Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Thinking of cutting my legs off.... RLS whine

Hey Kevin, yes, it sure is a catch 22 sometimes....move enough to satisfy the rls monster, but too much messes with the AS (in my case, my feet).
It's much worse today. Was kind of hoping the requip would be working by now

Hey Dow, I tried that! Looked like a goof, but hey, whatever works, right?

Now YOU'RE going to think I'm nuts - I tried 3 different types of soap, and because my symptoms are all day long, I even walked around with the bars in my POCKETS during the day! How desperate is that? I even used some old fashioned, hand-made soap thinking the ingredients might be different.

Alas, it was a no go. But I smelled squeaky clean. Glad to hear it works for you though.

Hi Angie, stretching helps me too, although I don't have to do too many contortions like you to stretch my quads! haha. I've been known to hop out of bed and start stretching in the middle of the night. lol And doing lunges helps, or just squeezing my mucles really tight.

Thanks Em, am hoping to see a physio sooner rather than later. I've tried that when my IT band was tight from running a few years ago. Also, sounds dumb, but using a rolling pin on it works too! Thanks for the link!

Hey Kat! One day I really hope to get to TO to meet you kickers over there
I'm so sorry you get this too.
Ami made me SO much worse, it was crazy. Two days into RLS, I had to quit the ami, and it did help. And I sleep with an icepack under my feet - I look like a goon, but oh well, it works!
That's really interesting it gets worse before your infusions.... I've been off enbrel for months now... and I've wondered what would happen if I started taking it again....hmmm... you bring up an interesting point.
Thanks for that!

OK I'm only up to half the requip dose you're on, but I'm increasing it today. I swear, it's making me feel worse though. Now I really want to cut my legs off. It's like the augmentation is kicking in already, and for some reason, I'm itchy all over. Hope I'm not allergic to it! You're right that no one really knows until they get it - it's so hard for me to describe it to anyone other than it feels like my bone marrow needs to explode.
Glad to hear you have a doc who will work with you - does she want another patient? lol
By the way, didn't work for me at all, but I tried the soap thing - even carried it around in my pockets during the day! hahhaha

Too bad that the soap didn't work, it seems to be quite a controversial subject

found this:

Discussion on soap and RLS

I wonder if this means that breaking a mirror won't cause 7 years of bad luck, or that cats don't in fact steal the breath from babies after all?

But still, although this soap thing seems to be listed as one of those "old wives tales" (never understood that phrase) it is listed as "undetermined" in Snopes, and there are a few other ideas here to try:

Snopes on Leg Cramps

Hey Meggie, I would love it if you came to Toronto! Someday, hopefully ...

I've had the leg jiggles since I was a child. Used to shake the dinner table with it, and drove my mom nuts into the bargain. And the horrible horrible ache in my shins at night used to have me in agony. I would make up these scenarios as I lay in bed, in which I was running and I would pump my legs as I lay there. It was the only thing that eased it. I would have been 8 or so when that started. Mum says that both she and my grandmother had the same thing, so RLS runs in the family, but they always attributed it to growing pains.

It's funny, I still get a slight ache in my legs when I'm over tired on Remicade, it's the jiggling that subsides for a while after the infusion. It's wierd.

Warm hugs,