Feet

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Post Reply
amytazzi
Posts: 19
Joined: Wed Jan 10, 2007 2:50 am

Feet

Post by amytazzi »

Hi.
Recently diagnosed. The initial onset was mild, but quickly progressed. Symptoms mainly in feet. Tried neurotin and requip with no results. Next I will be trying Klonipon. Any one else with feet as their main problem? Any tips or help to alleviate the constant tingling,buzzing feeling would be much appreciated. I am distraught over the severity of symptoms and totally frustrated. Any ideas?

Amy

Neco
Posts: 2297
Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
Contact:

Post by Neco »

I am not able to 100% confirm it, but I believe I started out with symptoms in the feet, when I was about 18. I'd get a twitch/shake that felt like it was happening on the ankle joint that would annoy me, but I've always been paranoid about diabetes (in the family) and I would usually blow off those small episodes as me just needing to get up and go eat something. But looking back it probably did start in my feet.

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Is it Sara that had it mostly in her feet? I don't think she's posting here these days, but I know that at least one person, maybe two have said it's entirely in their feet. It could also be someone on the Yahoo board that has said this. Regardless, you are not alone. RLS has a strange way of being radically different (and horribly similar) within each of us.

Is there any reason you started with the anti-seizure drugs first? Other drugs are considered a better starting point these days when you have daily RLS, specifically the dopamine agonists.

Also, since it came on quickly and worsened quickly, have you and your doc ruled out any primary condition that could have caused the RLS? Maybe anti-depressants, other medicines (many worsen or even cause RLS), celiac disease, anemia, etc.? Of course, it's not a rule, but RLS tends to worsen most rapidly in secondary RLS cases (where the primary problem brings on the RLS).

Sorry you had to find us, Amy. Hope that you find what you need here.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

brandy
Posts: 350
Joined: Tue Jun 20, 2006 4:44 am
Location: Kentucky

Post by brandy »

My RLS has always presented primarily in my feet, although I also have it in my legs and occasionaly my wrists. Having someone massage my feet often helps, but mainly I can only find relief with medication and movement. One can often find me hopping around in the back of the movie theater in an attempt to calm my feet down a bit. You might also take a look at your diet, as there are a number of things that worsen RLS in general, such as caffeine, some meds (like benadryl) and other things. As you search around the site, you will find lists of things that have been shown to worsen RLS. Eliminate these and you might see some improvement. Some folks also find relief through supplements. I strongly encourage you to consider having a doctor check out things that might cause secondary RLS. Welcome to the board. I hope that you find welcome and comfort here and the courage you need to fight for your own health and Quality of Life. Keep us informed of what's going on with you.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

amytazzi
Posts: 19
Joined: Wed Jan 10, 2007 2:50 am

Feet

Post by amytazzi »

I have outruled other illnesses and I recently went off caffeine and zoloft. I am also taking vitamins, calcium, mag and zinc. Stopped taking requip as it was not helping but will be starting Klonipon soon. Actually feel a little better. Symptoms down by about 25%.Thanks for those you answered me.
Amy

amytazzi
Posts: 19
Joined: Wed Jan 10, 2007 2:50 am

Feet

Post by amytazzi »

Brandy,

Have you gotten any relief and if so how? Because I also have it in my feet I would be very interested to hear what worked for you.

Amy

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Amytazzi, you may be in luck. The ZOloft may have "started" the RLS. If so, it may do anything from stop completely to diminish some (since it's already stopped some already). It takes awhile for all the receptors to reset and work the way they did before. Maybe a few weeks more and you'll be much, much better.

What time of day do you have the sensations? Klonopin is most helpful for sensations that only occur at bedtime. If they occur earlier than that, you might not want Klonopin just because it can make you pretty tired. Something like Neurontin or Ultram might be much better since Requip didn't work. Or even Mirapex. When Requip doesn't work, Mirapex is a good next try. Well, at least you have several options. . .
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

amytazzi
Posts: 19
Joined: Wed Jan 10, 2007 2:50 am

Post by amytazzi »

Ann,
The thing is that I was on Zoloft before on and off and I never had an rls problem . What do u think?

