What a great group. I found a Dr. thru this group that's been working with me for 6 months. I have severe RLS that is just as bad in the daytime as it is at night.
I've tried almost everything from Requip to Pamelor to Mirepex and a host of others and the only thing that works for me now is hyrocodone (5 pills 10/500 strength a day) and Klonipin (which I hate taking) at night. The problem is that's it's not enough and I dread (guilt?) telling the doctor that I need more hydrocodone, and truth be told I really dont want any more BUT it's the only thing that works.
Here's my secret that I never told anyone but my wife recently found out. I cut the bottom of my feet on the heels. I slice away enough skin with a razor until it starts to bleed. I do this over the whole bottom of the heel on both feet. Of course when I walk it really really hurts BUT the sensation in my feet and legs goes away. I'd rather have pain than that awful feeling RLS brings.
I'm so embarrased about this and REALLY don't want to tell the doctor I've been doing this because I'm afraid he will think I'm crazy. Am I the only one that does this?
Embarrased in Nevada...
My secret that I've never told anyone.
Hi Ray,
well, honey I can understand, but your doc needs to know just how your doing...and that is not doing well.
The other thing is that in this younger generation there is something they do called cutting or called cutters.
So you won't come off as crazy, but as a cutter. If this is not the case you'll need to explain that. I understand self injury, because I have had miagranes since I was 25 and it's easy to harm yourself when the pain is so bad you throw up. But what your doing is slightly different, in my opinion.
I undertand the 24/7 RLS, I've had RLS for most of my 42 yrs and have had it severely for the past 11-12 yrs. So, I'm with you, I promise.
Here what you need to get your mind and heart wrapped around. YOU ARE WORTHY OF RELIEF. You hired that doc to partner with you and if what your doing is not working.......get on that phone asap tomorrow morning and tell his head nurse, head PA, however assot him or her. It's not easy, but if your doc is a good one, they will listen and try to understand. How long have you been with your doc? that will make a difference, cause they (most hate passing out pain meds).
I would phrase it something like this " What I'm taking is not helping and I'm to the point of going crazy trying to make the RLS stop. I need help and can't wait for next appt." Only the doc would need to know the other details.
Ray, don't cut yourself babe, it's not worth it and the bleeding will not help your RLS, it will likely make it worse. so stop that. I'm too old to find you and give you a swat. so Stop that.
I will promise to stand by you and support you in this wuest. There is hope, yes even for you, and this can be much better.
Your home here among those of us that undrestand how crazty RLS can make oyu, but no more cutting.
Hugs
Lynne
well, honey I can understand, but your doc needs to know just how your doing...and that is not doing well.
The other thing is that in this younger generation there is something they do called cutting or called cutters.
So you won't come off as crazy, but as a cutter. If this is not the case you'll need to explain that. I understand self injury, because I have had miagranes since I was 25 and it's easy to harm yourself when the pain is so bad you throw up. But what your doing is slightly different, in my opinion.
I undertand the 24/7 RLS, I've had RLS for most of my 42 yrs and have had it severely for the past 11-12 yrs. So, I'm with you, I promise.
Here what you need to get your mind and heart wrapped around. YOU ARE WORTHY OF RELIEF. You hired that doc to partner with you and if what your doing is not working.......get on that phone asap tomorrow morning and tell his head nurse, head PA, however assot him or her. It's not easy, but if your doc is a good one, they will listen and try to understand. How long have you been with your doc? that will make a difference, cause they (most hate passing out pain meds).
I would phrase it something like this " What I'm taking is not helping and I'm to the point of going crazy trying to make the RLS stop. I need help and can't wait for next appt." Only the doc would need to know the other details.
Ray, don't cut yourself babe, it's not worth it and the bleeding will not help your RLS, it will likely make it worse. so stop that. I'm too old to find you and give you a swat. so Stop that.
I will promise to stand by you and support you in this wuest. There is hope, yes even for you, and this can be much better.
