Hi!
I'm new here. I've been in chat last night for a while and met some of you but this is my first posting in this board.
I have arthritis in all my body and RLS makes it really worse. I've just started "really" suffering from RLS this week (before it was just some mild thing that happened once in a blue moon and didn't stop me from sleeping. My mother had it too). But since last Friday my life has become a torture. I'm on 800 Ibuprofen in the morning and 800 at night (I was diagnosed 20 years ago, I'm 56 now) and lately it's not being enough, now I have to add the RLS pain....I haven't taken a Valium in 18 years (I had a threaten of abortion of my last son, so I had to stay in hospital and under Valium to stop contractions for two months), but I had to take one on Monday night and another yesterday night because sleeping was impossible. I meditate everyday, almost all the time when I'm not doing anything, but now I can't even do that 'cause as soon as I relax the RLS shows up.
Last week I read the results of recent studies about Mirapex stating that increases the sexual desire and the gambling one to unhealthy levels... I couldn't imagine I was going to start suffering from the RLS two days later...
I've read some of the posting and I feel hopeless.
I see all of you have a real positive attitude (I'm that kind of person too), but in this case I conclude that there's nothing to do about this syndrome and that's discouraging. I admire those of you who, like me, have the problem all day long and are upbeat and cheering to others. I feel very powerless and desperate.
Sorry for such a long posting, but I needed to share all this.
It's time for me to go to bed (it scares me just to think of it...)
Thanks for "listening" and being there.
Have a pleasent night and sweet dreams.
Ana
A NEWBIE SAYING HI AND COMMENTING ABOUT ARTHRITIS AND RLS
A NEWBIE SAYING HI AND COMMENTING ABOUT ARTHRITIS AND RLS
Last edited by ANA on Sun Apr 13, 2008 4:21 pm, edited 1 time in total.
IF YOU CAN GO WITHIN YOU WILL NEVER GO WITHOUT. MAURICE GIBB
HELLO Ana, And welcome to the family, sorry you have rls and found us that way, but you have found a place to call home and vent whenever you want in a safe and understanding place. Read as much as you can and then try and find a doc in your area that knows about rls.
That is the best advice I can give you tonight. I feel so frightened of this syndrome and the "whats going to happen to me" at times that I loose hope. BUt I come here and find it time and time again. This family and group of rlsers are the best you will find. Please if your up and ever need to chat pm me or email me anytime ANYTIME!!! I am a nightwalker and am up and down all night and day. You have found a safe place to guide you through this and I hope you will stick around and get to know us all. GOD BLESS and I hope your getting some rest.~~~~~~~~Lyndarae
That is the best advice I can give you tonight. I feel so frightened of this syndrome and the "whats going to happen to me" at times that I loose hope. BUt I come here and find it time and time again. This family and group of rlsers are the best you will find. Please if your up and ever need to chat pm me or email me anytime ANYTIME!!! I am a nightwalker and am up and down all night and day. You have found a safe place to guide you through this and I hope you will stick around and get to know us all. GOD BLESS and I hope your getting some rest.~~~~~~~~Lyndarae
You cant be brave if you have only had wonderful things happen to you
Hi Ana and welcome to this group. I am glad that you found us but sorry that you have rls.
With being new to this board on this forum New to RLS there is a sticky post called "Managing RLS" there is an excellent article from the Mayo Clinic Algorithm. Please read it and print it out for your dr. Has some good info there. There is also another good site called www.rlshelp.org
It is also good to read alot of the older and new posts. There is alot of good info out there.
I am glad that you joined the "Voice Chat" last night and am sure that you received some good advise. We also have another chat night on Mondays and we start at 6pm az time and it would be either 8 or 9 pm your time depending on where you live in the states.
We are here for you so please keep us posted on how you are doing. We really do care.
With being new to this board on this forum New to RLS there is a sticky post called "Managing RLS" there is an excellent article from the Mayo Clinic Algorithm. Please read it and print it out for your dr. Has some good info there. There is also another good site called www.rlshelp.org
It is also good to read alot of the older and new posts. There is alot of good info out there.
I am glad that you joined the "Voice Chat" last night and am sure that you received some good advise. We also have another chat night on Mondays and we start at 6pm az time and it would be either 8 or 9 pm your time depending on where you live in the states.
We are here for you so please keep us posted on how you are doing. We really do care.
Charlene
Taking one day at a time
Taking one day at a time
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SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
Re: A NEWBIE SAYING HI AND COMMENTING ABOUT ARTHRITIS AND RL
ANA wrote:
I've read some of the posting and I feel hopeless.
I see all of you have a real positive attitude (I'm that kind of person too), but in this case I conclude that there's nothing to do about this syndrome and that's discouraging.
Ana
Hi Ana, and welcome to the forum. I know that this condition can seem hopeless, but there is actually a lot that can be done about it. There are many, many treatment options and most people find one that helps them live their lives again.
It all starts with getting educated about this disorder. If you look in the "New to RLS" section of the message board, there are sticky posts at the top. There is a wealth of information in there, and links to much more information, including the Mayo Clinic Algorithm for the Treatment of RLS. That's the document you may want to bring to your doctor, because they may actually read it.
