Rls somtimes or all the time

For everything and anything else not covered in the other RLS sections.
ViewsAskew
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Post by ViewsAskew »

jrowley wrote:Becat I am not trying to compare it's just I haven't seen much of anyone posting about a 24/7 thing and it seems everyone is in some form of treatment and yet they are still having problems.


I'll add to what becat said. People come here only in time of need. There are only few of us that hang around even when treatment is working. Those that do hang around do it for personal reasons. What you don't see here are the thousands of people that are happy with their treatment because most of them have no need to keep posting!

Many people don't get the right help, the right doc, or the right meds for a long period of time. It took becat a long time to get the right treatment. Me, too. The more severe, the longer it takes.

Since your pain and discomfort have always been 24/7, I would think there is a possibility that it is not RLS, or only RLS. Again, I'm not a doctor, but in the 10 months I've been here and on the two Yahoo support groups and reading the posts on Dr B's site, I've yet to see someone that has ALWAYS had it 24/7. Most of us have had better or worse periods, or even times when we didn't have it at all. There may be others, if so, hopefully they will speak up.

Just curious - when you say it has always been 24/7, is this as an adult or since childhood, too? (Not that is makes any difference in terms of my limited knowledge- I am just curious.)

Ann

sardsy75
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Post by sardsy75 »

THERE ONCE WAS A POST HERE
Last edited by sardsy75 on Wed Aug 10, 2005 11:57 am, edited 3 times in total.
Nadia

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Sara
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Post by Sara »

Jan--

Can't speak to treatment, since I'm currently still managing without meds. RLS runs in my family, and I've had it for sure since my teens (probably some childhood foot/leg problems were also RLS, but who knew? and I don't remember enough details to piece it together now.)

Mine's gotten worse as years have gone on. Sensations both more intense and more frequent gradually through my 20s and the first half of my 30s'... classically worse when I had the flu or took cold meds, worse when I was fatigued or stayed up late.

I first heard of RLS from a friend in my mid-30s, then a year or two ago, I came back on-line for more research and support because all the sudden my RLS went from nightly to 24/7 for a more than a week. Becasue I had read when I first heard about the condition that it was "progressive", I was REALLY worried that from then on I'd have it 24/7.

I lucked out, and I do not have RLS 24/7 every day. I have SOME form of RLS pretty much every day. On "good" days, it starts mid- to late-afternoon and goes until I go to sleep. Sometimes it's still there if I wake in the middle of the night, and increasingly, it's there first thing in the morning, too.

But I would guess maybe three days a week, in an average week, I have it 24 hours a day, any time I sit or stand still. I may have it all-day more days a week, but I currently don't have a work situation where I have to sit... so in the mornings, I'm usually up and around where I woudn't feel it much anyway. Its' not until I sit in the afternoon, to catch the news or check e-mail, etc., that I really have much chnce to feel it.

I did want to say that although I don't have pain with my RLS (though the sensations on a bad night are bad enough that it's a VERY "painful" experience, if you get my distinction... not just "uncomfortable"), I have had a history of leg fatigue which several RLSers I know seem to also have.

I also wanted to say, I am able to sleep despite my RLS (and so are some of the RLSers in my family)... we don't walk the floors all night. In fact, for me, going to bed it the one and only "cure" for a bad night of RLS. Sitting is torture, but if I get ready for bed, then read, I will almost always be able to get to sleep. Also, the later I wait to go to bed, the worse my RLS will be and the harder it is to get to sleep at all.

I have had periods when RLS discomfort woke me early (the morning RLS and 24/7 RLS) and would not allow me to get back to sleep, too, but at least I'm lucky to GET to sleep in the first place.

No help for you in this, Jan. But I think that 24/7 symptoms CAN definitely be part of RLS. I have NO doubts that that's what I have, even though I have it in the mornings, even though it's more in my feet than my legs, etc.

I don't recall my medical terminology that well, but I think that's part of why they call it a syndrome, isn't it? Because it's a group of related symptoms, rather than a specific and exact set of them. Seems like the similarities betwen all our cases are MUCH more impressive than the differences. There just aren't that many other things it could be causing these types of groups of symptoms, anyway.

You take care.
Sara :D

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Post by Guest »

Well that explains some and to answer some of your ?'s I did have a sleep test, showed I jerk every 6mins and my brain wakes at that time. To the meds: Mirapex-had side affects and didnt work so I guess I had both from it. So they tried klonopin-this worked some but not all it took me to a small twitch but I had side affects from it and it made me so tired I was for fear of driving. Neurotin - did not work still had the jerks. Depakote - did not control the jerk but helped with the pain and also helped with the headaches that I get daily since I was 14 years old and depakote is very common drug used for both rls(according to the california site) and for headaches (according to webmd). So she added the Parcopa which is the same as the sinemet and guess what according to my husband that is not working either so maybe your right on that maybe it is another underlying condition, however the sleep study showed restless leg so I don't know I am only trying to figure it out and find out if someone has been in a simular situation as myself and what did their doctor do and did it help. I'm not here to argue with anyone. And I agree with you about the ppl come for a time of need viewask and becat well Im here with a time of need. And the 24/7 is since adult hood during the childhood years I had pain everyday after playing hard outside that my mother would put hot packs on my legs before bed. As time went on I would have pain when I was on my legs to long or to much Then towards the med 20's I noticed the jerking which I only noticed the most when I was really tired. But now I is there on a nightly basis and I have pain and jerking during the day when I am at rest at my desk and I contuiously have to move the legs to get relief. Oh I am assuming my doctor is considering me as a primary case since my mother, father, and his mother all have it.

