atypical RLS perhaps? Getting worse, off and on...

[Bess]

I can feel in my legs right at this moment. It's a weird "light" feeling? I don't know.... My legs just feel weird. I've been trying to describe this to people for so long... the best way I can describe it is feeling like you've been driving in small clown car for 12 hours and you think to yourself "my god I need to stretch my legs" but then when you finally get some space and have the opportunity to do it you find that no matter how much you stretch them that feeling of desperately needing to stretch them doesn't go away. You feel like in order to stretch them enough you would have to rip your leg apart. This seems to get the idea across to people that although it isn't pain, it is quite, quite uncomfortable.

For those with scientific minds who don't want to read through all the prose, here are the quick facts of my situation:

- 29 yo female
- RLS is episodic and seems so unpredictable. Sometimes I only get it for one day a month, other months (like this one, it's almost every day)
- symptoms are worse mid-cycle (ovulation) and just before my period.
- symptoms are worse in the summer
- symptoms were worse when pregnant
- I often get daytime symptoms (had it right upon waking up this morning in fact). My roommates and coworkers have seen me stomping my feet on the ground incessantly in attempt to get relief.
- Sometimes I get daytime symptoms but no problems at night. Sometimes it's only a problem at night, but not in the day. It's very unpredictable.
- when it's really bad I get the feeling all over my body, even my face

Co-occuring symptoms:
- mild PGAD (especially this recent episode)
- EXCESSIVE daytime sleepiness, even with lots and lots of sleep. In fact, more likely perhaps when I've had lots of sleep. It usually sets in the early afternoon and it feels like I've been drugged with sleeping pills, it is so intense. I take adderall to combat it, coffee is useless for it. Usually happens in the summer. Used to call it my "summer syndrome" and it always had the doctors baffled. For awhile I thought it was low blood pressure..
- ADD, almost always when I'm also experiencing the daytime fatigue. Sometimes the ADD is so severe it is unsafe to drive because I zone out. Adderall works.
- Muscle weakness
- Insomnia. I swear on my grave the insomnia is not just a factor of the discomfort in my legs, it's a co-occurring phenomenon. Oftentimes I'll have the insomnia before the feeling in my legs starts creeping in on me. Sometimes I have the RLS but no insomnia at all and I sleep just fine.

Things I've tried:
Melatonin - works for mild symptoms, sometimes
Magnesium - works well for mild symptoms
Iron - thought it worked, but that may've been a coincidence because now it's not working
Orgasm - definitely makes it worse. This is consistent with what I've read about PGAD in any case.
Sleeping on the floor - works often when nothing else will
Valium - the only thing I can say works every time. Unfortunately though, I can only take for 3 nights in a row before it loses its effectiveness, so it's only good for emergencies.
Adderall - this definitely works for the ADD (duh) and the fatigue (duh) and actually can diminish the feeling in my legs but the dosage I need in order to do that gives me side effects I don't like
Diet - I've noticed no correlation with RLS and my diet. My mom and her mom both have/had gluten sensitivities and my sister has a dairy sensitivity so I might try giving up one or both of those. Although I'll be honest, I don't want to live in a world where I can't eat dairy.
Exercise - I've exercised the crap out of my legs. My legs are now quite strong, and not even just for a woman's. It has never helped. If I try to exercise while I have symptoms I feel like I can't push the limits of my muscles because they aren't getting the right signals or something. I can't push the limits of my cardio fitness because it's like my body is unable to properly cool itself down. HOWEVER, I have definitely noticed that I am less likely to go into an episode of RLS if I manage to get myself really super-fit shape during those weeks/months when I'm feeling normal.

Experience with doctors:
A psychiatrist prescribed the adderall for the ADD/fatigue, a PCP and recently a psychiatrist prescribed the valium for sleep. I tried to get my PCP to refer me to a neurologist but she refused! She had me get all these tests (iron and such) which came out normal, talked to the neurologists (this is Kaiser so she can do that) and they said to prescribe one of the older Parkinson's drugs that gets bad reviews due to its causing fatigue and augmentation. I said it wouldn't be appropriate for me since one of my major concerns was the daytime symptoms and co-occuring fatigue and said I wanted that Neupro patch but she ignored me and said to try the other one first. Of course I didn't, and that's the last I've heard of that. I think Kaiser just doesn't have enough neurologists on staff to worry about silly RLS patients. I finally called Johns Hopkins today and will be getting in on a clinical trial they're doing this summer. Call them up, 300 bucks! And they pay for travel!

