I was at an event recently and a lot of other people were there. During the evening, three different people came up to me to talk about RLS. They all said they had read about it or heard about it recently and that they had it or that their spouses had it.
Case 1: Person that feels comforted by moving legs when going to sleep. Does not need to move them. Does not feel any sensation. Can sleep without doing it, but prefers to as it makes the person feel safe and comfortable. Doesn't happen any other time.
Case 2: Older person (close to 70) recently started kicking during sleep. Driving spouse crazy. I kept saying that this was PLMS and the spouse kept talking about RLS. I asked about any sensations while awake but the person has never had those.
Case 3: Younger person, just can't sit still - likes to tap legs and feet with a nervous energy all day long. It isn't worse at night and there is no trouble sleeping. There isn't any compeliing feeling to move them, but it happens all the time unconciously.
Case 2 does seems to have PLMS, but none of them have RLS according to the medical definition. But all of them think they do. They heard something about moving their legs and RLS and now they think they have it.
Am I just being nasty or is this a bad thing? It concerns me because it makes it harder for the docs to take US seriously. If everybody who ever wiggled their legs thinks they have this disorder, no one is going to listen to us! Or, do I have this wrong. By all of these people talking about it, will we attain a critical mass and have the docs start to take US seriously? First we have to educate them, I guess.
I suppose I'm grouchy about this because I've had early and frequent RLS for about a week and my meds appear to be failing again. I'm going through a version of hell and these people think they have a problem. I'd like them to sit through a week of the RLS that many of us have. Spend a sleepless night or two. Twitch through a movie - or stop watching them. Try nasty drugs with nasty side effects. And have them not work.
Anybody else have this happen? Thoughts?
Ann
Too much press???
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ViewsAskew
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Too much press???
Last edited by ViewsAskew on Sat Mar 12, 2005 12:23 am, edited 2 times in total.
That's my point
Hi Ann,
Sorry to hear about the meds.. I'm right slong with ya. My RLS is going back to 24/7. I dread calling for a sooner appt. with the doc, but may have to.
ANYWAY, THIS IS MY POINT EXACTLY. THE wrong press or information is not helpful. People get this notion that RLS is an "OLD PERSON'S" disorder. OR if there is pain involved it's something else. That in children it's growing pains or simply ADD OR ADHD. There is one person on another board that pushes that the thought that it's a Magesium problem. I'm shocked 3 people saw anything about RLS in the news.
It drives me nuts to think that the wrong information is not only given to the general popluation, but to the medical community. Yes, if everyone goes in to the doctor after seeing a news story and has the wrong information. The next time we go in to search for help, we are more screwed than we are now. BUT.........that's where our education about this comes in handy. When we know our stuff, better than some in charge, we can always prove our plight.
No your not wrong to be angry, but yes you should look at these as oppurtunities to educate. It's the little people like us that are doing the foot work here and now.
I think that this community and it's medical personnel should become super focused on spreading the real information about this disorder. So where are they. When are we going to show the world the faces of RLS. THE MANY FACES. THE DIFFERENT FACES. Why isn't the real story out there? Who's telling the news about the facets of living day to day with this?
I got so tired last year, better I got pissed off. I'm not happy with the fact that more of us will be showing up and we're not being counted. Look at the #s grow here every week. It's still up to us to make it happen, but that is not the way it should be. There's money enough to launch a full media blitz, but you see there is not a clear cut medical answer. It's my own thoughts, but if there was a medication that worked for most of us, for a long period od time.............this story would be everywhere.
That's why I think OUR VOICES COUNT RIGHT NOW.
I'm with ya babe.........got my broom and my gloves, ready to go at it.
Sorry to hear about the meds.. I'm right slong with ya. My RLS is going back to 24/7. I dread calling for a sooner appt. with the doc, but may have to.
ANYWAY, THIS IS MY POINT EXACTLY. THE wrong press or information is not helpful. People get this notion that RLS is an "OLD PERSON'S" disorder. OR if there is pain involved it's something else. That in children it's growing pains or simply ADD OR ADHD. There is one person on another board that pushes that the thought that it's a Magesium problem. I'm shocked 3 people saw anything about RLS in the news.
