, or serum ferritin less than 50 to 75 micrograms/L
2) An existing drug that may be precipitating or exacerbating symptoms — consider if changing or stopping it is an option.
First-line recommended drug options for people with frequent or daily symptoms are either:
1) A non-ergot dopamine agonist (pramipexole, ropinirole, or rotigotine), or
2) An alpha-2-delta ligand (pregabalin or gabapentin — both off-label indications).
NOTE: The drugs identifed in 1) are no longer recommended.
Thanks so much for all of this great info. Re: stress, I've been meditating much less lately (that is just dawning on my now!). Meditation was a big help with anxiety. Others stressors are simple but profound: financial and romantic. Financial was made more pronounced because of Covid (I live in NYC) and romance...well...we all know what that can be like.
I will be getting comprehensive blood work for iron deficiency next week, and that will give me some good insights.
I appreciate your warning about prescribed drugs. Thus far, I've been able to avoid them. Maybe I just need to be more vigilant and disciplined re: diet and meditation. And hopefully financial stress will decrease, too.
Your implication is a good one: meaning, if I was able to control many of the RLS problems in the past, via diet/supplements/meditation, then it would be wise to really implement that program AGAIN instead of taking a pill that will become habitual. Very solid advice, and most appreciated
No problem, keep in touch
And get serious about food diary. For me, besides the usual suspects of refined sugar, alcohol, caffeine, high glutamate foods and lots of the things added to Prepared foods set off my legs.
I give you sympathy and wish you all the best.Nowadays it is pretty standard for Drs approached by someone with anxiety not to reach for a prescription pad straight away though some people are keen for the more rapid effect medicines can produce. I see you are in the US. One of the problems in the Uk is the lack of availability of psychological treatment, unless you have the personal option of accessing this privately.
There are more online options these days with personal coaching.
The situation in the US may be different.
Hope you find some peace soon,
Thanks Alison!
I take 800mg of Gabapentin 3 times a day. I take it for neuropathic skin pain. I've been taking it for 28 months and yet I developed hot feet syndrome and RLS 10 months ago. I would therefore say, Gabapentin doesn't help with RLS. One thing to note, Gabapentin has side effects and one of those is weight gain. I've put on over 3 stone since taking it and yet my diet hasn't changed. It also makes me feel drunk and affects my memory. I control my RLS by keeping my feet and legs as cold as possible. I dont wear shoes indoors, i use a pet cooling mat for my feet and I keep my feet in ice water as often as possible and for at least 45 minutes before bed and sleep with my legs and feet uncovered and with ice packs between my feet which I can put my feet on whenever I feel that awful, horrible feeling creeping through my legs. It works for me but I dont have to go out to work.
So sorry to hear about your situation. Right now I am up, all night tonite, as it is nearly 5am. But I appreciate your sharing your experience. Every bit of information helps.
I am very sorry to hear about your situation. Weight gain and the other side effects you mention do unfortunately happen. This may be largely due to you being on such a big dose.
I hope it does help with your pain though.
Just to clarify, you say that the RLS started 10 months ago and it's sad to hear that happened.
It is highly unlikely that gabapentin caused the RLS. The RLS only emerged 18 months after you started it.
It's possible that you RLS before starting on gabapentin. Most people with RLS have a genetic susceptibility. In some cases gabapentin can cause "augmentation" which is a significant worsening of RLS symptoms.
Unfortunately when this happens it's often necessary to discontinue the drug, or at least reduce it.
I do have to disagree with your statement that gabapentin doesn't help with RLS. It is recommended for RLS and the reason for this is that it does work for most people. It's a shame it doesn't help you RLS, but you are in a minority.
Many people, like myself take gabapentin with good effect and less side effect. However, I only take 600mg once a day, at night.
Overall, for somebody with RLS, it's best to try and avoid medication if possible, hut if not, currently pregabalin or gabapentin are recommended.
In your case, you vould find to try iron therapy as a treatment and should look at aggravating and lifestyle factors. You can read other posts about these, e.g. my reply to KenBR.
In US the CAPSULE is 300.mg and 2 at night are for 1) seizures 2) nerve repair and Shingles. In UK the dose is with 600 MD PILLS and I inderstand 1200MG for RLS. So.who told you to take 100Mg?
Thanks! Has that dosage continued to be effective? And how long have you been using it? Lastly, is that the sole medication you are taking to treat your RLS? Appreciate your sharing
Hi KenBR, sorry to hear of the recent changes in your symptoms (and life). I know you were specifically asking Niepowim about his dosage, but thought I’d chime in because my experience with gabapentin was the same.
I find 100 mg of gabapentin to be highly effective and it worked from day 1. Well, I was initially prescribed 300 mg but have learned that 100 mg is plenty. Like you, I would prefer not to take any drugs so I sometimes skip it, and do not have any type of withdrawal symptoms whatsoever (though of course my sleep on those nights is generally impacted by RLS/PLMD).
As a lifelong insomniac, I also take 5 mg of a THC edible most nights (so basically half of the typical 10 mg dose you buy at the store- indica, not sativa). Together the THC and gabapentin, taken an hour or so before bed, almost always make for a full, comfortable night of sleep. I’ve been on this low dose of gabapentin, taken intermittently (but fairly consistently that last many months), since August 2020. I have noted no weight gain (in fact, I’ve lost weight) and no need to increase the dosage, but do sometimes get ankle swelling which the neurologist said is from the gabapentin. It’s a bummer, but I bought high top Converse to cover it. Lol I hope you are able to keep a food diary and get back to your meditation because it would be great if that’s all it will take to manage your condition. Best of luck to you!
Thanks a lot for your kind words and feedback. I've been curious about THC (types, dosage and efficacy). And your combination and success could be a really good roadmap for me. Appreciate it.
My doctor recommended 300mg of Gabapentin each night. I also use magnesium butter on my lower legs before getting into bed. And it seems to have worked 😊😊
Thanks!
Cheers
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