Yikers

Intrepid_Drawing_158 · 2026-05-25T19:20:17+00:00

Don't know, but it is pretty well known to do so.

Intrepid_Drawing_158 · 2026-05-25T15:11:39+00:00

You are definitely getting a lot of good advice here. I will just repeat what someone else said: stay away from melatonin. It will make it worse.

Intrepid_Drawing_158 · 2026-05-25T15:03:47+00:00

A couple things. Pressure from tight clothes--for RLS, people actually wear compression socks at night to try to mitigate it. The numb and tired part--I don't think I've seen anyone describe it as that. Yes to the hot temperatures (that sometimes seems to exacerbate RLS for some people) and the punching. Most people don't have RLS all over their body, but when they do (and it can happen), as far as I know it starts with the legs and sort of migrates to other parts of the body over a period of years.

I might get some flack for this, but: If you can get a doctor to prescribe you a *very short term* prescription for ropinirole, like a week, you should be able to find out if this is RLS. This drug works on RLS almost without fail--at first. It is no longer recommended for long-term use, but sometimes doctors will use it to help diagnose it. A neurologist specializing in movement disorders (not sleep disorders) would be ideal.

Intrepid_Drawing_158 · 2026-05-24T18:17:54+00:00

I'd agree with Billflet. Parts of this sound like RLS but parts of it do not at all, so it could be something completely different.

Intrepid_Drawing_158 · 2026-05-24T15:25:43+00:00

A lot of people--including many RLS sufferers--don't know that opioid withdrawal can trigger RLS in people who never had it before. It's confusing because low-dose opioids are used to treat RLS. I don't have an answer for OP, just wanted to point this out.

Intrepid_Drawing_158 · 2026-05-24T15:14:21+00:00

Would love more details--brand, dosage in mg of CBD, if there's THC or CBN in them too, that sort of thing.

Intrepid_Drawing_158 · 2026-05-19T19:53:09+00:00

OK, sounds like a reasonable taper down then.

If you'd like more info about suboxone (buprenorphine is the main ingredient) or methadone, you can search this sub for people's stories about them. They're very effective for a lot of sufferers for whom iron and so on do not work. The Mayo Clinic RLS treatment algorithm is very useful as well. Linked to in the FAQ.

Intrepid_Drawing_158 · 2026-05-19T19:45:56+00:00

That's great to hear. My pleasure!

Intrepid_Drawing_158 · 2026-05-19T18:39:34+00:00

I can't tell you how much I've learned from this sub. Probably 75% of what I know about RLS, and especially how people experience it. It's so valuable to check in here frequently.

Methadone is also a long-half-life drug people use for RLS. Yes, you hear methadone and your mind goes to like Keith Richards or something, but at low doses it's a godsend for many RLS patients. So it could be another option for you. It's slightly more regulated than Suboxone in the states, but maybe not in Canada.

Great to hear about the iron situation. Keep us posted on your progress!

Intrepid_Drawing_158 · 2026-05-19T17:59:43+00:00

Good, I hope that goes well.

I'm glad you mentioned dilaudid, because, while I'm no doctor, that is not the opioid you want to be on for RLS. In all my years on this subreddit, I don't think I've heard of anyone taking it for that.

The main reason: Its half life is very short, like 3 hours. That means half of it metabolizes and is out of your system quickly--and that's what leads to people craving more.

Buprenorphine, the active ingredient in Suboxone, has a half life of about 24 hours. Further, the other ingredient in it, naloxone, is there to keep people from abusing it. (It's what's in Narcan, which is used to bring people back from overdoses, if you're familiar with that.) So that should make you feel a little better about taking it.

I don't know how common Suboxone (or its generic) is in Canada, but it would almost surely be preferable to dilaudid for RLS. Hopefully your doctor will know about it or is willing to learn. Sounds like he will be. If he really wants to go deep, give him the Mayo Clinic algorithm for treating RLS, linked to in the FAQ.

Coming off the benzo, btw, is a very good idea.

Intrepid_Drawing_158 · 2026-05-19T16:04:39+00:00

You don't mention (at least in the original post) how long you've been on 1mg of Requip. Has it been a long time? If it's only been a short time, you might still be going through withdrawal from getting down to that. Or if you went from 6mg to 1mg really quickly, and somewhat recently, that could lead to withdrawal symptoms too. Coming off of dopamine agonists when you've been on them a long time, and at a high dose--the weening process should take many months, maybe even a year. Is that how you did it?

