Back again too

[Ronniebongo]

I was taking a low dose of codeine the last few months and it really did help with the rls .. was getting some good nights sleep ..I had to stop taking it two weeks ago due to it triggering really bad migraine.. I’m a sufferer for many years .. it’s 2am and again I have restless everything.. arms legs stomach 😩 it was suggested a few times on here to try gabapentin .. I think I may have to .. any thoughts again ? 🥴I just want to sleep 😴 my iron levels have gone up since recommended to check those last year , I take supplements now 👍🏻

[Joolsg]

Here's the RLS-UK website with a list of medications for RLS.rls-uk.org/medical-treatments

There are only 3 classes of medications to help. Opioids, gabapentinoids or benzos.

RLS-UK no longer supports dopamine agonists because of inevitable augmentation and high rates of Impulse Control Disorder.

Codeine is an opioid. There are others. Tramadol, oxycodone, morphine, dihydrocodine, and the longer half life opioids Buprenorphine or methadone. You may not experience migraine with another type of opioid.

You could also try pregabalin or gabapentin.

And of course- you should raise your serum ferritin above 200ųg/L via iron pills or iron infusions and ensure you're not on trigger meds. All set out in the website.

[Danni54 in reply to Joolsg]

Having just read your post Jools, I am once again horrified by my Dr.s because my Ferritin level is always at 35 or under and I have to ask for a blood test ! They used to be done by the Dr. but we now have to get it done by the Nurse! I have asked for an Iron infusion but that was refused. As I keep saying we have to fight for everything now. Everything seems to have gone bonkers since Covid! Scary ! x

[SueJohnson in reply to Danni54]

Since your ferritin is that low can they diagnose you with anemia which should qualify you for an iron infusion since you can't take iron tablets?

If they won't perhaps see a hematologist to do so?

[Danni54 in reply to SueJohnson]

They believe that if Ferritin level is 30 or more then you don't need an iron infusion! I have tried to argue the point but I don't seem to get anywhere! However, 1 lady Dr. I spoke to has agreed that I need another blood test to check various things but I don't think that I should have to push them to do blood tests after everything I have and am going through! I wish that I could find a Dr. who will listen! Too much to ask these days! I'm waiting to see what my usual Dr. says on Monday. I will let you know!

[SueJohnson]

I would try gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...