Your home here among those of us that undrestand how crazty RLS can make oyu, but no more cutting.
Hugs
Lynne
hank you Becat.
You have no idea how much you just said helped me. I'm 46 years old and haven't cried for as long as I can remember, but I am now. Just to have someone understand...
I've decided to follow your suggestion and call the Dr. first thing in the morning. I've heard of people cutting themselves but in my case I believe it's different because it's the only thing that takes away these crazy feelings in my feet/legs. Funny, I was just thinking of doing it again this afternoon because today is a really really bad day... but I have decided not to until I see the Dr.
I can't thank you enough. That someone I dont even know would take the time out of their day to help me....Thank you
Ray
You have no idea how much you just said helped me. I'm 46 years old and haven't cried for as long as I can remember, but I am now. Just to have someone understand...
I've decided to follow your suggestion and call the Dr. first thing in the morning. I've heard of people cutting themselves but in my case I believe it's different because it's the only thing that takes away these crazy feelings in my feet/legs. Funny, I was just thinking of doing it again this afternoon because today is a really really bad day... but I have decided not to until I see the Dr.
I can't thank you enough. That someone I dont even know would take the time out of their day to help me....Thank you
Ray
Ray, you'v efound just the place where many of us would kinfly take time to support anyone suffering with RLS.
phewwww, I'm too old to swat you, thank you for not cutting today.
And yes, I really do understand, as many will here.
Your ok, for today and tomorrow brings new hope.
Hugs to you and count on me anytime.
lynne
phewwww, I'm too old to swat you, thank you for not cutting today.
And yes, I really do understand, as many will here.
Your ok, for today and tomorrow brings new hope.
Hugs to you and count on me anytime.
lynne
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ViewsAskew
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Hi Ray,
I agree with Becat. Your doctor needs to know that what you are using isn't working.
I can propose some alternatives to hydrocodone. It is not in the strongest class of opioids and is not long-lasting. Since you have 24/7 RLS, one of the longer acting opioids might very well solve the problem of needing more hydrocodone. Many have had good luck on Methadone, and it happens to be the one that Dr Buchfurer, a member of the RLS Foundation's medical advisory board, recommends. For me, it lasts 12 hours - 1 dose.
I hope you tell your doctor that this is not working. It makes me sad to think you are in such misery that you are hurting yourself to make the RLS go away. I wish for you to get better treatment so you don't need to do that.
Hope you stay in touch and let us know what happens.
I agree with Becat. Your doctor needs to know that what you are using isn't working.
I can propose some alternatives to hydrocodone. It is not in the strongest class of opioids and is not long-lasting. Since you have 24/7 RLS, one of the longer acting opioids might very well solve the problem of needing more hydrocodone. Many have had good luck on Methadone, and it happens to be the one that Dr Buchfurer, a member of the RLS Foundation's medical advisory board, recommends. For me, it lasts 12 hours - 1 dose.
I hope you tell your doctor that this is not working. It makes me sad to think you are in such misery that you are hurting yourself to make the RLS go away. I wish for you to get better treatment so you don't need to do that.
Hope you stay in touch and let us know what happens.
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.
Thanks again Becat and Ann. I'll let you know what happens tommorow. I just got the book by Robert Yoakum last week and am still trying to make sense out of the whole thing. I've had RLS for about 7 years now and it just gets worse with time... But the one thing that matters most is that there are people like you out there willing to help and lend a shoulder.
It's so hard to describe to people (like my wife) what these feelings in my legs are. I never in my life thought I'd be in a position to choose pain as a relief over my RLS symptoms or over anything for that matter.
Thank you so much.
It's so hard to describe to people (like my wife) what these feelings in my legs are. I never in my life thought I'd be in a position to choose pain as a relief over my RLS symptoms or over anything for that matter.
Thank you so much.
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ViewsAskew
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Hi again,
FYI, I haven't read Mr Yoakum's book yet, but Dr Buchfurer does have one coming out hopefully by the end of August. It is written clearly and concisely. It has sections specifically designed to help us help our docs to help us better (yikes! - think I could have said help one more time???).
