This is ugly! My best intentions, I swear.

For everything and anything else not covered in the other RLS sections.
becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

This is ugly! My best intentions, I swear.

Post by becat »

I'm an oldtimer on this board. Think member number 70 when I joined in Apr. of 2004. With some deletions, I see I've moved up to number 26 and this my 1740 post. Probably not my best one either.

Newbies DON"T FREAK OUT, This doesn't happen often, really ever. So just hang with me on this and keep coming back.


I've been around a bit, I guess. Yes, I'm old school about the board, no secret.
I stay because I want support and education for others, that might come after me.. I see me here 10 yrs from now. God Bless me I didn't have the guts to promise 10 yrs. when I joined. Why, because this has been a lifetime for me so far, and I passed on the genetics for a mean case. SO I have work to do before I have grandchildren to explain this to.
I want my grandchildren to have so many choices for a life style.

Although as a moderator and admin. person I can delete anyone or any post.......I only do with spammers, cons, or true trouble makers....Why, cause I'm really one of the members here. I'm not anyone special or I’m no different than anyone else. I just volunteer my time and my heart, like so many others here that you don't see their names on the first page. The power of this board is in each of you and your voice.

We are a mostly sleep deprived, medicated, tortured people that sometimes take something wrong or type something wrong. That will happen in cyberspace, the void of human interaction.

This is not a post that will make friends or win hearts, but I gotta say this out loud. So, I'm sorry if it offends anyone, not the intention....
....I'm not trying to tell any of you what to do when posting either. I like the openness of the board. That should stay intact, but we need to think about some of what we type as well.
I've been really uncomfortable with the tone of the education that we are providing, mostly the way we talk about medications.
We have people come here and expect advise, support and the hard task to share. Most of what we write we rarely say to others. Non Rlsers, unless close family do not understand.
Some might make the mistake of thinking we really do know it all. I don’t. But recent post over the last couple of months are coming down to just smack of take this or take that. Theres no way that we all now how right a med. Might be or not for some.

Look when I joined there were some simple rules. Maybe no one knows that.
1. Do not talk about medications unless you are sharing your experience. Maybe you can pull a link to show someone what to read or better understand, but don’t offer doses or tell them to change to brand xxx, because you are not a doctor.
2. Everyone is so slightly different that WHAT WORKS FOR ME MIGHT NOT FOR YOU. Thus why we push an RLS education and the medications most commonly used to treat RLS.
3. Use the least amount, in lowest class, in the purest form, for as long as you can..
There is an algorithum and it does have steps that are needed to follow for the comfort of the patient (for the most part) and the doctor treating you.
4. Be kind, this has become a family.


I realize that the title says Discussion Board, but honestly there's not much discussion going on any more. I wonder what people are learning? There use to be a discussions about medications, with an explanation about WHY that is the answer. I learned so much about RLS the basics in the older posts. Medications were an important issue, still are, always will be. But I know from what I hear from others and how I feel we aren’t to careful to think through what we tell people. There is more than a few that are uncomfortable about the direction our discussions are going.

We are free to write what we like, but with that come some responsibility. Ex; we have youngsters that visit here, would you want some unknown adult telling them to take something? I won’t We have people here looking for a fast answer, was there one for you? Maybe there is a reason for that, we needed doctors to work with us for a while.

I wish answers were easy, but for us most times they are not.
I understand this might make some people mad. Not meant to, not directed at anyone in perticular, but needed to be said.

Lynne

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

First of all, I want to thank you, Lynne, for the above post.

I have been uncomfortable with the tone of this board for some time. I won’t go into a lot of detail, because Lynne has done a very good job of saying what I feel. I will say that it has concerned me for quite some time that we, as a group, though not doctors or pharmacists (except for Fidgetboy), come across as experts in what medications people should, or should not, take for RLS. We are not doctors and that is not what this board is supposed to be. It is for support, plain and simple.

I know, believe me, how frustrating it is to find a doctor who can eventually help with RLS. But, I also know how dangerous it can be to take the wrong drug. And, I’m sorry to say, I know what it’s like to have someone you love addicted to prescription drugs.

Having said all of that, I want to say that I love this Board. I love what it stands for. I’ve been a member since May, 2004. Although I haven’t been posting much for a while, I used to post all of the time—as evidenced by the number of posts I have made.

I hope this forum can continue to be a source of hope to those who need it.

Jan
No one is alone who had friends.

Neco
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Post by Neco »

Part of the issue with what it used to be to you, and what it is like to you now is that, the same discussion can only be had so many times.

It's just a cold fact of life. Once something is discussed to death, it is likely to NOT resurface. This is the way it is on any forum; the only exception to this rule being new people that show up and don't pay attention, don't use the search function, etc.. They post the same questions over and over. But that's not really the point I guess.

