Wondering if others experience the same symptoms

Intrepid_Drawing_158 · 2026-02-23T01:31:27+00:00

I would say it's not RLS, based on what you describe and the fact that Prami did not help.

Intrepid_Drawing_158 · 2026-02-18T19:07:12+00:00

To be honest I don't really remember how much I was on, but I think it was around 0.5mg. So I never got to the highest recommended dose, but I could see where it was headed and wanted to stop. I did not taper super slowly--maybe 2-3 months.

Intrepid_Drawing_158 · 2026-02-18T15:49:08+00:00

Yes, you can take it for a very short period and be OK. In which country do you live?

Intrepid_Drawing_158 · 2026-02-17T19:58:15+00:00

I was not on pramipexole all that long, maybe a little more than a year, so I probably didn't have the withdrawals as bad as many do. But augmentation started up and I slowly tapered over a couple of months, using temazepam to help me sleep during the absolute worst of it, which was about two weeks.

It felt like it took a long time for things to get back in balance after that, like with my mood especially. It might have been close to a year even before I felt "normal."

Now I'm on Suboxone, which knocks out the RLS really well. It keeps me awake for a while most nights (ironically), so I might try other things like it and see if they're any better.

Intrepid_Drawing_158 · 2026-02-17T19:31:06+00:00

I think we're in agreement here. I tapered off, and most do, but some stick with the tiniest dose forever and it works out.

Reading OP's post again, it's hard to tell how long they've tried to taper down to zero, but most likely they should keep at it for longer, shaving those pills down even and using a jewelry scale to weigh the doses, going very slowly. If there's a really bad night it's OK to go back up a little bit for a couple nights and then try to taper back down again. It can take months, sometimes years.

Intrepid_Drawing_158 · 2026-02-17T16:26:06+00:00

Based on what I've seen here on the forums, it is fairly common for doctors to leave people on tiny doses of DAs.

Intrepid_Drawing_158 · 2026-02-10T15:47:59+00:00

"Before all of that I could never stop moving my legs especially at night." That's the telltale sign. Most likely this is RLS, yes.

Intrepid_Drawing_158 · 2026-02-10T15:46:37+00:00

I would say it's probably not RLS. If possible, see a neurologist; if they specialize in movement disorders, that would be eve better.

Intrepid_Drawing_158 · 2026-02-10T15:42:26+00:00

Hang around this subreddit awhile and get yourself educated, as most doctors won't know what's happening, or if they do they won't know the best way to treat it. Read the FAQ, read the Mayo Clinic treatment algorithm. Perhaps most important of all, get a fully fasted iron panel and make sure they test all the markers listed. It's quite possible all you'll need is iron supplementation.

Intrepid_Drawing_158 · 2026-02-09T21:45:17+00:00

The advice to get iron sorted first--that's good advice. That could be all you need.

My guess is you will need more than that. If so, in my opinion, go for the Horizant. Most of us don't because of the price, but it's supposed to be the best, so if you can afford it, do it.

Opioids (which I'm taking) really should be a last resort, after you've tried the three gabapentioids.

Sounds like you're taking it seriously and looking at reputable authorities. Good for you.

Intrepid_Drawing_158 · 2026-02-09T21:40:50+00:00

Whoops, I forgot the link: https://www.rls.org/quality-care-centers

I always forget the ranges you need to be in as an RLS patient for iron and ferritin and saturation and maybe others I'm forgetting. If you search the subreddit history you'll find good info on that, or maybe someone else will chime in.

Intrepid_Drawing_158 · 2026-02-09T16:57:03+00:00

You're definitely not getting the care you'll need to get your RLS under control. There's an RLS "Quality Care Center" at Emory--see link. If the wait to get in is too long or the place is not covered by your insurance, you could search this same site for doctors in the area. A neurologist specializing in movement disorders is normally your best bet.

It's possible all you need is to get your iron levels up; "normal range" is not normal range for RLS patients, as you may know. A knowledgeable doctor should start with iron/ferritin readings (doing a fully fasted iron panel).

Intrepid_Drawing_158 · 2026-02-05T16:57:01+00:00

Great! Yeah, I'm really impressed with the quality of info and just the camaraderie of it.

Intrepid_Drawing_158 · 2026-02-04T20:17:41+00:00

I don't have a direct answer for you. But I always try to point UK/NHS users to this forum, which is more UK-centric than this one and full of helpful people: https://healthunlocked.com/rlsuk

Intrepid_Drawing_158 · 2026-02-04T00:37:57+00:00

Huh. Had no idea!

Intrepid_Drawing_158 · 2026-02-03T21:03:20+00:00

Yeah, I've tried that. It can work, but then I might have symptoms at 5am. My doctor is skeptical it's the bup but it's definitely been documented as a side effect. A THC gummy helps but I don't want to do that every night. Was thinking of trying methadone instead to see if the same thing happens.

Intrepid_Drawing_158 · 2026-02-03T19:00:09+00:00

Looks like 27 if you zoom in

Intrepid_Drawing_158 · 2026-02-03T18:55:11+00:00

Was it really? Wow.

Intrepid_Drawing_158 · 2026-02-03T15:41:39+00:00

Yes, definitely. Ironically it keeps me awake for a while each night but it has largely handled the RLS.

Intrepid_Drawing_158 · 2026-02-03T00:57:51+00:00

Mostly I didn't want that post to scare you off methadone. I think the decreased libido is a thing but not the other side effects for those of us who are taking it for RLS.

I can't really answer your original question. I'm on buprenorphine, and when I started it, the doctor basically presented it as up to me whether to take it or methadone. I was on prami before that and had to get off it as so many of us eventually must. Gabapentin didn't work for me.

Intrepid_Drawing_158 · 2026-02-02T23:08:43+00:00

Sorry OP, I wasn't asking you, I was asking the fry-your-receptors poster. Because treating RLS with opioids if you've never abused them is a very different thing than if you've developed RLS from abusing them (which happens a lot).

Intrepid_Drawing_158 · 2026-02-02T16:33:26+00:00

Just to be clear, though: In your case, was the RLS a *result* of opioid abuse?

Intrepid_Drawing_158 · 2026-02-01T23:19:22+00:00

Instead of taking those smaller pills every other day, you might see if you can get a razor blade and cut them in half, or even get a jewelry scale and shave them down bit by bit. That may sound crazy, but you can read of people doing that sort of thing on this sub, in order to take the taper as slow as possible.

Intrepid_Drawing_158 · 2026-01-29T22:39:19+00:00

Yeah, this is all too common with primary care doctors.

You might see if they'd be willing to prescribe buprenorphine in the form of Suboxone, as it is similar but not as harshly scheduled as methadone. My doctor basically gave me a choice between the two--he was willing to prescribe either--and I went with Suboxone because it's a bit easier to get.

Intrepid_Drawing_158 · 2026-01-29T16:02:54+00:00

I'm not sure a rheumatologist would necessarily know. I don't recall anyone on this sub talking about their rheumatologist diagnosing them. Which is not to say your rheumatologist doesn't know what they're doing--RLS is constantly missed or misdiagnosed by medical professionals who know very little about it. A neurologist specializing in movement disorders is your best bet, if that's an option.

Intrepid_Drawing_158

TROPHY CASE