So what's different?

For everything and anything else not covered in the other RLS sections.
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PeteB
Posts: 27
Joined: Thu Oct 07, 2004 3:16 pm

So what's different?

Post by PeteB »

I'm lucky? I've had a good spell for, oh about 2 months now. Very little RLS anywhere on my body.

So how come, that at one time I was going stark raving crazy with my legs and arms for hours and hours at night - and now - it's fine?

This suggests to me that there is *something* which has changed. Which, therefore means that if I for whatever reason do something different, then the RLS reacts to it. It works both ways - there must be something which brings it on, the absence (or opposite) of which gets rid of the RLS.

These are the life style changes over the past 3 months.

Eating: No more Ice cream. Cut back on Marmite (which I used to think helped reduce RLS!!). More carbs - less protein.
Alcohol: I used to be off it all together. Now I have a drink at the weekends (knocks me out). During the week no alcohol.
Medication: Same. No change (Which is interesting).
Work: Less stress
Domestic life: Mega stressed

I can't think of anything else relevant that can explain why it's 'gone'.

The bottom line though, is that if I had it and now I haven't then *surely* there must be something which made it happen or something which made it go away.

There's hope yet!!!

Knowing my luck - it'll come back with a vengance tonight!!!!

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Post by Sara »

Hi, Pete--

I have wondered the very same things, over and over. When I joined this forum, my RLS was "progressing" at what felt to me like an alarming rate all the sudden. My symptoms went from a couple nights a week when I was especially tired, to nightly, and then to mornings, too, and finally to periods of 24/7 (though thankfully relatively mild midday) RLS.

I figured I was in BIG trouble, because if it continued like this, I would be crippled by my mid-40s.

But, then the symptoms backed off, and actually haven't been all that bad overall, though very persistent, for the past several months. I'm having nightly RLS, most of the time, but it's gotten no worse in intensity.

So. although I still believe my RLS is "progressing" over time, it's obviously not a steady "always forward" progression.

Like you, I've looked back over and over trying to tie specific lifestyle or diet differences to my RLS, with no results, yet. A couple of us are trying to remember to keep journals of our symptoms and lifestyle to help us look for patterns. Maybe you could also? I'll be curious if any of us can figure anything out from them, but worth a try anyway. Without documentation, I find it's too hard for me to pair up circumstances and symptoms.

I also have to wonder if there's some "overall" physiological fluctuation which affects RLS. It's a dopamine "issue", and I believe that all our brain chemicals do fluctuate for a number of reasons. I have a chronic anxiety disorder, and although I CAN often trace my anxiety levels to diet/lifestyle/health issues, there ARE times when -- even if I seem to be "doing everything right"-- I still have higher than normal anxiety levels. They don't APPEAR to be "related" directly to ANYTHING... and believe me, I've thought, kept track, researched, studied my own personal patterns, etc. :?

Interesting to think about it.

Hope tonight's NOT bad, Pete.

Sara

ViewsAskew
Moderator
Posts: 16657
Joined: Thu Oct 28, 2004 6:37 am
Location: Sacramento, CA, USA

Post by ViewsAskew »

Hey Sara and Pete,

I was just reading Neph's post about taking Naproxen for a month and no RLS. . . Who knows! Now that mine is everyday (for a couple of years), it's more a question of how early it starts, not whether or not it will. Some days, they "threaten" all day - I get ansty, but don't go into full RLS. Other days they are quiet as can be.

Pete, some people have noticed that ice cream can bring on RLS. I think it's on the rlshelp.org site. They mention something about mono and diglycerides I think. Maybe it's a trigger for you. Like Sara said, who knows about how all these neurotransmitters and brain chemicals work together. Could be that having eating certain things or working out or being mad or whatever triggers some other chemical release that affects the dopamine - either the production of it or its availability in the part of the brain where we already have problems getting it.

Here's to continued success, regardless of if you know why - to both Pete and Neph and anyone else that it having a happy RLS-free day, week, or month.

Ann

PeteB
Posts: 27
Joined: Thu Oct 07, 2004 3:16 pm

RLS Free days

Post by PeteB »

Indeed, RLS free days are heaven sent. And sometimes I take them for granted.

Thinking back over the past, and bearing in mind the very sensible ideas mentioned above, I'm wondering now what it is I should be looking at. Diet and lifestyle are things we're all very aware of. I'm led to wonder if there isn't something we're missing out. Something 'obvious but the last thing you'd expect'.

(I work with computers and often the solution to a problem is simple!!!).

So, I'm going to look at monitoring weather, clothes I wear, people I meet, travel, TV (amount of time watched and what), health issues be they physical or mental, noise, bright lights and anything else which might be 'outside the box'.

There's an answer to this. We just(!!??) have to find it.

P

ViewsAskew
Moderator
Posts: 16657
Joined: Thu Oct 28, 2004 6:37 am
Location: Sacramento, CA, USA

Post by ViewsAskew »

Pete, back in the day, I could always 'control' my RLS with those little things. For me, they included: good sleep hygiene, going to bed as soon as I felt a little odd (I'd fall asleep and it would stop), not wearing ANYTHING TIGHT! Pantyhose, tights, tight jeans would all set it off, but loose stuff didn't. Also important was avoiding caffiene, regular exercise (but not too strenuous, especially in the beginning), putting on lotion twice a day, not letting anyone touch my feet, taking calcium and magnesium, doing some stretches if I did get it to knock it out fast, etc.

Worked well for 20 years. Now I still do all those things, but have it daily. Now, doing those things doesn't stop it, it just helps from making it worse. Now, I have to take meds or I get zero sleep all night long.

My mom and sister still do those kind of things and only have it a couple of times a month. My grandmother was crazed with hers - every night for 50 years, many times all night long. My guess is that there is a period for some people when it's sort of dozing and hasn't come full awake. That period can last a long time. If you do all the magical things, it only opens one eye now and then. Sometimes if you forget the magical things, it opens both eyes for awhile. But you can put it back to sleep with the magical things. At some time for some of us, it awakes fully and the magical things only slow it down some, but can't put it to sleep anymore. So we get more powerful amulets like DAs, benzos and opiates. Some people take iron and it helps put it back to sleep, but for others it doesn't help.

I hope you find your magical things and that they last a LONG, LONG time.

Ann (must have been dreaming as I typed this as I just woke up)

PeteB
Posts: 27
Joined: Thu Oct 07, 2004 3:16 pm

Post by PeteB »

Ann,

You've summed it up so well. A very thought provoking post that shows how RLS goes through the stages.

Pete

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