SCARED STIFF!
SCARED STIFF!
hi guys,
i have been reading all your posts and have been investigating RLS. At first finding out what i have had for 15 years was a relief but now i am scared stiff!
mine has gradually got worse over the years but i am still able to control it without medication. listening to stories about women with RLS who get pregnant and it gets worse and how when i get older it gets worse. my partner and i have just bought a house together and plan in the future for many children and happy times. at it's worse this sydrome is a heartbreaker and i'm very scared and nervous about what our future holds.
any words of encouragement for a scared 24 yr old??????
i have been reading all your posts and have been investigating RLS. At first finding out what i have had for 15 years was a relief but now i am scared stiff!
mine has gradually got worse over the years but i am still able to control it without medication. listening to stories about women with RLS who get pregnant and it gets worse and how when i get older it gets worse. my partner and i have just bought a house together and plan in the future for many children and happy times. at it's worse this sydrome is a heartbreaker and i'm very scared and nervous about what our future holds.
any words of encouragement for a scared 24 yr old??????
I'm so so tired!!
There are many of us who have successfully given birth and raised childen while having RLS so do not despair! You are ahead of the game because you have a diagnosis and are arming yourself with education.
At 45 years old I can "mostly" control my RLS without drugs. I do end up taking an Ambien about 6 nights per month. There is a definate cycle to my RLS and I am still learning what helps and what makes it worse. The best thing for you to do right now is educate yourself and learn what works for you. When you do decide to become pregnant it will be helpful to have a strategy to deal with the RLS if it worsens during pregnancy, it might not but it doesn't hurt to be prepared.
At 45 years old I can "mostly" control my RLS without drugs. I do end up taking an Ambien about 6 nights per month. There is a definate cycle to my RLS and I am still learning what helps and what makes it worse. The best thing for you to do right now is educate yourself and learn what works for you. When you do decide to become pregnant it will be helpful to have a strategy to deal with the RLS if it worsens during pregnancy, it might not but it doesn't hurt to be prepared.
Hi Ngarde, and Miss Kathy,
N, I know reading this board can be scary. My own post probably don't help much with that, but even I have hope......and I know these people will send Hugs to you, help you get the best RLS education, even more important, that most solid support anywhere.
Kathy has already given you great advice, but I wanted to jump in too!
The answer is yes, to all your questions...However, you and your partner should proceed and plan, and live the life you can and should. There's only one perfect time to have kids, thats when your ready to be a good parent...
I, personally, have had RLS in a painful form for most of my 43 yrs., but got a good chunk of time in my late teens or early 20's and my pregnancy that were mild and easily managed. It stayed that wonderful until I broke my leg and ankle at 30 yrs old, so I might have been able to go longer still. And, it took so long for me to find someone that understood or would help, I was a bit out of control to begin with.
Yes, RLS can get worse and it can really be damaging to your life, but it doesn't have to be that way.
First your here and your getting educated. Way ahead of the problem or the progression, so you can now or then, be on top of it before it gets out of hand. Kathy is right, you have to have a great RLS education, many docs lack those skills and you'll have to defend yourself and your own body.
Second, if you find a doctor now and find a real partner in that doctor, your more likely to be able to be ahead of the game. It does take some of us time to find the right thing that works, having a doctor that is willing to partner with you, instead of "just take this" is so very important.
Do not be affraid to involve your partner with this disorder or with your RLS doctor. My husband has been key in backing up my story, sharing his own stress with my condition, and helping the doctor better understand my case.
Third, I do believe that getting treatment early or before the RLS gets out of control, where your insomnia is chronic and the RLS is more than occassional, is key. Your more likely to be able to control a small fire than a large one....if that makes any sense. EX: I had pain, chronic (yrs of it) insomnia, and whole body RLS by the time I found my doc....with a bit more education that I got here, I learned that if my doctor and I had tried a couple of low doses of a couple of things, I might have been able to use certain meds. longer. However, this comes from years of learning and a bit more advanced research as well. So, no harm by my doc.
Woman face many things that simply are a biologic nightmare, but docs are getting educated about that and it's floating the hope for me.
I'm glad you found us, only wish it could be for a fun reason. Your here now and we're happy to answer questions, point you in the right direction, or simply offer a hug and an ear.
Welcome to the board.
Lynne
N, I know reading this board can be scary. My own post probably don't help much with that, but even I have hope......and I know these people will send Hugs to you, help you get the best RLS education, even more important, that most solid support anywhere.
Kathy has already given you great advice, but I wanted to jump in too!
The answer is yes, to all your questions...However, you and your partner should proceed and plan, and live the life you can and should. There's only one perfect time to have kids, thats when your ready to be a good parent...
I, personally, have had RLS in a painful form for most of my 43 yrs., but got a good chunk of time in my late teens or early 20's and my pregnancy that were mild and easily managed. It stayed that wonderful until I broke my leg and ankle at 30 yrs old, so I might have been able to go longer still. And, it took so long for me to find someone that understood or would help, I was a bit out of control to begin with.
