Lost

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Re: Lost

Postby Sojourner » Wed Aug 17, 2016 5:41 am

richviv wrote:I have RlS/WED and other problems. I take ropinirole for my legs . I have taken it for many years . It helps but I get confused about augmentation -are some or even all of my symptoms ( leg movement and leg pain) a result of my med. I know if I do not take it I have symptoms and if I take it I have less or no symptoms and if I start having symptoms and I take some (my RX is 8 1mg tablets daily) I usually feel better. I also know , in part after reading posts here, that seemingly maybe even all meds used for RLS/WED have problems/side effects, and that what helps one person may not help someone else and even that one person who has been helped by a certain med, the med may turn on them and make things worse or just stop helping. I wish my question could be, what med is guaranteed to stop all my symptoms for all time , but I already know the answer- does not exist, which, of course , is a very bad/sad answer. So that leaves me where? I certainly wish My RLS symptoms were better controlled, but to go looking for a different , better and or even best med, seems like a "Crap shoot" , I have seen 2 neurologist and all they did is cost me more money. I have tried 2 or 3 other meds over the years, but I am still taking ropinirole. So before I end up writing my vastly entertaining life story and or taking whining to the next level (which I have advanced experience in). will some body , despite what I wrote earlier, tell me the 'Perfect Solution ". I will be waiting ( Please excuse the sarcasm, but , just know , I get tired of coping, putting a "smile on". having a hard time sitting for very long, waking up in pain, so I become a tiny bit bitter)



Your post brings to mind the "Perfect Solution" or "Nirvana Fallacy." You can google either but I have included a link to at least one discussion--which I like because of some of the embedded quotes such as "Don't let perfect be the enemy of good." and "A good plan today is better than a perfect plan tomorrow." I'm not sure that it's in the link but I also like "Sometime good enough is really good enough."

http://tvtropes.org/pmwiki/pmwiki.php/M ... ionFallacy



"but I remain convinced that opening the door to change without knowing what is on the other side is too big a gamble"... Not sure I have read all your posts/background but I'm guessing that you have already already done that when you started ropinerole.


As Sleepdancer2 said, You are wise to be discerning and cautious. I feel that, in my somewhat lengthy lifetime, I have had very good medical care. I also, like you, know that I have also been "harmed" along the way. But, that takes me back to the Nirvana Fallacy in terms of "What do I do?"

It's late and I'm starting to enter the fog of not so clear thinking. So, I'll quit here and as I have not already done so say "welcome to the board."


Wishing all who visit here some peace this night.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

richviv
Posts: 22
Joined: Wed Apr 16, 2014 8:55 am

Re: Lost

Postby richviv » Wed Aug 17, 2016 9:20 am

I was not planning to write more, I got the boost I needed, attention is gold . People listening and then responding, well, life can be sweet , if not perfect. I only bring this up because I feel that in many health issues , RlS/WED , cancer . whatever, the problem is not Dr. incompetence, treatment alternatives/effectiveness, but money. I seldom read anything about how money effects choices that effects the possibility of improvement. I know I have a 60" TV that cost about $1300. I watch , maybe 2 hours, every day. If I go to Mayo clinic, to get my insurance to pay for it would be unlikely or still leave me owning , who knows, a lot of money. It would probably take several visits , no guarantees of anything, except a large bill . Easily , instead I could buy a 70'' TV ( except my redheaded oh so pretty wife would hide the remote ) which I know I would receive benefit. When you get medical treatment, asking what it will cost, which I always do, does on occasion get answered, but usually the answer is "It depends" My income and assets are fairly dependable, if I buy a car the price is within a small percentage of the cost listed, but not medical stuff, because of insurance, "it depends" `Now in my particular situation, if I took out a second mortgage, I could afford the trail and error of medical treatment and MAY be better off. , but not knowing how much it would cost, and if I would benefit , seems too expensive. I wonder if there are 80" TVs.( and my wife would not notice) Of course socialized medicine seems like a good idea to me, but .... I know many people who would punch me in the nose (not really) for even saying those words,

Yankiwi
Posts: 390
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Lost

Postby Yankiwi » Wed Aug 17, 2016 9:48 am

Socialized medicine can be a good idea (depending on the country, of course) for those with cancer or someone who has been in a car crash. In New Zealand they get first rate care. Those who have "quality of life" issues such as cataracts or joint replacement sometimes have to wait. And not all drugs are available at all. However, as an American ex-pat, and now a proud Kiwi citizen, I'm very happy with the medical care here but I also have medical insurance because if I need a heart procedure, or other procedures, I want it before it's too late.

badnights
Moderator
Posts: 5340
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Lost

Postby badnights » Sun Sep 11, 2016 5:42 am

I don't know if you're still hanging out here, richviv. I'm catching up after a few months absence, and some of your thoughts resonate with me. There are all sorts of special diets that people claim have helped their RLS/WED, but I never wanted to try one - I mean, cutting out all gluten or all oxalates (whatever they are) or all anything takes a massive effort and a great deal of time, for possibly zero return. I did eventually stop gluten and dairy, but it came about in a different way, and turned out not to be as hard as I thought.

