I’m in a rather blunt, Aussie-kinda mood, so I’m just going to say it all straight out …
Trust me Ann I have been everywhere with this and researched everything from all the underlying conditions to the california site to the yahoo sites to here, everything plus been tested for it.
I am sick of this and so sick of the test yet nothing has helped. Anyhoo I guess I will move on and deal with it. There are no answers anymore. I have come to my last hope of anyone having a simular situation. I've looked everywhere.
Jan Rowley … exactly why did you come to us when you’ve been everywhere else and not found what you wanted?
We are, apparently your last resort … which we really don’t mind … as we really do care about people who want to find a resolution to their problem instead of continuing along a downward spiral into RLS oblivion. However, at no time in any of the posts you received in reply did anyone intend to offend you, mock you or even worse, DISBELIEVE YOU!!!!
Everyone who has responded to you … has gone out of their way to give you advice … share their own life experiences … offer solutions & directions to head in & questions to re-ask your doc/s … heck even do some research for you … only to have it questioned again and again and again. So, I decided to take back everything I’ve said on your thread … literally.
I was under impression that everyone has rls all the time and not periodicaly and unless medicated and when not medicated the rls is back. From what I have read once gotten you never get rid of (unless its secondary rls caused by meds or illness ect..) you only treat symptoms of. My neuro said the same and that is why it is so difficult to find the right med or combination of meds to work as the symptoms are different with everyone.
#1 Thought to Ponder – There is no cure! Only relief and management (long term for some, not so long for others). Yes, we have members on this board who claim they’ve been “cured”, but they’re the lucky ones who’ve managed to find a remedy/cocktail that alleviates/relieves their symptoms to the point that they actually feel like they’re cured.
#2 Thought to Ponder – RLS although “diagnosed” by neuros/gp’s/sleep doctors around the world using the same four questions, is an extremely INDIVIDUAL syndrome. I’m yet to see any two RLS’ers who have EXACTLY the same symptoms, let alone the same remedies/cocktails. You will also find that in nearly all cases, patients also have a myriad of other medical problems to deal with as well … just as you do (and what do you know … so do I!). So for us all to be on the same drug at the same dose is simply impossible. We are our own guinea pigs so to speak until we hit that magic potion. We’ve all had our various tests done by various neurologists/sleep doctors and been told what we think we want to hear, but it sometimes turns out to be the total opposite. Hell I can’t even figure out if my neuro still exists at the moment … he’s not responding to either my phone calls/emails or ones from my GP … so I’m in a real pickle!
#3 Thought to Ponder – The Algorithm for RLS Management outlines three separate types of RLS … which points to different levels of symptoms, different types of symptoms and even different TIMES of symptoms. It also gives extremely useful information on which drugs to start with for each level of RLS. If one type/family of drug doesn’t work, it may work in combination with another, or you may need to switch to something entirely different. As I said above … we are our own guinea pigs in this quest for relief.
#4 Thought to Ponder – This group is a Family who have come together to find a way to make the medical community more aware of what RLS is and how it affects us each and every day. We don’t hang around here posting just for the heck of it … we want answers too, just like you. We have worked hard in this group to research this syndrome in numerous ways – keeping individual online “diaries” amongst the threads; writing quality of life statements; sharing our symptoms; comparing our drugs and our individual reactions to them (e.g. for some Neurontin is “THE Cure” yet, for me one Neruontin tablet has me bouncing off the walls with hallucinations for hours … I, a 24/7 primary familial refractory rls’er, can tolerate tricyclic anti-d’s, yet nearly everyone else can’t, go figure). We share quirky non-drug ideas that work when everything is going completely ass-about for us (I still think the "Black & Decker" Method would have to be the most creative!). This group is here to fight for RLS to be recognised and researched.
#5 Thought to Ponder – You can thank a chat buddy of mine for prompting this final thought (and since I’m also in a rather tipsy and depressed mood) …
I am sick of this and so sick of the test yet nothing has helped. Anyhoo I guess I will move on and deal with it. There are no answers anymore. I have come to my last hope of anyone having a simular situation. I've looked everywhere.
Have you really come to the conclusion that there is no hope for you anymore? Have you come to an absolute realisation that there is really no hope for you? Have you hit such a dark place that you don’t know where the light is anymore?
There are more chronic/severe/24-7 fellow rls’ers here than you think. We have ALL been where you are now. We ALL know what you are going through. We ALL care about what you are feeling. Don’t discount the mild and moderate sufferers though … they too live to find their own solutions and count their blessings that they’re not in our shoes. We are ALL sick and tired of being "sick and tired". To be 100% healthy is but a dream for us ... so we have to work with what we've got and use the resources we find.
Open yourself up to a little bit of help … even if it is from complete strangers who live at opposite ends of the world. We all have this disgusting, frustrating, debilitating syndrome and we’ve all had to find a way to deal with it. We’ve come together in this forum for support. Some every day … others when they’re just going through a bad patch. There are people here who DO have things in common with you, so take on board what they have to offer and work with it.
WE DO CARE!!! Let us help you!!!
You asked about what kind of drugs/cocktails/regimes other 24/7’s have tried … to list the crap I’ve been on would take too long … so I’ll just point you in the direction of my “online saga” at
http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=37 which you can wander through at your own leisure.
My motto … which keeps me going each day … is “Take it one step at a time … one day at a time … and most importantly STAY POSITIVE!!!”.
Now that’s out of my system, I’m going to bed.