It drives me nuts to think that the wrong information is not only given to the general popluation, but to the medical community. Yes, if everyone goes in to the doctor after seeing a news story and has the wrong information. The next time we go in to search for help, we are more screwed than we are now. BUT.........that's where our education about this comes in handy. When we know our stuff, better than some in charge, we can always prove our plight.
No your not wrong to be angry, but yes you should look at these as oppurtunities to educate. It's the little people like us that are doing the foot work here and now.
I think that this community and it's medical personnel should become super focused on spreading the real information about this disorder. So where are they. When are we going to show the world the faces of RLS. THE MANY FACES. THE DIFFERENT FACES. Why isn't the real story out there? Who's telling the news about the facets of living day to day with this?
I got so tired last year, better I got pissed off. I'm not happy with the fact that more of us will be showing up and we're not being counted. Look at the #s grow here every week. It's still up to us to make it happen, but that is not the way it should be. There's money enough to launch a full media blitz, but you see there is not a clear cut medical answer. It's my own thoughts, but if there was a medication that worked for most of us, for a long period od time.............this story would be everywhere.
That's why I think OUR VOICES COUNT RIGHT NOW.
I'm with ya babe.........got my broom and my gloves, ready to go at it.
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ViewsAskew
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Oh, I'm so sorry you're back to a bad place with this. I'm hovering, but it's not like it was, thankfully, and sounds much better than where you are. It just is threatening a lot and coming and going thoughout the day and night. During the day I can usually get away with little stretches and side to side wiggles. It's not the have to get up, can't sit, drive you crazy stuff.
Boy, I'm sure trying my darndest to educate everyone I come across. My family (who all have it) glaze over when they see me coming and cut me off without listening
. I get so annoyed on the message boards (I watch 4, but primarily participate here) when people come in with their one size fits all treatments (like the magnesium thing). I actually got kicked out of one board because I kept posting links to better info to try and educate people and it wasn't allowed 
. I recently printed out the letter I wrote to the doctors (somewhere in the General TOpics section) and addressed them to 30 local docs that are on the list here as treating RLS. I don't know if they'll pay attention, but maybe someone will.
You know where I've heard the most about the RLS? It's because of the soap thing! That article must have gotten reprinted a gazillion times. I've had family and friends call me to tell me to put soap in my bed. Too bad it doesn't do a thing for me except bother me 'cus I can't stand perfumey smells around me
. Gosh, am I high maintenance with the sleep stuff or what?!!! Gotta have the memory foam bed and pillow, can't let the DH touch me, have to have the body pillow, must be cool and not hot, no air blowing on me, not icky smelly cleaning smells, no clothes to touch my legs, have to have lotion on immediately before bed, have to have earplugs, etc. 
.
I hope it gets better for you soon; I wouldn't wish this on anyone, especially not you, Becat
. Probably because we met, but those of you from the conference are extra special. And you always say nice things about me 
.
Boy, I'm sure trying my darndest to educate everyone I come across. My family (who all have it) glaze over when they see me coming and cut me off without listening
. I get so annoyed on the message boards (I watch 4, but primarily participate here) when people come in with their one size fits all treatments (like the magnesium thing). I actually got kicked out of one board because I kept posting links to better info to try and educate people and it wasn't allowed . I recently printed out the letter I wrote to the doctors (somewhere in the General TOpics section) and addressed them to 30 local docs that are on the list here as treating RLS. I don't know if they'll pay attention, but maybe someone will.
You know where I've heard the most about the RLS? It's because of the soap thing! That article must have gotten reprinted a gazillion times. I've had family and friends call me to tell me to put soap in my bed. Too bad it doesn't do a thing for me except bother me 'cus I can't stand perfumey smells around me
. Gosh, am I high maintenance with the sleep stuff or what?!!! Gotta have the memory foam bed and pillow, can't let the DH touch me, have to have the body pillow, must be cool and not hot, no air blowing on me, not icky smelly cleaning smells, no clothes to touch my legs, have to have lotion on immediately before bed, have to have earplugs, etc. .
I hope it gets better for you soon; I wouldn't wish this on anyone, especially not you, Becat
. Probably because we met, but those of you from the conference are extra special. And you always say nice things about me .-
cornelia
Well, that's 3 of us who are getting desperate because meds are not working properly anymore. To hell with RLS! At least I have a docter's appointment in 12 days time, so I guess I'm lucky.
