Please help with what to do next?

[Simkin]

Am SO upset that after 4 months on 10mg oxycontin long release & 1,500 gabapentin I really thought my rls had gone.But am now going crazy again in the night and am SO TIRED.

Should I first go back to taking magnesium again? And if so how much?

Or should I ask my GP for blood test in case my ferritin has gone down?

Or (and my GP now asks what the forum think?? Joolsg?? Sue??) Do I ask if I can go up to 15mg oxy?

Or see if he would swop me to buprenorphine?

When I speak to him I need to be brief & succinct. He has already read piece you gave me to send him from the Mayo Clinic. I can't ask him to read more when he is so busy with other patients.

Joolsg. Sue. Please help.

What should I ask him FIRST?? And what would you do??

[Madlegs1]

How often do you take the 10mg of Oxycontin?Opioids need to be taken evenly over the 24 hrs.

If you take magnesium, do so at least 3 hrs apart from the Gabapentin.

Have you changed or taken on any new meds? Such as antihistamines or statins or antidepressants?

Also any new foods containing triggers?

Good luck .

[Simkin in reply to Madlegs1]

Thank you Madlegs for your prompt helpful reply.No don't take stations or any new meds & have not changed my diet.

Cannot think of any new triggers.

Just the usual breakthrough I always get with any new rls tablets. Although 4 months this time seems very short.

But it does sound as if buprenorphine is the next rls tablet to try.

My father also got rls.

Joolsg says she no longer gets rls on buprenorphine.

Am staying with my cousin who cannot believe I can't sleep through the night.

"How do you cope" she said to me!?!?

[SueJohnson]

I would ask to switch to buprenorphine so you don't have to worry about taking it every 4 to 6 hours which if you don't you get mini withdrawals. If it has been 3 months since your last ferritin test you can ask for a new one but that's not going to help you now.

[Simkin in reply to SueJohnson]

Sounds as if buprenorphine is the way to go.

[SueJohnson]

And I agree with Madlegs1 - look at what might have changed. Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

[Joolsg]

My annoying Phone will not let me forward a Pdf of the latest Massachussetts Opioid Study update. I've taken screenshots and hope they show up.

The study is proving the efficacy of low dose opioids, particularly methadone and Buprenorphine for refractory RLS.

Your RLS is now refractory.

Oxycontin is problematic for many with RLS. It seems to help at first then stops or causes mini opioid withdrawals.

So, either ask for 4 x5mg and take eveey 6 hours but if that doesn't improve RLS after 3 weeks, your GP should consider an opioid with a long half life. Buprenorphine has a 25 hour half life and therefore works really well for RLS. You take a small night time dose and it covers all symptoms for most people.

Starting dose is 0.2mg, increasing by 0.2mg until relief. Average dose is 1 -1.5mg.

I can only suggest asking your GP to look at Dr Berkowski's website, the Mayo Algorithm and here's a copy of a letter to me from King's College hospital, telling my GP to continue the prescription as my RLS score reduced from more than 30 to less than 10. My score is actually 0. I get NO RLS.

Text

[Joolsg in reply to Joolsg]

The Massachussetts study photos didn't show up! Agh. Basically the study shows that methadone is the most commonly used opioid for RLS in study participants. Most have not increased the dose of the opioid, showing that addiction and tolerance have not happened. There are nearly 500 participants.

[Simkin in reply to Joolsg]

Joolsg how incredibly helpful. Thank you.Basically I am on the slow release oxycontin which I take at 10pm at night and it is supposed to last for 12 hours.

Although I know Sue said it only lasts about 8 hours.

But I could try asking my GP if he would try me on two short release daily instead to see if that works.

But last night my legs started up just 2 hours after I had taken my tablet at 10pm.

[Joolsg in reply to Simkin]

The Oxycontin Netflix documentary, based on facts, showed that Oxycontin did NOT last the reported 12 hours. I found Oxycontin didn't last 4 hours!. I used to take 10mg at 10 am, 10 mg at 10pm and 5mg at 2am when RLS woke me every night. My RLS would start at around 6 pm and last until after I took the 10pm pill.

It just doesn't work for so many off us. I also took 150mg pregabalin at night. My RLS was 36/40 & I couldn't continue like that.

I tried Everything. Iron infusions, a year on a strict, no carb, paleo diet, 9 months on Low Fodmaps diet, 6 months on.vegan diet.

Every supplement mentioned on here I've taken, every gadget I've bought. Nothing, nothing helped.

Then Shumbah posted about Buprenorphine. Oxycontin hadn't worked for her.

Buprenorphine was miraculous for her and many others, and it has been for me.

Common side effects are nausea and constipation. I had severe nausea, but my medical cannabis, with 20% THC stopped it within a day. Chemo patients use cannabis for nausea.

Good luck & let us know what happens.

[Simkin]

Thank you Joolsg. Helpful as always.A bit put off when hearing about the nausea but I could ask my GP if he would prescribe anti sickness pills to start with.

[SueJohnson in reply to Simkin]

Many medicines for nausea make RLS worse. Ask for Kytril (Sustol, Granisetron, Sancuso), Anzemet (Dolasetron) or Kwells (Quells).

[Simkin in reply to SueJohnson]

Thanks Sue.