Wanting help and giving suggestions
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superpink21
Wanting help and giving suggestions
My name is Jessica and I am a 22 year old college student with RLS. I remember watching 20/20 at age 10 and hearing about RLS (when it first came out into the media) and I thought I had it. Well 12 years later, I do and I did and its a killer. For me however, its not just my legs, its my whole body. Does this sound like anyone? I have the sam feeling in my arms and especially my shoulder!! That when its really bad and hurts. I usually take a hot bath (till Im red) to soothe it but it doesnt always work. I was wondering what people tried to relieve the symptoms. I have tryied several things, but I notice I have to change them everyonce and a while. I have been using a suplement called Melatonin. It is a sleeping aid, and when I take it (usually around 10 or an hour before you go to bed) it helps me sleep and relieves my RLS. Also I know this sounds weird (maybe its a mental thing) but I have a bar of reqular Ivory soap in my bed, under the covers. Someone told me it helps her arithius. I have noticed that if it falls off the bed, I have more problems with my RLS. I am also on Lexapro, an antidepressant and I noticed that they say that can contribute to the worsening of symptoms. My mom says she thinks my dad has it too, and he is on the same medication. Can anyone tell me if Iron works? I am anemic and I take Iron pills sometimes, but I will take them everyday if it works. I am constantly on medication for other problems so I really dont want to add anything, so I was wondering if anyone had something that helps them sleep and alieviate the RLS. THANKS and maybe one day they will find something more permant to help us all!!!
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ViewsAskew
- Moderator
- Posts: 16589
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Hey, Superpink, welcome! RLS does suck, doesn't it? Glad we've got this group here, though.
Funny, everyone is so different - in what they are willing to try, in what works for them, etc. Melatonin made me have lucid dreams and was one of the worst things I've ever tried. The soap doesn't help me a bit
. So, I guess we all just keep trying and do what we can.
I took the med route in my 40's. I dealt with mild RLS in my 20's and 30's and moderate to severe PLMD in my 30's. It was the PLMD that drove me to get help. Since there really aren't any alternative treatments for PLMD, I went the med route. I'm glad I did, all the issues I've had notwithstanding.
If you can handle it without meds and you would prefer to, then that's the best choice for you. Our Sara does that. If you get to the point that your quality of life is less than you're willing to accept, then meds are worth a try. There are many out there that do help. Much of the complaints you hear on this site are from the small portion of people they don't help. ALl of the people they do help don't feel the need to come here.
- at least that's my theory. So, what you read here can seem a little skewed.
Well, I am a strong advocate of being informed. You sound like you know a lot, but the more you know the better in my book. If you're so inclined, read the links in the following post:
http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=549
Ann
Funny, everyone is so different - in what they are willing to try, in what works for them, etc. Melatonin made me have lucid dreams and was one of the worst things I've ever tried. The soap doesn't help me a bit
. So, I guess we all just keep trying and do what we can.
I took the med route in my 40's. I dealt with mild RLS in my 20's and 30's and moderate to severe PLMD in my 30's. It was the PLMD that drove me to get help. Since there really aren't any alternative treatments for PLMD, I went the med route. I'm glad I did, all the issues I've had notwithstanding.
If you can handle it without meds and you would prefer to, then that's the best choice for you. Our Sara does that. If you get to the point that your quality of life is less than you're willing to accept, then meds are worth a try. There are many out there that do help. Much of the complaints you hear on this site are from the small portion of people they don't help. ALl of the people they do help don't feel the need to come here.
- at least that's my theory. So, what you read here can seem a little skewed.
Well, I am a strong advocate of being informed. You sound like you know a lot, but the more you know the better in my book. If you're so inclined, read the links in the following post:
http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=549
Ann
Hi ya
Hi Ya Superpink,
So glad you found us, sorry that you needed to.
You noticed RLS around 10 yrs. old.....did you have growing pains as a younger child or just around then? Ask your dad if he did as a kid as well. RLS can be past on genetically, as well as, a secondary condition.
No, not everyone has pain, but about 50 % according to some experts.
I have always had pain in my lower back/hips and legs, but it's not the same symptoms with my arms and head/scalp. RLS can be a whole body issue.
Of course, medications of many kinds can bring out the worst of RLS, but yours may be genetic. If genetic, a change in medication can help, but RLS may always be with you. This is a progressive disorder, so it is possible that your symptoms will change over time. I did get a lessened or more managable period of time in my 20's, but it whomped me in my 30's after an accident.
