What has thisDiscussionBoard meant to you?

For everything and anything else not covered in the other RLS sections.
ViewsAskew
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What has thisDiscussionBoard meant to you?

Post by ViewsAskew »

One of the board members of the WED Foundation is trying to put together some information about what the Foundation provides to people. She believes that the discussion board has been a life-line for people.

Would anyone care to share how it's helped you? She won't use names unless it is okay with the person. The stories can be posted here in this topic or sent as a PM to any of the moderators.
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.

Yankiwi
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Location: West Coast, South Island, New Zealand

Re: What has thisDiscussionBoard meant to you?

Post by Yankiwi »

After joining the foundation a few weeks ago, I just joined the Discussion Board about a week ago and it has offered a lot of moral support. I don't talk about my WED (or any other problem or illness) with friends unless I absolutely have to. For instance, there have been a few times at dinner parties where everyone stayed seated far too long for me and I had to get up. I would explain as simply as I could that I had RLS and I just couldn't stay seated any longer. I'll discuss it with my husband who is sympathetic and wishes he could do something for me so he sometimes tries massaging my legs but it doesn't work. I try to slip out of bed and not disturb his sleep, usually successfully. But I don't want to burden him too much so I don't talk about it unnecessarily.

I can speak freely on the discussion board and have received some good suggestions already and, of course, I can read all about various issues relating to WED. I really appreciate being part of the community (although I wish I didn't have the contributing factor).

Polar Bear
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Re: What has thisDiscussionBoard meant to you?

Post by Polar Bear »

I came to this Board many years ago, and right from the start it was a comfort with people who got it, who understood.
Much of the information in the stickies was worth printed out and used to help educate my GP to provide appropriate treatment. (Consultants might feel they are above needing educated but in my opinion..... enough said)
The information wass an education to nyself which meant when we with my doctor I can talk about our treatment from an informed stance.

When suffering I can rant and rave, knowing that I am understood.
When I am in a good spell I can share it with our discussion board friends.
When I have something happy that is nothing to do with WED/RLS I can share that also if I want to.

My family has sympathy but how can they understand when they aren't actually up and about and 'walking the walk' with us.
When I am in distress I try not to show it, in truth when I need help this is the only place that can help. Or at least can empathize.

Another point, it is a really friendly and courteous place to visit. I have seen other forums where members can be rude and people can have feelings hurt.
This Foundation Discussion Board provides a Welcome.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Re: What has thisDiscussionBoard meant to you?

Post by Rustsmith »

Almost exactly one year ago, I was finally diagnosed with WED after complaining for six years to my neurologist about non-leg related WED symptoms. Unfortunately, when I was diagnosed, I received virtually no information about RLS/WED from my doctor, just instructions to take this prescription (pramipexole) and come back in a month. That first pill was a real eye opening to all the problems that I had been experiencing for years, some of which I was not even aware of until they were gone.

Fortunately I found this board and was able to educate myself very quickly. The resources provided in the form of copies of published research, discussions of WED related issues and recommendations about which books to purchase was exactly what I needed.

Through this education, I was able to learn about the symptoms of DA augmentation. I was able to recognize the signs and point them out to my doctor soon after they started. Thereafter, when situations required me to change doctors, suggestions and support from the board helped me to move to one of the Foundation's Quality Care Centers rather than simply contacting various neurologists in the area. Once I was with the new doctor, I was able to not only understand exactly what he was telling me, but was able to carry on a much more enlightened discussion of what treatments might be in my future.

Simply put, the Board has provided an education that my doctors did not have the time to provide and it helped me better understand when it was time to move on from my first doctor.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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
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Re: What has thisDiscussionBoard meant to you?

Post by badnights »

About 7 years ago, I was looking for information on the medications my doctor had suggested I take. I was approaching desperate, because it had taken a year of tests and referrals to finally get a diagnosis of RLS (now WED), and I was having a hard time believing that the annoying leg thing I'd had forever (didn't everyone have it?) could be responsible for such a profound lack of energy that I had begun to fail at my job. It was around then that I found this discussion board. I joined, I lurked, I even made a post or two, but I was pretty silent for the first bit.

Meanwhile, my physician, who only knew enough to be dangerous, as the saying goes, was upping my dose of ropinirole as I was augmenting. But kudos for him, he listened to what I had learned (from this board and from the Foundation website), and he learned as he listened and did his own research, and together we went through augmentation, pramipexole, then codeine, and then increasing amounts of codeine and gabapentin. Unfortunately, he left town at that point, and there I was, stuck on a medication that I became increasingly convinced was causing profound depression, but unable to quit because, by then, I was in terror of untreated RLS/WED. (After augmenting, it never backed down to previous levels.)

I eventually saw a neurologist, who pulled me off the codeine and gabapentin abruptly, and left me with not much of anything. Certainly not enough to deal with my symptoms. Thus began three weeks of excruciating mental and physical torture, in a realm of horror and dread so far removed from my previous reality that I would have been incapable of imagining it before it had happened to me.

