Hi Greenakers! Welcome. You've found a good support system here on the board. The people at this forum are very caring and honest. The help I have found on this site is awesome and I'm sure you will find this out as you read more.
I also have diabetes and high blood pressure along with my rls. In addition I have fibromyalgia and multiple herniated discs in my back/neck. I totally understand the combination health issues. One of the first things I learned on the board is to make sure that the meds I take for my other health issues do not contribute to my rls. Luckily mine don't.
You are among friends here and anything I can do to help you through your tough times just let me know.
Cyndi
newbie
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cmoore1958
- Posts: 232
- Joined: Wed Jan 23, 2008 11:47 pm
- Location: Texas
newbie
I have recently been diagnosed with RLS..mine is a burning and tingling in the legs, worse in the evenings when I sit and rest..sometimes it is worse than others but no one seems to understand how uncomfortable it can be.I have been blessed that it doesn't affect my sleep, at least not yet. I have had it for about a year and we finally came up with a disgnosis after blood work and ct scans and x-rays
I have been on Mirapex for 10 days and am now at the .25 before bed..that is all I take for the RLS and it doesn't seem to help at all. I decided to take if for several more says and see if it kicks in.....but I am so disappointed.
I have been on Mirapex for 10 days and am now at the .25 before bed..that is all I take for the RLS and it doesn't seem to help at all. I decided to take if for several more says and see if it kicks in.....but I am so disappointed.
De De
hey a fellow dee dee only with 2 less e's ..maybe you just need a higher dosage...it took a few tries before i got my dosage right. or possibly the requip might work better for you....and then sometimes the da doesn't work fully without the help of a pain med.... you just need to discuss it with your doctor and arm yourself with some rls material to take and show he or she. ...
deedee
not a doc so please take your meds as prescribed by your doc.
deedee
not a doc so please take your meds as prescribed by your doc.
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
Hi De De,
Welcome to the board. So sorry you had the need to find us, but glad to have you now.
You know none of us here are doctors, but very educated in living with RLS.
My best advice is read everything in the sticky notes, even if it seems a bit overwhelming. The information that you'll be seeing is a bunch of links to other sites or articles, but the info is what you need.
Your best defense is a great RLS education and knowing your body.
If the meds you were given are not working in the time frame your doc said they would, then you call the office asap. Leave a message to have a phone conversation with your doc or the asst. or nurse that works closest to the doc.. Don't worry about calling, your paying them for that extra service, LOL
. Without the doc knowing and you waiting for the next appt. things could just get out of hand faster.
And maybe there is a simple answer that the doc can offer you right away.
For some of us, the medication path is a trial and error path. That is tough to get through mentally, because your always thinking "ok, this is it!" Sometimes it take tweeking. And when your feeling overwhelmed tell us, we'll listen offer what advice we can, or show you posts that explain exactly how your feeling.
Trust me, we all have felt the same things more than you might realized. Yes, if you don't have RLS it's almost impossible to understand, but the good news is that you can get someone to empathize and be better at supporting you, even if they don't have RLS.
And now you have us. It's a great group of people we have here. Support is what we do for each other, sharing and caring is the cherry on top. The education piece, comes in time.
Call the doc and let us know what happens. Wished I had a better answer, but I did at least want to say Hi and welcome.
That goes for Greenakers as well, lol, love the name.
Lynne
Welcome to the board. So sorry you had the need to find us, but glad to have you now.
You know none of us here are doctors, but very educated in living with RLS.
My best advice is read everything in the sticky notes, even if it seems a bit overwhelming. The information that you'll be seeing is a bunch of links to other sites or articles, but the info is what you need.
Your best defense is a great RLS education and knowing your body.
If the meds you were given are not working in the time frame your doc said they would, then you call the office asap. Leave a message to have a phone conversation with your doc or the asst. or nurse that works closest to the doc.. Don't worry about calling, your paying them for that extra service, LOL
. Without the doc knowing and you waiting for the next appt. things could just get out of hand faster.
And maybe there is a simple answer that the doc can offer you right away.
For some of us, the medication path is a trial and error path. That is tough to get through mentally, because your always thinking "ok, this is it!" Sometimes it take tweeking. And when your feeling overwhelmed tell us, we'll listen offer what advice we can, or show you posts that explain exactly how your feeling.