I'm glad you have an appointment to see the doc. None of us should have to suffer like that. It's just plain wrong. I hope your doc can help. If he or she cannot, you deserve to find one who will. Some of us spend too much time finding the one that will. But, when we do? It's completely worth it.
I have one other idea that might help. Please try this site: www.rlsrebel.com. Jill, the author of the site and of a book of the same name, has some fascinating ways to help us focus on other things instead of our RLS. I couldn't help but thinking how well you were doing that by cutting. You just switched your brain's focus to pain. Jill has some cool ideas to switch your brain to other things - they really do work. They don't always help me sleep, but they insure that I'm not focusing on the RLS during the day.
Welcome home.
FYI, I haven't read Mr Yoakum's book yet, but Dr Buchfurer does have one coming out hopefully by the end of August. It is written clearly and concisely. It has sections specifically designed to help us help our docs to help us better (yikes! - think I could have said help one more time???).
I'm glad you have an appointment to see the doc. None of us should have to suffer like that. It's just plain wrong. I hope your doc can help. If he or she cannot, you deserve to find one who will. Some of us spend too much time finding the one that will. But, when we do? It's completely worth it.
I have one other idea that might help. Please try this site: www.rlsrebel.com. Jill, the author of the site and of a book of the same name, has some fascinating ways to help us focus on other things instead of our RLS. I couldn't help but thinking how well you were doing that by cutting. You just switched your brain's focus to pain. Jill has some cool ideas to switch your brain to other things - they really do work. They don't always help me sleep, but they insure that I'm not focusing on the RLS during the day.
Welcome home.
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.
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
Ray, you've had the greatest advice from two of our best people on the board. I can't add anything to what they said except to let you know that we all care here. It's a crazy place sometimes, that's why we all are so comfortable here! We've all had thoughts about or done things that most people would be appalled at. That's why I fight so strongly against RLS. To most people we have a pesky fly sort of disorder if we truly have anything at all. RLS? That's not a disease, that's not fatal, that's all in your head. But all of us here know better. It's a horrible, horrible thing to live with. Distracting yourself from what you are going through is the first thing most of us try to do. But Ray, you are hurting yourself too much with the cutting. There has to be a better way. None of us are condemning you, please believe that. We just want you to try something else and wish we knew what that was. Try Jill's website like Anne said. Jill is a master at distracting herself from the RLS. But I warn you, it isn't something that is easy or quick to do. PLEASE keep us posted as to how you are doing. We're here for you.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)
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cornelia
Hi Ray, I'm Corrie from overseas. I agree that you have to mention the cutting to your doc. But I can relate a bit that when you experience a severe pain other than RLS (e.g. dental problems or frozen shoulder) it feels almost as a relief, because it overrules RLS.
I remember a post in another group from a long time ago. Someone with severe RLS had smashed his hand from sheer frustration against a wall and commented that the pain from his broken hand was much more tolerable than his severe RLS.
You have already found out that this is a warm group and so it is.
Corrie
I remember a post in another group from a long time ago. Someone with severe RLS had smashed his hand from sheer frustration against a wall and commented that the pain from his broken hand was much more tolerable than his severe RLS.
You have already found out that this is a warm group and so it is.
Corrie
Hi Ray
I can't add much (as Ruby said, you've received advice from two of the best people here). You can see how supportive this place is and that we have members from all over (hi Corrie).
I can tell you, again, that you're not alone. Though I've never cut myself, there have been many times when I felt like I was going totally crazy and I've screamed at the top of my lungs, hit myself, punched the air like some prizefighter. I'm on medication--have been for a long, long time--but I have breakthrough bouts of RLS.
However, even though it seems hopeless (and, believe me, I understand that feeling very mugh), I know deep down in my soul that it isn't. We have people (people who've answered you) working so hard to be a voice for all of us, spending countless volunteer hours, not just on here, but throughout their communities and, in fact, the entire country.
