does anyone really know what sets off their symptoms?

[rthom]

The subject is pretty much it. I find myself frustrated in the task of helping myself, because i can't seem to be able to narrow down the things that set off the symptoms. Do you know what will or has caused your symptoms most of the time?

[Polar Bear]

I honestly have absolutely no idea. My rls/wed is 24/7 with it being less in the morning and more in the evening as is to be expected. I don't know of any relatives that have it, and am unaware of having had it during pregnancy and it started when my son was about 6 years old.

I don't know of any particular set of circumstances that would set it off apart from the inevitable sedentary position. And I trust my medications to take care of that most of the time.

[badnights]

I suspect it's set off by various molecules doing a complicated dance within and between our neurons. Although I think it's good to look for triggers, I think it's a mistake to regard it as something entirely driven by triggers that we can control. As PB says, I let the meds do their stuff, and instead of spending my time seeking ways to control the beast, I am able, thankfully, to spend time living.

[rthom]

thanks pb I was thinking of things like chocolate etc. I'm reasonably sure it makes mine bad but then just when i think i know that for sure it does not react to twice as much as the day previous, without anything changing that i can identify. Thus the question, is it just more likely that it's just an eb and flow as part of the disease process rather than something i'm doing/eating, is my thought process/ question.
I find the question important, so i can avoid needing as much medication as i can. So, I was wondering if anyone has figured it out much or if it's just not likely to get figured--I'm beginning to think i'm slow or something.

[badnights]

In my answer, I was trying to say that I think it ebbs and flows independent of anything except a few obvious triggers. I'm not sure if that's right, but it makes the most sense to me to live my life as if that were true, for now anyway.

The only obvious triggers for me are caffeine, alcohol, anti-histamines, probably the other drug triggers I've been fortunate enough to avoid, and my pre-menstrual time (can't do anything about that). I avoid ice cream because once it seemed to cause the symptoms. Other than those things, I have no clear triggers. Maybe it's something embedded in my food, but I would like some evidence of that before I started an elimination diet.

I don't think you're slow, we're all struggling with this. We want to find the cause and eliminate it! But I suspect it's not that easy. I'm being careful not to spend a lot of time on the search for causes at the expense of living my life, because so far I haven't found much correlation between symptoms and anything I do; and by god, I want to live.

[ViewsAskew]

I'm with Beth....my body sets it off everyday, all day, worse at night. I honestly think that once you get daily symptoms, it doesn't matter much what you do. Yes, it's a bit worse if I drink alcohol...but in the scheme of things? Not that much worse.

It's just always there unless I'm medicated.

With the current regime, I'd say that I have symptoms every day, but mildly 80% of the time. A few times a week for awhile they are moderate. And, a few times a month, even with meds, they are pretty strong. Usually it's because I got behind in timing or it's around my menstrual cycle.

[rthom]

thanks

[rthom]

I guess what i want to hear is that i'm not trying hard enough and if i just think harder or in a different direction (providing directional ideas would be great) i can get it sorted out and be more comfortable, even if it's just during the day. Therefore needing less medication.
Bit of frustration maybe.
Thanks again to everyone who helps.

[ViewsAskew]

Just my personal belief - no, you can't.

I think we all want to, but I honestly don't think that once it's bad that anything is going to make that much of a difference. We avoid the things we know are bad - caffeine, alcohol, antihistamines, antipsychotic drugs - , we get our ferritin to at least 50 and better to 100....and the rest is the disease.

You might find something that sets you off, but I can say I've been dairy free, gluten free, sugar free, soy free, corn free and it didn't matter one whit. It helps slightly if I exercise regularly, but not like it did when the symptoms were mild.

I can even drink alcohol now and it has less of an effect that when it was intermittent. It's bad, period. Nothing lessens it except drugs and nothing much worsens it except things outside of my control, such as my menstrual cycle.

Again, just my thoughts, but I think acceptance and moving on are the two hardest things we can do...but the two best things we can do. I haven't given in in the sense that it controls me or has left me without options, but in the sense that it's part of me and I can find new ways of being with it. Acceptance and moving on has helped me to re-envision my life and reinvent myself, finding a new way to be in this life and still make my life count. I couldn't do that while I was fighting it.

[rthom]

Anne
Thanks you have given me another piece to the puzzle. I too have found that things are just happening no matter what I do and this was not so much the case 25 yrs ago. However i had not noticed it. I was still approaching it like it was before.
I too have changed my life to make allowances for this, own business on my time etc.
I am having trouble with the living part though--i'm a high energy person who likes doing thinggs but am finding that i tire way too fast now, walk 1/2 block and i'm exhausted etc.
I want to live not just be here and thus the questions earlier--i need to find something that works better. I have faith that it'll happen just short on patience i guess.
thanks anyway.

[Polar Bear]

I totally endorse what has been said by badnights and Views.

I no longer try to find out the cause, the trigger, it takes up too much time and energy and never has a definitive result.

I figure if Dr B and colleagues have not found definitive causes and triggers then I'll just deal with the symptoms as best I can. Do what I can to eat healthily, not take any of the known common aggravators.

I have no problem with the taking of medications. The last thing I am going to do is to spend more years trying to find an aggravator in the hope of reducing medications, which never truely works and in the end am likely to be even more uncomfortable, no further forward and certainly not taking any less meds.

Of course I don't take anything known to be an aggravator such as alcohol or benelyn or the like.
At present I am dealing with what I have to deal with as and when.....

[badnights]

good luck, Randy. Hugs!

[peanut1]

WED is very complicated. My understanding is that it depends if it's primary or secondary. If WED is the secondary cause, there could be things that are triggering the primary cause of the WED symptoms. Besides the obvious caffiene, antihistamines (and for me sugar) I know there is no clear cut diet that works for this. It's all very individual. The key is how do you find out if you have primary or secondary WED and if you do have secondary--how the bloody hell do you find out what the cause is where there is no obvious symptoms besides severe WED and sleep deprivation?

[jittery girl]

I agree with the posters who say to take the meds that work and move on with your life. If I take my prescribed meds of Tramadol each evening I do not get RLS. And I don't have a mild case, it is severe. Walking the floor with horrible pain/sensations in arms and legs for hours. Suicidal thoughts because it is so bad.Taking handfuls of drugs to try to get it to stop. So, I take my meds.
I see many people on this discussion board who say how bad it is to have RLS, say their meds work, then in the next sentence say how they want to get off their meds or take less. Why? The whole point is to find relief.

[rthom]

I agreed about taking the meds and wondered the same for a long time--but then i started to think the symptoms seem to be getting far worse far faster. I now think that it is quite likely my meds sped up the process. I'm lost now about what to do. I can't face it continuing to get worse at this pace, so I'm taking minimal meds and waiting for insight--hoping to get that before something goes wrong. Have faith though so I'll wait research and hope. Thanks all and thanks Beth.