Hi-I am new to this website and very depressed about my RLS
Hi-I am new to this website and very depressed about my RLS
I have suffered with RLS for about a year. My doctor does not seem to know a lot about RLS. She has put me on Requip. I was taking 1mg and now trying to take 2mg. but it makes me sick to my stomach. I also have trouble sleeping and this started before the RLS. So I also take Rozerem. I still wake up at least 10 to 15 times a night. I am sure you all know how frustrating RLS is and I just need help. I have tried to find a doctor in Oklahoma City or Oklahoma somewhere. Does anyone know of a good one? Help me please to find some way to deal with this.
I'm so sorry you're having to go through this...I was finally "formally" diagnosed with primary RLS after having this all my life (and horrendous exacerbation 3 years ago that started this all off in ernest...) I am on the east coast and don't personally ahve any doc recommendations, but I can tell you you've come to the right place for support. I know one of the more seasoned experts will be along shortly to give you the "official" welcome and the best hints, but hang in there and spend some time really reading this site. It's been a lifesaver for me!
Kim
Kim
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SquirmingSusan
- Posts: 3028
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- Location: Minnesota
- Contact:
Hi, and welcome to this forum. Sorry about the RLS. It bites. It gets very hard to be hopeful after months of not much sleep. But there are effective treatments out there. You'll just have to be persistent.
It's hard to find a doctor who really gets what RLS is all about. You may need to do some calling around - Maybe call a group practice of neurologists and ask if any of them specialize in RLS, or find a sleep clinic. Sleep clinics are almost always run by pulmonologists (lung doctors) and the docs may or may not be good with RLS. Also, I think on the main page of this site, rls.org, there is information about finding a doctor.
In the meantime, you can get a copy of the Mayo Clinic Algorithm and take it to your primary care doctor. It talks about the progression of meds that are usually tried to control RLS. If the Requip isn't working for you, there are other meds. And waking up 10-15 times a night just isn't good. I don't think many of us have had much luck with Rozerem - have you tried Ambien or Lunesta? Those might help you sleep better.
Good luck with it all. It takes time, but you will find treatment that works, doesn't make you sick, and will allow you to get some sleep.
Susan
It's hard to find a doctor who really gets what RLS is all about. You may need to do some calling around - Maybe call a group practice of neurologists and ask if any of them specialize in RLS, or find a sleep clinic. Sleep clinics are almost always run by pulmonologists (lung doctors) and the docs may or may not be good with RLS. Also, I think on the main page of this site, rls.org, there is information about finding a doctor.
In the meantime, you can get a copy of the Mayo Clinic Algorithm and take it to your primary care doctor. It talks about the progression of meds that are usually tried to control RLS. If the Requip isn't working for you, there are other meds. And waking up 10-15 times a night just isn't good. I don't think many of us have had much luck with Rozerem - have you tried Ambien or Lunesta? Those might help you sleep better.
Good luck with it all. It takes time, but you will find treatment that works, doesn't make you sick, and will allow you to get some sleep.
Susan
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ViewsAskew
- Moderator
- Posts: 16590
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Welcome, dcpudkat.
Because our doctors are not as informed as we'd like, the best way to handle this is to get as educated as you can. Truly. Then you know when the docs are on the right track and when they're not. You are also in the position to help them help you much more effectively.
To help, we've assembled "sticky" posts in each topic area. The New to RLS section is a great place to start, particularly with the Managing RLS sticky. It will provide you with the Algorithm that Susan mentioned along with many other pieces of information and links. Along with printing out the algorithm, you can print other info, too. Just be careful how much you take to the doc at one time
I've overwhelmed my docs more than once 
Also, consider buying a book or two about RLS. Both were written by people involved with the RLS Foundation. The one is written by three doctors - Buchfurer, Kushida and Hening. The other was written by Yoakum and both are available at Amazon.
Many of us find that we get results from different types of docs. Some of us have good luck with neurologist, while others don't. Some with sleep docs. Some with internists, others with our primary care docs. What is most important isn't how much they know, but how much they listen, have empathy, and will work with you to find the treatment that is best for you. Because over 20 drugs work on RLS, many of us end up with some combination of those 20.
