I am 34, woman, and..yes i have that exausting syndrom as well. I cant possibly put into words, how much frustration and anger i am feeling, when it comes to those damn legs.
Sometimes..when i am sleepless for too long, and the legs are painfull again and im playing soccer in my bed, i am saying things like:
I wanna amputate them.
This is how allienating it is , for me.
I mean...NOTHING helps.
Only time..
Morning comes..and that's over but yeah now, time to go to work and i am so unproductive!
Mirapex, all of them, none did a thing for me, except causing me major side effects that are worse than the rls itself.
Honnest to god...inside..i think i hope to wake up completely numb, and that's it#paralysed.
I'm young..it is awefull for my man to sleep on my side, i take all this very bad.
I wish there was a med, that takes away the pain, without making me feel sleepy, drowsy, confused or nausious, or about to faint.
....
and then, i'm reading today, that it gets worse, with age.
Makes me not wanna grow old at all.
Before..it was bareable..It was once a month maybe, and only legs.
Now, it's legs and arms, both at the same time, and i also now have noticed some kind of awkward feeling when i am about to fall asleep and the pain, cause there is pain, starts; it's like if i am constantly in a state of lucid dream, very unpleasant feeling that is REALLY annoying and hard to describe.
I feel for you guys who have lived with this for ages..i only have it for 5 years or maybe longer, i cant be sure.
Now, two months ago, i started to have a pain in the tail bone, the coccyx.
It seems my entire body is in pain sometimes.
Aww..well..enough whinning.
Thank you much for the replies..tell me im not alone, who's about to loose it here, cause, i thing im getting seriously depressive.
Chantale.
Much care.
Hi to all, from Montreal Canada( glad i found you guys..)
hi to all, from Montreal Canada ( glad I found you guys)
Hi Chantale and welcome to this group. I am glad that you found us but not glad that you have rls. It is a miserable disease and very frustrating.
Please check out this forum that you are on now and see "Managing RLS" as there is an excellent article from the Mayo Clinic Algorithm. If you are able to print it out, please do so and bring it to your dr. Another good site is www.rlshelp.org
Believe me I know how you feel. I have had rls for 20+ yrs and had a bout with it today. I am on meds that is helping but if I get stressed out about anything I can guarantee that it will happen. I try not to get stressed out, but that is easier said then done.
I hope that you find the right meds that will help you. Sometimes you have to go through a cocktail of meds before you find the one or ones that works for you. One thing to remember too is what works for one may not always work for someone else.
Please keep us posted on how you are doing and you are not alone. Please do not apologize for whining because you are not doing that. Whenever you feel the need to talk, vent, scream or whatever, we will be here for you.
Please check out this forum that you are on now and see "Managing RLS" as there is an excellent article from the Mayo Clinic Algorithm. If you are able to print it out, please do so and bring it to your dr. Another good site is www.rlshelp.org
Believe me I know how you feel. I have had rls for 20+ yrs and had a bout with it today. I am on meds that is helping but if I get stressed out about anything I can guarantee that it will happen. I try not to get stressed out, but that is easier said then done.
I hope that you find the right meds that will help you. Sometimes you have to go through a cocktail of meds before you find the one or ones that works for you. One thing to remember too is what works for one may not always work for someone else.
Please keep us posted on how you are doing and you are not alone. Please do not apologize for whining because you are not doing that. Whenever you feel the need to talk, vent, scream or whatever, we will be here for you.
Charlene
Taking one day at a time
Taking one day at a time
why thank you...
Cocktail of meds..
Whenever i hear that, i feel wrong. Im a nurse, even if i dont pratice anymore( im gonna be a thanatologist now) and i know one thing: im hypersensitive to meds.
Even a single advil or tylenol, makes me sweat like a pig and gives me heart palpitations. Over the years, i had no less than 10 allergic reactions, followed by very bad episodes of fainting several times a day, due to meds.
I am putting all my hopes in the non pharmaceutical elements.
In summer,my rls is worse, way worse.
I hate summers...
I cannot walk two miles without beeing on the verge of a heat stroke.
And im not exagerating.
Then i go to bed..i am hot, and then..the legs..
What kind of life is that?
In winter..i am the happiest. All is white, i feel like a penguin, and my bed feels heavenly. I get the rls episodes but, much less.
Does this makes any sense??
.
Whenever i hear that, i feel wrong. Im a nurse, even if i dont pratice anymore( im gonna be a thanatologist now) and i know one thing: im hypersensitive to meds.