I'm so glad you've found this place, Roy. It has been, and continues to be, a constant source of support and encouragement for me. I know it will be for you, too.
You've found a family, Roy.
Hugs
Jan
I can't add much (as Ruby said, you've received advice from two of the best people here). You can see how supportive this place is and that we have members from all over (hi Corrie).
I can tell you, again, that you're not alone. Though I've never cut myself, there have been many times when I felt like I was going totally crazy and I've screamed at the top of my lungs, hit myself, punched the air like some prizefighter. I'm on medication--have been for a long, long time--but I have breakthrough bouts of RLS.
However, even though it seems hopeless (and, believe me, I understand that feeling very mugh), I know deep down in my soul that it isn't. We have people (people who've answered you) working so hard to be a voice for all of us, spending countless volunteer hours, not just on here, but throughout their communities and, in fact, the entire country.
I'm so glad you've found this place, Roy. It has been, and continues to be, a constant source of support and encouragement for me. I know it will be for you, too.
You've found a family, Roy.
Hugs
Jan
No one is alone who had friends.
ray I know how you feel, I have the same pain all day long. My dr. has me on oxycontin twice a day, sinimet 3 times a day, and klonopin at night. My problem is the dang pain med wears off around 1pm and then I have to suffer through the afternoon because I can't convince my dr. the stupid pill doesn't last 12 hrs like the label says it does. I don't get the creepy crawlies as some people do, my legs just hurt, hurt so bad it brings me to tears. I would really tell your dr. about the cutting. Don't feel bad about it, some people go to desperate measures to make this RLS quit hurting, at least you have the courage to speak out and try to get some help for it. Maybe you should tell your dr. your body has gotten used to the dosage you are taking now and maybe he should up the dosage, or try another pain med for you. I have been through quite a few. I hope everything works out for you, and don't be shy, we are all here to help. We are not drs but we certainly know what you are going through.
dee
dee
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
secret
Thank you again everyone for helping. I called the dr's office first thing this morning and told them that I was having a really bad time with the RLS and would like to see the doctor today to discuss some things. The first thing the nurse told me was that I couldn't have any more pills. I told her that I didnt want any more pills and that I need different pills as I'm in agony right now. She told me the best she could do was to get me in a day early, the 26th of this month instead of the 27th. I didnt want to tell her about the cutting and she wouldnt let me speak to the doctor so...I guess I just have to wait.
I had a small setback today with the cutting but not as bad as it could have been. I've started taking the klonipin during the day today (which I have never done before) hoping it would just knock me out (which it did for 5 hours) but I took 4 of them where I normally just take one before bed. I think i can make it until the 26th and then hopefully I can find something else to work.
Thanks again for listining...and for caring.
Ray
I had a small setback today with the cutting but not as bad as it could have been. I've started taking the klonipin during the day today (which I have never done before) hoping it would just knock me out (which it did for 5 hours) but I took 4 of them where I normally just take one before bed. I think i can make it until the 26th and then hopefully I can find something else to work.
Thanks again for listining...and for caring.
Ray
Ray, my sweet, your not getting off that easy.
You come here everytime you feel like cutting and write to us. We WIll HELP YOU through this.
Your not alone anymore and we really do care.
My heart is with you.
Prayers and the moon too.
You may not know but we all look at the moon at night, that way we know it's shines on all of us and we really are never alone.
Hugs to you.
Hang tough, we really do understand.
Lynne
You come here everytime you feel like cutting and write to us. We WIll HELP YOU through this.
Your not alone anymore and we really do care.
My heart is with you.
Prayers and the moon too.
You may not know but we all look at the moon at night, that way we know it's shines on all of us and we really are never alone.
Hugs to you.
Hang tough, we really do understand.
Lynne
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
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Ray, I hope it all works out magically. I've come to learn, however, that not all doctors are all that understanding and knowledgable about RLS. It may be that your doctor will not help you in the way you need.