Ann, I feel angry because you have been kicked out of a board, trying to educate people on this affliction. Education is sooo important. This must be a silly board; they should be thrilled to pieces that someone takes the trouble to inform them in order to get better lives with RLS.
Keep up the good work!
Corrie
Ann, I feel angry because you have been kicked out of a board, trying to educate people on this affliction. Education is sooo important. This must be a silly board; they should be thrilled to pieces that someone takes the trouble to inform them in order to get better lives with RLS.
Keep up the good work!
Corrie
I'M STILL GOING CRAZY...COUNT ME IN AS AN UNHAPPY CUSTOMER
I had the most vivid, horrible nightmares (yes, plurual) last night. I woke my husband up--he was upstairs in our bedroom and I was on the family room couch--SCREAMING at the top of my lungs. I remember having sleep paralysis, you know--when you are asleep but can't move and you try to scream but nothing comes out. I think when you do that, you're in some kind of stage between asleep and trying to wake up. But, I don't remember screaming.
I'm on Mirapex for restless legs, and it's never bothered me before, but I know several people who are on it who experience very vivid nightmares. I'm thinking that it is probably the Mirapex.
And, now my feet itch so bad, way down deep--I've been scratching as hard as I can with a hairbrush--it doesn't help. I scratch until they bleed, literally, and I think I'm going to go insane.
I sleep in the family room because I know I would keep my husband awake if I try to stay in bed with him all night. When I was screaming, he was down here trying to wake me up. Then I was afraid to stay down here--the dreams were that bad. So, I slept with him--but I didn't sleep. I toss, I turn, I hurt, and then I start itching--I've used too much topical anti-itch cream, I know it's not good for me. BUT I'M GOING TO GO CRAZY!!! I CAN'T STAND MUCH MORE OF THIS. The ER will be another $100, just walking through the door. The dermatologist's receptionist said they would call me if they had a cancellation. NO CALL! I told her how bad this is--to no avail. I see my GP Monday, but I'm going to lose my mind befor then. I've tried being good, tried putting it out of my mind, tried not to complain, but I CAN'T STAND IT. I know I am complaining way too much--it's around 4:30 am, I've had maybe 3 hours sleep, but totally interrupted--JUST GIVE ME SOMETHING TO PUT ME OUT OF MY MISERY! PLEASE! And, on top of the itching, I'm got this very sharp, catch your breath, pain in my left lung or ribs right unde my left breast. Someone told me about Costochindritis and I think that's what is wrong with my ribs. OMG, JUST SHOOT ME!
JUST ADD ME TO YOUR LIST! Right now, the way I feel, I would march right in somwhere, ANYWHERE, where some of these people are gathered in a group (the people who don't blieve us) and let them watch me for
about 15 minutes. My poor husband came down with this agonized, desparate look on his face, wanting to much to help me, seeing the misery I'm in. Of course, if I went to ER, you know what they would want to give me -- BENADRYL! Right now, I think I'd rather have my legs go crazy, but, of course, I don't mean that. It's pretty bad when WE have to "pick our poisen". I WISH MY NEUROLOGIST COULD SEE ME NOW! I could call him again, and again, and again--but, of course, he thinks I should just IGNORE the itching--I'm thinking about it too much! OF COURSE I'M THINKING ABOUT IT -- IT'S DRIVING ME CRAZY!
Jan
Jan
I'm on Mirapex for restless legs, and it's never bothered me before, but I know several people who are on it who experience very vivid nightmares. I'm thinking that it is probably the Mirapex.
And, now my feet itch so bad, way down deep--I've been scratching as hard as I can with a hairbrush--it doesn't help. I scratch until they bleed, literally, and I think I'm going to go insane.