Even a single advil or tylenol, makes me sweat like a pig and gives me heart palpitations. Over the years, i had no less than 10 allergic reactions, followed by very bad episodes of fainting several times a day, due to meds.
I am putting all my hopes in the non pharmaceutical elements.
In summer,my rls is worse, way worse.
I hate summers...
I cannot walk two miles without beeing on the verge of a heat stroke.
And im not exagerating.
Then i go to bed..i am hot, and then..the legs..
What kind of life is that?
In winter..i am the happiest. All is white, i feel like a penguin, and my bed feels heavenly. I get the rls episodes but, much less.
Does this makes any sense??
.
Amor vincit omnia.
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
Have you tried any other meds beside the Parkinson meds? I use hydrocondone or Ultram (tramdol) which are pain meds, all tho I dont have pain with my rls, the pain meds will stop the creepy crawlies of RLS, you might go to www.rlshelp.org and print off the list of meds used to treat rls and discuss these with your Dr.
I can also tell you that stressing over rls will only make it worse, I know its very hard to stay calm while having rls, but if you can manage to find something to do, even in the middle of the night, its better than laying in bed, feeling hopeless and stressing. I use to beat my legs and cry at night, but I learned from listening to many rlsers in chats, etc, that doing those things will only add to the rls, so if mine gets out of control, I just get up and find something to do, clean house, anything that requires me to be on the legs and stop the creepy crawly feelings.
I also will use a rocking chair to help, using legs to rock will keep the legs moving while you are at least able to sit down and relax some.I have rocker recliner and will sit and rock till legs settle down then just lean back and go to sleep, because I know if I get up and walk back to bed, the rls will usually kick in again. So take a blanket and pillow with you, when you get into recliner/rocker.
The best advice is to read all you can about rls and KNOW all the things that can make it worse, such as meds like antihistimines, antidepressants and etc. Also some foods are known to make rls worse. Print out the list of meds that can make rls worse, keep this list with you at all times, so IF a dr starts to give you a med for anything, even rls you can check that list to make sure its not a med that will cause you more problems with your rls. If you are taking ANY meds for anything like blood pressure, etc, check out those because many of those will increase rls. So much to know to make sure you are not given or accidently take something that will increase your rls.
I know years ago I took a Tylenol PM one night, and OH what a mistake that was, I didnt know it had antihisimines in it, well I walked and cried all night long. So if only I had read the ingredients I would have known NOT to take it. I guess we all learn from our mistakes, its just that when you make a mistake and it increases your rls all night, its a horrid thing to happen!!!
www.rlshelp.org
www.wemove.org
www.rls.org
www.mayoclinic.com
all great rls web sites..
I can also tell you that stressing over rls will only make it worse, I know its very hard to stay calm while having rls, but if you can manage to find something to do, even in the middle of the night, its better than laying in bed, feeling hopeless and stressing. I use to beat my legs and cry at night, but I learned from listening to many rlsers in chats, etc, that doing those things will only add to the rls, so if mine gets out of control, I just get up and find something to do, clean house, anything that requires me to be on the legs and stop the creepy crawly feelings.
I also will use a rocking chair to help, using legs to rock will keep the legs moving while you are at least able to sit down and relax some.I have rocker recliner and will sit and rock till legs settle down then just lean back and go to sleep, because I know if I get up and walk back to bed, the rls will usually kick in again. So take a blanket and pillow with you, when you get into recliner/rocker.
The best advice is to read all you can about rls and KNOW all the things that can make it worse, such as meds like antihistimines, antidepressants and etc. Also some foods are known to make rls worse. Print out the list of meds that can make rls worse, keep this list with you at all times, so IF a dr starts to give you a med for anything, even rls you can check that list to make sure its not a med that will cause you more problems with your rls. If you are taking ANY meds for anything like blood pressure, etc, check out those because many of those will increase rls. So much to know to make sure you are not given or accidently take something that will increase your rls.
I know years ago I took a Tylenol PM one night, and OH what a mistake that was, I didnt know it had antihisimines in it, well I walked and cried all night long. So if only I had read the ingredients I would have known NOT to take it. I guess we all learn from our mistakes, its just that when you make a mistake and it increases your rls all night, its a horrid thing to happen!!!
www.rlshelp.org
www.wemove.org
www.rls.org
www.mayoclinic.com
all great rls web sites..
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ViewsAskew
- Moderator
- Posts: 16584
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Hi again, Mack,
To make it easier to reference other sites and information, we've created "sticky" posts. These sit at the top of the different sections. And, in them, we've put common links, the algorithm, info on drugs, etc. In the sticky on manageing RLS in this section, we've got links to the criteria for RLS, the algorithm, many different websites to review for help, articles to take to your doctor, etc. In the other sticky in this section, we have loads of links to other sites.
