Fibromyalgia Support Group

Ok so I was dxed with intermittent RLS recently. I'm new to the game. I have two questions.

1. I've noticed that my legs will hurt like I've been running all day after I go to bed. Is that the pain part of RLS or just other junk? I've heard/read that RLS is painful, but having a hard time figuring out what is what since I don't always have that creepy crawly feeling.

2. I've been having the ants crawling up my legs feeling pretty much all day today. I'm on sinemet and have only taken in randomly(I'm on a as needed Rx). Always at night after I couldn't go to sleep because of itching or creepiness. I always go to sleep. Is it wise to try to take it during the day or do I need to just deal with it for the time being?

Thanks!

Hat, your question of the very tired feelings in your legs, the tightness, and pain yes, that's also RLS. Any feeling that you should move your legs to relieve pain/pressure/odd sensations, is RLS.

Yes, that ant crawling feeling is also RLS. RLS is mainly at night... but not ONLY at night, depends on the severity of your problems. Yes, you can take Sinemet anytime. that was the first medication I was put on as well, and I never had any problems with daytime sleepiness on it. The reason you drop off so fast and sleep so well after taking it, is not that it drugs you, it's that your legs are calm and you can actually sleep instead of being woken by jerks and cramps in your legs all night.

Do an experiment. Not always are RLS symptoms so bad that you consciously notice them. But try to go to sleep and you keep waking up anyway. Take the sinemet every night for a week. See if you don't sleep better every night. Take a smaller dose in the morning or early afternoon (head off symptoms before they start). Then go back to taking them only as you think you need them, when the legs are being so twitchy you need it to even think about falling asleep. You'll see that Sinemet doesn't make you sleepy (daytime) and that at night, you're having symptoms even when you're not consciously aware of it, because taking it nightly improves your sleep over when taken "as needed."

I love Sinemet, it acts fast, within 10 minutes usually. (My gabapentin takes about an hour to take effect.) The only downside to Sinemet is, eventually, you'll build up a tolerance to it, called augmentation, and you'll find you need more and more of it, to get the same effect. This is a problem with the medication itself and the way it acts on the body. And when you finally do have to switch off of it, you MUST taper the dose. Idiot doctor who told me to switch and "here try this requip" told me to stop the Sinemet cold turkey and take the other after being on Sinemet for 4 years. By midnight I was walking the floors my legs hurt so bad, and by 2am I was just about screaming with the pain. Your body becomes dependant on the drug after a while and you have to taper off the dosage. NEVER try to quit Sinemet cold turkey after taking it daily for a while. Believe me, you'll DEEPLY regret it.

How big a dose are you on? I think I started out on 3 tablets at bedtime, and wound up on 5 and needed to go to 6 when I was switched off it.

Magnesium and iron deficiencies are sometimes associated with it. For more on Magnesium and Fibromyalgia see this Mark London (MIT) article

http://web.mit.edu/london/www/magnesium.html

Some people like to get a little iron in their diet each day, and also use an iron skillet.

http://www.ctds.info/fibromyalgia-diet.html

Folic acid/ B-12 may help also.

Here are a couple of home remedies for itchy legs

***A fresh bar of soap in the sheets. REALLY. Some people swear this has helped. And when it stops helping they replace it with a fresh bar. Also helps some people with leg cramps.

You can try wrapped or unwrapped . Different people, different results

For testimonials visit this site:

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

***Vic's Vapour rub immediately before going to sleep ( tough timing for the fibro folks, lol). May need to reapply. Definitely do a small test area sometime to test for skin sensitivity to menthol.

Wikipedia has a great overview of RLS, or for more of a laymen's reading see this article:

http://www.helpguide.org/life/restless_leg_syndrome_rls.htm

Post edited by: Sswelteer, at: 07/18/2012 05:03 AM

Mo, I'm on 1-2 as needed for now. He wanted to try it out to see if it helped along with a sleep diary. I'll try the experiement starting this weekend just in case. I don't remember what mg I'm on. I'll come back and put that on here when I get a chance. I don't always get the jumpy creepy feeling, but I do get the "I've run 7 miles from a giant bear" feeling in them often.

Post edited by: hatbox121, at: 07/03/2012 05:13 AM

A Natural Medicine Journal article reviewing a number of studies, shows that in some Ekbom patients melatonin would want to be encouraged, and in some discouraged--- just to complicate life. Let me include some testimonials of people who found that melatonin increased suicidal ideation, and yet there are some studies that find melatonin improves depression. I know I'm repeating myself, but depression sux too, so here's that link again:

http://blog.drlark.com/blog/nutrition-for-women/does- melatonin-increase-or-cause-depression

Post edited by: Sswelteer, at: 07/03/2012 01:39 PM

We have my son on melatonin nightly and my daughter is on a blood pressure med for sleep issues as well. It runs in the family. I'm very odd in that sometimes I can't sleep and other times I can't wake up/stay awake. So it's difficult for me to know which night is what. I also can't take any meds that will knock me out because my son has asthma and is young so if he were to have an attack I need to be in a light enough sleep to get up to get his inhaler. All his attacks are at night.