Just discovered that I have RLS - any advice?

[IrisCarter]

I have had horrible feelings of restlessness and the need to keep moving my legs in the evening for about a year.

It went away briefly while I was in hospital for a month following open heart surgery but returned quite soon after going home.

I have also had a ‘habit’ of moving my feetand wriggling my toes for as long as I can remember.

I am about to see my GP to discuss treatment and wondered if anyone has any advice?

I was thinking about asking to go back onto pregabalin which I need to take for a neuropathy which is causing intense itching on my forearm. I used to take it for cervical radiculipathy pain which is also the cause of the itching.

[Madlegs1]

If Pregabalin worked for you before without bad side effects, then it makes sense to go back to it.What other medications are you on at present? If you are on statins, there may be a problem.

The relief you got while in hospital, was probably due to opiate painkillers used post op.

Good luck.

[IrisCarter in reply to Madlegs1]

I am on quite a lot of medication because of my heart problems and depression/anxiety: Ramipril, bisoprolol, furosemide, sertraline, quietiapine, warfarin and vitamin D. Thinking about it I only came off pregabalin last year - which is when the RLS became really intrusive.

Until I found out about RLS I just thought that Iwas strange. - lying down with my legs in the air while watching TV for example, because I was less restless!

[Hidden in reply to IrisCarter]

PS, bisoprolol (beta blocker), sertraline (SSRI antidepressant) and furosemide (diuretic) are the main issues.

It may be possible to switch to alternatives to bisoprolol and furosemide. The problem with furosemide is that it depletes potassium.

I suggest you discuss these with your doctor. A potassium supplement may help, but do NOT taken any without your doctor knowing.

Sertraline would seem unavoidable. RLS "safe" alternatives e.g. trazadone are more sedatives than antidepressants. Bupropion is RLS safe, but not readily available in the UK.

[LotteM]

Welcome!

Oh my, that is quite a few meds. And especially anti-depressants are infamous for worsening RLS symptoms. I assume you are in the uk. It may be insightful to thoroughly look through the rls-uk.org website, they do amongst other things list (types of) medicines that are known to often worsen RLS.

It seems you have severe enough symptoms that 'simple' non-pharmacological measures may not be enough to quell the symptoms, but do check them out; they may help at least a bit. I would recommend to read through posts on this forum. There is a world of good ( and some not quite as good) information. And list of things not do or not to do. To which I might add that wine, caffeine and icecream for example don't affect MY rls negatively.

I am outside the uk, but in replies by Manerva you will often find links to the NICE guidelines. Both about RLS and about different treatments.

Finally, at the basis of all is iron. The current main hypothesis about the cause of RLS is brain iron deficiency (BID) in a part of the brain, the substantia nigra. But it is difficult to assess the iron status of the brain directly (without killing you), and also it is very difficult to raise brain iron levels. The best indicator so far is blood ferritin combined with percentage saturation. See this scientific paper and recommendations: sciencedirect.com/science/a...

Also, this webpage/ paper gives a good overview of many things RLS: uptodate.com/contents/treat...

Get yourself informed. Thoroughly. Because you will find that not many people, including gps and neurologists or sleep specialists are literally up-to-date about RLS and its treatment.

Finally, please never hesitate to ask questions, to moan about your situation or to rant. We're here to listen and to help by sharing experiences and knowledge. And most of all: we understand.

[Hidden]

Hi, just to reinforce what both Madlegs and LotteM have written.

Here's the link that Lotte referred to. It's the UK National Institute for Health and Care Excellence's guidance for GPs on RLS. (NICE 2020).

This is a link to the page on first treatment, but also have a look at the other pages. e.g. the prescribing guidance for pregabalin.

Pregabalin can be effective for RLS.

cks.nice.org.uk/topics/rest...

[LotteM in reply to Hidden]

Thanks Manerva.