It can take time to find a doctor who is willing to get educated about this disorder, and then once you do, it can take more time to work through the various treatment options until you find one that works and has side effects that are tolerable for you. But it can be done.
I've never been one to meditate, although people have tried to force it upon me at various times, it's just too hard to sit still. And like you said, the more relaxed we get, the more likely the RLS beastie will attack. Personally, I like the RLS excuse for not doing sitting meditation, even though when I take my meds and the RLS is under control, it's not quite true that I can't sit still. Hopefully you'll reach the point where you can sit and relax again. Otherwise, there are a lot of good forms of moving meditation out there.
Have patience, and have hope! You'll get there.
Susan
Welcome Ana. It was good talking to you on Voice chat a few days ago!
Please let us know how it goes with your physician for it seems like a good time to see one with your RLS acting up in such a bad way. Valium can help but, like you'll read from the links given to you by other posters above, there are other "first line" treatments to consider with your doctor.
Yes, Mirapex has some bad news articles out there for some possible side effects, but the addictive side effects you speak of do not happen to most who try it. It works (at least for awhile) in a majority of those with RLS who try it with side effects that are tolerable.
Please let me know how it goes and hope to see you next Thursday in Voice chat. Take care,
Please let us know how it goes with your physician for it seems like a good time to see one with your RLS acting up in such a bad way. Valium can help but, like you'll read from the links given to you by other posters above, there are other "first line" treatments to consider with your doctor.
Yes, Mirapex has some bad news articles out there for some possible side effects, but the addictive side effects you speak of do not happen to most who try it. It works (at least for awhile) in a majority of those with RLS who try it with side effects that are tolerable.
Please let me know how it goes and hope to see you next Thursday in Voice chat. Take care,
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
Hi Ana,
I noticed you said your RLS has just kicked in big time in the last week or so. Have you started any new med for another medical problem?? Are you taking any cold/allergery meds? There are many things that can cause the RLS to become stronger, and then at times it just becomes stronger all by itself..
As others have stated, read and educate yourself as much as possible, the more you know the better treatment you will be able to find for yourself, plus MOST Drs know very little about RLS, so please educate yourself and print off things like the info from Mayo Clinic and take with you when you see your Dr.
There are many different class meds used in treating rls, sometimes its trial and error before you find one that works for you.
Yes RLS is horrid to have to deal with, but remember if you Stress about RLS it can make it worse. I just count my blessing its not cancer or something worse.
One thing I learned many yrs ago, dont fight the RLS attacks, just get up and get busy doing something that requires you to be on your feet. Because that is one way to make it stop.
I also have learned sitting in a rocker/recliner helps as I can keep feet/legs moving yet at least able to sit down.
Good luck and keep us posted to how you are doing..
I noticed you said your RLS has just kicked in big time in the last week or so. Have you started any new med for another medical problem?? Are you taking any cold/allergery meds? There are many things that can cause the RLS to become stronger, and then at times it just becomes stronger all by itself..
As others have stated, read and educate yourself as much as possible, the more you know the better treatment you will be able to find for yourself, plus MOST Drs know very little about RLS, so please educate yourself and print off things like the info from Mayo Clinic and take with you when you see your Dr.
There are many different class meds used in treating rls, sometimes its trial and error before you find one that works for you.
Yes RLS is horrid to have to deal with, but remember if you Stress about RLS it can make it worse. I just count my blessing its not cancer or something worse.
One thing I learned many yrs ago, dont fight the RLS attacks, just get up and get busy doing something that requires you to be on your feet. Because that is one way to make it stop.
I also have learned sitting in a rocker/recliner helps as I can keep feet/legs moving yet at least able to sit down.
Good luck and keep us posted to how you are doing..
Welcome Ana,
Glad you got here and what a great first post.
You need to know that none of us showed up here in an upbeat or happy way. Most of us came here in the same hopeless state that you are in. The bad part about being new here and reading around the board, is that all the information your learning is enough, but yes the suffering of others is also hard to read.
Chronic pain and then sleep deprivation are something that is hard to understand, if you hae never had to live that way. Well, not everyone here has pain with thier RLS, but many of us do. We all understand that sleep deprivation, that simple but overwhelming thought about going to bed, is huge. What seems like it would be silly to most, is real for us.
I won't even decorate my own bedroom for years, because I hated what it did not give me. Rest, comfort, relaxation, it was a battle field to me.
There are many ways to treat RLS. Many things we can do to lessen it with diet and lifestyle changes. We educate ourselves silly about anything RLS. We learn how to talk about RLS to non-RLSers, by practicng here.
Best yet, we support you no matter what! It's a done deal when it comes to people that honestly care and are willing to bring hope back to you. Not forced, it will just happen.
Your home with us my dear.
Welcome,
Lynne
Glad you got here and what a great first post.
You need to know that none of us showed up here in an upbeat or happy way. Most of us came here in the same hopeless state that you are in. The bad part about being new here and reading around the board, is that all the information your learning is enough, but yes the suffering of others is also hard to read.