Trust me, we all have felt the same things more than you might realized. Yes, if you don't have RLS it's almost impossible to understand, but the good news is that you can get someone to empathize and be better at supporting you, even if they don't have RLS.
And now you have us. It's a great group of people we have here. Support is what we do for each other, sharing and caring is the cherry on top. The education piece, comes in time.
Call the doc and let us know what happens. Wished I had a better answer, but I did at least want to say Hi and welcome.
That goes for Greenakers as well, lol, love the name.
Lynne
thanks so much to all of you....that makes me feel better...and I will take your advice. (my family thinks I am nuts) and I try not to say too much to them about this mysterious condition.....I always have the strangest things happen to me and they have begun to think I am a hypocondriac. Anyway I am going to keep trying until I find something that works!
De De
LOL, your no more nuts than the rest of us, so we are all in good company.
hang tough, family and friends can be a rough spot for many of us. But the hope in me says that we end up knowing how to talk about RLS, by practicing here and you get a bit tougher about just knowing you have an answer to what has been torture.
We all have some that think that we make it all up, even me, with RLS being genetic on both my mom and my dad's side of the family. We're totally a riot at Christmas, whirlwinds in passings. LOL
You were never alone in this and now you know that your really aren't.
We live through this together here.
Let us know what the doc says.
Lynne
hang tough, family and friends can be a rough spot for many of us. But the hope in me says that we end up knowing how to talk about RLS, by practicing here and you get a bit tougher about just knowing you have an answer to what has been torture.
We all have some that think that we make it all up, even me, with RLS being genetic on both my mom and my dad's side of the family. We're totally a riot at Christmas, whirlwinds in passings. LOL
You were never alone in this and now you know that your really aren't.
We live through this together here.
Let us know what the doc says.
Lynne
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cmoore1958
- Posts: 232
- Joined: Wed Jan 23, 2008 11:47 pm
- Location: Texas
Hi De De,
Welcome to the board! I know exactly how you feel when you said your family thinks you're a hypocondriac. I am the "chosen one" out of four children that has the medical issues. My sisters and brother think they are normal -- joke's on them!
I have multiple disorders and each time one was diagnosed I got the rolling eyes and "yeah, right" remarks.
My dad was a very wise man and he told me once that God choose the special people to show others just how to manage multiple illnesses. Not everyone can do what we do and that alone makes us unique and individual. Keep your chin up and stand your ground. Since rls is hereditary, we should hope none of your family has it in the future, but sometimes that is what makes your rls valid. My older sister and brother both have rls now and it's amazing how it's now an accepted illness.
We're just on the forefront De De and chosen to be there for whatever reason. I think it's first because of our strength and ability to handle adversity and challenges. You Go Girl and focus on your needs right now.
It sounds like you definitely need to talk to your doctor. I take .5 Mirapex every night. I started at a lower dose and this is where I finally landed. Since each person's body is different you will react to meds in your own way. Listen to your body and remember you pay your doctor's salary - if he doesn't take good care of you, fire him!
Sorry this got to be so long, I can ramble at times.
Again, welcome to the board. Keep us posted on what the doc says and how you are doing. Let any of us know if we can help you further.
Hugs,
Cyndi
Welcome to the board! I know exactly how you feel when you said your family thinks you're a hypocondriac. I am the "chosen one" out of four children that has the medical issues. My sisters and brother think they are normal -- joke's on them!
I have multiple disorders and each time one was diagnosed I got the rolling eyes and "yeah, right" remarks.
My dad was a very wise man and he told me once that God choose the special people to show others just how to manage multiple illnesses. Not everyone can do what we do and that alone makes us unique and individual. Keep your chin up and stand your ground. Since rls is hereditary, we should hope none of your family has it in the future, but sometimes that is what makes your rls valid. My older sister and brother both have rls now and it's amazing how it's now an accepted illness.
We're just on the forefront De De and chosen to be there for whatever reason. I think it's first because of our strength and ability to handle adversity and challenges. You Go Girl and focus on your needs right now.
It sounds like you definitely need to talk to your doctor. I take .5 Mirapex every night. I started at a lower dose and this is where I finally landed. Since each person's body is different you will react to meds in your own way. Listen to your body and remember you pay your doctor's salary - if he doesn't take good care of you, fire him!
