restless legs

[valleygirl]

since i started taxol i have developed restless legs and its driving me nuts. has anyone else experienced this and what can i do to stop it?

[chrisy]

Yes. Driving me nuts too. Maybe some of the neuropathy helpers...l glutamine, alpha lipoic acid, b vitamins, acetylene l carnitine.

But since it's driving me nuts too, I'm probably not the best resource! Hopefully someone who has it figured it out will chime in!

[BonnieR]

I'm not much help since I had it too and it stopped because we stopped my chemo after 4 doses due to neuropathy! But it is thought that Glutamine helps. Perhaps your doctor has some medication that can intervene? Neurontin maybe???
Otherwise, I fall back on the old saying "when you're going through Hell, keep going" and keep your eye on the prize. Cold comfort, I know.
Keep the faith.

[rhondalea]

I've had RLS on and off for years. Until Taxol, I'd conquered it with magnesium. During Taxol, I had symptoms during the infusion* and also if I sat for too long late in the day, but not at any other times. Since then end of chemo, I haven't experienced it at all.

I took 2 grams of ALCAR (acetyl-l-carnitine), and my magnesium intake was (and is) about 600 mg/day. (I also took a bunch of other supplements, including B vitamins, but these two seemed to target RLS.) Calcium is alleged to have a benefit for RLS, so you might want to consider extra dairy intake or a supplement. Just be sure you get enough magnesium along with it.

I wish you the best in finding a solution, because RLS is the pits.

(*Imagine trying to run in place while sitting in the chair--that was me. What a bloody nuisance it was.)

[KsGal]

I also have this, but I am not on Taxol but taxotere. I even have it sitting in the treatment chair and it drives me nuts. At home it mostly happens at night when going to bed, and I really haven't found anything that helps except taking a lorazepam to knock myself out. I am on glutamine and B6 for neuropathy, but that hasn't seemed to have much been any help for the restless leg. Definitely ask they doctor if there is anything they can reccomend that could help. Otherwise, as said..all we can do is just keep on keeping on, and know that one day it will be better. I know its hard, hang in there. ((hugs))

[Pray]

All I can add is do not sit while you are having it walk around. Sitting only makes it worse. Good luck.

[Rich66]

Some get benefit from "Restful Legs" tabs from Walgreens. Enzymatic Sleep Tonight tabs have Ashwagndha, Magnolia/Honokiol which have anticancer properties as well as potentially helpful with RLS. Mom seems to be getting benefit between the two. Also seems to do better when she walks more.

[Bunty]

I've had RLS on and off for a few years, and I find if I take a couple of paracetamol tablets that usually calms it down. I wonder if those who get it during infusion whether it could be related to anti-nausea meds. I know I get very agitated and RLS with some anti-nausea meds.
Cheers Marie

[Cheryl D]

I too have restless leg and was on Taxotere and Magnesium supplements really helped.
Cheers,
Cheryl

[valleygirl]

OK don't laugh, this worked. I friend told me to put a bar of ivory soap under my sheets and i haven't had a problem since at night. I've been able to sleep through the night. I still had it couple times during the day but its been alot less then before.

[rhondalea]

Not laughing. :)

http://www.peoplespharmacy.com/2005/12/07/soap-under-the/

I have seen people try to explain why it works, but no one has done so to my satisfaction. Still, I can't argue with the fact that it *does* work. Might even work in the infusion chair if you recline during the infusion. Worth a shot, anyway.

[suzan w]

Ivory soap, eh? I have had restless legs most of my life. Sounds funny when I write that, most of the time now we travel in an RV!!! I am going to try the ivory soap.

[Les]

last year my daughter had a problem with restless legs and it was caused from low iron. It got much better when she started taking iron

[tricia keegan]

I was going to mention the ivory soap too!!:)

[NEDenise]

RLS sucks! I had it during Taxol too. Used to start about 5 minutes into the infusion, and last for days. Ativan helped. Walking helped. Was maxed out on Mg - don't know if it helped, but it sure didn't hurt. Wish I'd known about the Ivory soap thing! That might have been the magic bullet!

The bad news is...nothing made it go away completely. The good news is...it stopped about a week after my last Taxol infusion...and, knock wood...has never returned.

Hope you get some relief soon...but as Bonnie so sagely pointed out...RLS is a small price to pay if the result is kicking a little BC a%# :)
Denise

[rhondalea]

Ha, ha. Now I'm laughing.

Got to thinking about how my husband twitches and jumps as he drifts off every night (thereby maintaining my own state of wakefulness--some nights it's so bad, I exit the bed for the comfy couch). I've been feeding him magnesium (and a few other supplements), but although I can hand him horse pills, I can't make him swallow.

So yesterday, I bought some bars of Ivory. Last night, he got into bed to read, and a little bit later, I walked in and puttered a bit before climbing in beside him. He said to me, "I have a question." I looked at him attentively. He said, "WHY was there a bar of Ivory soap...?"

He'd removed it.

My attentive look became dagger-like. I said, "Put it back."

We then had a brief, but animated, discussion about the merits--he told me in no uncertain terms that I'm a total nut job. In spite of his shocking lack of respect, however, he's generally willing to do whatever makes me happy (well, except for taking the supplements, but he has to chew them so I suppose it's understandable), so the soap returned to its resting spot without further ado.

In the absence of a scientific explanation for how it works, I was relying heavily on the placebo effect. Given his reaction--amused and indulgent, but totally disbelieving--I did not have high hopes.

He didn't twitch even once last night. He woke rested and refreshed.

Amazing stuff.

[NEDenise]

Okay...anyone know what kind of soap stops men from snoring?

I tried the Ivory, but he kept spitting it out! :)
Denise

[rhondalea]

You did it wrong--just stuff half a bar up each nostril. That'll fix him.

[NEDenise]

Silly me! Don't I feel foolish!
So lucky to have an expert close at hand!
Thanks, my friend...I'll let you know how it works.
Denise