Why do I have periods of time without RLS?

[k8samms]

I had a terrible month or two and then I had another month or so where I felt completely normal. I hoped that the previous nightmare was over but unfortunately it returned with a vengence. I don't know what I'm doing differently now than when I had no RLS symptoms. If this condition is caused by a faulty utilization of iron in part of the brain, then why wouldn't my symptoms be the same all of the time?

[D4]

Nobody has responded so I'll jump in.

Although it is good to make sure your brain iron levels are at the right level (serum ferritin), you can still have RLS problems even if those numbers are fine. So it's a good to monitor it, but it's not the only cause of RLS.

My main reaction to your post is if it were me, I'd be thankful for having some periods of time without RLS problems!

This board is a great resource, even if it's just to communicate with people that understand what you're going through. RLS can drive you crazy! Good luck

[ViewsAskew]

I'd agree with D4 - be thankful. They just don't know enough about it yet to answer that question. They just know what they see when they do brain autopsies, but not how it all works.

Many of us had it variably at some point and then we had it all the time. I had it with extreme variability (sometimes gone for months) for 30 years...in hindsight, I'd really like to be back in that time of my life. For me, I know what caused the problem, but many people do not. It just changes. I imagine the researchers want to know the answer as much as you do.

[k8samms]

I have learned a lot and it is so great just to talk to others who understand. If I ever have any more periods of time without RLS (which I'm doubting at the moment - but if I ever do), I will appreciate each minute of it!

[k8samms]

ViewsAskew,

So they can detect RLS in brain autopsies? That's fascinating.

I have actually had RLS for several years now but it was only in long car rides or flights longer than a couple of hours. I really had no idea that one day it would become a constant in my life and that I would go for so long without much sleep.

When I had that month or two without the RLS, I actually thought "Oh great, that nightmare is finally over." HA! Talk about naive or maybe it was just wishful thinking. But one thing I know for sure is that I will never take the ability to get a good night's sleep for granted any longer.

Thanks for all of your support here.

K

[ViewsAskew]

It may never become daily for you. My mom is almost 70 and has it infrequently as she always has. She's had it since her 20's and it's never really changed any.

[Polar Bear]

Hi K

Be so thankful that you have spells without symptoms. That must be bliss.

[k8samms]

That's amazing about your mom, ViewsAskew. Encouraging too. I will be very surprised if this goes away again as it is much more severe now. It's just different. But there's always a chance... and yes, it would be bliss if I got some relief from this once in a while.

[Neco]

It may never become daily for you. My mom is almost 70 and has it infrequently as she always has. She's had it since her 20's and it's never really changed any.

That's interesting, and almost contradicts the reality that for most RLS definitely seems to be a progressive condition.

[ViewsAskew]

My sister, so far, is just like my mom. She has is once in awhile. Has since she was a teen, but it doesn't change. She's now had it 30 years at the same level.

I do not think my mom had PLMs. My sister and I both do. I would never have treated my RLS; I treated my PLMs. That's what worsened my RLS. I honestly don't know if it would have worsened if I'd not augmented it by accident.

Guess we'll see what happens...