Sorry this got to be so long, I can ramble at times.
Again, welcome to the board. Keep us posted on what the doc says and how you are doing. Let any of us know if we can help you further.
Hugs,
Cyndi
Even when we are by ourselves, we are never truly alone.
My motto: It's MY pitty-party and I'll vent if I want to.
My motto: It's MY pitty-party and I'll vent if I want to.
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ViewsAskew
- Moderator
- Posts: 16603
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Hope all those new on the board are finding their way around, finding what they need. I'd name those who have posted in the thread, but it applies to anyone who is new and hasn't posted in this thread, too.
And, here is Cyndi, only with us only a month or so, but already welcoming those who are new. Gotta love this place.
And, here is Cyndi, only with us only a month or so, but already welcoming those who are new. Gotta love this place.
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.
most people who don't have this think we are imagining or it can't hurt that bad....i can't tell you how many time i have heard that....and from my own family. so don't feel alone. i myself have always wanted to take a fork hooked up with and electric current and stab them in the legs when they say that....and say hmmm that couldn't hurt that bad! morons...if u do this don't tell them where you got the idea 
sorry i didn't welcome you greenakers my brain is scrambled a bit at the moment i have a 13 and a 3 yr old both down with the flu running 102 temps and hacking and coughing on everyone in site. yay
but anyway welcome to our little board.
deedee
sorry i didn't welcome you greenakers my brain is scrambled a bit at the moment i have a 13 and a 3 yr old both down with the flu running 102 temps and hacking and coughing on everyone in site. yay
but anyway welcome to our little board.
deedee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
Welcome DeeDee,
For many years I suffered with RLS before most Drs knew there was RLS and so many times I got that look of "its all in your head" Well now I can honestly say to a Dr .. Yes its sure is all in my head.. since RLS is considered a Nuero problem. *L*
I often wish I could some how go back and re read all my old medical records, just to see what the Drs actually wrote in my files, when I would tell them I had Creepy Crawly feelings in my legs, and that I had to walk the floor all night every night.
We still have a long way to go before hopefully finding a "cure" for RLS, but its is so much better known in the medical world, so that gives us such great hope for the future. So the next time a family members looks at you like "its all in your head" Go ahead and say YEP it sure is, then hand the the latest RLS study, where it tells that RLS is caused by a malfunction in our brain, when it comes to transfering iron. That should pretty much shut them up..*L*
Honestly there is so much great info available for RLS, you just need to read and educate yourself as much as possible. Print off any info you think will be helpful in your search for something to control/help your RLS. You will find a list of meds NOT to take, due to them increasing your RLS.. Please print this list and keep it with you at all times, so if your Dr has to prescribe something for rls or anything else you can check the list BEFORE you leave his office, to make sure its not a med that can cause you more misery with your rls. Also there is a list of meds used to treat rls, that you need to print off.
I find that most Drs will read something from the Mayo Clinic site, so be sure and read their site also.. www.mayoclinic.com (click on the R)
Other great sites are
www.rlshelp.org
www.rls.org
www.wemove.org
and there are many other web sites.. Just type in Restless Legs into any search engine and you will be surprised at the amount of RLS info there is. Take your time and read as much as possible.
Trust me, the more you know about RLS the better treatment you can find thru Drs for yourself. Never be afraid of dismissing a Dr if he does not know or does not wish to learn about RLS. So many of us RLSer's have had to educate our Drs about this disease. So just know there are answers for you. But also know it may take awhile and many trials and errors before you find the right treatment for you.
Never give up.
For many years I suffered with RLS before most Drs knew there was RLS and so many times I got that look of "its all in your head" Well now I can honestly say to a Dr .. Yes its sure is all in my head.. since RLS is considered a Nuero problem. *L*
I often wish I could some how go back and re read all my old medical records, just to see what the Drs actually wrote in my files, when I would tell them I had Creepy Crawly feelings in my legs, and that I had to walk the floor all night every night.