Amy

amytazzi
Posts: 19
Joined: Wed Jan 10, 2007 2:50 am

Post by amytazzi »

Ann,
I have them all day but much worse after 8 PM

Amy

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I guess we can't even know for sure. But, the SSRIs really do alter our neurotransmitters. And sometimes, who knows why, this can either start RLS (secondary), or cause or latent primary RLS to start up. You can hope it's the former 8) . If it's the latter, then you'll always have RLS, but hopefully much less strongly.

Since you have it all the time, you might not find klonopin to be the best solution. It is primarily a sedative and many people take it and then are sort of knocked out. Some people do take it during the day effectively, but a lot can't. And, in terms of control, it's just not the more effective choice. If you had only nighttime symptoms, or only PLMS, and it didn't make you groggy, it could be a good option.

So, try it and see. The good thing is that when we get to the point we need drugs, is that there are a lot of options. The bad thing is that they all have side effects. We just get to keep trying until we get the right combo of symptom control and the least invasive side effects.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

tazzer
Posts: 626
Joined: Fri Mar 10, 2006 6:36 pm
Location: Northern Virginia
Contact:

Post by tazzer »

ann if drugs like zoloft can trigger rls, by taking something such as prozac which my doc put me on for a while in the mid 90's, i didn't take it but a few months, in your opinion, do you think it could have had a delayed response in sort of "waking my rls up" in early 2005?

dee
I feel like a science project!!!

“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Of course, I'm not a doc, but I wouldn't think so. Then again, who knows! They really don't know much about what happens in the brain when we play with these neurotransmitters. And, EVERY class of drugs that works for RLS plays with them. Some changes are thought to be permanent. So, it's possible that the Prozac could have changed something that set up the RLS. But, it seems from the literature I've read that it isn't the case - the reactions have all been relatively soon after taking the meds.

But, it brings up an interesting question, Dee: what would happen if we polled all people that have taken anti-depressants at ANY time in their life. Then we determined how many had RLS at some point AFTER taking the AD. I wonder what the percentage would be?

You know, in terms of brain stuff, what the researchers know is like what Columbus knew about the world before he set out. Not too darn much! Yet we take all the drugs and manufacture new ones all the time. I was reading about one drug - can't remember which one - that is an AD. THis was last year. They said the DO NOT KNOW how it works. Period. They don't even know what receptors it hits. Yikes.

Oh, yeah, that's not what this post was about. . .sorry about the little rant there. . . :oops:
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Anonymous

Post by Anonymous »

--
Last edited by Anonymous on Thu Mar 29, 2007 4:48 pm, edited 1 time in total.

brandy
Posts: 350
Joined: Tue Jun 20, 2006 4:44 am
Location: Kentucky

Post by brandy »

Amy - I was on Requip for about 2 years and it made a huge difference. But the I augmented (where the medication actually makes the RLS worse) and had to get off of the Requip and experimented around and am now on Neurontin and Ultram. When I have symptoms in spite of the medication, I find relief in movement (of course) and also in having someone rub my feet rather hard. Walking helps also, but be careful not to do too much too late, or it will interfere with your sleep. I can also remember at one point years ago finding relief from things like Icy Hot or Ben Gay. Hot water on my feet (such as soaking them during a pedicure or a bath) can also help. Keep working with your doctor. Check out the options on the Mayo Clinic Algorithm. Keep in mind that everyone's RLS is different and you have to find what works for you. Don't give up! Let us know what we can do to help.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

amytazzi
Posts: 19
Joined: Wed Jan 10, 2007 2:50 am

feet

Post by amytazzi »

I am actually feeling better. I gave up caffeine and Zoloft . It has only been three days and symptoms are doen about 60 % I am actually hopefull that I can beta this. After reuip and nerotin not working cloipon seems to be helping.

Amy

Post Reply