Foot insanity and all-day symptoms???

[Sara]

Hello, all--

I should have warned you. Once I get started talking about anything, I'm hard to stop!

Here's my next query for y'all!

I find that when my symptoms are at their worst, it's my FEET that really take the brunt of the sensations. I remember that from my earliest RLS memory (in the car with the flu under the influence of Nyquil late in the evening), and it's the "main attraction" of my increased RLS discomfort now.

Is this true for anybody else out there? I was thinking in bed this morning, when my feet were vibrating inside and I was twitching and flexing them outside, that it almost feels like they're not quite attached to my lower legs (though my lower legs also have that vibration/"white noise" sensation). It's almost as if I could lever with my one heel at the spot between my other ankle and heel, and my foot might just pop off like a Lego block. (Or maybe that's WISHFUL thinking?!!! )

Very odd, and sometimes a bit disconcerting. I don't mean that I have any weakness in my ankle or anything literal like that, but my FEET are a ball of sensations, and my legs just seem to be getting the "after-glow". Anyway, wondered if anyone else could relate to that description.

AND...

Does anyone else feel like maybe their symptoms last MOST of the day sometimes, but you only NOTICE them in the evening, night and morning because those are times when you're less active?

Since I've had this recent increase in symptoms, I ALMOST feel like ANY time of day, if I sit down and don't have my mind busy with something, I'll feel a BIT of creepy-crawly, vibrating, etc. I don't THINK it's "the power of suggestion" because it's on my mind alot. I think it's really going on more of the time than I realized before, but when I'm moving around, driving rather than riding in the car, busy with my daily responsibilities, I just don't have time or presence of mind to notice.

I think that I've sort of acclimated myself to the certain "pulse" and "vibe" that my body has, and so I tend to "accept and drive on" rather than letting it get my too frustrated by it (so FAR!) It's just "the way I am" and that's helped me get through some other medical issues as well over the years without ruining my quality of life. But now that I DO think about it a little more, I DO seem to have a LOT of creeping and crawling and twitching and flexing and such... all day long.

Anyone else have thoughts on this?

Best to all, and take good care of yourselves!
Sara

[jan3213]

Sara, it's Jan

You're not alone. At least, I'm like that, too. My legs bother me, at least to some degree, all day. I'm "aware of them", especially my feet. Right now, my feet tingle, and sometimes, they burn, but when I'm trying to rest, either at night, or trying to take a nap, that's when "it" happens. Of course, I'm on meds, so that controls the RLS right now, unless I don't take my meds soon enough, or I'm under extreme stress, which I have been lately. But, I know EXACTLY what you mean. There have been times when I couldn't even sit through a movie, or ride in a car, and that was during the day. If I kept my mnd occupied and was up and about, it was okay, but if I tried to relax, Katie bar the door!!! I can ALAWYS tell when "it's" going to happen, can you? It's like the beginning of a migraine--you know the aura (I get the floaters and the bright light effect before the pain starts). And, don't worry about going on and on. You've found your match!! Do you get cramps in your feet, too? That's fun!!

YOU take care, too

Jan

[Sara]

Jan,

I think that the "level" of symptoms I'm at right now is more "consistent"; I'm not having "episodes" of RLS as much as I used to. I don't RECALL "knowing ahead" say two years ago, when I had lot of nights I couldn't finish a movie on the couch with my husband, that that would be a night I'd feel that way.

But, then again, it's like I said, too, my tendency is not to borrow trouble. I am more aware, I think, than some people are of what's going on in their bodies... but I also try NOT to project ahead too much in that. Not sure I'm explaining this well. But maybe I know, but don't consciously acknowledge, as the symptoms increase. Right now, I feel like "it" is happening EVERY time I sit down, stand still for any period of time, etc.

It was interesting, though, that you mentioned the migraine 'aura', because I had migraines from about age 23-27, and I did always see that about 20-45 minutes before the migraine started and recognize what was ahead, so that I was able to take something for the pain, avoid eating anything I might feel like throwing up, get away from bright lights, etc. That was definitely a helpful thing, actually... so maybe as I start to get "strategies" for RLS more, I'll also start to cue on early signs to at least put some of those in action.

Always a pleasure to chat with you, Jan.

