Facebook WED sites

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pamndorr
Posts: 132
Joined: Wed Sep 10, 2008 7:57 pm

Facebook WED sites

Post by pamndorr »

I am just wondering if the foundation is in anyway connected to the various sites on Facebook. I have been looking around at a few of the sites and I see some pretty alarming information being given out to people. I love the foundation...I trust the people here. I just wonder if anybody else has been to any of the sites and thoughts on them.

I made the mistake on one site of giving my experience with WED and some of the drugs. Because I was on a forbidden drug to one site...I was deleted and blocked from that site.

On another site...if you don't belong to a special group that sees just the top doctors in the country they wont even listen to you. They won't give out names of doctors that people have had some luck with unless the top doctors in the country have heard of them. My thoughts on that are, not all of us can make it to John Hopkins, Emory or to Dr. B. We have to rely on local doctors to help. So when they don't pass on the name of a doctor that has helped somebody....me....then are they really there to help?

I just don't know what to think anymore about any of them. Granted Facebook is convenient and easy to use. And yep, you can get tons of information from there....I am just concerned about what information is being given out on certain sites.

I want to help others to deal with this disease. I figure that is why I was chosen to have this crap and go through all I have gone through and continue to go through daily. If I can make just one person not feel so alone then that is what I want to do...but in a safe manor.

Just looking for other peoples feedback.
Thanks all...have a great day.

ViewsAskew
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Re: Facebook WED sites

Post by ViewsAskew »

I think you've hit the nail on the head in several ways. Facebook is great in some ways....but there is no way to control content. Anyone can say anything. I suppose that's true here, but if anyone says anything that isn't proven or accurate, there is usually someone here to offer a different perspective. That's why I spend all my time here. It's too hard to deal with all of the inaccurate info on the other sites (not just Facebook, but many places).

As far as I know, the Foundation is only connected to the one site - their own. https://www.facebook.com/pages/Willis-E ... ef=tn_tnmn

And, I do know that some of us have opted out of participating there because of the very reasons you said. Anyone can say anything. As humans do, we all have a tendency to try to figure things out - our brains need to do this. The problem is that we don't have to be right in terms of what we believe - we just need to think we are :-).
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.

Rustsmith
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Re: Facebook WED sites

Post by Rustsmith »

I monitor the discussions on the Foundation's Facebook site but rarely participate. I am a member of another (probably the one you got kicked out of pamndorr) but only occasionally provide a response.

My read on them is that most of the participants in these sites are the 80+% of WED patients (and maybe some non WED types) who currently have less severe symptoms. Don't get me wrong, there are a few discussions where it is obvious that the person would be classified as serious. But claims of complete resolution of symptoms with magnesium-calcium supplements, turmeric, fancy "socks", etc could not be coming from someone with the issues that most on this board face every day.
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.

ViewsAskew
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Re: Facebook WED sites

Post by ViewsAskew »

That's a very important point, Steve. I sometimes wonder if we here scare away those with mild symptoms. We tend to be at the worst end of spectrum.

People with milder symptoms are much more likely to have remissions that occur - and they associate these with all kinds of things (that are unlikely to be the reason). People like to share their experiences - they are truly trying to help. But they also tend to think (because their experience is likely only about them) that their way is the best/only way. It's hard to be open that other things might contribute or that what they think works might not really work or might only work for them.
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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Re: Facebook WED sites

Post by Polar Bear »

A few years ago I visited a couple of other sites for a short time. The misinformation (what I believed to be misinformation) was alarming and scary. And I didn't have the confidence/backbone !! to try to argue a case i.e. when conversation may get to the receptors/neurotransmitters type of debate. I also found them at times to be more aggressive and ill mannered than I wished to tolerate.
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

ViewsAskew
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Re: Facebook WED sites

Post by ViewsAskew »

Polar Bear wrote: I also found them at times to be more aggressive and ill mannered than I wished to tolerate.


I would agree with that! Not all sites, clearly, but some are not happy places.
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.

pamndorr
Posts: 132
Joined: Wed Sep 10, 2008 7:57 pm

Re: Facebook WED sites

Post by pamndorr »

Thanks for all your input. I just wanted to make sure it wasn't only me that felt that way in those places. It's too bad they behave the way they do. Facebook is a very quick and convenient way to get information. Especially since you can get to the app on your phone. I just wish others that are visiting those sites would take into account that nobody on those sites are doctors. One site says they are in contact with doctors at John Hopkins all the time. But I have to wonder if those doctors are really that easy to contact all the time with questions regarding WED and treatment...just so it may be misconstrued and turned the way that whatever group wants to turn it.

Anyway, thanks again for the input. I think I will just steer clear of the sites on Facebook.

