New woman

Hi. I’ve had RSL most of my life, (family trend). Six years ago I was diagnosed with secondary breast cancer in my spine and pelvis. Apart from the anti-cancer treatment I was put on strong opioid medicine for the pain. For nearly 3 years I had no RLS. It was wonderful! But over the past few years it’s back. I am still taking strong opioid painkillers and Naproxen.

I can sometimes go for a couple of weeks with few episodes, but at the moment it is keeping me awake for several hours at night. I also have peripheral neuropathy in my feet as a result of the Chemo I was on last year. Has anyone tried Levadopa for their RSL as I gather it can work after just an hour or so? Sometimes I can stop it by keeping my legs over stretched and sometimes by going to the loo. Any other remedies would be gracefully received.

[Madlegs1]

I'm surprised you are getting rls with opioids. I imagane something is triggering it.

Have you taken on anything new since you've noticed the change? Antihistamines and antidepressants can be triggers. As also many food substances.

[Hidden]

As Madlegs says, it's surprising if you're getting RLS symptoms when taking opiates. It is probable that something else is acting as a trigger.

Levodopa used to be used for restless legs as it increases dopamine levels in the brain. However, there are merits and disadvantages to it.

Because of the disadvantages it's not really suited for regular long term use, i.e. every day. If you were to use it now and again, you might avoid its risks and it does work almost immediately.

It would be better to explore what's triggering your RLS episodes. Otherwise, you may find yourself taking it more and more frequently and would suffer long term consequences.

If you have a genetic predisposition to it, then it might be simply a matter of age, in which case, it may be better to think of taking another RLS medication on a regular basis.

Another factor is that in the UK, (and US) the use of opiates for chronic pain has fallen into disfavour.

If your pain is nerve pain, a "Gabapentinoid" is now commonly used, Gabapentinoids, incidentally, are also used "off label" to treat RLS. I currently use Gabapentin for both nerve pain AND RLS. It does not work immediately and is not really suitable for on and off use. Regular use does not however create the same long term problems as Levodopa or other dopaminergic agents.

In any event, you would need to consult your doctor about these medications. It may be that they're willing to prescribe Levodopa in the short term until triggers are discovered OR regular RSL relief is needed. Furthermore, the use of opiates should not be suddenly stopped!!!!!

You may benefit from some blood tests which might identify possible internal causes of worsening RLS.

These, at your doctor's discretion could include tests for anaemia, ferritin, urea and electrolytes, (potassium, calcium, sodium), vitamins D and B12, Hba1c (diabetes) and thyroxine. All these are known to affect RLS.

I hope this helps.

[Hidden in reply to Hidden]

Thanks so much for taking the time to outline all the options.. I'll talk to my GP.