Becat,
I agree with Ann. Totally. Methadon will not be the end. Maybe with the knowledge we have now. But new meds and/or therapies will come. Maybe iron by IV, maybe BOTOX (LOL), maybe combination drugs of a painkiller/DA.
So please consider it and choose for QoL. One thing: can't remember if you tried Tramadol or the slow-relieve version of it.
Thinking of you,
Corrie
My RLS Mountain....
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
Hey my Lynne,
there is a penguin in your corner. i am beginning to believe that there is no help. I feel your pain, every day 24 hours a day...some days i wish i didn't have to work so i could medicate myself into a coma...but i can't do that so i have to learn how to live with the pain.
hey, my mom does it so i can't be the whimp.
I wish i had something worth saying to help you but all i can do is offer myself as your friend and my love and understanding....
love you so much
Penguin
there is a penguin in your corner. i am beginning to believe that there is no help. I feel your pain, every day 24 hours a day...some days i wish i didn't have to work so i could medicate myself into a coma...but i can't do that so i have to learn how to live with the pain.
hey, my mom does it so i can't be the whimp.
I wish i had something worth saying to help you but all i can do is offer myself as your friend and my love and understanding....
love you so much
Penguin
Beware the Penguin
Lynne
That's what this place is for----VENTING (which is what you were doing), reaching out and just letting us know how you are...... Everything isn't always black and white in this world. I may think there's a solution to someone's problem, but I don't always know all the facts--- That's not to say that anyone here who answered you did so with anything else but real concern for you. Your friends here all love you.
But, honey, please don't shut down and stop "complaining"--although I don't think that's what you were dong. I almost got on in the middle of the night, myself---with the same problems everyone has heard over and over. I think of this place as a "voice in the night" that I can talk to--- We all need that, everyone one of us. I know that I do.
You have been such a support for me---
I love you!
Jan
That's what this place is for----VENTING (which is what you were doing), reaching out and just letting us know how you are...... Everything isn't always black and white in this world. I may think there's a solution to someone's problem, but I don't always know all the facts--- That's not to say that anyone here who answered you did so with anything else but real concern for you. Your friends here all love you.
But, honey, please don't shut down and stop "complaining"--although I don't think that's what you were dong. I almost got on in the middle of the night, myself---with the same problems everyone has heard over and over. I think of this place as a "voice in the night" that I can talk to--- We all need that, everyone one of us. I know that I do.
You have been such a support for me---
I love you!
Jan
No one is alone who had friends.
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ViewsAskew
- Moderator
- Posts: 16585
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
I know I didn't take your post as whining, complaining, or wallowing in your own self-pity! It's hard to move on. It takes courage to look ourselves in the eye and acknowledge our fears and make decisions to face them. It sounds to me like you have some strong fears and concerns about making this step. I just don't want those to prevent you from finding a bit of comfort and help. Because I care for you, I don't want to see you suffer. You don't deserve to do that to yourself. You are strong and can find a way through those fears. I know that.
But as to complaining? You weren't. As to shutting up? Why are we here if not to be able to do what you did? If we can't all tell how we feel then there isn't too much purpose in being here.
But as to complaining? You weren't. As to shutting up? Why are we here if not to be able to do what you did? If we can't all tell how we feel then there isn't too much purpose in being here.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Walking After Midnight
- Posts: 649
- Joined: Sun Aug 21, 2005 5:23 am
- Location: Portage, Indiana
- Contact:
ViewsAskew wrote:I know I didn't take your post as whining, complaining, or wallowing in your own self-pity!
We love you Lynyrd we really do - ooh
When you're not with us we're really Blue - ooh.
hee hee.
I didn't take your post as whining either but if you do wanna whine...so what.
Whine away.
You've earned the right to a little whining, complaining and even wallowing in your own self pity if you wanna do that.
Also...two things.
I saw the "Crochette" thing you said a couple posts ago. All I can say...Cool.
Also...I was in the Chat room late last night, and for the first time someone else was actually in there. His name was Mike and he told me that he met you, Rubyslippers and Ann in Los Angeles. He told me to say HI.