You'll likely find that many us of use a combination of things to manage this stuff. I know that Ann and I are using iron, it's a slow process and there is no real guarantee that it works. Mine is likely going to take a while to bring up. Ann will have to update us on her thoughts, she's been at it a bit longer.......
Yes, I use home remedies as well, love the soap in bed and for cramps, but it doesn't work for everyone. We are all slightly different in what works for us, but all in the same boat. So we tend to share ideas so anyone can try them. Heck if soap helps, use it, it's cheap and no side effects....RIght? LOL
I also take cal/mag and I love heated anything, hot tub, bath, heating pads. I will be honest and tell you that I would not give up my medications. Pain and sleep aides........But I try most things natural to see if they help. There are some that have luck with going to bed early before RLS hits. Some do push ups, sit ups, run, walk....just to exhaust there limbs before bed.
We are all trying to figure it out, not an easy task for sure. But that's why this place is great. Tons of us understand and share our ideas, thoughts, and offer awesome support. We help each other around here.
Below I'm listing a link that Ann started.......it's got tons of great information that will give you plenty to read and learn. We'll gladly help anywhere we can.
http://rls.org/phpBB2/viewtopic.php?t=549
Hang in there. Education is your best defense and there's always hope.
So glad you found us, sorry that you needed to.
You noticed RLS around 10 yrs. old.....did you have growing pains as a younger child or just around then? Ask your dad if he did as a kid as well. RLS can be past on genetically, as well as, a secondary condition.
No, not everyone has pain, but about 50 % according to some experts.
I have always had pain in my lower back/hips and legs, but it's not the same symptoms with my arms and head/scalp. RLS can be a whole body issue.
Of course, medications of many kinds can bring out the worst of RLS, but yours may be genetic. If genetic, a change in medication can help, but RLS may always be with you. This is a progressive disorder, so it is possible that your symptoms will change over time. I did get a lessened or more managable period of time in my 20's, but it whomped me in my 30's after an accident.
You'll likely find that many us of use a combination of things to manage this stuff. I know that Ann and I are using iron, it's a slow process and there is no real guarantee that it works. Mine is likely going to take a while to bring up. Ann will have to update us on her thoughts, she's been at it a bit longer.......
Yes, I use home remedies as well, love the soap in bed and for cramps, but it doesn't work for everyone. We are all slightly different in what works for us, but all in the same boat. So we tend to share ideas so anyone can try them. Heck if soap helps, use it, it's cheap and no side effects....RIght? LOL
I also take cal/mag and I love heated anything, hot tub, bath, heating pads. I will be honest and tell you that I would not give up my medications. Pain and sleep aides........But I try most things natural to see if they help. There are some that have luck with going to bed early before RLS hits. Some do push ups, sit ups, run, walk....just to exhaust there limbs before bed.
We are all trying to figure it out, not an easy task for sure. But that's why this place is great. Tons of us understand and share our ideas, thoughts, and offer awesome support. We help each other around here.
Below I'm listing a link that Ann started.......it's got tons of great information that will give you plenty to read and learn. We'll gladly help anywhere we can.
http://rls.org/phpBB2/viewtopic.php?t=549
Hang in there. Education is your best defense and there's always hope.
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superpink21
Thank You!!
WOW 
It is nice to know that there are people like me out there. Thank you for caring enough to write me with some hope. I understand that its going to be hard and might even get worse but Im willing to fight it and try anything to help people like us. Everyone thinks Im crazy about the soap thing, but you know if it helps me, then I dont care what people think. I was wondering, thinking about it alot last nite, what can cause it, bring it on, and make it worse. I really would like to research on my own and see what I can find. My dad is a research scientist so I guess I inhierted that to. 
So this is what I was thinking. I was also in an accident in Sept and it made it worse. I have also had alot of surgeries in the past year, so I was wondering if the anesetics had anything to do with it. I have a lot of trouble sleeping. I cant go to sleep without the Meletonin. Because of the surgeries and problems I have been having Ive had to take alot of pain killers. I cant take them anymore because when I get off of them I cant sleep anyone. Does any of this sound familar or make sense? Also do you have trouble falling asleep even without rls? What do you do? Thank you so much for all of your help. You have no idea how much it helps to talk to someone. Many nights I just cry myself to sleep and during the day Im depressed because I feel like everyone thinks Im making it up. Thank you!
