Welcome back! I have been off for a while, but am going to be around a little more again. RLS land is busy everywhere! Sadly....................................
Lovely to have you back. I know it is very easy to spend too much time on the forum! I think my husband sometimes resents it so I have to be careful to keep a balance. Sorry to hear about your health issues - hope they are improving. Welcome back! Rosie x
Can identify with the hubby resents it as my hubby says he wishes he had never bought me an ipad because of the amount of time I spend on it! I reply ., well I would have bought my own anyway! Without it I would still be in the nightmare of augmentation.
I think the pros of the forum far outweigh the cons! In fact, it would be a very different life without it and would feel like I was suffering on my own in isolation.
This forum is very helpful to i would say everyone who posts and comments. There are many lost RLS souls who are looking for good info and experience from other members on here.
I always tell myself have a break from the forum, but i never seem to go more than a day or two before i am back looking.
Elisse, a good long break forces you to go out and know yourself. =)
It also makes you appreciate old friends. It gives you time to re-gather thoughts and
start again. I was getting to be dull and too involved when I fled out fast last time.
It drove me nuts. I felt irritated with every single symptom that I had and others did.
I won't do that again to myself or anyone else...but I sure did miss you..
So see ya around on here. =)
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I am interested in what you're saying there Yikes as my family say I get too involved.Can I ask what spurred you on to come back? Very glad you did though! X
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There are a few key people that are here day or night just to help people suffering - some just point people in the right direction but some like Nightdancer/ Elisse, probably you are a kingdom of information...they have been studying for years and years all that there is to know about RLS. They are humans, make mistakes but are nearly perfectly accurate or can steer you in the direction to find your information about RLS..
There are thousands of members who come and go on here. They get the correct information about RLS, take it to their doctors, get medications and once they are set, this forum doesn't hear from them for a month, or maybe not ever again. The cycle of helping new people keeps turning over and the same (bigger team than just 2 people) help and help and help...it never ever ends as you found out.. It gets tiring.. especially since the ones doing it also suffer RLS..sometimes more than anyone knows.. but the RLS key people have so much to share.. NIghtdancer and a few others make it their life to study on RLS, PMLD...years of study - is under their belts.. I didn't know what they did so I was the sympathetic ear or
the mommy to all who needed to cry, tell their stories to..or just to hear their frustrations..I took on too many of their medical issues and their problems..I was getting short tempered, wasn't as much fun to be around and wanted more for myself so I ran away from here fast ...I studied further other things and I did get sick myself.. a big ugly lung infection almost killed me.. then a knee infection..list goes on and on...
I suppose if you carry around the world's problems, it will show up somehow as stress in your own body and that will mean less immunity.
I am well now. I kept in touch with a couple good people from here all
along - one twisted my arm hard to come back.. and I do have some
big changes in my medicines ....bye bye Lyrica...it's been nice...
I expect RLS to return very quickly...It already is and it's been just one
24 hours since we pulled the plug on that one.. It's causing edema in
the ankles, feet, knee area...I put on 11 pounds in 4 days...I am here
before the RLS is so out of control that I am in a frenzy to make a
decision about treatment for RLS... so far Mirpex is out, Lyrica, Gaba
are on my Do Not prescribe record... I am not looking for suggestions
just yet... I am still studying my options and listening to what you
all are talking to each other about..
This is way too long, sorry... Missed the ones that I know.. thanks
for the warmest welcome home.. xx Karen
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nks for takimg the time to write such a long and thought provoking reply.I knew nothing when I came to this forum and little by little bits of info started sinking in so I started doing a bit of my own searching for answers.I spent many , many nights whilst pacing reading over old posts and although you had left by then I enjoyed reading yours.Yes you are right we owe so much to people like Nightdancer I learnt so much from her the amount of knowledge and as you say years of research she has done is astounding.Elisse is there solid as a rock year in year out.If I am stuck I will contact them and ask for advice.on the meds issue I take lyrica along with the Neupro patch and I do find I swell up more , all the dopamines cause me to have fluid retention so add lyrica into the mix too and I am pretty puffed up !
I still have lots to learn but I know how lonely RLS can be so if I can at least be there for someone I will try my best to help.I suppose its a case of getting the balance right but I owe this forum so much .I was in a bad place and my first post was "I cant take anymore" but the members on here got me through. No things aren't perfect now but they are better,
Glad youre back ..kim x
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Some of those medicines really do cause the body to swell.. it's not good to carry extra water weight. I have to be right on that scale every single day to not gain weight because my knee is dependent on me staying the same. I probably should stay right there. lol.. I ate some interesting foods this past month that no doubt contributed toward water weight gain. My lifestyle change forced me to change things- especially in drinking less water. Time to step it up again.
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I agree with getting too involved, it does happen. But, it can lead to making some very good friends.
I think i know my limitations, and i do hold back more than i used to. When i am struggling with my own RLS i now take the time off for me.
Yep, see you around on here when you pop in to see us.
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Good one Ellssi
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Elisse. I am done bringing up new ideas until I find some more. I truly did miss you so, so, so, so much. I ran out of here because of the drama between people and I will not ever over-step that territory again. I was in the center of it all and people were getting very upset with me for siding. I'm sticking to RLS only as that what the forum is all about. =) I am so glad that you are still here.!!!
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The forum is good now. No drama's going on. Unless you count Erona. haha. And he is fine. Yes, best to keep to helping, advising and supporting.
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Erona is gone on vacation, I think for at least a couple weeks. Maybe he/she will come back a little less grumpy? Hope so. lol I just gave him/her a hard time for calling us all a bunch of old crows. lol
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I warned him last night we want MR Nice guy to come back from his hols He took it in good fun x
Thanks funnyfennel.. last time I was on, you were doing some stretches to help with RLS and I hope that served you well. It was the one thing that kept me from starting RLS before I settled down.. then I was put on Benedryl for 10 days due to an adverse reaction to a long acting antibiotic...well, RLS has returned and now the benedryl is gone.. I still have it pretty much every night.. it's in one of my arms. It doesn't seem to let up at night.
Thank you very much sweets.. I was missing you folk too much. RLS crept back into my life. I didn't miss that at all. =/. Funny how this brings old friends back face to face online..haha. xxxxx.x
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