I remember from the Yahoo board that you are great at providing links to newcomers or those looking for info. So, in case you find them useful - and I think they are tremendously useful - you can just provide links to the messages that these are in, or just to the "sticky" inself.
If you decide to look at them and see if you find the useful, and you notice anything missing in any of the stickies, let me know - I'll update the posts. I haven't checked the links in awhile, either - probably should.
To make it easier to reference other sites and information, we've created "sticky" posts. These sit at the top of the different sections. And, in them, we've put common links, the algorithm, info on drugs, etc. In the sticky on manageing RLS in this section, we've got links to the criteria for RLS, the algorithm, many different websites to review for help, articles to take to your doctor, etc. In the other sticky in this section, we have loads of links to other sites.
I remember from the Yahoo board that you are great at providing links to newcomers or those looking for info. So, in case you find them useful - and I think they are tremendously useful - you can just provide links to the messages that these are in, or just to the "sticky" inself.
If you decide to look at them and see if you find the useful, and you notice anything missing in any of the stickies, let me know - I'll update the posts. I haven't checked the links in awhile, either - probably should.
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.
-
SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
Hi Maelstrom, and welcome to the RLS forum. I'm so sorry that you are suffering with this dreadful condition, and that you're so sensitive to meds. That must be especially difficult. Having that many allergic reactions would certainly make me not want to take anything.
Someone else suggested painkillers as an option. My experience with those is that they have the least side effects of any medication used for RLS. I take methadone and I really don't notice it affecting me, other than it makes the pain and sensations go away. I don't know if you can take any of them, but it seems like there should be a couple that won't give you an allergic reaction.
And I totally know what you mean about summer! I believe Montreal is on the 45th degree latitude, as is my home in Minnesota, and we have very similar weather. We finally got our central air system put back in, and now I can hide inside until it cools off. I'm thinking I'm going to just have to go to the local shopping mall and walk to get exercise. And probably leave the checkbook and credit cards at home.
I'm curious as to what a thanatologist does? I know ancient Greek to know that the word means "study of death," but could you tell us more about what you'll actually be doing? It sounds fascinating.
Anyway, you're not alone in this misery. After taking Requip I was so, so depressed. A doctor actually sent me to the ER because I was suicidal. I'm a lot better now. Not perfect, but much, much better.
Hang in there. Even if the current medication options don't work for you, there is a lot of progress being made as far as new meds. Something will work for you!
Someone else suggested painkillers as an option. My experience with those is that they have the least side effects of any medication used for RLS. I take methadone and I really don't notice it affecting me, other than it makes the pain and sensations go away. I don't know if you can take any of them, but it seems like there should be a couple that won't give you an allergic reaction.
And I totally know what you mean about summer! I believe Montreal is on the 45th degree latitude, as is my home in Minnesota, and we have very similar weather. We finally got our central air system put back in, and now I can hide inside until it cools off. I'm thinking I'm going to just have to go to the local shopping mall and walk to get exercise. And probably leave the checkbook and credit cards at home.
I'm curious as to what a thanatologist does? I know ancient Greek to know that the word means "study of death," but could you tell us more about what you'll actually be doing? It sounds fascinating.
Anyway, you're not alone in this misery. After taking Requip I was so, so depressed. A doctor actually sent me to the ER because I was suicidal. I'm a lot better now. Not perfect, but much, much better.
Hang in there. Even if the current medication options don't work for you, there is a lot of progress being made as far as new meds. Something will work for you!
Susan
Hello Maelstrom and welcome to the boards.
I'm from Montreal also, and you are right: in the summer it is so hot out there with the humidity that it's hard to get out and exercise (or just go walking) for some people...
I'm new to all this (as I just figured out that I had RLS a few days ago).. but rest assure I am sure you will eventually find tricks and things to help that urge of moving your legs.
Take it a day at a time, and use those stickies on the forums to guide you to helpful websites.. it's what I have been doing in the past few days.
Cheers,
Estelle
I'm from Montreal also, and you are right: in the summer it is so hot out there with the humidity that it's hard to get out and exercise (or just go walking) for some people...
I'm new to all this (as I just figured out that I had RLS a few days ago).. but rest assure I am sure you will eventually find tricks and things to help that urge of moving your legs.
Take it a day at a time, and use those stickies on the forums to guide you to helpful websites.. it's what I have been doing in the past few days.
Cheers,
Estelle