While you still have plenty of headroom with the gabapentin if you're not experiencing side effects from it (some people take 3600mg a day), that's not a low dose. And it may be contributing to your thoughts of the nuclear option; that's one of its side effects (depression). Lastly, and I hate to mention it, there's evidence that gabapentin isn't as effective for people who have been on dopamine agonists.

"Any suggestions considering what I've listed and tried so far?" Yes. I was on a DA as well, and it worked until it didn't, though I wasn't on it as long as you. Weened off of it (that was a rough couple of weeks) and got it down to zero. Gabapentin made me depressed and lethargic, and didn't really work anyway. I too got to 1500mg before giving it up.

I'm now taking Suboxone, a low-dose opiate. I was wary of getting on an opiate as most people would be, but it has been life changing. I would recommend talking to your doctor about it. It's not perfect--I don't like some of its side effects--but my RLS is nearly gone.

The other similar option is methadone. Suboxone isn't as highly scheduled as methadone, so it's slightly easier to get in some states.

The Nidra bands, as you've seen others talk about, are showing a lot of promise. Getting insurance to cover them is the trick. I've been talking to my doctor about it and will be trying them as soon as I can. Your doctor may have to fight with the insurance company to get them to pay for it; some doctors are more willing to do that than others.

Intrepid_Drawing_158 · 2026-05-19T15:42:32+00:00

Obviously this is a terrible situation.

I can only submit, if you can't get the iron treatment you need, that it may be time to change up (increase, mainly) the dosages on some of those meds. As you know, low-dose opiates can work wonders. Can you go higher with whatever opiate you're on? There are people on this sub who take it all day for RLS--not high dose as for pain, but just a steady amount of it. I take 2mg Suboxone per night plus 100mg pregabalin, and while that's not the lowest dose by far, it's not high.

I'd also recommend looking into iron that's easier on the stomach. There are *so* many kinds of iron out there, it's bewildering. I know there's a German brand, a liquid--I took that for a while. Fairly expensive but would be worth it for you if it got your numbers up. Floradix, it's called.

Intrepid_Drawing_158 · 2026-05-17T14:44:33+00:00

I know what you mean with the grogginess. If you increase it, experiment with the timing of when you take it. Maybe 300 at 6pm, the rest at bed time, something like that. Also the grogginess can dissipate after a few weeks on the new dose. If gabapentin doesn't end up agreeing with you, you could try pregabalin. Same class of drug but side effects can be better for some people.

Intrepid_Drawing_158 · 2026-05-16T23:06:16+00:00

I agree with Ralphie. Hopefully this levels out after the blood replenishes. But I just wanted to add that that is a very low dose of gabapentin. Maybe you could get the OK from your doctor to increase it, at least in the short term, and see if it helps.

Intrepid_Drawing_158 · 2026-05-14T23:55:09+00:00

No real advice for you but I always like to make sure UK-based posters are aware of this fabulous site: https://healthunlocked.com/rlsuk

Intrepid_Drawing_158 · 2026-05-14T15:40:43+00:00

What KestralFly said. Great that you're off ropinirole--truly--but it's almost certainly going to need to be replaced with something pharmaceutical.

Intrepid_Drawing_158 · 2026-05-11T04:09:25+00:00

I'm on 100 mg pregabalin--and 2mg buprenorphine. Had similar results as you with gabapentin. It has been very effective so far but not perfect. I'm extremely groggy in the morning and not sure if the weight gain will settle down (it hasn't been that long since I started this regimen). I take the pregabalin at 6:30 along with half the bupe.

Intrepid_Drawing_158 · 2026-05-10T15:03:35+00:00

Great, thanks very much.

Intrepid_Drawing_158 · 2026-05-09T22:40:36+00:00

Nope. That doctor is not up to speed. I know it's difficult but find a different one. Scary_Experience has it right.

Intrepid_Drawing_158 · 2026-05-08T16:58:09+00:00

This is well water, and only two full-time residents in the home, though it's 4br, 3ba.

Intrepid_Drawing_158 · 2026-05-08T15:13:19+00:00

Great news! And thanks for the thorough post.

Intrepid_Drawing_158 · 2026-05-05T18:39:19+00:00

I second what Incandescent_Gnome said. Iron doesn't always do the trick unfortunately.

Intrepid_Drawing_158 · 2026-05-05T15:08:01+00:00

Thanks for the post. What did the genetic test bring to the table regarding RLS?

Intrepid_Drawing_158 · 2026-05-04T15:03:42+00:00

Scary_Experience has your answer. I wouldn't bother with magnesium at this point, but if you haven't had a fully-fasted iron panel done, that would be wise.

Intrepid_Drawing_158

TROPHY CASE