In the midst of that hell, my shyness disappeared and I poured my agony out in a post here that I titled "death is the answer?", which should give you some idea of the content. I just had no idea how to proceed, how to go on, and I could not even recollect why I had ever wanted to go on. Well, there was an outpouring of support from a dozen total strangers. I was buoyed up by those people - many of whom are still virtual friends - and I was supported as I staggered through the nightmare of untreated WED exacerbated by medication withdrawals. "Suicide is a permanent solution to a temporary problem." "...in the hands of an expert, over 95% of people with RLS get over 90% better,..usually just knowing that is enough for people to keep pushing until they get good treatment". I can still quote these words by heart, they had such an impact on me at the time.

This discussion board is my doorway to knowledge about WED/RLS. The community here is constantly sharing gems of information, and coming up with clever ideas. And in order to reply accurately to people in need, I have to do my own research, and continue to learn about the disease as a consequence.

More than that, this board is a caring and loving place. There is just so much goodness here, so much genuine caring, so many huge hearts and people helping other people. I love it here.

This board buoyed me up when I was sinking from the weight of the torture, it provided me knowledge, and it gave me a way to help others. To me, it's been a great place, and perhaps even saved my life.
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.

ViewsAskew
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Re: What has thisDiscussionBoard meant to you?

Post by ViewsAskew »

Thank you for sharing these very personal stories.
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.

Polar Bear
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Location: United Kingdom

Re: What has thisDiscussionBoard meant to you?

Post by Polar Bear »

Yes, thank you for posting so openly.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

debbluebird
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Re: What has thisDiscussionBoard meant to you?

Post by debbluebird »

This is where I have been able to receive more information regarding WED/PLM than anywhere else. Besides the information, the people here have been wonderful. I don't think I would be doing as well as I am without this board. Thank you to everyone.

ViewsAskew
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Re: What has thisDiscussionBoard meant to you?

Post by ViewsAskew »

debbluebird wrote:This is where I have been able to receive more information regarding WED/PLM than anywhere else. Besides the information, the people here have been wonderful. I don't think I would be doing as well as I am without this board. Thank you to everyone.


Some people leave the board because focusing on their symptoms all the time makes it worse. It's always made it better for me. Knowing that I can come here and vent, ask questions, learn, and feel understood - that is incredible.
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.

jul2873
Posts: 445
Joined: Thu Nov 15, 2012 7:32 pm

Re: What has thisDiscussionBoard meant to you?

Post by jul2873 »

This board is an incredible emotional support as well as the best--indeed, almost the only--source of good info on this disease.

For me, personally, it meant that when I finally saw a neurologist who diagnosed it and wrote a prescription for a DA for me, I felt I knew enough to be very wary of taking a DA. The multitude stories of augmentation, and the difficulty of finding a doctor who both knew how to treat it, and was willing to prescribe the necessary opioids was an eye-opener to me. These accounts gave me the courage to try a fairly untried remedy--kratom--which, luckily, works for me.

I have also been very moved by the courage I hear daily on this board--people describing how they deal with this affliction. And I am always moved by the care and attention they receive, esp. from the moderators. I don't know of any other internet discussion board where there is such an complete absence of malice, and commitment to civility and courtesy.

cornelia

Re: What has thisDiscussionBoard meant to you?

Post by cornelia »

I fully agree with JUL 2873: it's super.
Corrie

ViewsAskew
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Re: What has thisDiscussionBoard meant to you?

Post by ViewsAskew »

You both brought tears to my eyes. Thank you.
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.

Polar Bear
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Location: United Kingdom

Re: What has thisDiscussionBoard meant to you?

Post by Polar Bear »

Ditto - absolutely.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

EeFall
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Location: Washington State, USA

Re: What has thisDiscussionBoard meant to you?

Post by EeFall »

Many on here with severe RLS/WED know the term roller coaster ride. I endured the ride by myself for many years, even worse I endured it with WED years meaning that there were times when I slept not at all or very little for months at a time. When my spouse would go to bed, I would still be up and awake, much of the time pacing the floor endlessly. It is alone, extreme alone. It is also a misery not to be able to even sit down or to concentrate on much at all accept to wonder if the torment will ever end and if I were the only one going through this anguish.

I found this site and began reading everything I could. I would even stand up and read the Discussion Board when I couldn't sit down to do so. I have also used it on my smartphone while pacing back and forth reading and typing. I found hope here. There are others like me, unfortunately, who have similar problems here. I know there are many who come here who never post, I didn't post for a long time myself. There are moderators and others who have been here for years and they have a lot of knowledge about this disease. They are also good people. We are all just trying to live our lives as normal as possible, knowing that WED is a life changer, and it changes all the time for many of us - the roller coaster ride. It is bad enough to have WED but then the rest of life is just that much more difficult especially when new health problems arise.

I am very thankful for Willis-Ekbom Disease (RLS) Discussion Board which means I am thankful to the many who post here and share their lives with the rest of us. It makes it easier on me to know I'm not fighting this by myself and that there are so many good people with this bad disease. I'm also thankful that it also means that the word is getting out about those who have WED and that maybe there will be a cure for it someday.

Polar Bear
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Re: What has thisDiscussionBoard meant to you?

Post by Polar Bear »

Thank you Eefall .
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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