I sleep in the family room because I know I would keep my husband awake if I try to stay in bed with him all night. When I was screaming, he was down here trying to wake me up. Then I was afraid to stay down here--the dreams were that bad. So, I slept with him--but I didn't sleep. I toss, I turn, I hurt, and then I start itching--I've used too much topical anti-itch cream, I know it's not good for me. BUT I'M GOING TO GO CRAZY!!! I CAN'T STAND MUCH MORE OF THIS. The ER will be another $100, just walking through the door. The dermatologist's receptionist said they would call me if they had a cancellation. NO CALL! I told her how bad this is--to no avail. I see my GP Monday, but I'm going to lose my mind befor then. I've tried being good, tried putting it out of my mind, tried not to complain, but I CAN'T STAND IT. I know I am complaining way too much--it's around 4:30 am, I've had maybe 3 hours sleep, but totally interrupted--JUST GIVE ME SOMETHING TO PUT ME OUT OF MY MISERY! PLEASE! And, on top of the itching, I'm got this very sharp, catch your breath, pain in my left lung or ribs right unde my left breast. Someone told me about Costochindritis and I think that's what is wrong with my ribs. OMG, JUST SHOOT ME!
JUST ADD ME TO YOUR LIST! Right now, the way I feel, I would march right in somwhere, ANYWHERE, where some of these people are gathered in a group (the people who don't blieve us) and let them watch me for
about 15 minutes. My poor husband came down with this agonized, desparate look on his face, wanting to much to help me, seeing the misery I'm in. Of course, if I went to ER, you know what they would want to give me -- BENADRYL! Right now, I think I'd rather have my legs go crazy, but, of course, I don't mean that. It's pretty bad when WE have to "pick our poisen". I WISH MY NEUROLOGIST COULD SEE ME NOW! I could call him again, and again, and again--but, of course, he thinks I should just IGNORE the itching--I'm thinking about it too much! OF COURSE I'M THINKING ABOUT IT -- IT'S DRIVING ME CRAZY!
Jan
Jan
No one is alone who had friends.
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ViewsAskew
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What is it. . .an RLS Full Moon for RLS Foundation Chat Memebers??????? Brady can't get meds. Meds aren't working for Becat and Corrie and me (and probably others that I don't know about or can't remember). Jan can't get a doctor to see her and she needs one immediately. Most of us have or have had virtual numbskulls for docs. I'll second Brady's AAAAARRRRRRGGGGGHHHHH.
So, next topic for rant. Why is it that a GP can fit us in the same day when we have a cold or stub a toe, but a sleep doc or neuro or other specialist can't 'fit' us in for months? I'm now a patient of the doc I had to wait almost 5 months to get to see; if I called for an appointment right now, it would be 3 months wait. They would put me on a cancellation list, though; isn't that nice of them? I like her and think she's the most knowledgeable RLS doc I've seen, but it's not helpful when everything goes to hell in a handbasket. When someone is in the position Jan is in, how can the dermatologist not agree to see her right away? It seems criminal to me.
Corrie, it was sort of fun getting kicked out of that board. I joined it about the same time as this one. Of course I didn't read the fine print about the rules. The first time I posted something with a link to this site (not this board) and the reference to the link was deleted, I thought it was an accident. So I did it again. It was deleted again. The next time, they deleted my WHOLE message. So, I posted a message to the moderators exlaining what a ridiculous thing it was to delete posts to helpful sites and sort of dared the moderator to delete it. He did and removed my rights so I could no longer post! The rules, once I read them, state that no posts can be made that include links to commercial sites or to other message boards. Because the RLS.org (this site) also has a board, even though it has some great RLS help on it, they deleted the link to it. So all of the people on that board spend their time posting a lot of misinformation and asking questions that no on can really answer.
BTW, where does the expression, "everything goes to hell in a handbasket" come from? And what does it really mean? Must be time for me to stop posting and get some work done.
Ann
So, next topic for rant. Why is it that a GP can fit us in the same day when we have a cold or stub a toe, but a sleep doc or neuro or other specialist can't 'fit' us in for months? I'm now a patient of the doc I had to wait almost 5 months to get to see; if I called for an appointment right now, it would be 3 months wait. They would put me on a cancellation list, though; isn't that nice of them? I like her and think she's the most knowledgeable RLS doc I've seen, but it's not helpful when everything goes to hell in a handbasket. When someone is in the position Jan is in, how can the dermatologist not agree to see her right away? It seems criminal to me.