It seem like you miss the engaging nature of real serious discussions about how & why things work and that sort of thing. I don't think you can ever really recapture that once it has played out to a certain degree, unfortunately.

But I don't think people should be telling each other what to take either.. Nor should others be blindly saying "OK!" so in that regard, I think the blame is about equal on all sides. There is a certain level of personal responsibility - something our society (at least in America) seems to be trying hard to destroy. I certainly hope I'm not part of this "problem", but at the same time if someone asks me what works and how and what I took and why; I'll likely tell them just the same, expecting them to be intelligent with the information and make an informed decision involving their physician.

I'm certainly aware that my amount of knowledge in questionable areas kind of throws me into the grey area as far as to what I tell others, however.. I'd like to think I'm not churning out drug addicts or experimenters based on advice I give :?

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Thank you Zach,
I like what you had to say completely.

I don't want the old board back. I'm glad you brought that up. I want this board to continue and grow. With that change will happen on it's own. That is ok.......really it's best for growth.

Yes, we do answer much the same questions. It's just a fact. No way around the basic of educating people with a new name for an old disorder.

My point about sharing your experience is just that share your experience.

Thanks again Jan and Zach.
Lynne

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

Zach you've made some great points: I don't think any of us wants to go backwards or even back to the way the board was in it's infancy. And yes, we will always be answering the same questins over and over again. But that shouldn't really bother us because that's where we were at the start and still are in many instances. If you've never been on a discussion board or on a new one, it takes awhile to figure out how it works and sometimes we need answers now! Anyway, since all this has come up I have something to share. This is long but I hope you will all bear with me.

I have finally decided to share something with all of you that happened a couple of months ago. It really upset and scared me and made me rethink what this board is about. I got a call from an older lady (upper 80’s) who was sure she had RLS. She told me her symptoms and that’s what it sounded like to me also. We talked about all kinds of things related to RLS and her life (she was sharp as a tack) and she told me she was alone; she had outlived her husband and children. She was suffering badly from RLS. She had lots of pain and said she walked the floors at night because her legs wouldn’t stay still. Then she asked the question, “What do YOU take for RLS and does it work?” So I went through the entire routine that I wasn’t a doctor, wasn’t qualified to tell her what to try, she needed to talk to her doctor about this and that I would send her a brochure all about RLS causes, diagnosis and treatments. But again, “What do YOU take?” So I told her but made sure I told her just because it worked for me, didn’t mean it would for her. I was taking two medications and the smart move would be for her doctor to start with one but to talk to him about it. So she gave me her address and I sent her the brochure to take to her doctor. A week later she called back and said she had taken the brochure to her doctor but that he thought the Mirapex I was on would be too strong for her, so he gave her a prescription for clonazepam. That scared me a little but I thought surely her doctor knew her better than I did. After all this time, I still thought that. So I called her back two days later to see how she was. That was during the time St. Louis was mostly without electricity and this lady had been without power for over 24 hours. What she told me next froze MY blood. She had taken the clonazepam like her doctor ordered, went to sleep and slept for 18 hours. She was still fuzzy speaking and not fully coherent. There was no one for me to call to check on her so I called back every couple of hours to make sure she was okay. Her power came back on and the medicine wore off ; she was fine. But she swore off the clonazepam and was going back to her doctor for something else.

What scared me so badly was that she could have frozen to death while that medication had her so deeply asleep. Yes, I did exactly what I was supposed to do when talking with her. And it wasn’t my fault she had a stupid doctor. Yet at the same time, it would have been my fault if she had died. No matter how often or strongly we tell people that we are not doctors, to check with their doctor before trying or changing medications, they are still in desperate need of relief. So they hear and do what they want. If it works for us, surely it will work for them. Combine that determination with a doctor that doesn’t have a CLUE what he/she is doing and who knows what might happen. It just stressed to me again how important it is to be careful when we talk about medications to others. It doesn’t matter if it’s someone new or an old friend. When this board first started, we were told not to tell what meds we were using unless specifically asked. I think we still do a pretty good job of that. But I also think we need to proceed with extreme caution. We all know we aren’t doctors and we state that clearly. But too many needy people look to this board for reliable, expert advice and we aren’t experts in anything except support and experience. I will tell others what I take if directly asked but with great trepidation. This is just something that’s been on my mind and heart and now seemed the time to share it.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Thank you Ruby for sharing that.
How scary for you, I would have been just like you.

I'm so glad you said something about people just go with want they want. It's a scary thought to think a doctor has no more sense then that......

Man we have so many doctors to educate. What really torks me off, is that there is an Algorithum, so many other disorders do not have one. I felt lucky we did. What could be the harm in ordering on for every office as a reference?
How hard could that be?