[ViewsAskew]

One of the characteristics of RLS/WED is that movement helps. It doesn't mean it has to completely eliminate it, but it definitely helps, even when it is at the most severe. Another is that it's always worse at night. When those two things do not occur, it's definitely time to look for something that happens in addition to RLS/WED or instead of.

One of the hardest things is when multiple things are happening at the same time, specifically RLS + _______________. It's so hard to tease out what's which.

You need to make her send you to a neuro. Per trying the drug - likely pramipexole or ropinerole, you really aren't likely to have issues if you try it for a week or two. At least you''ll have data! And, if it just happens to have side effects you cannot tolerate, she might have to send you to a neuro .

The insomnia is a co-symptom for many of us. You might look for the recent studies out of Johns Hopkins on glutamate. Good news for you that you got into the clinical trial!

[Bess]

http://www.ncbi.nlm.nih.gov/pubmed/22281003
Just found this article; it seems having daytime symptoms is actually pretty common, so I'm wondering whether it really MUST be the case that it is always worse at night. Mine has traditionally been worse at night (for years it exclusively occurred at night), just not always.

[ViewsAskew]

It's not a question of daytime symptoms not existing - I have symptoms most times of day and night and many others here do, too. The difference is that it's always worse at night. When it's severe, it's harder to tell, of course. But, during the day, I can distract myself, I can get into my work and have it calm down. I can "awaken" myself if I'm a bit tired and have them calm down. I can't do that as well at night - and sometimes not at all.

The key requirements to be called RLS are:

1. Worst at night.
2. Improves with movement.
3. Occurs at rest (not that it can't occur at other times, but rest will almost always bring it on, which is why sleep is so difficult).
4. A sensation (not required, but usually present) creates an urge to move - this urge is SO strong that you just about cannot ignore it. The urge is a requirement of the disease.

Now, if you were very, very tired during the day, you could have really nasty symptoms. One of the worst times I remember - I was a teenager - was during the day - I'd taken a sinus medication and was sooooo tired from it. I could hardly keep my eyes open but couldn't sleep because of the crazy sensations. It's also when I learned the Benadryl - dipenhydramine - was a no-no! So, in that way, I guess you could say that it could be as bad during the day at times.

What doesn't happen, unless you are accidentally ingesting or taking something at times, is for it to be random in terms of level - sometimes morning, sometimes night, sometimes day. It's tied o your level of sleepiness - which is almost always the worst before bed. It's also tied to circadian rhythms - another reason it's worse at night.

[Bess]

I know the jumpy crawly legs that need to move, and those do usually occur evening or right after trying to go to sleep, but there's this feeling I get in my legs that occurs leading up to that sometimes, this sort of "light" tingly feeling, but doesn't quite give me the urge to move them. I guess because I associate it so strongly with it developing into "true" restless legs that I've now just called that feeling "restless legs" too even if it's just like the mildest version of the sensation. You know what I mean? I don't know if other people get a mild, noticeable sensations in their legs that just kinda goes on all day, but then worsens at night.

[Polar Bear]

I can get what is like a 30 second warning.... a very slight oddness and yep... RLS symptoms strike and all I can do is get up and move.
But not an ongoing sensation that is not my RLS/WED sensation.

sort of "light" tingly feeling, but doesn't quite give me the urge to move them
Only speaking from my own experience - any RLS symptom has me up on my feet.

[ViewsAskew]

Like Polar Bear, I get what I call "pre-RLS" but true RLS strikes shortly or I get up and move around or make myself wake up more and become alert, and it stops. If RLS always accompanies it for you, then it likely is. If RLS doesn't, it could be that you became distracted or got up and moved. It also could be something completely different.

[Bess]

Yeah, it feels like what you've called a "pre-RLS" or that 30-second warning sensation, except it lasts all day, oh-so gradually turning into true RLS. It's weird that mine would come on so gradually. I actually never even realized other people had the symptoms just drop on them all-of-a-sudden like that.

[Yankiwi]

When I ignore the early warning signals I'm really in trouble. If I get up right away I can keep the RLs at bay but if I wait it comes on strong. Even knowing that, sometimes I'm busy doing something and ignore the "pre-RLS" which is stupid.

[ViewsAskew]

yankiwi - that's a good distinguisher to me - pre-RLS is always "treatable" when I have it. If I get up and move, it solves it. Or get involved intellectually - to stimulate and awaken my brain. If it didn't go away with movement, I'd have to wonder if it was pre-RLS or something that feels a lot like it.