Ah and sardsy that is how its been for me. I have had it just like that my husband says my hips and everything go at night. When sitting in a recliner my legs just jump off the foot rest from a twitch and Im not even sleeping or anything. I have that same feeling of wanting to move all the time I was always like that and not just because of crawling feelings but because of pain and feelings of numbness but your not numb and feelings of swelling and your not swollen. Constant moving when I was a child twitching around and such, then as I said earlier the pain I had when I was a child and my mother having to put hot packs on my legs due to pain after playing all day so I could rest at night, And on occasions I find my arms having a feeling of creepy crawly things on them. It happens to my head also towards the end of the day my head feels like bugs are crawling on it. So when it comes down to it its med after med until one works or 5 work or 10 work whatever the combination is used. And until i find that I will have the 24/7 and sometimes I will have myself go to just a twitch rather than all my lower body jerking. Now thats relief and I am not feeling all alone with this that there is somone out there that is simular as me. Thank you for your reply and I guess I will just trudge on with the trial and error till its right.

And sara thank you because I too have simular situtation as you where the longer I'm up the worse it seems to be and if I fall asleep on the couch I seem to feel it more and about the only thing that helps is to go to bed and be able to stretch out and move all night just let it happen. The worst of that though is how tired you become after several nights of this constant moving even though your sleeping as my sleep doctor explained your brain is awake and your not getting the deep sleep the brain needs to make you feel rested. And the sitting is the worst for me too the more I sit the more I need to move.Thank you so much for your reply and I am sure glad that Im not alone there are others out there that have a simular situation.

Sorry for the length. I sure hope we all find relief someday

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jrowley
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Post by jrowley »

Sorry forgot to log on but the guest is me Jan
Jan :roll: Can't wait to sleep!

Sara
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Post by Sara »

Hello, again, Jan--

Just wanted to say, I thought of you last night. Company at our house in the afternoon, and a few other things, got our normal "scehdule" delayed, and everything was late. Started falling asleep on the couch after dinner, but didn't get up and go to bed because my husband was home and I wanted to be sociable.

By the time I finally did go (abotu and hour and a half after when I really "should" have gone), my RLS was REALLY bothering me. I did thankfully get to sleep, but it took a while, and my feet felt so bad. :(

Now, I was awakened by my husband early because he jumped out of bed when he heard the space shuttle reenter the atmosphere; I was so exhausted I slept through the double sonic-booms. Hubby says the whole house shook and the kids were awakened, too. I didn't hear a thing until he exclaimed, "There's the space shuttle" and ran downstairs to see it land on TV. :lol:

But sitting here at the computer, my feet are almost as bad as they were last night. Guess it's going to be a day I'm better off staying mobile. I might be worse in the evening; but I can't stand to sit when my feet are this uncomfortable.

Anyway, I hope you got some rest last night. Hang in there, Jan.

Sara :D

jan3213
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Post by jan3213 »

Hi, It's Jan (3213)

Ann wrote:

I'll add to what becat said. People come here only in time of need. There are only few of us that hang around even when treatment is working. Those that do hang around do it for personal reasons. What you don't see here are the thousands of people that are happy with their treatment because most of them have no need to keep posting!


I'm like Becat, as you can see, I've been around a long time. I hang around here because I have the same passion for people who suffer so they so don't live in isolation and fear and I always hope that something I say helps in some small way in the fight against RLS.

That being said, let's get back to this RLS 24/7 issue. I have refactory RLS. I am currently on a "coctail" 1.75 at bedtime and 1.5 mg. Mirapex at bedtime. I have had RLS for at least 25 years--maybe longer. I'm 58 as of yesterday--and, frankly, I've lost count of the number of years I have actually suffered from RLS.

Sometimes, I still get RLS during the day, even on meds. And, even though my meds work most of the time, I have periodic breakthrough of RLS in the middle of the night or even at the movie theater. I have a severe form of RLS. I can go a long time without a problem, but them WHAMO. With me, I never know what brings it on. I try to "link" it to certain foods. Doesn't seem to matter. I'm sure stress plays a role, but sometimes I can seem totally stress free. I have the painful kind. However, now I'm being tested for rheumatoid arthritis, also. And, I was told that I have fibromyalgia. So, now, I'm not sure if my pain is from RLS, or one of my other problems.

So, as Becat said (and probably others), we are all different.

Now, that's not to say I STILL don't come on here for support of these great friends now and again. This is a great place. And, I like to keep in touch with my friends.