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rlsseattle
- Posts: 14
- Joined: Sun Nov 06, 2005 8:32 pm
my rls mountain
Your writing is not complaining or seeking sympathy so much as letting the rest of us know that we are not alone with this. So keep it up with the raw emotion. We all have it, the same as you.
BTW, not all of us are "girls".
I now know that I have become a broken record when I see long-time members like yourself talking to me in their posts as if they are accountable to me when they don't ask a doctor to follow my suggestion. My ms-contin thing is obviously not for everyone, and if you feel comfortable with some other medication, you should definitely discuss that with your doctor.
I certainly am not a doctor and do not have all the answers. It has just been a very good solution for me. And when I see others thrashing around looking for solutions, I can only suggest the ones with which I am familiar.
As you know, I went through all the others first.
One thing I never have understood, though, is this idea the doctors have that we should take a "holiday" from the drugs. Would they suggest that to a heart patient, or a Parkinson's patient? Why the to a RLS sufferer. To me it seems as if they still don't understand the severity of a bad case of this stuff. Why not take their cancer patients off medication for pain? Is it because THOSE people have a REAL disease and we don't. (Don't get me wrong, I live with a cancer patient and have had relatives die from it,, so I am not making light of it. My point is only that for some reason doctors don't get the importance of treating RLS like any other disease.)
Having said that, I can't imagine testing myself to see how bad I am, as you did. That was a gutsy thing to do. For me, I just go a few hours longer than I should and I can tell it is still there. No need for me to go a day or two. It would be awful. I actually take other medications for long-term problems, but have told my doctors that if I had to give up everything but one, that one would be the medication for rls. I would be miserable without the others, but the rls would simply be unbearable.
I hope you have everything straightened out by now. And I hope you take the next step, whatever that is, to break this disease, or at least make life tolerable. Using the resources available to you is not a surrender. No general fighting a war would say anything like that. The point is to win, no matter what it takes to live a normal life. Just thank God the medications are there for you.
Having said all that, I do have one question. You say that you are in the top 2% of sufferers. I was interested in understanding how that is determined--what level of symptoms they look at, how do we measure our own or somehow determine for ourselves where we stand in the world of rls sufferers. Is there some place you can tell the rest of us where to go, or, seeing as how we are all anonymous, tell us more about the particular symptoms that you experience that would help understand what a really bad case, such as yours, is like?
I think if you could do something along those lines you would make a real contribution (another one) to the group's knowledge.
rlsseattle
BTW, not all of us are "girls".
I now know that I have become a broken record when I see long-time members like yourself talking to me in their posts as if they are accountable to me when they don't ask a doctor to follow my suggestion. My ms-contin thing is obviously not for everyone, and if you feel comfortable with some other medication, you should definitely discuss that with your doctor.
I certainly am not a doctor and do not have all the answers. It has just been a very good solution for me. And when I see others thrashing around looking for solutions, I can only suggest the ones with which I am familiar.
As you know, I went through all the others first.
One thing I never have understood, though, is this idea the doctors have that we should take a "holiday" from the drugs. Would they suggest that to a heart patient, or a Parkinson's patient? Why the to a RLS sufferer. To me it seems as if they still don't understand the severity of a bad case of this stuff. Why not take their cancer patients off medication for pain? Is it because THOSE people have a REAL disease and we don't. (Don't get me wrong, I live with a cancer patient and have had relatives die from it,, so I am not making light of it. My point is only that for some reason doctors don't get the importance of treating RLS like any other disease.)
Having said that, I can't imagine testing myself to see how bad I am, as you did. That was a gutsy thing to do. For me, I just go a few hours longer than I should and I can tell it is still there. No need for me to go a day or two. It would be awful. I actually take other medications for long-term problems, but have told my doctors that if I had to give up everything but one, that one would be the medication for rls. I would be miserable without the others, but the rls would simply be unbearable.
I hope you have everything straightened out by now. And I hope you take the next step, whatever that is, to break this disease, or at least make life tolerable. Using the resources available to you is not a surrender. No general fighting a war would say anything like that. The point is to win, no matter what it takes to live a normal life. Just thank God the medications are there for you.
