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

Thanks Molly. Give Houndette a pat for me.

Hi Beth, yes, I agree, coffee does make rls worse. I cut it out, and it helps, but I guess not enough. I couldn't imagine trying to take care of kids while dealing with this - you are one tough mama. Makes my rls look like fun. lol
Hope you're able to get some good zzzs tonight.

Thanks gerri, I'll have to check that one out. I was using melatonin to help me sleep, but I had to resort to the big gun meds to flat-out knock me out when I'm in this much pain. Hopefully, once it gets under better control I'll be able to get down to naturopathic sleep stuff again. Hope you're doing ok these days.

Laurie - how is Dany doing these days? He's still nsd isn't he? Hope he's doing well.
Acupuncture is definitely something I want to try for this. I've researched it, and a whole bunch of studies showed it didn't work so well.... but it did work a little for some people. Couldn't hurt to try though, right?
I was actually tapering off a small dose of amitryptyline when the rls started, and I stopped taking it immediately because I remember reading it could make rls worse. Other than that, I wasn't taking anything, and the only meds I'm on now are the ones that moderately help the rls. I keep wondering if it started because I was under alot of stress at that time. Also, I had finished tapering off a huge dose of prednisone 3 weeks before it started. Both my gp and neuro don't think that had anything to do with it. Who knows, really. Could be autoimmune maybe.
Anyway, hope you're doing well too. Thanks for the reply and suggestions!

I know lack of magnesium & potassium causes RLS symptoms. most of us are very, very deficient in minerals. My legs/feet always hurt until I started taking better minerals. now it's not so bad.

hope you feel better soon!

you have to remember that most 'studies' with acupuncture are from non-believing sources. most studes of alternative therapies are skewed. only you can determine if it works or not!

Hi Possi! Lots of hugs to you. That's so great the docs were able to help that girl. I love hearing stories like that - with happy endings, I mean. Gives me hope. I dream of doing the Mayo clinic thing where I can bounce ideas off of all the docs I need so I can figure this out, and get on with my life. I'll be moving to Phoenix at the end of this year, and we'll be living 15 mins away from Mayo clinic, so maybe it will happen. I'll keep you posted.
I sure hope you and DH doing ok these days.

Hi Mama from Montana! I love MT. Gorgeous, and I swear it's the most underrated state I've ever been to. I was there to try the radon mines. Have you tried that? So many people swear by it, and there are a good number of quality studies that actually back it up. Didn't work at all for me though - go figure!
Feet pain is terrrrrrible. I had a foot MRI earlier this year because my feet were getting really bad, and NOTHING showed up except for a recent ankle sprain, which apparently, I didn't even notice. Strange. Anyway, apparently the MRI showed it's not mechanical or physical, and the neurologist said it's not neuropathic even though it's accompanied by on-fire and buzzing feelings. Soooo I guess that leads us back to the "all in my head" hypothesis. GREAT.
Do you mind if I ask why the foot pain and how your physio is treating it? I think the rls and feet pain may be linked and I just discovered I have physio coverage. I'll try anything at this point.
Thanks!