is this RLS? : went to dr who has... - Restless Legs Syn...

Restless Legs Syndrome

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is this RLS?

Denny3 profile image
15 Replies

went to dr who has prescribed pregabalin which isn’t working yet? Does it take a while to kick in ?But lots of people mention pain and cramps, mine is more a sensation. More trembly and tingly. I’m 66 and this has only recently come on. It’s bloody awful but there’s definitely no pain. As it seems I think to have been triggered by taking nytol for longer than suggested I’m hopeful it might pass. But my thyroxine has just been lowered could this also be a trigger?

many thoughts please?

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Denny3
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15 Replies
SueJohnson profile image
SueJohnson

it takes 3 weeks for pregabalin to be fully effective and then won't help much at the starting dose.

Some people have pain with RLS. Some don't.

All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

No lowering thyroxine is not a trigger since thyroxine makes RLS worse.

amrob123 profile image
amrob123

I found pregabalin effective from the first night and i have off the charts periodic limb movement disorder (a cousin of RLS).

I can't remember the exact dose but i believe it was around 75mg. I increased this dose over time as needed.

I had recently withdrawn from a dopamine agonist (pramipexole) too.

Antihistamines like Nytol do trigger/exacerbate RLS but i would have expected that once you're off it, these effects go away. But in my experience, anything's possible!

Denny3 profile image
Denny3 in reply to amrob123

Thank you, you’ve given me hope! The dr has started me on 25mg of pregabalin but I’m sure she will raise it if not affective. Does this drug have side effects, apart from making you sleepy which is a plus 😊

amrob123 profile image
amrob123 in reply to Denny3

25mg is a very low dose so I wouldn't be surprised if you find it doesn't help your RLS.Yes, pregabalin has many side effects including reduced cognitive functioning, memory loss, reduced mood/depression, acid reflux, balance problems and depletion of vitamins and minerals. That's why it's recommended to take the lowest dose possible. Personally I would look at lifestyle factors (especially diet and exercise) as well as non drug remedies before taking any RLS drugs. They all have side effects.

amrob123 profile image
amrob123 in reply to amrob123

Also, have you had your ferritin levels checked? Iron therapy is recommended first line treatment for RLS.

Denny3 profile image
Denny3 in reply to amrob123

I’ve only recently been having RLS so no I haven’t. I will ask for that when I go back to GP. I’m learning so much from this forum, so helpful! I had a blood test for my thyroid a few weeks ago, but I guess not necessarily looking for that. Would you recommend I start multi vitamins with iron? Can’t hurt I suppose until I get a blood test?

SueJohnson profile image
SueJohnson in reply to Denny3

The side effects amrob123 mentioned are possible but you certainly won't have all of them and maybe none except being sleepy and most go away after several weeks. Wait 3 weeks before raising it and then only by 25 mg every couple of weeks.

amrob123 profile image
amrob123 in reply to SueJohnson

Ha, if only that were true Sue. These are all side effects that I've personally experienced from pregabalin. And some appeared only after having been on it for some time. And I'm far from being alone in my experience of pregabalin. This is why I advocate strongly that if people must take it, that they take the lowest possible dose.

SueJohnson profile image
SueJohnson in reply to amrob123

Wow! There are always exceptions and you are obviously one of them but for the vast majority having that many side effects is not likely. Acid reflux is rare. and according to wellnessresources.com/news/... "At this time, scientists have not identified any nutrients depleted by Lyrica. " If goes without saying that one needs to read the patient leaflet accompanying any medicine and be aware or any changes and report them to their doctor.

amrob123 profile image
amrob123 in reply to SueJohnson

Sue, please stop seeking to minimise what i'm reporting. Acid reflux is not rare on pregabalin. Two gastroenterologists that I have seen both advised that pregabalin can cause GERD by relaxing the lower esophageal sphincter and also by slowing gastrointestinal motility. They have seen it in many of their patients. Whatsmore, many patient forums on gabapentinoids discuss this very phenomenon. Just because you're not familiar with it doesn't mean it doesn't happen. And loads of medications affect nutrient status both directly and indirectly. Pregabalin included.

Munroist profile image
Munroist

The criteria for having RLS which sue has posted above are useful for deciding whether you actually have RLS. Not everyone has painful sensations - one of the main criteria is that you have an irresistible urge to move which is only resolved when you do actually move. Similarly, painful or creeping sensations should be eased by movement. While I agree with Amrob123 generally about drugs and pregabalin in particular, you are on a low dose and don’t seem to be having side effects and at the same time are experiencing some useful benefits so it might be worth continuing for a while or even raising the dose slightly so you can work out the trade off between benefits and side effects. Pregabalin is normally not hard to come off, especially at low doses so you can experiment a bit and even try coming off it to see what happens. Obviously check changes with your doctor. I came off it at the end because I didn’t like the slight cognitive fog but I did find it useful for a year to work out what was happening and reduce anxiety.

Joolsg profile image
Joolsg

Thyroid disease is linked to RLS and the common factor is low serum ferritin. You need to look at your blood test results and the serum ferritin, which needs to be above 200ųg/L ideally. If not, you can speed things up by arranging a private iron infusion at the Iron Clinic in Harley Street or Manchester.Pregabalin only starts to cover RLS after 3 weeks at full dose. Average dose is 150-200mg.

SueJohnson profile image
SueJohnson in reply to Joolsg

Mayo says for gabapentin 1200 to 1800 which translates to 200 to 300 mg pregabalin.

SueJohnson profile image
SueJohnson

Take your thyroid medicine at least 4 hours away from any medicines that contain aluminum, calcium, iron, magnesium, simethicone, or sucralfate even in a multivitamin.

Denny3 profile image
Denny3 in reply to SueJohnson

Thank you, I will make sure I do that

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