Oh, I forgot to tell you I got this little gift from my father (most likely). I can remember my poor father suffering from his legs. He died in 1979, way before RLS even heard of.

I hope I've answered some of your questions. As I said, we are all different. RLS is such a horrible thing to have. I hate to have to describe it--it's like having to go to the doctor and describe my pain on the pain scale.

Jan
Last edited by jan3213 on Tue Aug 09, 2005 12:50 pm, edited 1 time in total.
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jrowley
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Post by jrowley »

Thanks sara I really appreciate your thoughts. I'm so sorry you had a rough night last night. I went to bed with a headache and woke with one. Seems if it's not one things its another.

I also forgot to mention to all that when the doctors saw the mirapex and the klonopin didn't work they sent me for a emg, vasular test and numerous blood test they were all normal and I had no problems with my blood. So I guess the underlying conditions are out. I get so discouraged about this makes me mad sometimes other times I want to cry.

As for the no two ppl are the same I realize that and I agree with that but there are ppl that have simularities and that is and was what I am looking for. Someone who has simular problems and maybe between what has or does work for them if my doc hasnt tried it yet maybe I could request it. I know that it may not work for me because no two ppl are the same however it doesn't hurt to try and I am ready to try anything.
Jan :roll: Can't wait to sleep!

sardsy75
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Post by sardsy75 »

THERE WAS A POST HERE ... ALSO
Last edited by sardsy75 on Wed Aug 10, 2005 12:00 pm, edited 1 time in total.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

Sara
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Post by Sara »

Nadia... I also do not seem to PLMD. My husband does, but not me. I guess I buck a FEW RLS trends, too?

Sara :D

sardsy75
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Post by sardsy75 »

AND A POST HERE TOO
Last edited by sardsy75 on Wed Aug 10, 2005 12:07 pm, edited 1 time in total.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

jan3213
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Post by jan3213 »

It Jan (3213) again

I forgot to mention something also. I DO have PLMD. I have had a couple of sleep studies. During my most recent one, I had (and I HOPE I am repeating this information correctly) approx. 11 leg movements in a min. WITH medication during a 1/2 period. I was having a lot of pain during that time and was being tested for lupus, RA, and a number of other disorders. However, I have been told by my husband that I have kicked him at night and that he has been able to count, at regular intervals, how many times I have kicked my legs during a half hour period. I hope that made sense.

Jan
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jrowley
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Post by jrowley »

yeah it does girls and that its actually rare to not have plmd the it is more common for a rls'r to have plmd. Either way it makes no sense and it's very very discouraging when it seems you've tried everything.
Jan :roll: Can't wait to sleep!

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jrowley
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Post by jrowley »

That makes total sense jan. My sleep study and doc didn't say I had plmd however he said I jerked every 6 mins and he said I had very severe rls. So if I jerk like that would'nt it be plmb or can you be jerky and not have plmb and only have rls? Cuz my hubby says the same thing he could count the jerks lol. Boy jan that sure is a lot of kicking too. 11 movements in a min is bad bad. I read somewhere any more than 1 every 5 mins is considered to be severe at least I think thats how I understood it. Maybe I didn't understand it right.
Jan :roll: Can't wait to sleep!

ViewsAskew
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Post by ViewsAskew »

Jan R, I'm not sure that sleep doctor is speaking in the same language as what I know. PLMD is jerking rythmically - if it is during sleep, it is PLMS, if while awake, it is PLMW. RLS itself cannot be determined from a sleep study, only from a detailed question and answer, starting with the 4 criteria:

you have uncomfortable sensations (and pain for some)
you have them at rest, such as sitting, laying to sleep, etc.
tend to occur more at night
they go away with movement

Yes, Sara's got great points that it's all different, but this part is all the same. It's the common denominator. And when we are different, it really is more in terms of the amount of time we have it, pain or no pain, how much it affects us, and which meds work. You could throw in there what sets it off, too. But what it is seems quite consistent.

Last night I was so concerned because your case seems enough different from me that is has some flags waving. Numbness is never a part of RLS unless someone has some type of neuropathy. People with neuropathy often get RLS - I belelieve the We Move site discussed neuropathy as one of the most common causes of secondary RLS. You said you had blood tests, but any tests for neuropathy? The jerks while awake sound more like some type of myoclonus. Could be PLMW, but why didn't your sleep doctor find any PLMD? The jerks while sleeping are consistent with PLMD, again, why didn't your study show them?

If I remember correctly, you had a study where you didn't sleep much because of talking, right? Did you get another one? This is really important. Without a diagnosis of PLMD, where are the jerks coming from? If they are voluntary and in response to the uncomfortable sensation, that sounds like RLS. But if involuntary ans especially if not in response to the uncomfortable sensation, then it's less likely it is RLS. While I do believe that I get RLS while sleeping, but it awakens me quickly - in fact it is usually part of my dream that I am doing weird things with my legs, soon I awake and I have RLS.

If must be very frustrating to not have any answers. I hope you get some soon.

Ann

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