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Restless Legs Syndrome

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Rls

Paul007 profile image
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Hi everyone, has anyone been prescribed Amitriptyline for RLS

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Paul007
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28 Replies
Palamino profile image
Palamino

No it's meant to make it worse !!

Paul007 profile image
Paul007 in reply to Palamino

Thank you Palamino for the quick reply. Due to a spinal injury I've recently suffered I was prescribed Amitriptyline for the pain and told to wean myself off my Diazepan as Amitriptyline helps RLS. I'm starting to doubt my doctor

involuntarydancer profile image
involuntarydancer in reply to Paul007

You SO should doubt your doctor. Amitryptiline makes rls worse in almost all cases and this is well recorded. Conversely diazepam can help (though not in all cases).

It might be worth your while ordering the medical textbook by Allen, Buchfuhrer, Henning and Lee on Rls for your doctor’s illumination.

In general with rls a recurring theme is how little the medical profession knows about the condition or the treatment drugs. It is accordingly very important for sufferers to inform themselves fully and master the skill of gently guiding their health care professionals away from worsening treatments (some of which are dressed up as rls treatment care drugs - be very cautious if your doctor suggests dopamine agonists - do a lot of reading before starting on any of these drugs). Good luck.

Paul007 profile image
Paul007 in reply to involuntarydancer

Thank you so much for your reply. The other options are gabapentin, pregablin and duloxitine. Think I spelt them right. It has to be a medication that can relieve my spinal pain and help relieve the rls

involuntarydancer profile image
involuntarydancer in reply to Paul007

Gabapentin/pregabalin are a well recognized treatment option for rls and you may get two birds with one stone there (ie good also for the spinal pain). They don’t work for everyone - in particular they are less effective for those who have augmented on dopamine agonists - and some people struggle with the side effects. It’s worth being aware that they can take a few weeks to get up to speed against rls and getting the timing and dose right also seems to take a while so don’t give up too soon if they are underwhelming initially. Also some people get on better with one or the other of the two. Mostly the side effects settle down as I understand it.

I’m not familiar with duloxitine but as an SNRI it might be in a class that can exacerbate rls. .

involuntarydancer profile image
involuntarydancer in reply to Paul007

It is worth bearing in mind that the final class of drugs used to treat rls is opioids (in addition to alpha2delta ligands such as pregabalin/gabapentin and dopamine agonists such as ropinerole/rotigotine/pramipexole). If your back pain is very severe this class of drugs might also be worth considering although it appears that they are more stable (ie less likely to result in addiction) when used as an rls treatment than for the alleviation of pain.

marsha2306 profile image
marsha2306 in reply to Paul007

Duloxatine can make rls worse. Please go to rlshelp.org and look under “Treatment.”

in reply to Palamino

Hi. My neurologist perscribed Amitriptyline but before I could take any I read, on this site, that it is not the correct drug at all. I have so little faith in neurolgists for RLS. I wish that someone really famous like the Queen or Prime Minister would suffer from it and then we would have better treatment within a year I feel!

sudokufan profile image
sudokufan in reply to

I was prescribed Amitriptyline for back pain some years ago, and still take it. It did not make my RLS worse. More recently my life-long RLS did get worse - but I don't believe this was a result of Amitriptiline. I've been on Ropinirole for a year. I don't think my GP would have prescribed this if NHS advice was not to combine it with Amitriptiline. She's a bright lass. Best wishes though.

Paul007 profile image
Paul007 in reply to sudokufan

Thank you for the reply. I'm 8 days in now on Amitriptyline and still taking Diazepan and I've been fine so unless something dramatic happens I'll continue with the Amitriptyline. Thanks again for your reply its reassuring hearing from someone who's not having their symptoms getting any worse from taking Amitriptyline.

Shumbah profile image
Shumbah in reply to Paul007

My concern is you would have to wean off it it’s slow to build up and hard to get off .

Jelbea profile image
Jelbea

Dear Paul007, Amitriptyline is a drug which doctors often seem to recommend for RLS. However, the large majority of us RLSers cannot use it as it makes us much worse.

I was put on this years ago and just one tablet sent me into a severe attack lasting more than 24 hours during which I did not get a wink of sleep and was pacing about most of the night. You could be one of the people who might be helped by it but I would be doubtful.

