Restless legs syndrome

Does anyone else hit their legs because of Severe RLS. I have it every night and I am getting really tired of dealing with it. The meds prescribe don't work. Is there any relief out there?

[Meds2000]

Yes I give myself deadlegs, end up with bruised thighs

[Hidden in reply to Meds2000]

Mine is more on my lower legs and feet. I have asked to have my legs removed because of how bad it is. I know it sounds bad but this iui s so frustrating!

[Madlegs1]

You don't say which meds you've tried? My first thought is that if you have been prescribed the usual first line med for RLS, then it would act immediately -- (Pramipexol).

If it's not working, then you may not have RLS, and should seek professional med help.

Many substances you take can trigger rls activity, without you having actual RLS.

Salt, MSG, alcohol and most processed foods can do the trigger activity.

Someone recently posted that they had followed this advice and their symptoms disappeared almost completely.

Antidepressants and antihistamines can also trigger RLS.

Keeping a food diary can usually help pinpoint likely culprits.

And-- YES -- I've had to bash my legs quite severely when I get attacked by those desperate heeby jeebies. Though I find a hammer type massager - percussive-- works better, and need not involve a trip to AnE for leg reconstruction.

Good luck.

[lee_uk in reply to Madlegs1]

I didn’t know about Salt, MSG & processed foods. Thanks will look into that more

[Pippins2]

Hi which meds are you on ? What dose? How long have you been on them ? Did the meds work when you first started on them ?

[Hidden]

Hi

Sorry to hear you have to resort to hitting yourself.

The "RLS sensation" is really nasty, so much so that pain might be preferable to it.

The only other thing I've experienced that's near it is proctalgia fugax, which sometimes wakes me up in the night.

However, not knowing what you've tried so far there are quite a few things that you can do to prevent yourself further injury.

I'm afraid, as Madlegs writes, most doctors just guess that you have RLS without apparently using any diagnostic criteria, then orescribe the first tbing that comes to mind. That's usually pramipexole, but apparently, these days ropinirole's becoming more popular with docs.

IF you've been prescribed one of these drugs or rotigotine then you may not know that these are called "dopamine agonists". (DAs).

They are intitially very effective for RLS symptoms and almost immediately. As Madlegs says, if you've taken one of these and they never relieved your symptoms, they are SO effective for RLS, that you may not actually have it.

However, if you have tsken a DA and at first it did work, but after a while failed OR your symptoms even got worse then what may be hapoening is that you've become another victim of the complications of taking a DA

These are lost of efficacy and augmentation.

If you're suffering augmentation (i.e. your symptoms have got WORSE) then there is a way of dealing with this.

Your doctor should have warned you about this.

Your doctor should also have investigated if there are any underlying conditions causing your RLS and have done blood tests for iron deficiency before prescribing any medication.

Thry should also have discussed any possible aggravating factors, i.e. things making your RLS worse. As Madlegd says, these incude many medications and quite a few dietary factors.

If you DO have RLS you may still benefit from iron therapy as this is a treatment fir one of the causative factors of primary RLS.

As regards medications for your RLS please let us know what you're currently taking and how long you've been taking them. This would help us give more specific information as rekevant to you.

RLS is difficult to cope with and for many it requires not just getting medications right but also lifestyle changes and adopting good psychological strategies for dealing with it.

Unfortunately, one of the problems with the awful sensations that accompany RLS is that a). you perceptions about them, i.e. what they mean to you and what value you put on them.

b) they can draw your attention so much so that they become the centre of your attention. This worsens the experience.

This points to two things which could help as well as doing things to actually reduce symptoms.

One is to explore what significance you see your symptoms as having, e.g. are they threatening, dangerous or whatever. What goes through your mind when the symptoms start?

Two is to use distraction techniques, i.e. things which draw your attention away from the symptoms onto something else. You have already apparently learned one distraction technique, i.e. hitting yourself. As you know it's not a particularly positive thing to do. There are other distraction techniques which don't involve self harm.

I hope this helps.

[Kaarina Administrator]

The person who posted the above thread, appears to have already left our community.

[Stdorn]

Yes only did it once. I have pics of my black and blue legs from 9/18/2019. The hitting didnt help anything but I have found getting very angry, upset or scared seems to give temporary relief (something to do with adrenaline release apparently)