I feel a bit silly for this... but here goes.
As a newly diagnosed RLS sufferer, I'm failing to see the light at the end of the tunnel....
This is the second night in a row I've seen the wee small hours, and I 'd do anything to be able to go to sleep. Is this going to go for years?! I'm afraid I'm one of those people who needs a good 8 hours.
I'm coming off Effexor at the moment, having suffered from depression in the past, and am seeing that some sufferers are taking this to ease symptoms. I'm thinking therefore that it might not be such a bad plan to get put back on it! I'm at the point where I'm scared I'll never sleep properly again. My legs itch too, and are currently plastered in E45 cream, because I'm scratching them raw. I keep crying, and am becoming a really unpleasant person!
Please help, and tell me that this is going to be ok! I don't want to go back on the happy pills, but will if it stops the jerking and crawling sensations...
Depths of Despair
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violoboist
- Posts: 11
- Joined: Thu Jun 16, 2005 10:28 am
- Location: Yorkshire, England
Hi, and welcome!
I read all your posts, and can understand your fears. When I came here, it was because my RLS (that I'd had for decadess, but only known about for a couple of years) all the sudden got much worse. I was having symptoms 24 hours a day, and I thought... "Wow, I'm really in trouble now!"
I came here to see how bad it MIGHT get, and what I might be able to do about it.
I got kinda scared, I got kinda mad, and then I grieved a bit for what RLS was going to potentially do to my life... and then I sorta got over it, for the time being.
I think we all go through phases with any chronic disease. It gets worse, we get fed-up, we have to approach its management differently, and then we try and move on again.
Sounds like you're in an awfully "bumpy" place in the road of RLS, so to speak. When you don't sleep, EVERYTHING is a crisis. My RLS, thankfully, isn't as disruptive to my sleep as some people's, but I've suffered chronic insomnia in the past because of other conditions, and I know how bleak our lives and the whole world look when viewed from the wee hours, all alone, when everyone else is sleeping and ALL we want is peaceful slumber to get us ready for the day ahead. No wonder you're despairing!
I can't say it's all going to be fine, but there IS a lot of help out there, medically and some non-pharmaceutical tricks that also help some of us. Whether Effexor is good or bad for RLS, specifically, just the change in your stress levels and coping from going off, COULD tend to exacerbate your RLS symptoms -- or your perception of them. It's likely a complex time for you, all in all, so no surprise your RLS would be worse. Lots of folks here find stressful times bad RLS times, too.
But RLS CAN seem to be getting much worse over a period of time, and then ease off a bit, too. After the bad time I had when I first came here, my RLS eased off quite a bit in general. I still have some pretty bad times, but they don't go on forever, thankfully. And if they did, at least I know that I COULD go get medical help if I needed it.
Others here will have to comment on Effexor... I get the anti-d's all mixed up as to which make RLS worse. Plenty of folks here have had experience, so they can share, I'm sure. The leg-bouncing question is a curious one to me. I understand Ann's information shared in that thread, but also think that bouncing like you described, when you and your boyfriend are watching TV, could easily be because of RLS.
I have a 13 year old son who has RLS, but I didn't recognize it as that until just a year or so ago. Now I see his mannerisms differently, and although he also jiggles, presses, flexes and jerks his feet like I do, he also tends to bounce, too. And I know that when I was younger, I bounced my feet and legs more, also. Since I have a chronic anxiety disorder as well as RLS, it might have been partly a compensation for my anxiety, too, but I tend to think that in MY case and my son's, the bouncing was to counteract the strange and uncomfortable sensations of RLS. Just my two little cents on that.
Hang in there, and learn what you can here and elsewhere about RLS. There IS hope and help... even though most of us here know the feelings you're having. (Our Becat here on the forum calls it "RLS hopelessness"... I think that sums it up eloquently.)
Take care, and I hope that you get a break in the symptoms soon.
Sara
I read all your posts, and can understand your fears. When I came here, it was because my RLS (that I'd had for decadess, but only known about for a couple of years) all the sudden got much worse. I was having symptoms 24 hours a day, and I thought... "Wow, I'm really in trouble now!"
I came here to see how bad it MIGHT get, and what I might be able to do about it.
I got kinda scared, I got kinda mad, and then I grieved a bit for what RLS was going to potentially do to my life... and then I sorta got over it, for the time being.
I think we all go through phases with any chronic disease. It gets worse, we get fed-up, we have to approach its management differently, and then we try and move on again.