Having said all that, I do have one question. You say that you are in the top 2% of sufferers. I was interested in understanding how that is determined--what level of symptoms they look at, how do we measure our own or somehow determine for ourselves where we stand in the world of rls sufferers. Is there some place you can tell the rest of us where to go, or, seeing as how we are all anonymous, tell us more about the particular symptoms that you experience that would help understand what a really bad case, such as yours, is like?
I think if you could do something along those lines you would make a real contribution (another one) to the group's knowledge.
rlsseattle
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cornelia
About the 2%:
Dr B said in several of his answers to questions from patients that almost 100% (I think he mentioned 98 to 99%) can have a normal life with the meds that are available now. Who am I to question this formidable docter? But I have doubts. What do you think? Do we, the people on this board, belong to the 1 or 2% that can't be helped adequately?
Dr Rotenberg fom the Botox research mentions that 15-20% fail treatment.
Food for thinking.
Love you all, Corrie
Dr B said in several of his answers to questions from patients that almost 100% (I think he mentioned 98 to 99%) can have a normal life with the meds that are available now. Who am I to question this formidable docter? But I have doubts. What do you think? Do we, the people on this board, belong to the 1 or 2% that can't be helped adequately?
Dr Rotenberg fom the Botox research mentions that 15-20% fail treatment.
Food for thinking.
Love you all, Corrie
Hi Corrie,
I'm with you, I honestly think we see much of that 2% on this board. That is still a big number of people if 1 in 10 adults have RLS.
Yes, I have been spoken to by a soc about Botox, but honestly have not heard enough about it to know if it's a good idea or not.
I honestly believe that if they, the docs, all catch up with us, the everyday suffer, they will have no clue how to treat this properly. I wish Dr. B. would go on some major campaign to educate the masses, I'd help him in any way I could. I love his compassion and approach to us the real RLSers, not the masses of docs that think they know. He knows us.
Yes, Corrie I wonder if there will come a day that I have no choices left. I honestly did not believe until about 2 yrs. ago now, that I could live to see 45. I didn't see how I could without sleep and pain control. My body and mind were failing me. I secretly was preparing to be gone, not by my own hand, but by something that was secondary but more dangerous. I do think that long term sleep deprivation is harmful. Mine was.
I did get my meds yesterday and my legs are simply so sore from the pulling, but I slept for 4-5 maybe even 6 hours straight. Blessed is the one that gets to snore. LOL
Love right back to you Corrie,
Lynne
I'm with you, I honestly think we see much of that 2% on this board. That is still a big number of people if 1 in 10 adults have RLS.
Yes, I have been spoken to by a soc about Botox, but honestly have not heard enough about it to know if it's a good idea or not.
I honestly believe that if they, the docs, all catch up with us, the everyday suffer, they will have no clue how to treat this properly. I wish Dr. B. would go on some major campaign to educate the masses, I'd help him in any way I could. I love his compassion and approach to us the real RLSers, not the masses of docs that think they know. He knows us.
Yes, Corrie I wonder if there will come a day that I have no choices left. I honestly did not believe until about 2 yrs. ago now, that I could live to see 45. I didn't see how I could without sleep and pain control. My body and mind were failing me. I secretly was preparing to be gone, not by my own hand, but by something that was secondary but more dangerous. I do think that long term sleep deprivation is harmful. Mine was.
I did get my meds yesterday and my legs are simply so sore from the pulling, but I slept for 4-5 maybe even 6 hours straight. Blessed is the one that gets to snore. LOL
Love right back to you Corrie,
Lynne
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ViewsAskew
- Moderator
- Posts: 16585
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
You know, Lynne, something you said gave me pause. I'm sure that a part of the RLS Foundation's charge is to educate doctors, but it is a slow and painful process. Of course, I'm not on their board and have no idea of how they work, but it seems that a lot more has to be done.
I bet it's hard to start and maintin a non-profit organization, but it's a though. We could start an educational RLS organization. Our goal would be education of doctors, not patients (though maybe it goes hand in hand). We'd probably have to get grant money from big pharma companies, so that might complicate things, but it could be done.
It would sure give us something to do with our evening spent pacing around
. I wonder if the doctors would meet us at 2 AM for meetings 
I doubt doctors want more accreditations, but it could be that. Or simply CEUs. I don't know what medical staff are required to earn. The focus could be first on sleep centers/clinics - ensuring all staff knows what RLS is, how to treat it, etc. Then neurologists. Then family docs. Of course, there are probably hundreds of thousands of these, so maybe it's not possible!
