Help: I suffer really badly with RLS... - Restless Legs Syn...

Restless Legs Syndrome

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Pollyhb profile image
7 Replies

I suffer really badly with RLS and I'm now on Nueroprp 3mg and they have been working fantastically for about 10 months but now the symptoms are back. I'm devastated and can't face the thought of feeling like I did, I've tried ropinrole but made me throw up and throw a whitey every night then the patched worked. I don't drink caffeine after 6 tale moderate excercise every day have a routine for bed and still nothing works. I just can't bear the thought of it starting again. Any ideas?

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Pollyhb profile image
Pollyhb
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7 Replies
Pippins2 profile image
Pippins2

Hi,sometimes taking a break then starting the med again works.Known as a 'drug holiday' you stop it for a couple of weeks(longer if you can) then start over , it MIGHT work. However stopping a dopamine med will almost certainly ramp up your symptoms and they will be severe.Therefore strong pain meds will probably be needed to cover the period . Otherwise you could change treatment altogether and use a pain mec eg Tramadol or Gabapentin or Lyricz, Never stop any medication without seeking your doctors advice, good luck let us kno how you go ... Pipps

Pippins2 profile image
Pippins2

Meant to check have you recently started any new meds for anything else?

Pollyhb profile image
Pollyhb in reply to Pippins2

No nothing's changed

Pete-1 profile image
Pete-1 in reply to Pippins2

Hi Pippinsd2. Is you question aimed at me?

Anyway, no new drugs for quite a while.I have tweaked doses and times a bit though.

Pete-1 profile image
Pete-1

What is a whitey?

Windwalker profile image
Windwalker

I undersand your thoughts completely. I was at my doctor yesterday and at age 78, having suffered RLS for 30 of those years, and gone thru changes in meds., when the old one stopped working, and a new one had to be tried, he told me that I am in good health, have a great blood pressure, a very slow heartbeat, and all the signs I will live another 20 years or more.

This would have been great news for some, but I simply cringed at the thought that I would suffer like you and I and millions of others do, for the next twenty years.

When I get the feeling in my head, my throat makes it difficult to swallow, my hands start to ache, and my legs and feet start to be weakened and have the irresistible urge to move and then move again and again with relief and daylight so far away.

All the normal people are sleeping and we are walking the floor, leaning against the wall, or whatever you do to cope and doctors don't know how to describe it, treat it or even recognize that it exists, then how will we get help.

i have two brothers with RLS also, who have become alcoholics, self medicating rather than face the uncertainty of some doctor trying to treat them with off label meds or something they heard may work and I should want to live 20 more years like that. I think not, but then how do I reconcile the fact that I am inflicting a legacy onto future generations of my family if I voluntarily end my life. It is a conundrum.

I sincerely hope you find an answer for yourself, but finding what works for you is not helpful to me or ny of or brothers and sisters with this malady.

kdun profile image
kdun

I also suffer with severe RLS and I tried everything. my Dr. put me on Oxycodone about a year ago and they have been a godsend. As long as I take them at the same time everyday I am fine now.

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