Chronic pain and then sleep deprivation are something that is hard to understand, if you hae never had to live that way. Well, not everyone here has pain with thier RLS, but many of us do. We all understand that sleep deprivation, that simple but overwhelming thought about going to bed, is huge. What seems like it would be silly to most, is real for us.
I won't even decorate my own bedroom for years, because I hated what it did not give me. Rest, comfort, relaxation, it was a battle field to me.
There are many ways to treat RLS. Many things we can do to lessen it with diet and lifestyle changes. We educate ourselves silly about anything RLS. We learn how to talk about RLS to non-RLSers, by practicng here.
Best yet, we support you no matter what! It's a done deal when it comes to people that honestly care and are willing to bring hope back to you. Not forced, it will just happen.
Your home with us my dear.
Welcome,
Lynne
Hi Ana
Welcome to the board.
I live in UK, and I too have arthiritis in 8 places and on pain killers but there is nothing here for rls, and when the rls plays up big time so does my arthiritis, and I also have rls during the day too as well as night. My arthiritis is in both knees and both ankles as well as other places, life sucks.
love gill (UK)
Welcome to the board.
I live in UK, and I too have arthiritis in 8 places and on pain killers but there is nothing here for rls, and when the rls plays up big time so does my arthiritis, and I also have rls during the day too as well as night. My arthiritis is in both knees and both ankles as well as other places, life sucks.
love gill (UK)
TO GILL (AND ALL OF YOU)
FIRST OF ALL, THANKS FOR ALL YOUR SWEET ANSWERS, I FEEL PART OF A FAMILY NOW.
GILL: I WOULD LIKE YOU TO LISTEN TO THE RECORDED MESSAGE I POSTED LAST FRIDAY (42 MIN.), MAY HELP YOU, AT LEAST THAT'S THE INTENTION.
YOU HAVE TO DOWNLOAD IT TO YOUR COMPUTER FIRST. IT WILL BE AVAILABLE TILL THURSDAY.
LOVE
ANA
GILL: I WOULD LIKE YOU TO LISTEN TO THE RECORDED MESSAGE I POSTED LAST FRIDAY (42 MIN.), MAY HELP YOU, AT LEAST THAT'S THE INTENTION.
YOU HAVE TO DOWNLOAD IT TO YOUR COMPUTER FIRST. IT WILL BE AVAILABLE TILL THURSDAY.
LOVE
ANA
IF YOU CAN GO WITHIN YOU WILL NEVER GO WITHOUT. MAURICE GIBB
Ana
I'm a little late at welcoming you, but wanted to make sure I did. Welcome!!! I'm so glad you found us, but am so sorry you have RLS. And, you have the added agony of arthritis.
I came here, almost four years ago, in the middle of the night. I was at my wit's end--my legs were driving me crazy and I couldn't sleep at all. I soon discovered what a great place this is. I came the way most people do--desperately wanting to find understanding from others who suffered from RLS.
What I have found is a place where I don't have to pretend I'm okay if I'm not. I found a place where I don't have to explain myself constantly; where ideas and experiences are shared which have often helped me so much. And I found a very important thing, Ana--hope!
Oh, yes--there have been many times when I felt hopeless (and those times will return occasionally, I'm sure). But, here, among people who really do care and who suffer along with me, I found a shoulder to cry on, strength when I had none, answers because some people are great at research, and--once again--hope that my future won't be as dismal as I once thought it would be.
As Becat said, there's a grieving process we all go through. I'm sure you did when you found out you have arthritis. We're not going to be the person we always envisioned. But here, among other rlsers, you'll find that we are in this together, which is comforting. And, as Becat often says, and I'm para-phrasing, we're all in rowing the same boat and when one of us gets tired of rowing, someone else will row for us.
Oh, I'm so glad you were in voice chat the other night. Hope you join us again sometime. And, I hope you continue to post!
Sincerely
Jan
I'm a little late at welcoming you, but wanted to make sure I did. Welcome!!! I'm so glad you found us, but am so sorry you have RLS. And, you have the added agony of arthritis.
I came here, almost four years ago, in the middle of the night. I was at my wit's end--my legs were driving me crazy and I couldn't sleep at all. I soon discovered what a great place this is. I came the way most people do--desperately wanting to find understanding from others who suffered from RLS.
What I have found is a place where I don't have to pretend I'm okay if I'm not. I found a place where I don't have to explain myself constantly; where ideas and experiences are shared which have often helped me so much. And I found a very important thing, Ana--hope!
Oh, yes--there have been many times when I felt hopeless (and those times will return occasionally, I'm sure). But, here, among people who really do care and who suffer along with me, I found a shoulder to cry on, strength when I had none, answers because some people are great at research, and--once again--hope that my future won't be as dismal as I once thought it would be.
As Becat said, there's a grieving process we all go through. I'm sure you did when you found out you have arthritis. We're not going to be the person we always envisioned. But here, among other rlsers, you'll find that we are in this together, which is comforting. And, as Becat often says, and I'm para-phrasing, we're all in rowing the same boat and when one of us gets tired of rowing, someone else will row for us.
Oh, I'm so glad you were in voice chat the other night. Hope you join us again sometime. And, I hope you continue to post!
Sincerely
Jan
No one is alone who had friends.