Jess
It is nice to know that there are people like me out there. Thank you for caring enough to write me with some hope. I understand that its going to be hard and might even get worse but Im willing to fight it and try anything to help people like us. Everyone thinks Im crazy about the soap thing, but you know if it helps me, then I dont care what people think. I was wondering, thinking about it alot last nite, what can cause it, bring it on, and make it worse. I really would like to research on my own and see what I can find. My dad is a research scientist so I guess I inhierted that to. So this is what I was thinking. I was also in an accident in Sept and it made it worse. I have also had alot of surgeries in the past year, so I was wondering if the anesetics had anything to do with it. I have a lot of trouble sleeping. I cant go to sleep without the Meletonin. Because of the surgeries and problems I have been having Ive had to take alot of pain killers. I cant take them anymore because when I get off of them I cant sleep anyone. Does any of this sound familar or make sense? Also do you have trouble falling asleep even without rls? What do you do? Thank you so much for all of your help. You have no idea how much it helps to talk to someone. Many nights I just cry myself to sleep and during the day Im depressed because I feel like everyone thinks Im making it up. Thank you!
Jess
(((((((Jess)))))
Awwww (((((HUGS TO YA JESS)))))
My dear, trust me, we have all been there. Still can be some days. Finding this site and these people was a huge blessing for many of us.
We do tend to support one another and look to each other for a shoulder, an ear, a understanding many others miss. I cried the first night I found that my "growing pains" had a name. The reason for them not so easy to find, other than a genetic link for me.
We tend to be proactive around here and your most welcome to join us Help Ourselves. We love that attitude>
To help right away there are two things going on right now, one is a research project started by our friend Jumpyowl. I'll list the link and your welcome to fill out a survey for him. He too is a research scientist, who also suffers with RLS. Does not matter what level you suffer at or whether or not you have been on medications. Please feel free to give it a few minutes of your time.
http://www.thomasholly.net/survey/rlssurveystart.aspx
The other project we have going is Quality of Life statements. Just in your own words......If you had 5 minutes to talk to the researchers or the doctors that work on RLS.....what would you tell them about your Quality of Life. I'll give you a link to a thread that can show you some examples of what some of us have said. It also explains a bit more about what the Q of L is.
http://rls.org/phpBB2/viewtopic.php?t=536
you can email it to me or post it publically, your choice.
About how your RLS started......Sounded to me like yours may be genetic, however, I think that medications, surgeries, and accidents can contribute to it's level of effect on a person. I was totally managable until I broke my leg and ankle at 30 yrs. old. I did wake up at night many times, but could always take a hot bath or manage it until the accident. There are some that believe a prolonged use of certain pain medications can bring it on, but I'm not convinced about that one. Only convinced that medications can play havoc with RLS. If you had a genetic link before maybe the accident and surgeres brought it out stronger and faster.
If the meletonin helps use it. The next step is medications or learn to live with it. I use a pain medication and sleep medication. I can count on both hands when I've been able to go to sleep easily in over 10 years now. I simple did not have a name for it for 7-8 of those. Your not unusual in self diagnosis, many of us here found our own answers. Then it became a search for a doc that knew about it and how to treat it. There is a listing of docs on this site.......link below listed by states.....
http://rls.org/provider_directory/
Any chrnoic illness or disorder can make us feel hopeless that things can be different. I promise it may take a bit of trial and error, but things can be different. There is hope, we're all about stirring it up around here.
Your not alone anymore, you have a us. RLS is real. It can be managable.
Sending you cyber hugs (((((((Jess))))) Glad you found us.
My dear, trust me, we have all been there. Still can be some days. Finding this site and these people was a huge blessing for many of us.
We do tend to support one another and look to each other for a shoulder, an ear, a understanding many others miss. I cried the first night I found that my "growing pains" had a name. The reason for them not so easy to find, other than a genetic link for me.
We tend to be proactive around here and your most welcome to join us Help Ourselves. We love that attitude>
To help right away there are two things going on right now, one is a research project started by our friend Jumpyowl. I'll list the link and your welcome to fill out a survey for him. He too is a research scientist, who also suffers with RLS. Does not matter what level you suffer at or whether or not you have been on medications. Please feel free to give it a few minutes of your time.
http://www.thomasholly.net/survey/rlssurveystart.aspx
The other project we have going is Quality of Life statements. Just in your own words......If you had 5 minutes to talk to the researchers or the doctors that work on RLS.....what would you tell them about your Quality of Life. I'll give you a link to a thread that can show you some examples of what some of us have said. It also explains a bit more about what the Q of L is.
http://rls.org/phpBB2/viewtopic.php?t=536
you can email it to me or post it publically, your choice.