Per the Requip, are you trying to jump from 1.0 to 2.0? That, in my personal non-medical opinion would be too much. No wonder you are sick! Try a smaller increase every three or four days.
Also, please please read the sticky info about getting your ferritin tested, about other drugs that worsen RLS, etc. You may find that something else in your life is worsening it and you don't need as much of the drug or even that drug.
Because our doctors are not as informed as we'd like, the best way to handle this is to get as educated as you can. Truly. Then you know when the docs are on the right track and when they're not. You are also in the position to help them help you much more effectively.
To help, we've assembled "sticky" posts in each topic area. The New to RLS section is a great place to start, particularly with the Managing RLS sticky. It will provide you with the Algorithm that Susan mentioned along with many other pieces of information and links. Along with printing out the algorithm, you can print other info, too. Just be careful how much you take to the doc at one time
I've overwhelmed my docs more than once
Also, consider buying a book or two about RLS. Both were written by people involved with the RLS Foundation. The one is written by three doctors - Buchfurer, Kushida and Hening. The other was written by Yoakum and both are available at Amazon.
Many of us find that we get results from different types of docs. Some of us have good luck with neurologist, while others don't. Some with sleep docs. Some with internists, others with our primary care docs. What is most important isn't how much they know, but how much they listen, have empathy, and will work with you to find the treatment that is best for you. Because over 20 drugs work on RLS, many of us end up with some combination of those 20.
Per the Requip, are you trying to jump from 1.0 to 2.0? That, in my personal non-medical opinion would be too much. No wonder you are sick! Try a smaller increase every three or four days.
Also, please please read the sticky info about getting your ferritin tested, about other drugs that worsen RLS, etc. You may find that something else in your life is worsening it and you don't need as much of the drug or even that drug.
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.
New to the RLS Foundation, however not new to RLS
I am 37 years old, was first officially diagnosed with RLS 3 years ago. However believe I've suffered with this horrible syndrome since I was about 8. Any way now I am being treated with Requip 2mg every night, and Darvocet every night as needed. I recently had athroscopic surgery on my right shoulder, and since have been in terrible annoying discomfort with my legs. It has been 2 months since my surgery, I have followed up with my specialist and he has since increased my Requip to 3mg at night. NO RELIEF!!!!!!!!!! I don't know what to do anymore. I also take Paxil 40 mg daily for depression/anxiety. I have read in many articles that my SSR medication (Paxil) may make my RLS worse. DOES ANYONE HAVE ANY SUGGESTIONS OR EXPERIENCES THAT MIGHT HELP ME??? Desparately Seeking
RLS Victim[/b]
Frustrated with my legs, concerned about the uncontrolled pain. Sick of feeling this way!!!
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ViewsAskew
- Moderator
- Posts: 16590
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
So sorry you are having all these problems. Many of us have been in similar situations.
I'd say the same that I said above to the other new member. Using this site to get an RLS education is the best thing you can do.
Read the sticky posts - these are invaluable. You'll find the algorithm there and info on what drugs to avoid and why testing your ferritin is so important.
Yes, the Paxil is probably making it worse. You have to find a doc who you can work with to decide what to do. If you need it, you may have to work to find the right combo of RLS drugs to work for you. This may take awhile. But, with perserverance, it will pay off.
I really am sorry you are here. I also hope you can find what you need here. Know that the information and help is here, but since there is so much, you'll need to help yourself by doing as much reading here as you can.
I'd say the same that I said above to the other new member. Using this site to get an RLS education is the best thing you can do.
Read the sticky posts - these are invaluable. You'll find the algorithm there and info on what drugs to avoid and why testing your ferritin is so important.
Yes, the Paxil is probably making it worse. You have to find a doc who you can work with to decide what to do. If you need it, you may have to work to find the right combo of RLS drugs to work for you. This may take awhile. But, with perserverance, it will pay off.
I really am sorry you are here. I also hope you can find what you need here. Know that the information and help is here, but since there is so much, you'll need to help yourself by doing as much reading here as you can.
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.