Sounds like you're in an awfully "bumpy" place in the road of RLS, so to speak. When you don't sleep, EVERYTHING is a crisis. My RLS, thankfully, isn't as disruptive to my sleep as some people's, but I've suffered chronic insomnia in the past because of other conditions, and I know how bleak our lives and the whole world look when viewed from the wee hours, all alone, when everyone else is sleeping and ALL we want is peaceful slumber to get us ready for the day ahead. No wonder you're despairing!
I can't say it's all going to be fine, but there IS a lot of help out there, medically and some non-pharmaceutical tricks that also help some of us. Whether Effexor is good or bad for RLS, specifically, just the change in your stress levels and coping from going off, COULD tend to exacerbate your RLS symptoms -- or your perception of them. It's likely a complex time for you, all in all, so no surprise your RLS would be worse. Lots of folks here find stressful times bad RLS times, too.
But RLS CAN seem to be getting much worse over a period of time, and then ease off a bit, too. After the bad time I had when I first came here, my RLS eased off quite a bit in general. I still have some pretty bad times, but they don't go on forever, thankfully. And if they did, at least I know that I COULD go get medical help if I needed it.
Others here will have to comment on Effexor... I get the anti-d's all mixed up as to which make RLS worse. Plenty of folks here have had experience, so they can share, I'm sure. The leg-bouncing question is a curious one to me. I understand Ann's information shared in that thread, but also think that bouncing like you described, when you and your boyfriend are watching TV, could easily be because of RLS.
I have a 13 year old son who has RLS, but I didn't recognize it as that until just a year or so ago. Now I see his mannerisms differently, and although he also jiggles, presses, flexes and jerks his feet like I do, he also tends to bounce, too. And I know that when I was younger, I bounced my feet and legs more, also. Since I have a chronic anxiety disorder as well as RLS, it might have been partly a compensation for my anxiety, too, but I tend to think that in MY case and my son's, the bouncing was to counteract the strange and uncomfortable sensations of RLS. Just my two little cents on that.
Hang in there, and learn what you can here and elsewhere about RLS. There IS hope and help... even though most of us here know the feelings you're having. (Our Becat here on the forum calls it "RLS hopelessness"... I think that sums it up eloquently.)
Take care, and I hope that you get a break in the symptoms soon.
Sara
Hi, I'm Jan
May I add my welcome to Sara's. I'm sorry you have RLS, but I'm really glad you've found us!
I've had RLS for most of my life. And, I hate to tell you this, but it is progressive. I started really noticing symptoms in my mid-30's. (I know I had it as a kid, but didn't know what it was then.) I'm now 57 and have a severe case. Even on meds, I never sleep more than 2 hours without waking up and that sleep isn't what I would call quality sleep.
I've also had experience with Effexor. I was diagnozed with fibromyalgia last fall. My neuro prescribed Effexor to help with the pain. For me, it was a disaster. It not only made my RLS worse, it caused me to have panic attacks, AND I had hives for at least 9 weeks. Turns out I didn't have fibro--I have rheumatoid arthritis.
But, just because I can't take Effexor, doesn't mean YOU can't. Anti-depressants are listed as drugs that exacerbate the symptoms of RLS, so most people with RLS probably should take anti-D's.
As you see, I've had RLS for a long time and I'm STILL struggling with sleep. I don't want to discourage you. I also have other health problems which cause me to have problems sleeping. As Sara said, there IS help out there. DON'T GIVE UP! I'm not going to! We all deserve good quality of life. I am still not giving up!
Come here as often as you need to and/or want to. Someone will ALWAYS be willing to listen to you and there will always be someone who either can help or knows someone who may be able to!
IT WILL BE OKAY!
Jan
May I add my welcome to Sara's. I'm sorry you have RLS, but I'm really glad you've found us!
I've had RLS for most of my life. And, I hate to tell you this, but it is progressive. I started really noticing symptoms in my mid-30's. (I know I had it as a kid, but didn't know what it was then.) I'm now 57 and have a severe case. Even on meds, I never sleep more than 2 hours without waking up and that sleep isn't what I would call quality sleep.
I've also had experience with Effexor. I was diagnozed with fibromyalgia last fall. My neuro prescribed Effexor to help with the pain. For me, it was a disaster. It not only made my RLS worse, it caused me to have panic attacks, AND I had hives for at least 9 weeks. Turns out I didn't have fibro--I have rheumatoid arthritis.
But, just because I can't take Effexor, doesn't mean YOU can't. Anti-depressants are listed as drugs that exacerbate the symptoms of RLS, so most people with RLS probably should take anti-D's.
As you see, I've had RLS for a long time and I'm STILL struggling with sleep. I don't want to discourage you. I also have other health problems which cause me to have problems sleeping. As Sara said, there IS help out there. DON'T GIVE UP! I'm not going to! We all deserve good quality of life. I am still not giving up!