About how your RLS started......Sounded to me like yours may be genetic, however, I think that medications, surgeries, and accidents can contribute to it's level of effect on a person. I was totally managable until I broke my leg and ankle at 30 yrs. old. I did wake up at night many times, but could always take a hot bath or manage it until the accident. There are some that believe a prolonged use of certain pain medications can bring it on, but I'm not convinced about that one. Only convinced that medications can play havoc with RLS. If you had a genetic link before maybe the accident and surgeres brought it out stronger and faster.
If the meletonin helps use it. The next step is medications or learn to live with it. I use a pain medication and sleep medication. I can count on both hands when I've been able to go to sleep easily in over 10 years now. I simple did not have a name for it for 7-8 of those. Your not unusual in self diagnosis, many of us here found our own answers. Then it became a search for a doc that knew about it and how to treat it. There is a listing of docs on this site.......link below listed by states.....
http://rls.org/provider_directory/
Any chrnoic illness or disorder can make us feel hopeless that things can be different. I promise it may take a bit of trial and error, but things can be different. There is hope, we're all about stirring it up around here.
Your not alone anymore, you have a us. RLS is real. It can be managable.
Sending you cyber hugs (((((((Jess))))) Glad you found us.
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ANGELGIRL
PERIODIC LIMB MOVEMENT AND ANTIDEPRESSANTS
HI, I'M NEW TO THE SITE I POSTED A COUPLE OF MONTHS AGO BUT AT THE TIME I WAS GOING THROUGH A HARD TIME WITH MEDS AND DOCTORS NOT LISTNEING TO ME- I'M NOT EVEN SURE I POSTED CORRECTLY. IN A SHORT VERSON I WAS IN A CAR ACCIDENT GOING ON2 YEARS IN JULY. WHICH I ENDED UP HAVING A PLATE AND 4 SCREWS IN MY NECK. FROM THAT POINT I'VE BEEN GOING THROUGH HELL. I HAVE CHRONIC PAIN FROM INJURIES. I ENDED UP HAVING TO CLOSE MY BUSINESS HAVING A NERVOUS BREAK DOWN. MY QUESTION HAS TO DO WITH ANTI DEPRESSANTS AND PLMS. I'VE READ ARTICLES THAT THEY INCREASE SYMPTOMS. I'LL GIVE YOU MY LIST ON MEDS. SERAQUEL-(FOR DEPRESSION UNABLE TO TAKE COMMON ONES) CYMBALTA ANOTHER ANTIDEPRESSANT AND FOR PERIPHERAL NERVE PAIN, I ALSO TAKE FOR PAIN ZANAFLEX, ULTRACET, 25 MG FENTANYL PATCH EVERY 3 DAYS, PROVIGIL, PREVACID, DAYPRO, TROPROL XL, HYDROCHORZIDE AND NOW MIRAPEX. I WAS ON PROVIGIL BEFORE ACCEDENT FOR 8 YEARS FOR EXCESSIVE DAYTIME SLEEPINESS. AFTER HAVING A SLEEP STUDY IN MARCH I HAD NO REM SLEEP AND TWITCHED 248 TIMES IN 3 HOURS AND INCREASES ALPHA WAVES WHEN SLEEPING. I STARTED TWITCHING WHEN STARING SECOND ANTIDEPRESSANT- CYMBALTA. I CALLED MY PHYCHITRIST WITH SLEEP STUDY REPORT AND ASKED IF IT COULD BE FROM ANTIDEPRESSANTS HE SAID NO. TO MAKE A LONG STORY SHORT INSEAD OF CHANGING MEDS ANOTHER DOCTOR JUST STARTED ME ON MIRAPEX. MY FAMILY DR UPSET FIND OUT WHAT IS CAUSING TWITCHING NOT ADD ANOTHER DRUG WHICH I AGREE WITH. AND OF COURSE THE SIDE EFFECTS. I HAVE EVERY DOCTOR TELLING ME SOMETHING DIFFERENT ABOUT ANTIDEPRESSANTS AND WHETHTER TO TAKE MIRAPEX. AGAIN I SUFFER FROM CHRONIC PAIN- FIBROMYALGIA AND PLMS WHICH WAS JUST DIAGNOSED. SEVERE SLEEPINESS DURING DAY. DOES ANYONE HAVE ANY INPUT AS FAR AS THE PILLS I TAKE. I FEEL AS IF I TAKE PILLS TO STAY AWAKE AND PILLS TO SLEEP AND DOCOTRS KEEP INCREASING MEDS STARTED ON 200 MG OF PROVIGIL IN AM TO 200 IN AM AND 200 MG AT NOON.
THANKS FOR ANY COMMENTS
THANKS FOR ANY COMMENTS