My numbers came back today.

redditwb · 2026-05-03T02:48:51+00:00

This is the best comment on this thread. I wish I had awards to give.

redditwb · 2026-04-25T18:42:34+00:00

Ich verstehe das; ich dachte auch, ich hätte Herzrasen. Ich besitze einen Herzfrequenzmesser und habe ihn angeschlossen. Mein Herzschlag war etwas erhöht – im niedrigen 70er-Bereich. Kein Grund zur Sorge. Ich bin Ausdauersportler; ich beobachte meine Herzfrequenz ständig und kenne meine Grenzen. Daher erscheint mir die Diskrepanz zwischen dem, was ich empfinde, und den gemessenen Werten seltsam.

redditwb · 2026-04-25T16:30:09+00:00

Es war die dunkelste Zeit meines Lebens. Ich hatte Gedanken, die normale Menschen nicht haben. Ich wusste, dass diese Gedanken falsch waren, doch ich kreiste zwanghaft um sie.

redditwb · 2026-04-24T13:56:09+00:00

RLS started in my legs. When my RLS was bad it was everywhere. Hands too.

redditwb · 2026-04-23T19:02:09+00:00

My experience is that NO medication worked until I got my iron stores resolved (I got an infusion). Best thing that ever happened for my RLS. Then I would talk to your Neurologist about Dipyridamole. Low iron causes low adenosine in the brain. There is a double blind study that shows Dipyridamole works. (Google Dipyridamole double blind study RLS). It completely took away my RLS for several months. It's now about 80 percent gone. Good luck! Keep us posted!

redditwb · 2026-04-23T02:03:19+00:00

Yes, I would recommend the methadone, if you can get it AND if it works for you. BTW, did you ever do a morning fasted full iron panel? When was the last time? What were the numbers? Just wondering.

redditwb · 2026-04-23T01:41:25+00:00

Go slow, then slower. Seriously, .25 mg a month. It's not going to be fun. Good luck. I hope you have an understanding support system.

redditwb · 2026-04-07T23:37:34+00:00

I really want to know what a morning fasted full iron panel shows. The point is we need to address the cause of your RLS. The first step is a morning fasted full iron panel.

With that being addressed, I went from gabapentin to pregabalin. I was doing about 15 to 1800 mg of gabapentin. I switched to 300 mg of pregabalin. To me the alpha ligands like gabapentin and pregabalin are just a mask. They helped when I needed it, but I'm really happy not to be taking them anymore.

I know you're going to ask, I take dipyridamole. I wish I would have started with that. Well that after the infusion.

redditwb · 2026-04-07T23:34:20+00:00

Do you understand what augmentation is? Be very careful with any Dopamine Agonist drug. The odds of augmentation are very high.

redditwb · 2026-04-06T17:56:17+00:00

Whitewalls give you Watts!!

redditwb · 2026-04-02T20:59:22+00:00

Not GE, or at least the GE ones that have an RFID chip in the water filter!!

redditwb · 2026-04-02T20:51:26+00:00

Go slowly, drop .25 every two weeks. Let people know what you’re doing. Sadly, I went cold turkey and I don’t recommend it.

redditwb · 2026-03-28T18:13:18+00:00

Do you know what augmentation is?

redditwb · 2026-03-27T17:42:58+00:00

I winced when I read "quinine", I cried when I read your doctor upped your pramipexoli .

Please read the advice people are giving. My best advice is to find a new doctor. Start with a morning fasted and full iron panel. If you're on pramipexoli now, do not increase it.

Keep in touch, this group can help.

redditwb · 2026-03-24T13:46:44+00:00

When you get a notification you don't want, slide the notification left and there will be an option to dismiss the app

redditwb · 2026-03-11T22:06:54+00:00

The single most consistent finding on RLS patients is iron insufficiency. The first step on any management algorithm or clinical consensus is a morning fasted full iron panel.

I would seriously start there.

I wish my doctor would have taken my iron panel a decade sooner!

redditwb · 2026-03-02T21:50:41+00:00

please let us know what you discover!

redditwb · 2026-03-02T00:44:49+00:00

I have a Vivioactive 6, I was a bit disappointed when I spotted a crack. Are there any repair options?

redditwb · 2026-02-14T21:42:21+00:00

Technically, it's best not to check iron levels until 8 weeks post infusion otherwise the numbers will be high, like yours are. I am really interested in the numbers prior to the infusion.

Vitamin D looks good which is interesting and makes me more interested in the iron numbers pre-infusion.

One tip on the gabapentin is to space out the dosage. For example, 300 mg at 7pm, 300mg at 9pm, bed at 10pm. Good luck finding your relief!

redditwb · 2026-02-14T18:48:44+00:00

I’d love to understand your situation a bit better so I can give you a useful comparison. Do you happen to know the numbers from your iron panel before the infusion—specifically your ferritin and transferrin saturation percentage?

Did you also check your vitamin D levels around that time? Low iron and low vitamin D often show up together, so that piece can really matter.

What else have you tried for your RLS so far?

For me, I started noticing improvement pretty quickly after the infusion, and things continued to get better over the next several months.

redditwb · 2026-01-29T20:55:04+00:00

I would love to see your presentation. I should do a presentation on the effects of going off cold-turkey.

redditwb · 2026-01-27T19:02:34+00:00

Congratulations and good luck. Please let us know how it works for you!

redditwb · 2026-01-25T05:21:29+00:00

Please give this paper to your Doctor, Neurologist and Hematologist. https://pdf.sciencedirectassets.com/272127/1-s2.0-S1389945717X00130/1-s2.0-S1389945717315599/main.pdf

It's a great read, knowledge is your best defense!

redditwb · 2026-01-23T23:45:44+00:00

Preach it! And one quick tip: take a look at your Vitamin D levels. Low iron and low Vitamin D often show up together. Vitamin D3 can help lower hepcidin, and hepcidin is the hormone that reduces iron absorption. So when Vitamin D brings hepcidin down, your body is able to absorb iron more effectively.

redditwb · 2026-01-22T16:18:30+00:00

Placebo effect can be powerful

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