Does anybody else ever feel really alone with this disease? I feel like my support is slowly disappearing on me.

ViewsAskew
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Re: Facebook WED sites

Post by ViewsAskew »

I think we all feel alone - that is why were are here. Few people around us understand it. I am exceptionally lucky because my family all has it - including my in-laws! But the way it's affected my work and that my colleagues don't understand - and some are sympathetic, but it's still different.

I am going to guess that anyone with a chronic disorder/disease feels pretty alone.
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.

pamndorr
Posts: 132
Joined: Wed Sep 10, 2008 7:57 pm

Re: Facebook WED sites

Post by pamndorr »

My husband WAS my biggest support. He has always stood by me. Telling me he cant believe how strong I am and how well I have done over the years with all the medication changes and life changes because of this disease. That was until yesterday.

For some reason he came home and I have no idea why but we got into an argument....a huge one. He told he couldn't stand me anymore and I was nothing more then a drug addict. That since I stopped all the DAs and started just on the Oxycontin...I have changed. I don't know what he is talking about. Yep, I have changed. I have WED 24/7...even with Oxycontin on board. I had actually cut back on it. Dr. had me on 15mg Oxycontin twice a day and I was so sick and a zombie all day. I talked to the doctor about it and she put me on the 10mg twice a day with 5mg Oxycodone Immediate Release to take in-between when I have flare ups. I rarely take the 5mg....I had decided it was better to put up with as much discomfort as I could then to stay all drugged up.

I swear....I have not changed....at least not that much. And I am anything but a drug addict. I am so furious at him right now. I cant even look at him. That could be because last night was the night from hell with the WED and I cant sit or lay down at all today either. I am exhausted...and so sad. I don't see how I can stay here with somebody that would say that to me. We have been together for 36 years and now it looks like that is coming to an end. Unless I change back to whoever he thinks I should be. Problem is whoever I used to be is gone...she is dead. I am here now and unless this disease goes away somehow, this is the person that is staying here.

Sorry didn't mean to dump on you....I'm just so tired and alone. Nobody to talk to about it. My mom worries about me all the time anyway. I will not upset her by telling her any of this. Although he keeps threatening to call her and tell her he is having me committed...which would be rather difficult to do seeing how in MI a court has to commit somebody. Not a spouse or parent. Plus, I already talk to two separate psychologist as it is. One who prescribes the ADD drugs that I need and the other to talk about life changes. Unfortunately both of those guys are booked up today.

I don't like being alone.....

Rustsmith
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Re: Facebook WED sites

Post by Rustsmith »

Sorry to hear this, but I suspected as much from your earlier posts.

Just remember that you are not alone. Those of us here understand.

I really hope that it is not too late for the two of you. Remember that marriage is a matter of many compromises and that it may be your responsibility to take the first step back.

I am in a very unique situation relative to you in that I can see both sides. My wife of 41 yrs has had MS since before we were married and although I have had WED for most of that time, I was only diagnosed last year. Ours is one of the very few MS marriages that we know of that has lasted. Therefore, I have the perspective to see things from both of your positions.

All of us here can understand your side. You are trying to get back to a liveable life by getting the WED under control. It can be difficult getting the dosage of your medications right. Too little and the WED runs out of control, too much and you are too doped up to be functional. Add to that the fact that the "right" dosage is probably a moving target from day-to-day and year-to-year and it gets rough.

From his perspective, you may not believe that you have changed because you are seeing yourself from the inside without the filter of the drugs. From his perspective, the drugs have changed you into a different person from the woman he fell in love with because he sees the part of you that is able to get out through the drugs. He can probably still see signs of that person, but my guess is that you have had enough bad days so that now what his emotions see is the new person. A couple of years ago I was on what turned out to be a heavy dose of an anti-seizure drug for migraines. I thought that I was functioning just as I had before starting the medicine, but my wife saw a shadow of my former self who suddenly had almost no emotions. I could only understand after dramatically reducing the dose.

Therefore, having been in his position, you need to convince him that the woman he loves is still inside, but that you desperately need his help to get out. Get him involved with your treatment, even if that means taking him with you to your doctor appointments (and I don't mean that you leave him in the waiting room!). Have him tell the doctor what has been happening to you. Involve him in deciding how much medication you should take every day once he has talked with the doctor. This does not mean that you have him dispense your pills, but get him to the point where he knows exactly what you are taking and then discuss the matter as a team because he will see things about you that you cannot. In our case, I almost lost my wife to an accidental overdose one night. Thankfully, I knew exactly what she had taken that afternoon and was able to tell the ER doctors.

