Why Support Groups Exist for diseases like RLS (with Disclaimer) and the upside of RLS!

In a support group for RLS, no matter what web site or who started it, people with RLS are all suffering. One of the best ways is to get help from fellow RLSer's wth lots of experience. Using reputable web sites that do not advertise fake cures is another way to get information.

I may come off strong at times. I am from the US, and we always speak up no matter what. So, when I am posting experiences I have heard from others or my own experiences with RLS, they are all backed up with science, 42 yrs of RLS, 15 yrs of leading support groups, and holding local seminars for RLS at the local hospital. I studied psychiatric nursing. Did not get my degree because I moved to Alaska back in the day. I could still get my degree, only need a few credits.

My life's mission is to raise RLS awareness, and I will never stop. I will never stop helping people; I have made life long friends because of RLS, so that is the upside. I have friends all over the world and have met quite a few of them.

To the disclaimer part........when I say this or that med is bad for a person wth RLS, it is from experience and reputable RLS sites, which I always list. I guess I will just sign the posts Donna the Disclaimer from now on. LOL This is in response to a few comments I have gotten from people who never post here or who have not been around long enough to even know the dynamics of the group yet. Please remember, EVERYONE, that all drugs or treatments do not help everyone the same way of at all. what may be my magic pill will not be your magic pill or treatment. We all have RLS, but we are all different, and it does not nelp at all that there are so many doctors and other medical personnel out there that do not know what RLS is all about. yes, they are human, but they also have to keep up. teachers have to up their credits all the time to be able to keep teachig. Nurses have to take credits to keep theor licenses, but doctors are not required in the US to do that unless they get "into trouble". So, why do nurses and teachers have to do it , but not doctors?? That is why it is really a great idea to have a great relationship with the nurses at your doctor's office. They can be your buffer, so to speak.

Nuff said, and stay strong!

cheers!

Donna/USA

14 Replies

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  • : ) Hi Donna. I am also from the USA.

    Thanks for good information.

  • Hi Donna :)

    if it wasn't for sites like this and folk like yourself i don't know where i would be i know i've not been a member for long but have sat and read everyones comment and views with interest and learning at the same time and thankfully a moan now and then to let off steam lol last 3 night with 4 hrs sleep in all not counting tonight as yet just gone 4am UK time,

    i read everything you put with interest and from you i've learnt more about RLS than anywhere else on line with most site stating it only happens at night hahaha not so......... ,

    just thought i'd voice my thoughts :)

    thanks for the info you give out on here

    sal : Lincolnshire UK

  • Thank you, Sal! hat does really make my day, let me tell you. Been a rough two days; nothing to do with RLS, just life, so I appreciate your comment very much!

  • I call you Donna my savior...lol. you have always been there for me when i have needed you for advise and support and it has always been good advise and support. I have learnt much from you about RLS over the years i have know you, even though that has been a virtual friendship. Keep doing what you do Donna, you have a passion to help people and put all your time into people who suffer just like you do with RLS. This group has benefited from having you as member.

    Irene, UK... :)

  • hear,hear...

    :)

  • Donna, you know how I feel about you and your RLS support. I dont doubt your credibility or your integrity. I know from personal posts you dont 'leap in' you will stop , go away, research and return with an educated opinion and or current thinking on the subject.

    You are (like it or not) Queen Donna in the Kingdom of RLS Support!!!!

    Kindest

    Bob M

  • you guys are really great to me,. too! do not know what I would do without my cyber RLS friends, and I have made LOTS of friends. may drop in over in England one of these days, and meet a lot of friends I have across the pond! :o)

  • Top banana! :)

  • well you havent left anything for me to add, Donna helped me so much when i was at my lowest, and still there for me whenever i need her, and i mean whenever, cheers Donna x

    jean

  • Thanks you guys! You have helped me as much as I have helped you, too. :o) I appreciate all the good comments. I was feeling kind of low last night, but I feel much better this morning.

    have a great day all! Most of you have a good head start on me, since you are 6 hrs ahead.

    here's to an RLS free day, at the VERY least!

  • Hey Donna

    Love this site and you are both an inspiration and a font of all RLS knowledge!

    I find info from this site really useful and even if not commenting read regularly

    Always look forward to your balanced educated advice and opinion

    Thanks

    Simon, Yorkshire, UK

  • i agree with every single thing that has been said here. Even though I am on much better medication now, as everyone with RLS knows no med is 100% effective 100% of the time, and I still have some not so great days/nights. Last night for example the RLS started at 10pm and didn't stop until 2 am, no idea why because that's not normal for me now. So grouops like this and people like Donna and everyone else here are my lifeline . I would have cracked up without the support I get from this group, whether I have posted a blog asking for advice or if it's just reading the advice given to someone else. I thank you all,you are my saviours.

  • Thanks Helen and Simon. It seems some nights nothing works. That is the "norm" for RLS. When it decides to rear it's ugly head, it just does. Took me a long time to learn not to panic when a bad night or day happens, because the bad nights will happen, no matter what mes we are on, and how long we have been researching, etc, it is something that just is.

    So, here's hoping this night is good for all of us! :o)

  • Thanks Nightdancer - this is so true and its so easy to panic, but we have to stay calm as you say and know that research is happening and will continue! I am on Ropinirole and Tramadol and mostly it works to a good degree - as you also said, nothing is perfect.

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