21 years...

[qwerty2007]

Hey everyone,

I've lurked this forum for years and just recently signed up for an account after they blocked outsiders from reading the discussions. I've always been comforted by stories here and the strength some of you guys have. You're always a kind, understanding, and loving community - which is rather unique on the Internet these days. So, since I have an account now, I thought I'd share my story/ramblings.

I just turned 21 a few months ago and have suffered from RLS pretty much since I was born. My parents have told me that when I was an infant my legs were constantly moving. I suffered from PLMD as a child/early teenager as well. Those symptoms have since subsided. I was formally diagnosed with RLS about five years ago or so. My doctor wants me to try medication to control the symptoms, but just looking at the list of side effects makes me think twice. Further, as a general rule I do not take habitual medications. In my experience, they tend to cause more problems than they solve. After taking it for a while, your body gets used to it, then you have to get a higher dosage, eventually switch meds, repeat this same process.

In any event, despite my almost moral dislike of these meds, I'm considering taking them. Over the last few years, my RLS has become extremely severe. I can't sit through an hour long class without almost violently shaking my legs. It seems like they are moving every waking moment. Whenever I stop for some rest - because moving your legs all the time is exhausting - the urge comes back with full force. I rarely get more than 3-4 hours of sleep. Sometimes I just lay in bed and kick my legs up and down really hard in a futile attempt to tire them. Never works.

I'm dealing with it now. But if it gets any worse... I'm not sure what to do. I don't think I could take it. It's a vicious cycle, though: my legs want to move, so I can't sleep. I can't sleep, so I'm not really alert during classes/friends/work, I'm failing at life so I'm depressed, I'm tired so I'm cranky and irritable towards all my friends.

One positive thing I can say about RLS, though, is that we all have pretty strong legs. Think about it: your legs are constantly getting a workout. haha. See, even something terrible like this has a silver lining.

Anyway, I just thought I would introduce myself and share a bit of my RLS story with you. What's the worst experience you've had with RLS? Would you classify yourself as having a severe case like mine, or something more mild? I'm interested in your stories and experiences.

-J

[Betty/WV]

Hi Qwerty2007: Glad to hear you joined us. I am 73 and had RLS for about 30 to 40 years or maybe longer. I didn't know what was wrong with me for along time. Then my daughter read an article called "Nightwalkers" and brought it to me and said "Mom, this is you". Thats when I started looking for information.

I've been made fun of by doctors, took all kinds of meds. Would sit on the edge of my bed crying because I was so tired and yet couldn't sleep. I don't know how I functioned all those years. When I found this site, I remember standing (cause I couldn't sit, my legs wouldn't let me) at the computer, crying, because I was so miserable. I was just typing away, pouring out my misery to these people that I didn't know. And found people who knew exactly where I was coming from. Even though our syptoms are all different in ways, they are all the same in ways.

This is where I am today, my family doctor is very understanding and has tried to help me. Even though he doesn't know much about RLS. He sent me to a young neurologist about a year ago. He admitted he also didn't know much about RLS. But he suggested Mirapex, which I take twice a day. (But if you go on it, make sure you start out at the lowest dose.) I at least am getting some sleep and some relief. It isn't perfect. I also take klonopin, 1/2 mg. at bedtime and if the Mirapex isn't working up to par, I take a tramadol. My doctor is going to wean me off the klonopin eventually.

So, we are fighting a battle. At least doctors are starting to recognize that there is such a condition as RLS. Don't give up, keep learning as much as you can about this horrible thing we are dealing with. Get Dr. B's books and read them. So much valuable information.

Welcome. I hope you find comfort and relief. I don't know if I have helped in anyway. But I'm sure you will hear from other RLSers. And I read their posts every day. And try to be an encouragement to others as they were to me. Take care. BETTY/WV Dr. B is Doctor Mark Buchfuhrer, who is an expert in RLS, has a clinic in Downey, Calif. and written a few books on the subject of RLS. ( I guess I was just assuming you knew who Dr. B, was) He wrote "Restless Legs Syndrome, Coping With Your Sleepless Nights." I got it off Amazon.com. Wonderful and helpful information.

[SquirmingSusan]

Welcome. It's good to read that people have been helped by this forum. I know it helped me a lot when I first started RLS meds, and then had problems with those meds. I've stuck around so I can pay it forward.

One thing you can do before resorting to medication is have your ferritin level checked. Ferritin is iron that is stored in your body, and the test is different from a regular serum iron test or test for anemia. Low ferritin levels are linked to worsened RLS in a large percentage of people. If it's low you can take supplements or have infusions to bring your levels up.

Also check out Jill Gunzel's website. Google "the RLS Rebel" and you'll find it. She talks about many ways of dealing with RLS instead of, or in addition to, medication.

Requip and Mirapex are the first line treatments for RLS as far a medications go. If you do take them, the most important thing to know is this: stay at the lowest possible dose that controls your symptoms. You can even start with half a pill if you get side effects from the whole pill, although good luck cutting a Requip in half. If you get a starter pack, and you find that the first pill works, stay at that dose and don't increase it even if though the package tells you to, or even if your doctor tells you to. Increasing the dose beyond what you need to control symptoms can result in bad things happening. Several of us have already made that mistake for you.

At some point it comes down to a quality of life issue. If you're not getting enough sleep to function, maybe it's time to consider medication.

Also know that there are many medications that can aggravate RLS, so do watch out for those. The worst are probably the OTC sleep meds, especially those containing Benedryl. But all of the sedating antihistamines can cause problems with RLS. It sounds like you don't take meds anyway, but others that can worsen RLS include antinausea meds (most are antihistamines) and antidepressants. Run away from any doctor who thinks your symptoms are caused by depression, and wants to prescribe an antidepressant to treat you.