I bet it's hard to start and maintin a non-profit organization, but it's a though. We could start an educational RLS organization. Our goal would be education of doctors, not patients (though maybe it goes hand in hand). We'd probably have to get grant money from big pharma companies, so that might complicate things, but it could be done.
It would sure give us something to do with our evening spent pacing around
. I wonder if the doctors would meet us at 2 AM for meetings
I doubt doctors want more accreditations, but it could be that. Or simply CEUs. I don't know what medical staff are required to earn. The focus could be first on sleep centers/clinics - ensuring all staff knows what RLS is, how to treat it, etc. Then neurologists. Then family docs. Of course, there are probably hundreds of thousands of these, so maybe it's not possible!
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
-
Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
As usual I'm lolly-gagging around when I should be here for my friends. Maybe I need a computer that beeps at me when I should be paying attention. Becat you know how much I love you and I HATE what this is doing to you. I can't find my ruby slippers or I would be at your door right now. But I do have some info on what the Foundation is trying to do. A big part is research for a cure; yes, they are concerned about medications to help the symptoms but they are focusing on finding a cure. Their second big thing is education for everyone but especially the medical community. I was invited to the Board of Directors meeting last month as a representative of the Support Group Advisory Board. There was a lot of strategic planning going on about where the Foundation was headed in the next 6 years. It isn't my place to tell you all that was decided or discussed but I was truly impressed by the caring of this board for those afflicted by RLS. From what I gathered, they are very open to suggestions and requests from all of us. I was glad I went because I truly felt like it isn't just us trying to get something done, the Foundation is also. I know that it is expensive to go to the National Meeting in November, but that is a really good time for face-to-face discussions with Foundation staff and probably Board members. Just a thought. In the meantime, email the Foundation or set up a person to be intermediary between this board and theirs. They know we are out there, it's up to us to let them know what's important to us. I really think they will listen and respond.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)
My sweet Rubyslippers,
I could and will never doubt your love for me or your commitment to this community. Your wings shine my dear. National Convention, yeah I think I can make it. And you know I'm so shy about telling people how I feel about this community. LOL
I was simply stupid and let my meds run out and of course the doc went out of town, so decided to try without for a week.......which felt like a lifetime by the time my doc got back into town. Stupid, stupid move.
The sick part was going to pick up my meds (script), by then I was locked up and not walking. An "older" lady with a walker asked me to move aside, I was slowing her down. I just sat in the car and cried for a bit. uuufffaaaa, what can you do right somedays?
I snapped at Ann and Corrie, I just had so much going on on top of the pain and no sleep. Bad timing for me to write and then I have to learn to share what is going on sometimes to put things in the right "big Picture".....I have to learn that.
I love you and I know your a phone call, email, moon shine away. I'm keeping you in my heart, God must have known to keep that spot open for you, I need that laugh of yours, that fight, that friendship. You never let me down.
My prayers and with you and I want to know how you are sometime soon.
Love ya,
Lynne
I could and will never doubt your love for me or your commitment to this community. Your wings shine my dear. National Convention, yeah I think I can make it. And you know I'm so shy about telling people how I feel about this community. LOL
I was simply stupid and let my meds run out and of course the doc went out of town, so decided to try without for a week.......which felt like a lifetime by the time my doc got back into town. Stupid, stupid move.
The sick part was going to pick up my meds (script), by then I was locked up and not walking. An "older" lady with a walker asked me to move aside, I was slowing her down. I just sat in the car and cried for a bit. uuufffaaaa, what can you do right somedays?
I snapped at Ann and Corrie, I just had so much going on on top of the pain and no sleep. Bad timing for me to write and then I have to learn to share what is going on sometimes to put things in the right "big Picture".....I have to learn that.
I love you and I know your a phone call, email, moon shine away. I'm keeping you in my heart, God must have known to keep that spot open for you, I need that laugh of yours, that fight, that friendship. You never let me down.
My prayers and with you and I want to know how you are sometime soon.
Love ya,
Lynne