We still have a long way to go before hopefully finding a "cure" for RLS, but its is so much better known in the medical world, so that gives us such great hope for the future. So the next time a family members looks at you like "its all in your head" Go ahead and say YEP it sure is, then hand the the latest RLS study, where it tells that RLS is caused by a malfunction in our brain, when it comes to transfering iron. That should pretty much shut them up..*L*
Honestly there is so much great info available for RLS, you just need to read and educate yourself as much as possible. Print off any info you think will be helpful in your search for something to control/help your RLS. You will find a list of meds NOT to take, due to them increasing your RLS.. Please print this list and keep it with you at all times, so if your Dr has to prescribe something for rls or anything else you can check the list BEFORE you leave his office, to make sure its not a med that can cause you more misery with your rls. Also there is a list of meds used to treat rls, that you need to print off.
I find that most Drs will read something from the Mayo Clinic site, so be sure and read their site also.. www.mayoclinic.com (click on the R)
Other great sites are
www.rlshelp.org
www.rls.org
www.wemove.org
and there are many other web sites.. Just type in Restless Legs into any search engine and you will be surprised at the amount of RLS info there is. Take your time and read as much as possible.
Trust me, the more you know about RLS the better treatment you can find thru Drs for yourself. Never be afraid of dismissing a Dr if he does not know or does not wish to learn about RLS. So many of us RLSer's have had to educate our Drs about this disease. So just know there are answers for you. But also know it may take awhile and many trials and errors before you find the right treatment for you.
Never give up.
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SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
Re: newbie
De De wrote:I have recently been diagnosed with RLS..mine is a burning and tingling in the legs, worse in the evenings when I sit and rest..sometimes it is worse than others but no one seems to understand how uncomfortable it can be.I have been blessed that it doesn't affect my sleep, at least not yet. I have had it for about a year and we finally came up with a disgnosis after blood work and ct scans and x-rays
I have been on Mirapex for 10 days and am now at the .25 before bed..that is all I take for the RLS and it doesn't seem to help at all. I decided to take if for several more says and see if it kicks in.....but I am so disappointed.
Hi De De, and welcome to the forum. Did your doctors ever mention neuropathy as a possible cause of your symptoms? Just wondering because that causes burning and tingling. Some of the medications we use can also be used for neuropathy with good results, such as Neurontin or Lyrica. So if the Mirapex doesn't help you, those might be better options.
In your blood work, did the doctors check your ferritin level? That is the level of stored iron in your body, which is different from just checking your iron level or your hematocrit. Low ferritin is clearly linked to worsened RLS. For many of us, boosting the ferritin level by taking supplements or just eating iron-enriched cereals can decrease our symptoms. But don't take supplements without first having the levels checked, as too much iron can be harmful.
Just some things to think about.
Susan
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Polar Bear
- Moderator
- Posts: 8856
- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
Hi de de
Welcome to the place where people want to help you.
I have had rls for over 30 years and for most of that time hadn't a name for it. I now take requip which helped a lot but not perfect. Recently, 6 weeks ago, began to supplement with codeine and a sleeping aid. Things are much better, tho still not perfect.
Best thing ever is that my GP will discuss, listen and try to help. Also the Mayo Algorithm is like a bible to us.
Good luck
Betty
Welcome to the place where people want to help you.
I have had rls for over 30 years and for most of that time hadn't a name for it. I now take requip which helped a lot but not perfect. Recently, 6 weeks ago, began to supplement with codeine and a sleeping aid. Things are much better, tho still not perfect.
Best thing ever is that my GP will discuss, listen and try to help. Also the Mayo Algorithm is like a bible to us.
Good luck
Betty
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
I don't think he checked the ferretin levels......but he does not think I have neuropathy. I thought RLS was the jerking and involuntary moving of the legs that disrupts your sleep but he seems to think that the burning and tingling are caused by RLS. ALso the fact that it feels much better when I move around. Did anyone else have these symptoms? Sort of like a sunburn on the legs? I failed to mention that I started taking magnesium and B-12 also...grasping at straws I guess. Matter of fact, my legs started burning on the drive home from work and are burning somewhat now as I sit here and type this....not too bad now but will get worse before bedtime if I d;t stay busy.
De De
Well, I just checked my messages and the Nurse called and said she talked to the Dr and he said to take 2 Mirapex at night. (.25 mg) I have to keep my grands in the AM and don't want to be hung over so I think I will take 1 1/2 to begin with...I hope and pray that this works..and I have only had it a short while..don't see how you all have stood it for so long..guess you just do what you gotta do...
De De