As far as my own story goes, well... My RLS was relatively mild until I took Requip and increased the dose beyond what I needed, because the starter pack told me to. Now it's considered "refractory RLS" and I've tried just about everything on the list. Now I take a strong painkiller to control it.

I'm really not trying to scare you off medication, really. The dopamine agonists, like Mirapex and Requip, are truly wonder drugs which work extremely well, and don't cause problems in most people.

I hope you figure something out and can start getting some sleep.

[Neco]

I was diagnosed just after I turned 21.

Believe me, this is not something you want to do untreated.. If you are a lurker I'm sure you're probably aware of my situation, so I won't bore you with that stuff.

However, I am a very strong advocate for medication. Medication absolutely works if you find the right one, and the difference is night and day.

The best place to start is to show your doctor the Mayo Algorithm (in my signature) if you haven't already, and ask him to go by the guidelines in there as far as your treatment goes.

You don't have to start with habbit forming meds like opiates, or benzos. Starting with Requip or Mirapex would be a good place, and then you can move on to several options from there if they ultimately don't work, or end up making the problem worse..

As far as opiates go. You should remember, most people do NOT have problems with opiates over the long term, when it comes to RLS. Once you find a dose that works for you, you can often take it for years without increasing it. The biggest problems with dose increases come from the RLS itself, or faster than normal tolerance. Remember RLS is a progressive disease. It's only going to get worse as you age, and at best, your symptoms may simply stay where they are.

But you have a lot of options, and quality of life is (or should be) a basic human right. Living with untreated RLS is torture. Eventually you will reach a point where you just can't function, and then cave in and try some meds. Most people then kick themselves for not doing it sooner, although that regret is soon overcome by the relief of a return to normalcy in their daily lives (for the most part).

[Polar Bear]

Welcome Qwerty
I reiterate all that Betty, Susan and Zak have said, they have covered just about everything.
All I can say is that I have been a sufferer for about 35 years, and only started medications 3 years ago, mainly because that was when I became aware of Requip, actually I take the Ropinerole version, which you can actually split in a pill cutter, along with Tramadol, and a sleeping pill.
There came a point when quality of life became too affected and I could not go on without help.

And yes, sleeping next to someone is a big aggravation, perhaps it is the pressure of trying not to disturb your partner's sleep especially if there is work the next day.

I am 60, I have a regime of medication with mostly helps, occasionally there are hiccups, and I have to add a little extra, other days I can spread the meds out a little. My fear is that the time may come in later years when I don't have full control of my medication intake i.e. in a care situation, perhaps unable to say or indicate that things aren't working, or that I need extra help with this dreadful condition.

However you are young, there are now medications available, more recognition for rls, and the wonderful Dr B. and of course this site which has been my saviour.

Do not be afraid of medications if and when the time comes. there is no point in wasting your wonderful young years trying to cope when there is relief available.

[ViewsAskew]

Qwerty, I am one who waited - I was in my late 30's before I went for help.

I honestly don't know if it helped or it didn't and I don't know if it would have been better to go sooner than later. Yes, medication has helped. But, it's caused other problems too. I honestly can't say I know if the help has been greater than the additional problems. Probably.

I do know that if I could do it again, I'd do it differently. I'd know much more than I did. I'd read EVERY book out there and I'd know what the likely problems would be. That way I could immediately do something if it seemed not to be working. I was much too passive in the beginning.

As an aside, we made it so people couldn't see the forum because of registration and spam problems. Just curious - how did it feel to not be able to see the board and to be required to register?

[runkrun]

querty, Welcome to this wonderful group of individuals who share their experience strength and hope for other RLS sufferers. I did'nt want to be on medications for the rest of my life either, but it's all about "quality of life". Due to lack of sleep and the severity of my disorder,I was either going to fall asleep at the wheel or jump of a tall bridge! And of course if we are miserable, the ones we love also suffer. I have been on medication for the last 12 yrs, have had some ups and downs, but for the most part I can sleep and be symptom free. I encourage you to get on medication soon. If you were diabetic or have cancer would you not take medication? Our disorder can be just as serious for our wellbeing. Good luck and glad you're here!

[qwerty2007]

Thanks for the response everyone!

It really is getting worse. Just in the last year or so, I would say that my symptoms have at least doubled in severity. While I don't want to go on any type of medication, I think that it'll probably become a necessity in the next few months. Unfortunately.

As far as having to register, I didn't mind it too much. Although it did take me a few weeks to actually get around to doing it. I do think it would be a good idea to make the forum visible to outside users, but make it so that they can't participate until they register. Just my opinion. But then again, if you had done that to begin with, I never would have taken the plunge and registered. So you have both sides of coin, I guess.

[ViewsAskew]

We probably wouldn't have changed the visibility of the board to non-registered people, except we were fighting spam registrations and were out of easy options. It's a long story, but part of our drastic fix meant that we had to change who could see the board. I'm glad you didn't find it onerous and felt it was worth it to register. I can't know if other people feel similarly, but at least we know that some people are likely to feel as you did, which is reassuring.

[riffir]

As a new person, who never saw the forum before it was private, I can say it doesn't bother me to have to register in order to view what is being written. Although, like mentioned earlier, I wouldn't have ever posted anything had I not been forced to join. Just read the content, and looked for advice that way.

[ViewsAskew]

riffir, that makes sense - you never saw it, didn't know what you were missing. Glad you joined. We have some viewers that have never joined and have been reading for years. I have to wonder how they feel. They can't know that we did it to battle cyberspam, just that they can't see it now.