On the flip side of the situation, my wife is now enjoying the opportunities presented by my WED to finally be my care taker for a change. She occasionally pushes me to check things with my doctor and she is constantly reminding me to take my medication (usually after I have already taken it). She also enjoys the chance to go along on my doctor's appointments and not be the patient for a change. Finally, she has been reading a lot of my WED material just so she can knowledgeably "nag" :D me at the appropriate times.
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.

Polar Bear
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Re: Facebook WED sites

Post by Polar Bear »

pamndorr - We are here any time you have the need to vent and stamp and dump on someone.

I dearly hope that the argument of last night turns out to be a catalyst, and can bring some understanding (( ))
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

pamndorr
Posts: 132
Joined: Wed Sep 10, 2008 7:57 pm

Re: Facebook WED sites

Post by pamndorr »

Thanks for the support and listening to me....and of course the advise. Its been a very long difficult day after a horrible night. I don't know if I can go much longer without my Oxy on board. After the mess last night I had decided to stop taking the Oxy. I didn't take my midnight dose or my noon dose today and I haven't had any or the Immediate Release last night or today either. I am not feeling real great at the moment. Pretty sure part of it may be withdrawals from the Oxy...but most of it is the dang WED is about to do me in. I guess a smart girl would go take one now and try to calm things down before they go much further.

As for my husband....as I said, he has always been my support person. He has always gone to all my doctor appointments with me and he goes in and gives his side of how he sees me acting. Dr.Goldstein likes him to be there...he is included in my care as much as I am. He always knows when I take my medicine and how much I take. What happened last night was totally out of character for both of us. I just don't know what to do to get back to being somebody he likes. Right now he is pretty upset that I wont take the Oxy. He says it just goes to show how irrational I am being....and maybe he is right.

I wonder too if maybe I am still having problems without the DAs in me. For the last 9 years I have always somewhat controlled this disease with Mirapex or Requip or the generics of both. But since 2010 I have had to do 3 drug holidays. Each time because doctors kept increasing the DA drug. I understand now they did that because they didn't know any better. I just finished weaning off the last of the Ropinirole a few weeks ago. So for the past few weeks its only been the Oxy. I swore last time I Augmented that I would never do the DAs again...but now I am wondering if I would be better off on them. I know I will augment again....but at least for awhile life would be somewhat normal again. My problem with the DAs was when they would get the dose up to where it needed to be to control things all of the impulse control crap starts. This last time all I could think about was how to just end it all without hurting everybody around me. I was so thankful when the doctor took me off them....life looked better. I thought I would adjust to the Oxy and I actually thought I had been doing ok. I think that is why I am so confused. I guess I should go up and talk to him like you have advised. I don't want to hurt him....but I also don't want him looking at me like he cant stand me.

Steve...glad you were there for your wife when she took too much medicine. She is lucky to have you around and you are lucky to have her around.

I guess time will tell how much damage has been done to our marriage.

He also swears he didn't call me a drug addict. He said he called me a drug head. Whatever that means. I don't mean to make him sound like a horrible person...he isn't. He is just tired of doing it all and I guess I am just in my little drugged up world and haven't noticed he was getting tired.

ViewsAskew
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Re: Facebook WED sites

Post by ViewsAskew »

All chronic diseases take such a toll on relationships. I have wondered, many times, why my husband is still here. I'm not sure I would be in the same situation. It's soooooo hard for everyone involved.

I guess I don't have a hard time saying no to the augmentation - when I'm augmented, I cannot function at all. That is MUCH worse than any opioid (for me).

Have you tried any of the alpha 2 delta ligands - gabapentin, etc.?
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: Facebook WED sites

Post by Yankiwi »

ViewsAskew wrote:
As far as I know, the Foundation is only connected to the one site - their own. https://www.facebook.com/pages/Willis-E ... ef=tn_tnmn


Facebook has a recent post from a Prevention . com article "Weird health symptoms: This Is What It Feels Like To Have Restless Legs Syndrome". I think it is actually a good article, better than most, although it focuses on the electrical type of RLS.
I've looked at a few other RLS Facebook sites but comments were vulgar and obnoxious so I haven't looked at those again.
On Facebook the foundation posts notices of webinars, support group meetings and links to articles from the popular media, most of which are fairly useless. Some of the comments and suggestions are delusional and some are spam promoting products that wouldn't work but on the whole I think it's pretty good.

tea4one
Posts: 59
Joined: Thu Feb 24, 2011 6:43 pm

Re: Facebook WED sites

Post by tea4one »

There is a lot of drama involved with the FB groups. I was permanently blocked from a group for simply sharing information about doctors who specialize in RLS, a document that was posted in their own group documents folder! Total power trip.

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