Am I new?

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Prim's Walks
Posts: 9
Joined: Fri May 06, 2016 10:18 pm

Am I new?

Postby Prim's Walks » Thu Aug 25, 2016 1:12 am

I was part of this forum when it was tiny and we had about 900 members. LONG before this updated look! Very nice! If any members were here for 8+ years probably knows me.
I can't remember my name though. I believe it was Jesusfish.
I have since been diagnosed with Progressive MS and in very poor health. Not that my RLS has gone anywhere... It rears its ugly head day and night.
I'd imagine, as mine was, our greatest fear would be the inability to walk. MS did that. I woke one morning paralyzed from the waist down in Nov 2013. Still paralyzed. So, my arms work 24/7 moving my legs for my legs. Thank the good Lord that my GP helps a great deal in keeping the RLS at bay. It's getting much harder as the govn takes needed meds away. If I dare ask for a prescription to be adjusted, I'll be red flagged, and soon be told two of my meds will no longer be covered :(
The RLS is beginning to win, as I've grown tolerant to the meds I take now.
The two that they'll take will be morphine and Klonopin. These have quite literally saved me from suicide about 17 years ago when my neuro prescribed them.
Is there any new bright and shining meds on the market? I've done all the older ones. Tried them. Some I've used for a long time, some I was afraid of because of augmentation, and some made me physically ill.
I do know I've had this insidious disease since I was born. It just didn't have a real name until I was 15.
Thanks for any help.
Please, don't tell me about opiates... I've heard all of the arguments. I've tried everything else. Modern medicine progressed it. An anesthesiologist used a drug on this websites "do not use" list when I went in for surgery. I don't know why he decided to change my life. I once took an ibuprophen and a heating pad, and could overcome. He progressed it to 24/7 and to my arms and torso. He kept me from sleeping for 9 straight months. I told them "NOT to use these..."
This was my only way to save my sanity.
It worked for many years. Now, my arms are exhausted!! And my hope to keep this opiate is limited by time.
Any real help would be amazing!
Hugs** And may you sleep sweetly tonight!

Rustsmith
Moderator
Posts: 2659
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Am I new?

Postby Rustsmith » Thu Aug 25, 2016 12:02 pm

Welcome back Prim's Walks

There is an old username Jesusfish that was last used in 2005.

Sorry to hear about your progressive MS. It is a horrible disease. My wife has MS. It started as the relapsing-remitting form when she was 16, now she has the secondary progressive form, which does not have any approved form of treatment.

As for your meds, your are not going to hear anything negative about the use of opiates from any of us because most of us are at the point where opiates are the only RLS treatment that is still effective. I admit to being personally terrified of the thought that some politicians could take my methadone away. Taking opiates away would leave me with no way to treat my RLS, which could only lead to a very bad end for me.
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.

jul2873
Posts: 346
Joined: Thu Nov 15, 2012 7:32 pm

Re: Am I new?

Postby jul2873 » Thu Aug 25, 2016 1:47 pm

Hi Prim's Walk,

I am so sorry to hear of the M.S. My sister also has M.S. as well as some RLS. I use kratom to manage the symptoms of my RLS, and she has found it helpful as well. Essentially, it functions as a mild opioid. I don't know if it would help you, but it might be worth a try, as it is non-prescription. If you search for "kratom" on these boards you'll see a lot of information about it. Or search on Reddit. There are whole subgroups devoted to it on Reddit. Good luck to you.

ViewsAskew
Moderator
Posts: 14889
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Am I new?

Postby ViewsAskew » Fri Aug 26, 2016 6:46 am

I think I am member 150 - it's quite rare these days that anyone from 2004/2005 stops by. Nephriticus stopped by earlier this year - he is RLS free and had been for years. Betty/WV still comes around, though not as frequently anymore. Rubyslippers used to stop by once in awhile, but haven't seen her in a year or so, I don't think. Some people pop in but don't post.

The key, I think, it the luck of being a a decent state or country (some states in the US are more strict than others). I know it's not even legal to prescribe methadone for anything except drug addiction in Michigan (or at least was). The other piece of luck is that of finding a doc who isn't afraid of these drugs.

My guess is that few of us who take opioids wanted to take them initially - I know I did not. Well, I was desperate at some point and would have done just about anything - but prior to the desperation part, I didn't want to take any drugs at all. I tried to manage it from the time I was a child until I was in my thirties without any drugs. But once I was exhausted and couldn't sleep or work anymore, I knew I had to do something.

Some days I play a fantasy that if I'd never have taken any drugs I'd not be in the pickle I am now - having had augmentation, tolerance, dependence, failing so many drugs, etc. But, first, I'll never be able to test that theory. And, second (and most important, my guess is that I'd be in worse shape - likely dead! At best, I'd be in a similar place.

As Steve said, many of us here are in a very similar boat to yours. We get it, though most of us wish we didn't and that no one needed us to.
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.

Prim's Walks
Posts: 9
Joined: Fri May 06, 2016 10:18 pm

Re: Am I new?