Corrie, it was sort of fun getting kicked out of that board. I joined it about the same time as this one. Of course I didn't read the fine print about the rules. The first time I posted something with a link to this site (not this board) and the reference to the link was deleted, I thought it was an accident. So I did it again. It was deleted again. The next time, they deleted my WHOLE message. So, I posted a message to the moderators exlaining what a ridiculous thing it was to delete posts to helpful sites and sort of dared the moderator to delete it. He did and removed my rights so I could no longer post! The rules, once I read them, state that no posts can be made that include links to commercial sites or to other message boards. Because the RLS.org (this site) also has a board, even though it has some great RLS help on it, they deleted the link to it. So all of the people on that board spend their time posting a lot of misinformation and asking questions that no on can really answer.
BTW, where does the expression, "everything goes to hell in a handbasket" come from? And what does it really mean? Must be time for me to stop posting and get some work done.
Ann
Last edited by ViewsAskew on Fri Mar 04, 2005 4:52 pm, edited 1 time in total.
OMG ANN, EVERYTHING IS GOING TO HELL IN A HANDBASKET!
It's Jan-
You said a mouthful, Ann. It's ridiculous when Brady can't get help, you can't get in to see your new neuro for such a long time and--I'd like to know what the heck they constitute an "EMERGENCY" at the dermoloigist. What a world, what a world.
I'm sitting here going to sleep. Think I'll try!
Love ya
Jan
You said a mouthful, Ann. It's ridiculous when Brady can't get help, you can't get in to see your new neuro for such a long time and--I'd like to know what the heck they constitute an "EMERGENCY" at the dermoloigist. What a world, what a world.
I'm sitting here going to sleep. Think I'll try!
Love ya
Jan
No one is alone who had friends.
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cornelia
Jan, I really can't find the right words to say that I would want to comfort you, but I was just thinking: if I'm not mistaken, you are on a high dose of Mirapex. Is it possible to take less? I learned from my neuro that more is not always better and it might do something good for side-effects.
And another thing: you wrote that you would like your neuro to see the state you are in. Well, let your husband make a video of you whilst having such a bad time. I am serious, why not? Send it to him prior to your appointment. You never know, but maybe it helps. I would do ANYTHING.
I hope you are a bit better by now, but I guess not.
BTW: about grief. I have had a very long time of grief. Like you, I had to get used to the idea that I would never be the same active and emotional strong person as before. Never (unless a cure will be found for this disorder). I think it lasted almost a year. I try to live around RLS and stop forcing myself to something I really can't do anymore. Not for anybody. It sounds selfish, but I have to, otherwise RLS will be more horrible as it is by itself. That has helped me and also the fact that I try to live ONLY in the present, by the hour preferably.
Thinking of you,
Corrie
And another thing: you wrote that you would like your neuro to see the state you are in. Well, let your husband make a video of you whilst having such a bad time. I am serious, why not? Send it to him prior to your appointment. You never know, but maybe it helps. I would do ANYTHING.
I hope you are a bit better by now, but I guess not.
BTW: about grief. I have had a very long time of grief. Like you, I had to get used to the idea that I would never be the same active and emotional strong person as before. Never (unless a cure will be found for this disorder). I think it lasted almost a year. I try to live around RLS and stop forcing myself to something I really can't do anymore. Not for anybody. It sounds selfish, but I have to, otherwise RLS will be more horrible as it is by itself. That has helped me and also the fact that I try to live ONLY in the present, by the hour preferably.
Thinking of you,
Corrie
Hi Corrie
It's Jan
I really appreciate your replies and advice, Corrie! Yep, I'm on 5 mgs. of Mirapex, but I had already started to cut down on that about 2 weeks ago.
I'm now only taking 2 mg. a day, which is less than I've been taking for quite a while and my legs are fine. I slept fairly good last night for me. I woke up about 3 am and was scratching like mad. But, I'm hopeful that the Prednisone will help and that I don't blow up like a bigger balloon. But I'm only on it for 14 days.
I'm firing my neuro. Actually, I already have, just haven't told them. I've got to find a new one. Preferably close to home. Corrie, I really am better than I was a day ago. I'm really trying to have a positive attitude--it's just so hard, as I'm sure you know, when you don't get sleep and you just itch so badly it drives you insane.
