my meds never work

[cornelia]

RLS often gets worse slowly, but it certainly can break out into a severe symptoms.
When my RLS was mild (and I didn't even know I had RLS) it broke out in a big way. In November 2000 all of a sudden I had 24/7 symptoms in my legs. 1 Month later it was all over my body and even in my face sometimes.

Corrie

[rthom]

Wow that's harsh. Sorry to hear that. Did it ever improve any?

[badnights]

cornelia - did that sudden escalation happen without any triggers like operations or medications? I've so far only heard of escalation like that after an operation or starting to take various drugs, so this would be something new for me and interesting.

[ViewsAskew]

cornelia - did that sudden escalation happen without any triggers like operations or medications? I've so far only heard of escalation like that after an operation or starting to take various drugs, so this would be something new for me and interesting.

I can't think of many, if any, people who've had this happen, either (no stimulus at all). We had one member several years ago....hers started out of the blue. But, later it turned out that she had small fiber neuropathy plus WED - not just WED - and it was the SMN that started and seemed like the WED increased tremendously out of the blue.

[cornelia]

My RLS stayed that way and no special triggers were unvolved. I have read about it happen to other patients though.
This is mentiond in the RLS book written by Hening, Early, Allen and Chokroverty:

'late-onset phenotype shows a rapid progression to a stable level of severity, usually occurring in less than 5 years and in some cases almost immediately with the onset of the symptoms'.

So, it is not common, but quite rare.

Corrie

[ViewsAskew]

I'm always so grateful that we've so many knowledgeable people here.

Thanks, Corrie. You're always up to date with your information.

[badnights]

I know why I missed that - because I'm not late-onset so I subconsciuosly focus more on my own type of the disorder when I read things. Thanks corrie.

[ViewsAskew]

Me, too, Beth. I was also not late-onset. I was a teen.

[cornelia]

Well, the 2 of you are forgiven! Thanks for the compliment.

Corrie

[ViewsAskew]

Well, the 2 of you are forgiven! Thanks for the compliment.

Corrie

Too bad that's not the only time I have made or will make a mistake!

And, you're welcome. It's well-deserved.

[peanut1]

I do think the RLS/WED meds made my RLS worse overall ie not just a temporary augmentation thing which is why I've decided not to do them anymore. I started tracking when the WED got worse and it's clearly when I started taking medication. When I got on the meds full time, which for me was gabapentin, the doctors enouraged me to double the meds. When I doubled it, gabapentin worked for a month. Then the docs wanted me to triple the med and I balked. Afterward, my sleep was cut in half. I was getting 4 hours a night before taking the meds and after the meds I was getting 2 hours a night on a consistent basis. This happened with 3 other medications. Needless to say, I decided to completely cut out all WED meds and go with whatever happens as i don't know if it's worsening the RLS or something else that is contributing to the RLS.

[Polar Bear]

I wish you well as you continue without any WED medications.
Please keep us posted are doing.

[peanut1]

So far so good. BUT, I took myself off all processed food and am sleeping better this week.

[peanut1]

It seems like meds help some WED people and maybe make it worse for others. I'm curious to know if this could be the difference between primary and secondary WED?

[ViewsAskew]

It seems like meds help some WED people and maybe make it worse for others. I'm curious to know if this could be the difference between primary and secondary WED?

Not at all. See primary and secondary discussion in other thread where also talking about this.

Per whether meds make it worse or not....

The only time I know of for sure that meds make it worse is when A) it's a med that isn't for WED, such as an SSRI or antihistamine, and it known to make WED worse, or B) when the med causes augmentation. In some cases, it does seem that the augmentation MAY have caused the WED to worsen, but that is a supposition, as we can't know what would have happened had we not taken the med. And, since it happens so infrequently, it's not likely (but it is possible).

It seems, but there is no way to know, that some people's symptoms do get worse over time once they start taking meds. But, I don't think we can say the meds caused it - there's no way to know. WED gets worse over time for people who do not take meds - sometimes quickly, sometimes slowly. My uncle has never taken meds and his has progressed tremendously. I only started taking meds because the PLMs had progressed to the point I didn't get any sleep. If I'd never taken meds, who knows what would have happened.