Yes, RLS can get worse and it can really be damaging to your life, but it doesn't have to be that way.
First your here and your getting educated. Way ahead of the problem or the progression, so you can now or then, be on top of it before it gets out of hand. Kathy is right, you have to have a great RLS education, many docs lack those skills and you'll have to defend yourself and your own body.
Second, if you find a doctor now and find a real partner in that doctor, your more likely to be able to be ahead of the game. It does take some of us time to find the right thing that works, having a doctor that is willing to partner with you, instead of "just take this" is so very important.
Do not be affraid to involve your partner with this disorder or with your RLS doctor. My husband has been key in backing up my story, sharing his own stress with my condition, and helping the doctor better understand my case.
Third, I do believe that getting treatment early or before the RLS gets out of control, where your insomnia is chronic and the RLS is more than occassional, is key. Your more likely to be able to control a small fire than a large one....if that makes any sense. EX: I had pain, chronic (yrs of it) insomnia, and whole body RLS by the time I found my doc....with a bit more education that I got here, I learned that if my doctor and I had tried a couple of low doses of a couple of things, I might have been able to use certain meds. longer. However, this comes from years of learning and a bit more advanced research as well. So, no harm by my doc.
Woman face many things that simply are a biologic nightmare, but docs are getting educated about that and it's floating the hope for me.
I'm glad you found us, only wish it could be for a fun reason. Your here now and we're happy to answer questions, point you in the right direction, or simply offer a hug and an ear.
Welcome to the board.
Lynne
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becat wrote:Third, I do believe that getting treatment early or before the RLS gets out of control, where your insomnia is chronic and the RLS is more than occassional, is key. Your more likely to be able to control a small fire than a large one....if that makes any sense.
Lynne
I agree with everything Lynne said, but really have started to believe this.
Like Lynne, I waited until I was desperate. And, I had no education about RLS on top of it. The two together? Not a good outcome.
Maybe I would have had this outcome regardless. I'll never know. But, I wish I hadn't spent so many years without sleep, ruining my relationships, etc. I wish I had not settled for nothing, thinking that there was nothing to be had.
On the other hand, I don't want anyone to read this thinking that they need Requip or Mirapex for RLS that goes away in 5 or 10 minutes, lol. Certain drugs, to me, are "big gun" drugs. They shouldn't be used casually. And certain drugs shouldn't be used at all in certain situations.
Education truly is the key. Only then can you decide what the best options are - pharma or non pharma.
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.
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.
Thanks guys for all of your encouraging words. Looking through all the different posts and topics i realise how lucky i am to just have it mild at the moment and how brave you severe sufferers are. To keep on top of things and stay positive with this.... (what i can only describe as..) 'annoying and frustrating'... syndrome is an acheivement in it's self. To tell you the truth, i'm actually dreading telling certain people in my life as it sounds so 'off the wall' and as one person who isn't a sufferer told me 'it's all in my head'!! !!
Saying that though, does anyone find that if they think about it, the twitchy-ness seems to get worse???? when i previously shared a room with friends on holidays etc, i was so conscious of it happening that it seemed to get worse.
Once again i'm thank-ful i can relax enough in my own home with my wonderful boyfriend and not have to be too conscious of it and embarrassed. If it comes on i have help on hand!!
Thanks again for the chat, it's great finding people in similar circumstances!
Saying that though, does anyone find that if they think about it, the twitchy-ness seems to get worse???? when i previously shared a room with friends on holidays etc, i was so conscious of it happening that it seemed to get worse.
Once again i'm thank-ful i can relax enough in my own home with my wonderful boyfriend and not have to be too conscious of it and embarrassed. If it comes on i have help on hand!!
Thanks again for the chat, it's great finding people in similar circumstances!
I'm so so tired!!
Scared Stiff
I am a frequent reader of this board and find it invaluable. I just wanted to let Scared Stiff know that not everyone's RLS gets worse when pregant. I was expecting my daughter 10 years ago, (I was 40) and have had RLS since my early teens. I hadn't started any meds yet because I thought there wasn't anything to be done about it. Anyway, to my pleasant surprise during my 7 1/2 months of pregnancy (I had a premie) my RLS went into remission. I think someone upstairs was making up for the 24/7 morning sickness. So, sometimes it doesn't get worse. As some of the other's have mentioned, you still should have a plan.
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Great point!
And, I want to add that RLS doesn't necessarily get worse anyway. My mom has had it at the same level for 50 years. It's cyclical and comes and goes. It wasn't worse in her pregancies, either.
In terms of the bag of tricks, Jill Gunzel's got the best bag I know of. You can reach her site at rlsrebel.com or buy her book. Excellent ideas.
And, I want to add that RLS doesn't necessarily get worse anyway. My mom has had it at the same level for 50 years. It's cyclical and comes and goes. It wasn't worse in her pregancies, either.
In terms of the bag of tricks, Jill Gunzel's got the best bag I know of. You can reach her site at rlsrebel.com or buy her book. Excellent ideas.
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.
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.