I think in coming here you're preparing yourself for ditching the ropinirole. You need to mull it over for a while, gather information, and weigh the pros and cons - - which can be hard to measure - - before you commit to anything.

Are you close to one of the RLS Quality Care Centers? That at least would take some of the guesswork out of finding a doctor who can treat servere refractory augmented WED/RLS.

By the way, how's your ferritin? Have you had it checked lately? If I don't take 3 - three !! - pills of 65 mg Fe daily, my symptoms ramp up within 2 days and can no longer be controlled by my meds. You might want to take vitamin D as well.... I dont have my external drive with all my WED papers handy, but there were a couple of studies linking low D to RLS severity. I mean, these are simple, cheap things that have the potential to make a big difference.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Lost

Postby Joanie60 » Mon Sep 19, 2016 11:07 pm

Richviv, I absolutely concur with all your sentiments!! This disease is a HUGE pain in the butt (and legs and arms and trunk and face) and it is scary to move from something that works to something that may or may not. I usually find, as they say, pain is a great motivator. If you are not in screaming pain, then stick with the devil you know. If you get to the point of needing something else, this is a great place to pick brains.

The moderators are the BEST!! So patient. With all the problems in today's world, I feel silly complaining about "restless legs". But as everyone here knows, there is nothing silly about what we deal with. And all the moderators seem to join us where we are on our journey and give us a great big hug to get us to the next place on our journey...cheerleading us along the way. Many times I have dumped all my "stuff" here and been treated to kindness, understanding, and support. Not the reaction I would get at a family picnic, political rally, book club, or similar gathering.

You guys (moderators) ROCK! Thanks for all the time you give to us!!! :D :D :D

Rustsmith
Moderator
Posts: 4249
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Lost

Postby Rustsmith » Mon Sep 19, 2016 11:36 pm

Thank you Joanie! Flattery will get you everywhere! :lol: :thumbup:
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
Moderator
Posts: 15823
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Lost

Postby ViewsAskew » Tue Sep 20, 2016 3:59 am

Joanie60 wrote:Richviv, I absolutely concur with all your sentiments!! This disease is a HUGE pain in the butt (and legs and arms and trunk and face) and it is scary to move from something that works to something that may or may not. I usually find, as they say, pain is a great motivator. If you are not in screaming pain, then stick with the devil you know. If you get to the point of needing something else, this is a great place to pick brains.

The moderators are the BEST!! So patient. With all the problems in today's world, I feel silly complaining about "restless legs". But as everyone here knows, there is nothing silly about what we deal with. And all the moderators seem to join us where we are on our journey and give us a great big hug to get us to the next place on our journey...cheerleading us along the way. Many times I have dumped all my "stuff" here and been treated to kindness, understanding, and support. Not the reaction I would get at a family picnic, political rally, book club, or similar gathering.

You guys (moderators) ROCK! Thanks for all the time you give to us!!! :D :D :D


Image
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.

badnights
Moderator
Posts: 5340
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Lost

Postby badnights » Tue Sep 20, 2016 7:30 am

I think reading and responding to posts here is one of the most valuable things I have done with my life. It is definitely a two-way street; everything I give, I get things back in return. I am constantly in awe of what I see here: the raw courage, soldiering on in the face of incredible odds, the willingness to share and give. So many of us are lost and alone in our worlds even when surrounded by people, but in this place at least, we can lessen each others' pain and strengthen each others' hope.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
Moderator
Posts: 7651
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Lost

Postby Polar Bear » Tue Sep 20, 2016 8:41 am

I could never ever not be here on our Discussion Board. It was the saving of me the night I found it all those years ago.

It is NEVER silly to complain about RLS and any question could provide an answer also for other members, could encourage another member to ask their own question.

It is also NEVER silly to come on and just have a good old rant, getting stuff off your chest. I've done it many's a time.

Actually, I think we all rock - :clap:
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Joanie60
Posts: 194
Joined: Thu Mar 15, 2012 2:48 pm

Re: Lost

Postby Joanie60 » Tue Sep 20, 2016 12:53 pm

Ann, that is the best emocon (is that a word??) I have ever seen!!!

And it does describe what happens here :-)

ViewsAskew
Moderator
Posts: 15823
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Lost

Postby ViewsAskew » Wed Sep 21, 2016 6:04 am

I found it on another discussion board - for plants :-). I borrowed it from them 'cuz it really does visually show what happens. We're a pretty dang incredible group.

I think they are called emoticons.
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.

legsbestill
Posts: 539
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Lost

Postby legsbestill » Wed Sep 21, 2016 4:39 pm

Joanie60 can I echo your comments about the wonderful, amazing, always positive, always polite, always encouraging moderators on this site - I cannot believe there are better out there. They pick us all up and help us along - and you are quite right - it would just not be possible to dump the level of detail and despair onto any other group of individuals in my life (although my long-suffering family comes close). Three cheers for the moderators.

ViewsAskew
Moderator
Posts: 15823
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Lost

Postby ViewsAskew » Wed Sep 21, 2016 9:27 pm

Not that I, as a moderator, don't appreciate the praise - my feathers are preening, lol. I would say, however, that it's ALL of us that make this site what it is. I hope we set a positive tenor, but it's all the posts by the hundreds of members - regulars to passersby - that make this such a great place.
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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