Hope this helps

RoadRunner44 profile image
RoadRunner44

Yes, I was recently prescribed Amatriptilyne by my doctor. If you research information about this treatment you will find it is not recommended for restless legs and can make the condition worse. I was amazed that the doctor obviously didn't do his research before prescribing it for me. Needless to say, I havent used them.

Dollydot86 profile image
Dollydot86

Amitriptyline is a black box warning drug if you take this be very careful when coming off it. There is a high chance that you will get depressed feelings and can lead to suicidal thoughts which I experienced when I cold turkey came off it. Please please be careful and google the withdrawals of all medications.

You've probably got the message by now. Amitriptyline isn't at all recommended at all for someone suffering RLS. It's not particularly good for nerve pain either.

As said alrrady, if you are taking it, do withdraw slowly.

As involuntarydancer describes nicely, gabapentin or pregabalin are now more used for nerve pain and some RLS experts now, I believe, prescribe them as the first line treatment for RLS as they don't cause augmentation.

It's true that they don't work fir everyone, don't start working immediately and have their own side effects but they can be effective.

I currently take gabapentin for my RLS, but I originally started it for nerve pain due to a spinal compressed nerve. I switched from amitriptyline

I was also suffering from augmentation at the time due to a dopamine agonist and found that with gabapentin, as I reduced the DA, my RLS subsided.

So it's well worth a try.

Side effects include drowsiness, dizziness and gait disturbance. These can largely wear off after a few weeks, but you have to be careful of falling at first.

Opiates are another option for RLS If you're in the UK targinact is licensed for treating "refractory" RLS i.e. when "first kine" treatments, (DAs and gabapentinoids) have failed.

Unfirtunateky, also in the UK you may fibd it difficult to get an opiate prescribed fir RLS.

Also in the UK you won't get an opiate prescription for chronic pain as that is now NOT recommended.

I hope that either gabapentin or pregabalin works for you.

Paul007 profile image
Paul007

Thank you everyone for the helpful comments but some of you are saying that amitriptylines are not used for spine pain? My spine surgeon recommended 4 medications that will help with the pain and amitriptyline was top of the list. It's not muscular pain it's brought on by my spine touching nerves. I spoke to him yesterday after reading all the replies from you guys and told him my concerns. He absolutely sticks by his amitriptyline suggestion of 20 mg and recommended slowly weaning down to 4 mg of Diazepan and staying on both. Its been a week now and I haven't had any twitches in my legs so maybe the surgeon knows what he's on about. He's not from your local NHS hospital but a Musculoskeletal Specialist. I'll give it another two weeks and post an update. Again thank you for your replies this group has always been so helpful over the years

Arkangel profile image
Arkangel

Yes, didn't help at all and made my mouth so dry, I couldn't swallow.

Jumpey profile image
Jumpey

Yes and it sent my RLS through the roof!x

Rangers9 profile image
Rangers9

Rangers9 here I have just been taken off those I started on. 10 mg then was uped to 20mg k.

Then all hell broke out I started dive bombing all over the house landed on the tv 📺 table miracle it never smashed.i head-butted the window sill in the wet room on 3 occasions my wife was freeking out incase I fell down the stairs from the bedroom just to let you know what these things can do

Allan

LinGriff profile image
LinGriff

I have been given amitriptyline this week but so far it has done nothing for my rls.

Paul007 profile image
Paul007 in reply to LinGriff

I'm 1 week in and it's been alright but I am still on my Diazepan.

marsha2306 profile image
marsha2306

My advice is DO NOT TAKE it! It is known to make RLS worse. I took 10 mg for nerve pain and paced the floors for 2 months.

Wanman4 profile image
Wanman4

Yes, and it makes it much worse, as do SSSRI’s!

Paul007 profile image
Paul007 in reply to Wanman4

What's an SSSRI?

Kaarina profile image
KaarinaAdministrator in reply to Paul007

Selective serotonin reuptake inhibitors (SSRIs) are a class of drugs that are typically used as antidepressants in the treatment of major depressive disorder and anxiety disorders.

Sara_2611 profile image
Sara_2611

No -never

Jane190 profile image
Jane190

I take nortriptyline and find them very good

Paul007 profile image
Paul007 in reply to Jane190

I've never heard of them

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