Come here as often as you need to and/or want to. Someone will ALWAYS be willing to listen to you and there will always be someone who either can help or knows someone who may be able to!
IT WILL BE OKAY!
Jan
No one is alone who had friends.
Hello and Welcome
Hello and Welcome from across the pond, Violoboist......
You've been welcomed by two of our most wonderful of this group already.
Jan and Sara, my biggest hugs to ya and lots of love.
Violoboist, your not alone and your certainly in good company around here. We all wish we could tell you that it's only a phase your going through. It's like the flu and should pass.....We can't say that for most of us. Maybe getting off the Effexor is a good idea, but I've never used it. There are three medications for depression that seem to offer less problems for RLS...
Remeron, Serzone and Wellbutrin
Maybe one of these is available to you. I know from others here it's a slow process to come off of. You've got our support, if that helps any at all.
I am 41 yrs. old and RLS is my first memory in life. Painful as it was and is again, it's apart of me. I have several symptoms, deep aching in my legs, sleep like feelings in my arms, forget about my lower back/hips. I also have the itching. Most of the time I can ignore Most of it, but when I'm in a major attack......I can injure myself easily without thinking about it. There are others that know what we're talking about there.
Yes, I call what RLS does to many of us, "hopelessness". It's the feeling that nothing is going to change, certainly not soon enough. You come to a point that sleep the deprivation is so overwhelming, that everything else feels that way as well. I went without little to no sleep at all for over 8 yrs.. Couple that with chronic pain and I thought my time on earth was far too limited. I did seek help for two years without success. Finally, finding a doc that understood RLS and it's treatments. It still took some trial and error with medications until I found what worked for me.
I personally tried many of the RLS medications and found that I could or won't take them. 3 yrs. later I'm here to tell you that there IS HOPE. I'm going through a rough patch myself, but know that I can reset this cycle. I'm sure of it. Hopefully, the doc will come with me on it. LOL
You shouldn't give up hope. It's one of the things we hand out for free around here. We are always sorry anyone has to find us, but we're so glad you have now. Please know that your welcome to vent, share ideas, and educate yourself along with us. We came to this sight just like you did........Fed Up with our Quality of Life. We're a proactive group ready to make ourselves heard. Changing the way this world deals with us.
Your here know and that makes you apart of our family. Awesome people around here. Glad to have you. Hang in there honey. Your not alone anymore.
Hug to all.
You've been welcomed by two of our most wonderful of this group already.
Jan and Sara, my biggest hugs to ya and lots of love.
Violoboist, your not alone and your certainly in good company around here. We all wish we could tell you that it's only a phase your going through. It's like the flu and should pass.....We can't say that for most of us. Maybe getting off the Effexor is a good idea, but I've never used it. There are three medications for depression that seem to offer less problems for RLS...
Remeron, Serzone and Wellbutrin
Maybe one of these is available to you. I know from others here it's a slow process to come off of. You've got our support, if that helps any at all.
I am 41 yrs. old and RLS is my first memory in life. Painful as it was and is again, it's apart of me. I have several symptoms, deep aching in my legs, sleep like feelings in my arms, forget about my lower back/hips. I also have the itching. Most of the time I can ignore Most of it, but when I'm in a major attack......I can injure myself easily without thinking about it. There are others that know what we're talking about there.
Yes, I call what RLS does to many of us, "hopelessness". It's the feeling that nothing is going to change, certainly not soon enough. You come to a point that sleep the deprivation is so overwhelming, that everything else feels that way as well. I went without little to no sleep at all for over 8 yrs.. Couple that with chronic pain and I thought my time on earth was far too limited. I did seek help for two years without success. Finally, finding a doc that understood RLS and it's treatments. It still took some trial and error with medications until I found what worked for me.
I personally tried many of the RLS medications and found that I could or won't take them. 3 yrs. later I'm here to tell you that there IS HOPE. I'm going through a rough patch myself, but know that I can reset this cycle. I'm sure of it. Hopefully, the doc will come with me on it. LOL
You shouldn't give up hope. It's one of the things we hand out for free around here. We are always sorry anyone has to find us, but we're so glad you have now. Please know that your welcome to vent, share ideas, and educate yourself along with us. We came to this sight just like you did........Fed Up with our Quality of Life. We're a proactive group ready to make ourselves heard. Changing the way this world deals with us.
Your here know and that makes you apart of our family. Awesome people around here. Glad to have you. Hang in there honey. Your not alone anymore.
Hug to all.
OOOPS!
It's Jan again!
Sara emailed me and pointed out (THANKS SARA!) that I left out a very important word in a sentence in my post to you!