Postby Prim's Walks » Fri Aug 26, 2016 12:02 pm

Thank you everyone!
Dear ViewsAskew, if you're member 150, can you tell me what number I was? Yup, that was me. I did the math to recall my surgery and came up with 2004. I do remember Rubyslippers and the other name you mentioned. I do not see a way to see your post while typing mine, sadly, my immediate short term memory is missing because of MS. Please let me know how I can see the posts while typing.
Also, I got a notification in my email that there was a response to my first post, thank you. However, when I click on the link - I must then sign in and then track it down again. That took a while.
One more question...is there a category where most just hang out and visit? Get to know one another?
Thanks for being here.
I can't see all of your posts. I hope all of you sleep well tonight! And I thank you for your support. I will check out the OTC med and check with my Dr about it. (I take a long list of meds for MS symptoms - nothing for MS)
As for opiates... In this sites old days, there was a split. Some were so against opiates that they'd get on soapboxes, and I was trying to avoid those friends. Seems times have changed. Now, changing again.
To all of you who think Drs are afraid of opiates...they're not. They're afraid of losing their licenses, their life's work, their entire identity. It's actually quite sad what our Drs are going through right now :( I feel for us especially, but I feel for them as well. They want to Doctor their patients, but bureaucrats just won't allow them to anymore.
Hugs** and sweet dreams.

Prim's Walks
Posts: 9
Joined: Fri May 06, 2016 10:18 pm

Re: Am I new?

Postby Prim's Walks » Fri Aug 26, 2016 12:20 pm

Thank you everyone!
Dear ViewsAskew, if you're member 150, can you tell me what number I was? Yup, that was me. I did the math to recall my surgery and came up with 2004. I do remember Rubyslippers and the other name you mentioned. I do not see a way to see your post while typing mine, sadly, my immediate short term memory is missing because of MS. Please let me know how I can see the posts while typing.
Also, I got a notification in my email that there was a response to my first post, thank you. However, when I click on the link - I must then sign in and then track it down again. That took a while.
One more question...is there a category where most just hang out and visit? Get to know one another?
Thanks for being here.
I can't see all of your posts. I hope all of you sleep well tonight! And I thank you for your support. I will check out the OTC med and check with my Dr about it. (I take a long list of meds for MS symptoms - nothing for MS)
As for opiates... In this sites old days, there was a split. Some were so against opiates that they'd get on soapboxes, and I was trying to avoid those friends. Seems times have changed. Now, changing again.
To all of you who think Drs are afraid of opiates...they're not. They're afraid of losing their licenses, their life's work, their entire identity. It's actually quite sad what our Drs are going through right now :( I feel for us especially, but I feel for them as well. They want to Doctor their patients, but bureaucrats just won't allow them to anymore.
Hugs** and sweet dreams.

Rustsmith
Moderator
Posts: 2659
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Am I new?

Postby Rustsmith » Fri Aug 26, 2016 1:32 pm

Is there a category where most just hang out and visit?


Most discussion generated by new comers is in the "Just Joined" forum. Others tend to use the "General Topics: RLS/WED". But the best way to see what is going on is to click on "Quick Links" in the upper left corner and then select "New Posts". That shows you a list of everything that has been posted since the last time that you logged in.

I do not see a way to see your post while typing mine


If you scroll down in your browser, you should see another window pane that contains the previous notes posted to the one that you are responding to. You may need to scroll up or down to see everything, but that is where it is hiding. :D
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: 14889
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Am I new?

Postby ViewsAskew » Sat Aug 27, 2016 7:09 am

Prim's Walks wrote:Thank you everyone!
Dear ViewsAskew, if you're member 150, can you tell me what number I was? Yup, that was me. I did the math to recall my surgery and came up with 2004. I do remember Rubyslippers and the other name you mentioned. I do not see a way to see your post while typing mine, sadly, my immediate short term memory is missing because of MS. Please let me know how I can see the posts while typing.
Also, I got a notification in my email that there was a response to my first post, thank you. However, when I click on the link - I must then sign in and then track it down again. That took a while.
One more question...is there a category where most just hang out and visit? Get to know one another?
Thanks for being here.
I can't see all of your posts. I hope all of you sleep well tonight! And I thank you for your support. I will check out the OTC med and check with my Dr about it. (I take a long list of meds for MS symptoms - nothing for MS)
As for opiates... In this sites old days, there was a split. Some were so against opiates that they'd get on soapboxes, and I was trying to avoid those friends. Seems times have changed. Now, changing again.
To all of you who think Drs are afraid of opiates...they're not. They're afraid of losing their licenses, their life's work, their entire identity. It's actually quite sad what our Drs are going through right now :( I feel for us especially, but I feel for them as well. They want to Doctor their patients, but bureaucrats just won't allow them to anymore.
Hugs** and sweet dreams.


You are 965, if I counted correctly, and joined in 2005.

As Steve noted, you need to scroll up and down to see another post. There is one other way - I did it for your post. If you look at the post you want to respond to, there are some icons ( on the top right of the post. One of these is a quotation mark. Click on the quotation mark BEFORE you type anything. This will quote the text that you want to reply to and open a reply window that includes the text from the original post. You scroll down to the end of the typed text - it will end with the word quote in brackets - and add your text after it. That is the easiest way to see one person's post. If you want to see several, however, you have to scroll.

Some people still get on soapboxes - but we try to be very respectful and foster respect. If someone doesn't want to take opioids, they shouldn't do it. If others do and that treatment helps, then that is a perfectly good treatment. We also try to focus on research and what is proven to work. Research shows that opioids work for many of us - and may be our last resort.

I think some of us here have had doctors who are afraid of opioids - not just protecting their license. I just saw one of those doctors a few weeks ago. I've also had those who were protecting themselves. Either way, the result is the same to us - and we need to find a new doctor, yet not appear to be doctor shopping.
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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