Thank you again for talking about this with me.

Hugs
Lynne

SquirmingSusan
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Post by SquirmingSusan »

Well, Lynne, you are kind of freaking me out because I really like hearing about what works for people. :shock: Which probably makes me one of the worst offenders, too. Besides, I was a biology/chemistry major and I'm fascinated by drugs. What gets on my nerves is the new people claiming to have found THE cure.

But the reasons why I like to hear what works for people is that the doctors seem so entirely clueless. It's like you said, there is the Mayo Clinic Algorithm - don't any of them read it?

And Ruby, I wouldn't feel guilty about sharing what works for you. (See above remarks about doctors being clueless!) My previous primary care doctors told me that my treatment with opiods is completely inappropriate for RLS and why am I not on clonazepam?! Three doctors!!! And the doctors should know to start an elderly person on a low dose.

But I'm seeing light at the end of the tunnel here. My new (old) doc kept talking about what he's been learning about RLS. And he listened to me.

Really, the doctors seem to have so much misinformation, we so need to advocate for ourselves. Bringing a copy of the Mayo thingy is a good start - if the doctor won't read it, then it's probably time for a new doctor. And Dr. B's book is good, too.

I brought both Dr. B's book and a copy of the Mayo thing (I get tired of typing the word algorithm, LOL) today with me to the doc, and then had a gut feeling that I wouldn't need it. And I didn't. :D

Anyway, people really do need to take responsibility for themselves and how they read the posts in this forum. Maybe there needs to be some kind of disclaimer when people join, like "Don't try this at home, kids." Because we are a desperate bunch of people who are way too willing to try just about anything to get relief. But the doctors can't always be trusted to give us the right advice or meds, or even to stick with us until we find what works.

Susan

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Susan,
I'm with you, I love the research and detective work about the whole process. I want to know the why about life. I keep thinking that we can figure this out.

My mother taught me to question things in detail, medical was her favorite. She taught us all to listen to what our bodies told us. Could we fix something naturally first? Trust me we've all tried to "fix, cure " me in my family. Thrillingly fun, NOT!

Ok, don't get me started on the CURE thing.....uuuffffaaaa I know! Makes me want to type so many things I'd just have to delete later. LOL

I'm not about editing what we say, maybe just how we tone it or at least add whys to some of the answers we give. Yes, peat and repeat.

Susan said "But the reasons why I like to hear what works for people is that the doctors seem so entirely clueless. It's like you said, there is the Mayo Clinic Algorithm - don't any of them read it?"
(no I read the quoting part still do it the old way LOL)

Me too, but I would love to see us get back to telling people why they need to read it as well, not just drop it in a doctors hands. Your right we each need to be educated. It is our best defense.


I'm serious that at one time even Dr. B. said that use the least.......the lowest class...blah blah blah. He also says we should each have a bag of tricks (meds) that help. He does listen to the community and what we say.

I'm not pointing to anyone, the board as a whole seems to just ooze Drugs, but not in the way it should, for me.

There are so many people that are not on the level most of us here are. And maybe a lifestyle change would do it. Maybe iron or supplements, dropping caffeine would help.......but no one says that stuff to often.

I should more myself.

We do have disclaimers, but this is another thing that made me write this post.....The foundation is allowing us this board, even sent some kudos our way this month in Night Walkers.....Go Team!
They are nice to let us put a disclaimer on our tags (mods and admin), however, it's a must that we do. That says tons to me. I always want this board open. We have so much valuable information here. To have that erased or gone, would be a crime.
Yes, it was and is a tough statement to write, but I really love the people here and I really want to be here in 5-10 yrs.........maybe in ten years we won't need this board...but until then I just wanted to share what I felt and what I've been hearing from others.

This is not a group that seeks to make others uncomfortable. And many were. Thats all.

I'm probably on the bad list, but I'm willing. For now, lol

Love Lynne

lyndarae
Posts: 620
Joined: Mon Jul 19, 2004 6:55 pm
Location: pocatello,Idaho

Post by lyndarae »

Howdy Family, I was at the end of my rope when I found this site a few years back. I needed to talk to someone and I was saved by wonderful people (you know who you are)....... EDUCATION EDUCATION EDUCATION that is the best medicine that I got here. And love and support from others who knew what I was going through. Many nights I would be nightwalking only to come here and find one of you here too and together we shared our medicine, support and comfort. That is what I love about this site. I know if and when I am at my wits end all I need to do is log in and ask for help and my medicine will be there. So ride on girlfriend BECAT******** CHANGE IS GOOD but love and support are still here. And for that I M GRATEFUL~~~~~~~~Lyndarae

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

I am Blesses to know you.

Thank you Lyndarae.

May your wings sore high and safe landings.

