A breakthrough!

[miahallen]

Hi, my name is Jeremiah and I’ve been suffering from RLS for about 3 years. I did not know what it was for a long time, but learned about proper RLS a few months ago from my SIL. I had just been bearing it for quite a while, but I had a breakthrough yesterday, and thought I’d share with you all.

I am now 32 years old. 3 ½ years ago, I completed an enlistment in the US Army. At 6’3” and 220lbs. at that time, I exercised regularly and was reasonably in shape. My wife and I and our two kids moved from Army living to our new civilian life without any major disruptions. Things were going well. I continued to exercise, running with my wife, but with less frequency or regularity as demanded while I was on active duty. Our diet had always been fairly healthy; we don’t eat out much, and have always preferred home cooked fresh foods. Again, this did not change when I left the service.

However, in the spring of 2010 (almost a year into civilian life) I started experiencing RLS for the first time. I didn’t know what it was….I explained it to my wife like this. “I get the urge to stretch out my joints, but no matter the amount of stretching I do, the urge is not satisfied.” I did not investigate the problem, as it was not really affecting my lifestyle much. But it continued to bother me for several years.

Over the past year, I’ve made some pretty drastic lifestyle changes. In the spring of 2011 I quit smoking. In July 2011, I quit drinking coffee (I drank coffee heavily in the past). Both of those changes were prompted by my GERD (aka “acid reflux”), which I did to get off the Nexium medication I has been taking for years. I don’t want to get off subject, but I mention this because these seem to be common steps to reduce RLS as well. This summer, my wife has noticed she has sensitivity to wheat, and we’ve become aware of the horrible things happening in our food supply (MSG, Aspartame, Saccharine, glutamates, GMOs, etc…) and we have been attempting to improve our diets even more with organic, non-GMO products. I also started taking daily vitamins & fish oils last summer; I’m very vigilant with my scheduled intake.

Since getting out of the service in May 2009, I have gained about 15lbs, so I’m up to about 235 right now (and still 6’3”).

Earlier this year, my wife and I bought bicycles, and instead of running, we have been doing much more riding this past summer. It has been wonderful and I’ve really enjoyed it. I have noticed that I’ve also not suffered from RLS all summer….NOT EVEN ONCE! Then yesterday, I went out for a brisk 2 mile walk after dinner, much of the time I had my 4 year old daughter on my shoulders. LAST NIGHT I HAD THE WORST RLS I’VE EVER EXPERIENCED! I woke up 7 or 8 times, and I was having constant RLS with twitching.

So I am theorizing a breakthrough…the impact of a brisk walk or run is a trigger for my RLS.

I will be investigating this more and will report back if this is a fluke, or if I’m onto something. I have a renewed desire to lose a few pounds, so I will not be slacking on my exercise, but I will be alternating my routines to see how it affects my RLS….I’m excited at the prospect of being able to control it without any medications.

[ViewsAskew]

Many of us notice that we do best with moderate exercise, done regularly. When we don't exercise, the WED is worse. When we exericse and are not used to it, WED is worse. When we push ourselves past the moderate, WED is worse.

It doesn't apply to everyone, but there was research a few years ago that found it true for many in the study.

Hopefully this will continue to work for you. As you intimated, it's very hard to establish cause and effect with what we do . We think we have it figured out and - WHAM - we find we're wrong. Many of us also have found that what works for awhile to control it stops working at some point. I've had control many times, only to eventually not have control. Here's hoping that period lasts for a long time for you.

Do keep us informed. Even if you don't like being here (and in one way, none of us does), your experiences add to the richness of the community and help others.

[Polar Bear]

Welcome Jeremiah - We look forward to your posts on your progress.
Good luck on coping without medications.

[badnights]

I'm one of the people who can exercise strenuously regularly and have no ill effect on my WED. In fact, if I reduce the amount I exercise, maybe it gets worse (or maybe that was just coincidence). I think what Ann said about change applies to most of us: if we change the amount or timing of our exercise, this trigger the WED. But is a change in the mode of exercise also able to trigger it? It seems odd, but not impossible.

Another possible reason (besides a change in level of exercise) is that running is harder on the back, and if the spinal cord is involved in generating the symptoms ... but there is very little evidence pointing to that, only some indications that feedback between the peripheral nerves and the brainstem might be involved, and that feedback must necessarily travel the spinal column. All speculation.

Please do keep us informed about your experiences! And I hope it's not just a random fluctuation in intensity of the sort that fools us :\

[miahallen]

No more running, and no more RLS as of yet.

[badnights]

Wow. I wonder what's going on. I wonder how many different sub-varieties of WED there are.

[ViewsAskew]

Wow. I wonder what's going on. I wonder how many different sub-varieties of WED there are.

A LOT! There have to be - they've identify at least 5 genes. We can have any combination of those. The combinations must make for differing symptoms and resolutions.

[miahallen]

Well, last night I had some RLS....not bad, but it took me an hour to get to sleep. Still not running/walking...but I didn't excercise yet this week, so maybe I need to get out there Maybe this theory will be debunked....I'll be in touch.

[ViewsAskew]

Well, last night I had some RLS....not bad, but it took me an hour to get to sleep. Still not running/walking...but I didn't excercise yet this week, so maybe I need to get out there Maybe this theory will be debunked....I'll be in touch.

Whether it continues to work or not, you've had a nice break from it. That's a good thing!

Thanks for keeping us updated.

[majoraward]

When I knew I had RLS pretty bad years ago I was attempting to get into perfect shape to fight it, or so I thought. I began walking, then jogging, running and it became almost an addiction. I would jog and run in the morning and the evening everyday. I was in the best shape of my life and I was about 47 years old. The RLS was becoming increasingly worse and I realized that it was partly from exercise. I quit running at night and only ran in the morning. This helped for awhile but as time went on my sleep became worse and the exerciseing had to stop. Before long I was gaining weight and still the RLS became worse. I had to stop drinking anything with alcohol, gave up taking equal sweetners because it made RLS worse for me too. Now it has been several more years and I always have RLS and I do as little physical activitity as I can. I'm as strong as a horse and I get carried away sometimes still, but if I do I won't sleep for a day or two.

I gained loads of weight but eventually gradually lost weight mostly through weight watchers. I need to lose more but it is almost impossible without exercise and the craving for food from the meds I take. So I am stuck in limbo trying to keep my weight down without exercising much at all. I really used to enjoy jogging and running but even walking too much can mess up my RLS so that the meds appear not to work. It is like tight rope walking, very just a little bit to one side and you lose balance or in this case RLS becomes worse. So exercise is out, even moderate exercise or it is many wakeful evenings without sleep. There are so many things I have given up like movie theaters, theatres, plays, concerts, going out to eat, except early, not at night. I even miss going to drive-in movie theaters, and they still have one a few miles from us, but I just wouldn't be able to sit through a movie in a car. At work I am forced to go to meetings but it is almost more than I can take recently. I just can't sit in a chair for an hour long or longer meeting, but I do and it is hell.

Probably the last straw was my huckelberry pie. I love it. My wife has the huckleberries flown in from southeastern Washington and she makes me the pies on special ocassions, they are my favorite thing in all the world to eat. They are also loaded with sugar. The last time I had one was in August and maybe I will be able to have a small piece next time but it kept me up in August from eating a piece, so there goes the pie too.