Thank you!

[Camperfan]

Hi everyone, I’m 53 and have had RLS as long as I can remember. I had begun to think it was something I just have to ‘put up with’, but having read some posts and the links on NICE, it seems it may be the meds I’m on making it all worse. It has stated to happen every night and much more severe, it’s spread to my arms and shoulders as well as legs and I basically don’t get to sleep on my own bed anymore to avoid disturbing my husband. It’s a total nightmare and it makes me so cross when GP’s don’t take it seriously or when some people say it’s all in your mind! I meditate daily, exercise daily and do all I can to deal with stress. So, I’m going to talk to my GP about my meds and workout a way forward with this. Thank you for giving me some hope that I can have some normality again one day!

[LotteM]

Thanks for your post. Finding an active community with people that recognise and understand your circumstances is amazingly comforting, isn't it? I hope with the info and support provided on this forum you and your go will get a better grip on your RLS symptoms.

May I ask? You don't mention which medicines you take. From your description it appears that you take a dopamine agonist (DA), pramipexole or ropinirole, and are suffering augmentation. If so, there are three things I want to stress again. First, have you iron tested and try to get your ferritin as high as possible. Second, if you are going to reduce a DA, do it very, very slowly. And third, think ahead of another medicine that may have to replace your current one, but do NOT get yourself talked into taling another DA, e.g. the Neupro patch (rotigotine). And remember that the alpha2delta ligands gabapentin and pregabalin take several weeks to become effective and may need tweaking of dose and timing.

Good luck and keep in touch.

[Camperfan in reply to LotteM]

I take sertraline and have also been taking antihistamines every day so lot sure if the sertraline is in the category you mention?

[Hidden in reply to Camperfan]

Sertraline and other SSRI antidpressants like it can make RLS wore. Sedating antihistamines, if that's what you take can also make RLS worse.

However what Lotte is referring to is dopamine agonists i.e. pramipexole, ropinirole or rotigotine.

These are specifically prescribed to treat RLS, but commonly cause "augmentation", which is an actual worsening of symptoms. Symptoms spreading from the legs to other parts of the body is often a sign of augmentation.

If you aren't actually taking a dopamine agonist for your RLS, then your worsening symptoms may simply be due to the sertraline and antihistamine.

You could discuss with your doctor switching to a non-sedating antihistamine.

As Lotte also suggests, it would be a good idea to get blood tests for ferritin and haemoglobin.

If your ferritin is below 75ug/L then you may benefit from taking an oral iron supplement. An over the counter supplement, "gentle iton", ferrous bisglycinate would be sufficient for this.

If you currently take no medicine specifically for RLS then it's not at all desirable to start on one. However, if your RLS is causing you distress then you might have to consider taking one.

You would also have to discuss that with your doctor.

Your doctor should give you a choice of one of two classes of medicines. These are either a dopamine agonist OR an alpha 2 delta ligand.

Both of these are mentioned in the NICE information on RLS, but be aware that dopamine agonists are no longer recommended as the first treatment for RLS.

pubmed.ncbi.nlm.nih.gov/274...

Whereas the alpha 2 delta ligands are recommended.

[Camperfan in reply to Hidden]

Thank you that’s really helpful

[LotteM in reply to Hidden]

Good reply from Manerva.

[Jules1953]

I totally understand what you are saying and feeling.Sounds like you are experiencing augmentation. Are you taking dopamine agonist medication.

I was taking Sifrol (Pramipexole) for approx 10years and then had to slowly wean off due to augmentation.

I used Endone (oxycodone) towards the end stages of reducing my Sifrol intake.

This helped with the withdrawal symptoms.

I now use Temgesic sublingual 200mcg tablets to control my RLS.

Kind regards Julie McGowan from Western Australia