I have an appt. with my family doctor on Monday. I'm going to insist that I have some help with sleeping (like Ambien). If I don't sleep, I'll never get better! Been there before.
As far as grieving is concerned, I'm talking about the fibromyalgia. I've had RLS, actually been diagnozed for 20 years, and have probably had it my whole life, but actually know that I've had it over 25 yrs. I am at the
angry stage of grieving! Finally! My very wise friend, BECAT, gave me a homework assignment--get the stages of grief and see where I am! It's the same as grieving for a loved one who has died, grieving a divorce--anything that changes you from the person you were. And, you are absolutely right--live in the present. That actually is one thing that fibro has done for me. It has made me a little bit more patient, has forced me to slow down, and I'm getting to know myself again. And, believe it or not, I like me! hehe
Thanks for your help--ALL OF YOU AGAIN, THANKS!
I'll talk to you later and keep all of you updated!
Love,
Jan
I really appreciate your replies and advice, Corrie! Yep, I'm on 5 mgs. of Mirapex, but I had already started to cut down on that about 2 weeks ago.
I'm now only taking 2 mg. a day, which is less than I've been taking for quite a while and my legs are fine. I slept fairly good last night for me. I woke up about 3 am and was scratching like mad. But, I'm hopeful that the Prednisone will help and that I don't blow up like a bigger balloon. But I'm only on it for 14 days.
I'm firing my neuro. Actually, I already have, just haven't told them. I've got to find a new one. Preferably close to home. Corrie, I really am better than I was a day ago. I'm really trying to have a positive attitude--it's just so hard, as I'm sure you know, when you don't get sleep and you just itch so badly it drives you insane.
I have an appt. with my family doctor on Monday. I'm going to insist that I have some help with sleeping (like Ambien). If I don't sleep, I'll never get better! Been there before.
As far as grieving is concerned, I'm talking about the fibromyalgia. I've had RLS, actually been diagnozed for 20 years, and have probably had it my whole life, but actually know that I've had it over 25 yrs. I am at the
angry stage of grieving! Finally! My very wise friend, BECAT, gave me a homework assignment--get the stages of grief and see where I am! It's the same as grieving for a loved one who has died, grieving a divorce--anything that changes you from the person you were. And, you are absolutely right--live in the present. That actually is one thing that fibro has done for me. It has made me a little bit more patient, has forced me to slow down, and I'm getting to know myself again. And, believe it or not, I like me! hehe
Thanks for your help--ALL OF YOU AGAIN, THANKS!
I'll talk to you later and keep all of you updated!
Love,
Jan
No one is alone who had friends.
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ViewsAskew
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Drug Holiday and other thoughts
Corrie, such wise thoughts. Less can definitely be more. This is so important. I think the idea of drug holidays NEED to be looked into more. Instead of upping our dose of a drug when it seems not to be working as well, many people are finding that taking a holiday from it for a couple of weeks allows the original drug to be AS effective at the ORIGINAL low dose. Many of us have docs that just keep upping our dose and I think it complicates things terribly. I'm positive that doing that is what landed my in 24/7 RLS hell. By stopping the drug (and going through worse agony for two weeks because nothing the docs gave me worked) I was able to decrease my dose of my main drug from .75 total throughout the day to .125 total and it was effective.
Of course, 3 months later, the dose is ineffective again and I'm getting augmentation and breakthrough. I'm pretty sure that if I stop it for a couple of weeks, it will work again at the low dose.
Jan, did any of those people I sent you link to have docs that were close to you? They must not have or you wouldn't still be looking
. My thoughts are with you to find someone soon.
Grieving is so important. Becat and I talked about it at the conference. It can apply to so many things. MY DH has sleep apnea and his CPAP machine is wonderful. He had to spend a few weeks last year grieving that we won't be able to do the type of camping we used to 'cus there's no electricity and he can't take his machine. It may seem trivial, but those things are not. They make us realize that we have changed and we have to let go of things. Things that may have defined us to ourselves. We have to find a way to adjust and accept.
I just came back from my Nia class (dance, yoga, martial arts combined) that I love. Twice during the class I was struck with an intense feeling - the first was love the second was peace. They both were extremely strong physical sensations. Maybe those are coming from Lyndarae, maybe the universe. Wherever, may they also find their way to all of you.