"......so most people with RLS probably should [NOT] take anti-D's."
That's the way the sentence SHOULD read. I left the word "NOT" out. Sorry!
Once again, good luck. (THANKS SARA!)
Jan
Sara emailed me and pointed out (THANKS SARA!) that I left out a very important word in a sentence in my post to you!
"......so most people with RLS probably should [NOT] take anti-D's."
That's the way the sentence SHOULD read. I left the word "NOT" out. Sorry!
Once again, good luck. (THANKS SARA!)
Jan
No one is alone who had friends.
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violoboist
- Posts: 11
- Joined: Thu Jun 16, 2005 10:28 am
- Location: Yorkshire, England
Thank you!
I did finally get to sleep at about four this morning!
Thank you very much for all your replies! I'll certainly keep coming back- it fells as though there are people who understand! Like you say, I think it's just anither one of those thngs that gets thrown in your way to trip you up (pardon the pun!), and I need to work out my own strategy... But it helps so much to know you're not alone!
Verity
x
Thank you very much for all your replies! I'll certainly keep coming back- it fells as though there are people who understand! Like you say, I think it's just anither one of those thngs that gets thrown in your way to trip you up (pardon the pun!), and I need to work out my own strategy... But it helps so much to know you're not alone!
Verity
x
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
Hi there and welcome
You are very lucky to have been welcomed by three of the most wonderful people I've had the pleasure of meeting! Jan, Sara, Becat...you are ranked very high on my list of "best things that have happened to me"! Thank you!
I just wanted to let Violoboist know that the scratching til you bleed, crying, i do that! I'm on Wellbutrin and if it weren't for my Fibro, I think i'd be off of it for what it does to RLS.
I did start taking Requip, but the headaches are too debilitating to keep on that until I can go back to see my neuro. So, I'll wait and yes, suffer.
Try to stay away from antihistimines as well! Good Lord they hurt!
Come here as often as possible, these people are the best and NO ONE JUDGES ANYONE here!
Loves
Penguin
You are very lucky to have been welcomed by three of the most wonderful people I've had the pleasure of meeting! Jan, Sara, Becat...you are ranked very high on my list of "best things that have happened to me"! Thank you!
I just wanted to let Violoboist know that the scratching til you bleed, crying, i do that! I'm on Wellbutrin and if it weren't for my Fibro, I think i'd be off of it for what it does to RLS.
I did start taking Requip, but the headaches are too debilitating to keep on that until I can go back to see my neuro. So, I'll wait and yes, suffer.
Try to stay away from antihistimines as well! Good Lord they hurt!
Come here as often as possible, these people are the best and NO ONE JUDGES ANYONE here!
Loves
Penguin
Beware the Penguin
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
I haven't been around the board for quite awhile but I agree that you have had some of the best, warm hearted, informed people helping you out. None of us want to discourage you, but RLS is such a back-stabbing kind of disorder. I have had it under control for quite awhile, then developed fibro. That's kind of under control and now the legs are acting up again. It can go in cycles but no one can predict when those cycles will be or what will trigger them. The one thing I have found is just not to fight it. If the creepy-crawlies start, get out of bed and do something. Read a really good book, get on the computer, start a hobby. It helps keep your mind off that hopelessness you feel when you just lie there thinking about not getting any sleep. There is help out there in the form of medicines and doctors, you just have to keep trying until you find the ones that work for you. And there is help here as you have already seen. Keep us posted on your journey.
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violoboist
- Posts: 11
- Joined: Thu Jun 16, 2005 10:28 am
- Location: Yorkshire, England
A bit more postive!
Hi all,
I've been to see my regular doctor tody (he was off the other day when I was diagnosed), and am feeling far more positive.
Unlike the first doctor, he has said there are plenty of things to try, and that after a week on some sleeping stuff to make me feel a little happier , he will stop those, and we will start trying things athat may or may not work!
On the down side, I've had my first daytime symptoms today- one of my beautiful cats had come up for a cuddle... he had my thighs pinned down, but my lower leges were driving me insane, so I had to chuck him off! I bet cats hate RLS as much as we do!
Just thought I'd let you know!
I've been to see my regular doctor tody (he was off the other day when I was diagnosed), and am feeling far more positive.
Unlike the first doctor, he has said there are plenty of things to try, and that after a week on some sleeping stuff to make me feel a little happier
, he will stop those, and we will start trying things athat may or may not work!
On the down side, I've had my first daytime symptoms today- one of my beautiful cats had come up for a cuddle... he had my thighs pinned down, but my lower leges were driving me insane, so I had to chuck him off! I bet cats hate RLS as much as we do!
Just thought I'd let you know!