I love you.
Lynne

lyndarae
Posts: 620
Joined: Mon Jul 19, 2004 6:55 pm
Location: pocatello,Idaho

Post by lyndarae »

Hey girlfriend KEEP ON KEEPING ON **** Love what you had to say. Us oldtimers know too much about this rls curse....................no point in sharing what works for me cause it probably wont work for you strange but true. The newbies will figure it out just like we did.
Manager of the apartment complex and always working on something, am dating a guy I have know for about 3 years, he is awesome. And starting a painting job tomarrow. My meds are still working and I am still riding my motercycle. I am learning how to grin and bear it like a pro. Of course I have my animal medicine and my creator with me at all times and we both know what a blessing that is. And of course we have our moon to look at and know we are never alone. Love ya girl and it is me who is the lucky one for having you in my life some day we will meet face to face and then we will have a few minutes of painless time GOD willing love ya kid~~~~~~~~~~~Lyndarae

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

I'm not opposed to sharing what works for us just want to be sure we REALLY stress that this med (or meds) is what works for US and that they can take this information and all the other information they can get on RLS to their doctor to make an informed decision. I would just hate to see anyone say "here, try this or this or that at this dosage" when it might not be what they need. We are careful about not doing that but maybe need to be even more careful. Susan, if you or anyone else asks me what I take I will tell you but I will also tell you NOT to try anything without researching it first, check the side effects, check how if might react with other meds you are taking and then check with your doctor (this is presuming that your doctor is not a dork-head). This is the best board around about sharing and support and I do not want that to change. We care about each other and newbies. Let's keep it that way.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

I would like to say something else.... As for people asking questions over and over again---I don't mind repeating things over and over again. We have new people all the time who may not feel like (or even know how to) using the search capabilities to find an answer to a question they have. It may be the middle of the night (the time I found this forum), they are sleep deprived and, heaven help me, they should not have to seek the information themselves. There are plenty of us who are willing and able (as I've seen) to answer questions, even if OLD questions, to help someone who is at their wit's end.

Someone helped me---several helped me. And, the questions I had they may have answered a zillion times, but they answered me, took me into the fold, made me feel part of the family.

This Board obviously cannot go back to the way it was three years ago---people change, times change, etc. However, it CAN go back to what it was originally intended to be---a support board. A place where someone can come and just talk about what they are going through. When I came here, that's what I wanted--a place where I could talk to another sufferer about how this affected them, their relationships, their lives.

I agree with Lynne--the Board has begun to put way to much emphasis on drugs, in every aspect. I use medication--I've said so repeatedly. I don't think I could stand my situation if I didn't. However, I don't think we should tell someone what to use, how much to use, to take a drug holiday (I'm probably going to make people mad at that one--I'm sorry), etc. Even though people should take responsibility for their own actions (and I fully agree with that one), we are dealing with desperate people here. I think that's dangerous territory.

Again, I love this Board, and I love all of you.

Jan
No one is alone who had friends.

ctravel12
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this is ugly, my best intentions I swear

Post by ctravel12 »

Oh Lynne what a wonderful post. I certainly agree what you said and also the rest that posted. That is why when people ask about certain meds for example Requip I usually say it did not agree with me and leave it at that.

Like you said what works for one may not work for another. I always felt this board was for support only and will continue to feel that way. Like you said if they ask then I will tell otherwise will let them know about the Mayo Clinic Algorithm and print it out for the drs.

This post was so well said and thank you again for everyone that posted to Lynne's.

Oh Rubyslipper you are a wonderful and caring person. I am sure it scared the daylights out of you for this lady, but then you were there for her and helped her through this.

I love this board and will continue to post and offer as much support as I can,. That is why I am starting up a support group in my town as I feel people really need it. Medical advise I cannot give and will not but I can certainly offer a bundance of support.

If it was not for this board being there for me day and night, I would of never made it.

Thank you and love you all for it.
Charlene
Taking one day at a time

ViewsAskew
Moderator
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Location: Los Angeles

Post by ViewsAskew »

I am very ambivalent about this, so I've stayed out. The line between the individual's responsibility on both sides is very gray, as several of you have pointed out.

I would think, though, that if we are advocating to be careful what we type in other threads, we should be careful what we type in this thread as well. To some people, these posts (the collective of them) might make people feel that they are not providing a caring and supporting place because they are talking about drugs. Or that they were responsible for turning this wonderful place into a horrible one. That would make them feel oh-so-bad. And I can't think anyone deserves that.

The majority of people who come here do so because there are in RLS h-e- double hockeysticks, as my niece would say. They mostly talk about drugs at first because that is where their life is. Later, they talk about their relationships and other items. To say that we talk too much about drugs isn't fair to those who come here seeking information about drugs. Are we blaming them for asking?

Respectfully,
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.

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