Ann
Of course, 3 months later, the dose is ineffective again and I'm getting augmentation and breakthrough. I'm pretty sure that if I stop it for a couple of weeks, it will work again at the low dose.
Jan, did any of those people I sent you link to have docs that were close to you? They must not have or you wouldn't still be looking
. My thoughts are with you to find someone soon.
Grieving is so important. Becat and I talked about it at the conference. It can apply to so many things. MY DH has sleep apnea and his CPAP machine is wonderful. He had to spend a few weeks last year grieving that we won't be able to do the type of camping we used to 'cus there's no electricity and he can't take his machine. It may seem trivial, but those things are not. They make us realize that we have changed and we have to let go of things. Things that may have defined us to ourselves. We have to find a way to adjust and accept.
I just came back from my Nia class (dance, yoga, martial arts combined) that I love. Twice during the class I was struck with an intense feeling - the first was love the second was peace. They both were extremely strong physical sensations. Maybe those are coming from Lyndarae
, maybe the universe. Wherever, may they also find their way to all of you.
Ann
Hi Ann
It's Jan
The problem with finding a new neuro is I'm trying to find one who will take my insurance--THAT'S VITAL! And, I would like to find one who will also treat my fibro so I only have to go to one doctor for both. I'm helping the southern Illinois Support Group Leader (kind of her assistant), and she may have someone I can call. I really apprecite your help, Ann. I still have those links, and, at the time, didn't follow up. But, I probably will! I would like to avoid going to St. Louis because I have trouble driving by myself for long distances (even just an hour) without falling asleep. NOT GOOD!
You both, Corri and Ann, are really giving me good advice. All of my friends have. I appreciate it so much. After talking to Becat and several others and constantly reading about people taking drug holidays, I decided to cut back on some of the meds I was taking, also. I couldn't go off Effexor or Paxil cold turkey (or Klonopin), but I have cut back on Mirapex substantially. I went from 5 to 2 mg. daily.
Ann, thanks for your good thoughts. Same to you, too. This WILL be figured out--I know that. I'm just having a really hard time now. But, I am handling it better than I would have a year or two ago because of this support group.
If either of you think of anything else, feel free to pass it on! I'm certainly willing to listen, and it may be something I haven't thought of and would like to try!
Love to you both.
Jan
The problem with finding a new neuro is I'm trying to find one who will take my insurance--THAT'S VITAL! And, I would like to find one who will also treat my fibro so I only have to go to one doctor for both. I'm helping the southern Illinois Support Group Leader (kind of her assistant), and she may have someone I can call. I really apprecite your help, Ann. I still have those links, and, at the time, didn't follow up. But, I probably will! I would like to avoid going to St. Louis because I have trouble driving by myself for long distances (even just an hour) without falling asleep. NOT GOOD!
You both, Corri and Ann, are really giving me good advice. All of my friends have. I appreciate it so much. After talking to Becat and several others and constantly reading about people taking drug holidays, I decided to cut back on some of the meds I was taking, also. I couldn't go off Effexor or Paxil cold turkey (or Klonopin), but I have cut back on Mirapex substantially. I went from 5 to 2 mg. daily.
Ann, thanks for your good thoughts. Same to you, too. This WILL be figured out--I know that. I'm just having a really hard time now. But, I am handling it better than I would have a year or two ago because of this support group.
If either of you think of anything else, feel free to pass it on! I'm certainly willing to listen, and it may be something I haven't thought of and would like to try!
Love to you both.
Jan
No one is alone who had friends.
Hello and hugs to all
Hello to all and of course, some hugs.
I'm sure what I learned from the Quality of Life statements, was that there is grief. Changing, Reoccuring, Grief.
If it's not the emotional state that this can leave us in, it's a physical one as well. Combine them at some point and you have the perfect storm.
When your body is attacking your daily life, you slowly start to break down. It's a sinking feeling, but you struggle to fight it. At some point, you may simply let it down. Go through it. Live with it all, it changes you.
The process of grief takes many forms and comes out in many ways. No one does this the same or at the same pace.