Sara

[jan3213]

Hi, Sara

I've had RLS for so long, that it's become such a part of me. Don't get me wrong and please don't take this wrong--I'm not "borrowing trouble" and I didn't take offense to that at all--but, I think, like the aura, I can just "tell" when my legs are going to give me fits. It's hard to explain, but it's not like I'm waiting for it to happen at all. It just comes on. In fact, I can be feeling completely relaxed, and then I can feel it start to happen. Like I said, I think, for me anyway, stress plays a big roll. And, believe me, I've been under an unusual amount of stress lately (things completely out of my control). I hope I'M explaining it right. I hope I'm making my point. RLS is just crazy and I think everyone one of us has different experiences. I haven't slept good in years. You just get used to it. I don't even take naps. I guess my body just adjusts. And I'm on meds. You can see my bio. I've had a sleep study recently. I practice "good sleep hygiene". I do all the right things. But..... Anyway, hope you continue to do better. I know there are people who are much worse off than me, so I try not to have it be all about me (Ha!). But, isn't it good to be able to talk to people who understand?

Good talking to you, too.

Jan

[Sara]

Hey, Jan, glad you DIDN"T take offense. I think maybe you still got what I meant overall. I think I'm having such overall symptoms every day all day -- and more trouble EVERY night right now -- that there's maybe not a "free" time for me to GET that inkling that it's coming BACK. The darned stuff never LEAVES!!! LOL

I've been on a number of medical support groups for myself and people I've cared for. I've been in the enviable position in most of being "less than worst", so when I look at others' struggles, it only makes me feel more THANKFUL. I get to liking and caring about folks, so it breaks my heart to hear what they go through, and I never feel like they're "complaining". Geez, if it wasn't negatively affecting allll of our lives, we wouldn't be here!!!

Oh, and I did also think after I posted that it probably sounded funny what I said about "knowing my body" or whatever that was. Again, if we DIDN"T ALL know our bodies, we'd be UNdiagnosed RLS sufferers, right?

It's always the worst when you ARE doing all that you know to do, and it's not helping ENOUGH. My HOPE is that if I keep getting worse, at least I'll have learned a lot of tricks and options from all you long-time "warriors", and be better able to cope with whatever's ahead. (Also, I'm a firm believer in forewarned is forearmed; always want to know the worst case scenario, so anything less is a blessing, right?!)

Your thought-provoking response is a good start for this, Jan, because I know from my past history that if there IS a cue, I might WELL LEARN to pick up on it, although I don't seem to have yet.

Have to run. More soon. Gosh, you're a sweetie-pie.

Sara

[jan3213]

It's Jan

Hey, we're all here for each other!! That's what this whole this is about. And, isn't it great to be able to talk things through. As I said, everyone's different, and even though I've had RLS for 20 years, I'm still learning and can pick up new info all the time!! I'm glad you're here, Sara. It's been good talking to you!!! Take care.

Jan

[lyndarae]

Hey sara this is Lyndarae, RIDE ON!!!!! My feet bubble 24/7 reminds me of when you put an alka selser(spell) in water YUK!! And my heels will not let me lay in bed and read or watch tv.I have to hang them over the bed.It just hurts cant explain that feeling. My feet sometimes feel like I have an oval stone in my shoe and Im walking on it. But ya my feet never stop tingling crawling vibrating. And they are always ice cold even in summer and with socks on.I live in the mountains too and it effects my rls when it gets cold my legs ache somthing awful and my feet disco down glad you found this site and thanks for leting me know Im not alone. I have to laugh or I would cry all day Lyndarae

[jakesmom]

I know this sounds weird, but does anyone ever feel like the veins on the inside of your ankle are tying themselves in knots or just throb? That is probably my worst sensation. If it flares up when I am driving, I have to pull over until the feeling subsides. Sometimes I can use cruise control while I stretch and try to work it out. That's the one sensation I can never explain to a doctor.

[Polar Bear]

Can't say I've ever experienced anything around the veins of my ankle. Apart from the usual creeping WED symptoms the only thing different I had was a few years ago when for several months I had a burning sensation in my feet which, for whatever reason, no longer happens. But of course, my medications are now also much better.

[ViewsAskew]

A percentage of people get help from varicose vein surgery. And, while many doctors say that circulation isn't involved, it's very possible that in some cases it is.

Do you have any varicose veins?

[jakesmom]

I have one bulging vein in the back of my right knee. My legs and feet stay swollen

[ViewsAskew]

Definitely do some research about RLS and varicose veins. All the older research would have RLS in the title, not WED. It's not perfect, but for people with varicose veins, it often does help.

[jakesmom]

I will. Thanks for the tip.