New Book on RLS

[welschrispy]

Has anyone read the new book about RLS? Possibly this is old news?

Navigating Life With Restless Leg Syndrome. By Andrew R Spector, MD, FAASM,FAAN

It seems to be reasonably up on the subject but at the end of the section about DAWS it says that some people will probably not recover from the damage.

This threw me completely! I am pretty certain that I have DAWS. It is now more than a year since I cold turkeyd of the dreaded Pramipexole. It is difficult to tell if I am getting better. I still suffer multiple days with depression, anxiety nausea and flu like symptoms . In some ways I am no better than I was six months ago. However, I keep hoping!

Does anyone have any information about this? I know that we may not have an answer yet but perhaps the author is wrong. I hope that he is very wrong but the rest of the book is quite sound so this has me worried.

[Madlegs1]

He is certainly a respected authority on RLS.

But ,one thing that we can be definite on ,is that each person's experience is unique.

So--- you may well have done damage, but it is quite likely that you can recover.

I would be looking at a diet that would help to build up your microbiome, your gut health, and avoid inflammation.

I'm sure Eryl will come on to give advice on this.

Don't lose heart. What you did was great. (Foolish ! But commendable😝)

Given time, self kindness and care, you will get back to normal.

Well-- as normal as any of us are going to get in these " interesting times"

All the very best.👍💚

[Joolsg]

I have read it.I suggest you email either Dr Mark Buchfuhrer or Dr Andy Berkowski. Both reply quickly.And both also mention DAWS and permanent damage from dopamine agonists.

It took me 18 months to recover mentally from withdrawal from Ropinirole.

So don't despair! There is STILL time for your dopamine receptors to recover.

Do something every day that gives you pleasure to reboot your dopamine receptors and make your body produce dopamine.

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[welschrispy in reply to Joolsg]

Thank you for this advice! I will do as you suggest. I am particularly intrigued by the idea of actually producing Dopamine ourselves.n allow weed to do is be happy. Great idea!!

[Sylviet]

I just got the book but haven’t read it yet. I am wondering if getting off Pramipexole could be a factor in why I seem to be treatment resistant to the antidepressants I am/have taken. I guess time will tell

[JunieBJones]

I just replied to CowgirlArtist and mentioned this very thing. What may the long term effects be of using a DA long term? For me it was ropinirole, gradually increased to 12mg/day. Tapering was hell and now a year later I still feel some of the same symptoms. I'm on oxycodone but it isn't covering the discomfort I feel. I've tried research this but am not finding much. What year was the book printed?

[welschrispy in reply to JunieBJones]

I think it's quite recent. In my opinion it fails to demonize Pramipexol quite as severely as I would like but otherwise it's not bad.

[Narcis]

I'm reading the book and for me is excellent. It describes quite well my way from Ropinerole to buprenorphine in 25 years and still my RLS is not controlled....