When the anger hits, change is shortly comng. It's all in how you deal with that anger that sets a course. I got mad the first time and got more demanding. I wanted a change and was going to find one. I used that anger for a better me......I hope.
The Quality of Life statement perfectly stated my case.........at that time. It was hard to write it, I had to really think about what my life was. I know that this will not be my only time to grieve my RLS. As I get older and medication choices are running out. I will grieve again, I'm sure of it. There will be changes in my life and in me. My Quality of life statement will change with me.
Writing another one is going to be just as hard, but I see it as helpful. I got things of my chest, released some worded rage. I gave hope to my future and said goodbye to the me of past. I read mine from last time now, look how far I've come.
Awwwwwwww, hope, strength, and sense of some control.
Worthy, We're All wWorthy of That.
Hugs to all.
I'm sure what I learned from the Quality of Life statements, was that there is grief. Changing, Reoccuring, Grief.
If it's not the emotional state that this can leave us in, it's a physical one as well. Combine them at some point and you have the perfect storm.
When your body is attacking your daily life, you slowly start to break down. It's a sinking feeling, but you struggle to fight it. At some point, you may simply let it down. Go through it. Live with it all, it changes you.
The process of grief takes many forms and comes out in many ways. No one does this the same or at the same pace.
When the anger hits, change is shortly comng. It's all in how you deal with that anger that sets a course. I got mad the first time and got more demanding. I wanted a change and was going to find one. I used that anger for a better me......I hope.
The Quality of Life statement perfectly stated my case.........at that time. It was hard to write it, I had to really think about what my life was. I know that this will not be my only time to grieve my RLS. As I get older and medication choices are running out. I will grieve again, I'm sure of it. There will be changes in my life and in me. My Quality of life statement will change with me.
Writing another one is going to be just as hard, but I see it as helpful. I got things of my chest, released some worded rage. I gave hope to my future and said goodbye to the me of past. I read mine from last time now, look how far I've come.
Awwwwwwww, hope, strength, and sense of some control.
Worthy, We're All wWorthy of That.
Hugs to all.
Nag, nag, nag, nag... PLEASE! Next week would be a good time to nag. -
Mary Pierce
- Posts: 5
- Joined: Fri Mar 04, 2005 2:31 am
Too Much Press?
Friends, too much press does seem to be a problem as I have had many people tell me they have rls but it doesn't keep them from sleeping, sitting still, itching, twitching, whatever. I was in agony every time I got in the car.
After 3-4 minutes, I was moving arms, legs, etc. Nothing I could do would help. then when I had to drive, it was really tough when I had to keep lifting my foot off gas pedal. These are only a few instances of what I have experienced but right now with my combination of iron, Mirapex and Klonopin I am the best I have been in years. Don't know if it will last but I will enjoy my current good condition as long as I can.
I feel for all the rest of you (us) suffering this affliction.
Peace, love and health to all.
Mary Pierce
After 3-4 minutes, I was moving arms, legs, etc. Nothing I could do would help. then when I had to drive, it was really tough when I had to keep lifting my foot off gas pedal. These are only a few instances of what I have experienced but right now with my combination of iron, Mirapex and Klonopin I am the best I have been in years. Don't know if it will last but I will enjoy my current good condition as long as I can.
I feel for all the rest of you (us) suffering this affliction.
Peace, love and health to all.
Mary Pierce
Hi Mary
Hi Mary,
I'm so glad to hear your doing well on your treatment. It's important for us all to hear about when something does work for someone.
It gives everyone hope. Keep telling your story.
I agree with you as well, the amount of education needed is, well........we need tons of it.
This thread alone have spurred some great conversation. I think this community has so much to do about how it's seen. I'm sure it to their benefit to spread the word on a grander scale. The year is young we'll how it goes>..........?
Interesting reading Group.
I'm so glad to hear your doing well on your treatment. It's important for us all to hear about when something does work for someone.
It gives everyone hope. Keep telling your story.
I agree with you as well, the amount of education needed is, well........we need tons of it.
This thread alone have spurred some great conversation. I think this community has so much to do about how it's seen. I'm sure it to their benefit to spread the word on a grander scale. The year is young we'll how it goes>..........?
Interesting reading Group.