Just when I thought it was safe... - Restless Legs Syn...

Restless Legs Syndrome

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Just when I thought it was safe...

Minefrog profile image
6 Replies

Evenin' all!

I haven't posted on here for a while (although I've been reading and sympathising from afar). I've had a relatively RLS-freeish existence since starting the patches, but all of a sudden, the last two nights have been awful (as you can tell by the time of this post!). I'm trying to think whether the patches have been out if the fridge for any length of time as I know they become ineffectual if not kept refrigerated, but I don't think they have. So now I'm panicked that they aren't working any more. And they've been so fantastic! Well, I won't assume anything yet, I'll review at the same time tomorrow ;-) hopefully not! No need for responses, just nice to type about it as I lie, or should I say writhe, here trying not to cry. Thinking about getting up and making scones! Btw, did anyone see the cringeworthy article about RLS in Chat Magazine at Christmas? That was me, although I really didn't say much of what was written (A PR company has my name for when the press want an RLS interviewee), but it's all good publicity I suppose.

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Minefrog profile image
Minefrog
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6 Replies

The only time out of the fridge is during transit between the chemist and your fridge. Mine get delivered to my house from the chemist, so they are out of the fridge for a while til the man gets them to me. I think the leaflet says about transit, I think they would have to be not in a fridge for a long time for them not to be good, the reason if you are not aware, for keeping them in the fridge is, they will get crystals (sp) form on them out side the fridge, and you could get MORE of the ingredient quicker than you should....mmmmm. think i got that right.... It sounds more likely to be augmentation...:(

WOW, no, i used to get Chat, would have loved to have seen that article tho...

Hope its just a blip with the patch and they go back to working properly...

Prior to going on holiday I asked my doc about how long the patches would tolerate not being refrigerated, as I'd be staying in a B&B pre-flight and obviously carting them around airports/transfers at both ends of the flight, and he said up to 36 hours. I think you're experiencing augmentation, which I raised on here 2-3 days ago with some informative responses.

nightdancer profile image
nightdancer

or, RLS just rears it ugly head when we least expect it. I an go 3 or 4 wks without feeling it at all, take all the same meds, do all the same things day after day, and when the RLS wants to it will come and take over. It may last only a couple nights and then quiet down. It does not mean immediately that your meds that have stopped working., But, if it continues, then consider augmentation, or the fact` that RLS is progressve, too. Sometimes we just cannot fight it off. ;) Give it a few more nights, and let us know. good luck.

Minefrog profile image
Minefrog

Spot on, Nightdancer. Just as I'd hoped, it was an anomaly. It's happened before but not with such severity, but all gone again now. I think a hard session at the gym exacerbated things. I always knew exercise was bad for you! ;-)

Sessions profile image
Sessions

On the huge sheet of information I received with my Nuepro Patches, it clearly states to store the patches in 68-77 degrees F. That does not sound like refrigeration to me. Refrigerators are too cold for the patches.

Minefrog profile image
Minefrog

Where do you live Sessions? If in the US, I've read that the Neupro patches were redesigned for the US market so they no longer needed to be refrigerated. Could this explain it?

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