New to the group

[CarolWR]

This is such an amazing group. I signed up awhile ago and have spent time browsing the many posts. It's great that so many people are willing to give of their time and knowledge.

In looking back, I think I've had very low level rls symptoms much of my life - I just didn't recognize them and they didn't really cause problems. The symptoms "blossomed" about 5 years ago, and it's been quite a change of life for me. I've taken gabapentin (worked fairly well for almost a year and then augmented), requip (had bad side effects and didn't really work that well), and finally mirapex (worse side effects with no real help). Now I'm managing on my own and hope to stay that way for awhile. I've tried many symptom "solutions", but the only one that works fairly consistently for me is using a heating pad. I wrote about that last week in the non-pharmacological group/string.

I wish I could find an rls specialist who had both knowledge and time in an appt. to talk over questions and concerns. My recommended specialist was knowledgeable to a point but treated patients like in a factory - in and out in 15 minutes no matter what. My variety of ways to combat this were not that successful. I left him and transferred my records to another neurologist who, according to his bio and his staff, dealt with rls patients. Wouldn't you know...he gave me the time needed but was not that knowledgeable.

I'm starting to have a new symptom...leg pains during the day. I know rls is unpredictable, and I'm just hoping that this new development is temporary. I took an early morning walk today and have had leg pain today ever since. I have read that some people warn against too much exercise in the evening, but now I wonder if a simple walk can aggravate this new symptom. RLS is really one big guessing game.

Thanks in advance for any comments or suggestions.

[SquirmingSusan]

Carol, there are some things in your post that make me go "hmmm" and I hope you don't mind me asking you about them.

You say you had augmentation from gabapentin, but that drug doesn't have that problem. Augmentation is specific to the dopamine agonists, like Mirapex and Requip, as I understand it. Gabapentin usually just becomes ineffective over time.

Did the Mirapex or Requip actually do anything for your RLS, or did you just get side effects? Or were the side effects so bad that you couldn't raise the dose until you got relief? The reason I'm asking is that many RLS experts believe that responding to the dopamine agonists is diagnostic for RLS, and not responding to them usually means that it's not RLS. There are other conditions that mimic RLS that have confused even the experts.

Does walking or moving your legs help your RLS? This is one of the main criteria for diagnosing RLS. The other criteria are: it's worse in the evening, or there is a strong circadian component (unless you have it 24 hours a day), it's brought on by lying or sitting still, and you feel an uncontrollable urge to move, with or without weird sensations or pain.

RLS can certainly be painful, but even the pain should be lessened by movement if the pain is part of the RLS.

About exercise - it seems like exercise can cause a lot of problems in the short term, but if you do moderate exercise often, over the long term it tends to help. It varies from person to person what time of day is best to avoid aggravating the RLS.

[CarolWR]

Susan,
Thanks for your questions and comments. I'll be glad to answer your questions... I have the typical symptoms of rls - walking/moving my legs definitely helps the rls, it is worse in the evening although I do have it sometimes during the day, and I know all about the uncontrollable urge to move my legs. When I do have pain it seems to radiate down my legs and can bother my ankles at times. It's not shooting pain. Movement/stretching does help against pain. I stretch a lot, especially before bed.

I just re-read about augmentation, and this is not what happened when I used the gabapentin. It just began to lose effectiveness even though I took increasing amounts. The symptoms did not become worse, so it appears that I did not experience augmentation after all.

I took the gabapentin for over a year, with dosages slowly increasing up to 1800 mg. It definitely brought me some (but not consistent or complete) relief...I was just worried about the increasing dosages so that's why I stopped. Even at 6 pills/day, the effectiveness was decreasing..

Requip - I tried this two different times with the same results: began with .25 mg and worked up to 3 mg. Side effects in two weeks included nausea, upset stomach, and didn't help the restlessness much at all.

Mirapex - I took this 2 1/2 months really wanting it to work. However, I had periodic fainting and vomiting (4x), with vague nausea and stomach upset. I worked up to 3 pills/night. With all this, I only slept 3-5 straight hours a night.

Again, thanks for taking the time to respond to my post.
Carol

[badnights]

Like so many people posting here, you're refractory (the DAs don't work for whatever reason). I sometimes wonder if there are any people for whom the DAs do work, but of course there are. Still, it's such a common refrain ... the approved meds don't work. I'm impressed you're managing without meds for the time being.

Maybe the new pain you're experiencing is something different, unrelated to RLS? You mention that movement/stretching helps against pain and that you stretch before bed but it's not clear to me if the stretching is used only as a preventative measure, or if it relieves the pain while the pain is happening. Also, is there an urge to move associated with the pain?

I wouldn't want you to ignore an important medical problem because you thought it was part of the RLS, only to find out later that it was something else.

[SquirmingSusan]

Carol, I wonder if Lyrica might help you. It work in a similar way to gabapentin, but doesn't seem to have the problem with needing more and more to control the symptoms. That might be an option to try before moving on to the narcotic painkillers.

The painkillers work for most people, but it can be a hassle finding a doctor who is willing to prescribe them for a chronic condition. But they do work well and have low side effects.

I agree that you need to find a doctor who has time and experience treating RLS. Most doctors are OK with prescribing the DAs, but when those don't work they don't know what to do. But there are some good ones out there.

[CarolWR]

Beth and Susan,

Thanks for your responses! It's so helpful to get others' opinions. I am trying to do without meds at this time, and as I posted elsewhere the heating pad gets me through the night fairly well. Still, some nights are better than others. I do bedtime stretching for prevention purposes and/or to help alleviate the leg restlessness....and it also just feels good to my legs. Occasionally I get up for a few minutes during the night and stretch to relieve the feelings.

The leg pain is possibly associated with a concurrent problem with walking - leg pain increases the longer I walk or am on my feet. I'm working with a therapist on this issue.

Carol

[badnights]

Carol, I'm glad things are getting worked out. Sounds like you can make a few minor lifestyle changes to accomodate the need to walk around a bit in the middle of the night, and not lose any quality of life.

Have you read Jill Gunzel's book "Restless Legs Syndrome, The RLS Rebel's Survival Guide"? She describes a variety of non-pharma'l methods she uses to tame or eliminate RLS symptoms when they arise. Some of it is common sense, or what you are doing anyway, but a lot of it was stuff I hadn't thought of. It's very useful stuff as far as it goes. (and it only goes as far as helping you get to sleep - there seem to be no tricks to stop it from waking you up)

If you don't have it, it's probably worth picking up a copy.

I hope your leg pain gets resolved - you certainly don't need to be getting pain from doing one of the few things that relieves RLS. Are they trying to figure out what's causing it?

[ViewsAskew]

Hi Carol - nothing I can think of to add, but wanted to welcome you. Hope that you get it figured out.