I certainly don't know the "right" or "best" things to do. Here are some things you might consider.
Get your "ducks in a row" before you go. By that I mean to print out the Mayo Clinic Algorithm that details treatment for RLS (in the New to RLS sticky post). Or print out articles that support your position. Go to www.rlshelp.org and read the patient letters. Print any that support your position. The more you know, the better you can help guide your doc.
Think about your doc and how he likes to interact with you. Can you talk frankly and honestly without him misunderstanding you? Does he listen or does he just tell you what to do? Knowing this kind of stuff may help you decide how to talk to him about it.
Knowing the above may help you decide you to provide him with information. Some doctors are intimidated, others dismissive, and yet others can't believe you'd rather listen to some BS on the Internet instead of them! The best docs are grateful, but even they don't like to get many pages all at once. It's overwhelming. So, choose carefully and make sure that what you print is from a reputable source.
I'll keep my fingers crossed that it works.
Oh, one other idea. If you need to get in more quickly, tell the nurse you would like to be called in case of a cancellation. This has often gotten me in more quickly.
Oh, one other concern. Be careful with those Klonopin! They can cause a lot of problems taking them during the day, especially when you are not used to them.
I certainly don't know the "right" or "best" things to do. Here are some things you might consider.
Get your "ducks in a row" before you go. By that I mean to print out the Mayo Clinic Algorithm that details treatment for RLS (in the New to RLS sticky post). Or print out articles that support your position. Go to www.rlshelp.org and read the patient letters. Print any that support your position. The more you know, the better you can help guide your doc.
Think about your doc and how he likes to interact with you. Can you talk frankly and honestly without him misunderstanding you? Does he listen or does he just tell you what to do? Knowing this kind of stuff may help you decide how to talk to him about it.
Knowing the above may help you decide you to provide him with information. Some doctors are intimidated, others dismissive, and yet others can't believe you'd rather listen to some BS on the Internet instead of them! The best docs are grateful, but even they don't like to get many pages all at once. It's overwhelming. So, choose carefully and make sure that what you print is from a reputable source.
I'll keep my fingers crossed that it works.
Oh, one other idea. If you need to get in more quickly, tell the nurse you would like to be called in case of a cancellation. This has often gotten me in more quickly.
Oh, one other concern. Be careful with those Klonopin! They can cause a lot of problems taking them during the day, especially when you are not used to them.
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.
Thank you all again...I went to the Southern California website and started reading all the letters. Wow, there's a lot of them! I can't believe that there are so many different drugs/combinations out there! It does get a little overwehelming. What I HAVE learned is that taking to much klonipin is NOT a good idea. I also learned that lots of people have it in the daytime as well as the nightime so I'm not a minority and I'm not crazy. (ok, maybe the cutting thing is a little crazy)
Thanks for the suggestion on trying to get in on a cancelation. I told the nurse that yesterday but the only problem is that I live 2 hours away. Hopefully she will call anyway.
Here's some good news though....When I checked the list of recommened Dr's on this website in Dec. there was only one in Nevada. I just checked again and now there is one in my town! Do you think it would be OK for me to call and set up an appt with him just to kind of interview him? I don't want to make the other Doctor I'm seeing mad or have him think I don't appreciate him. I'm also downloading the Mayo Clinic Algorithm to take with me.
Sorry for the rambling but I'm just a total mess right now. I feel that I'm going a million miles an hour and getting nowhere.
Lot's of thanks, Lots of love,
Ray
Thanks for the suggestion on trying to get in on a cancelation. I told the nurse that yesterday but the only problem is that I live 2 hours away. Hopefully she will call anyway.
Here's some good news though....When I checked the list of recommened Dr's on this website in Dec. there was only one in Nevada. I just checked again and now there is one in my town! Do you think it would be OK for me to call and set up an appt with him just to kind of interview him? I don't want to make the other Doctor I'm seeing mad or have him think I don't appreciate him. I'm also downloading the Mayo Clinic Algorithm to take with me.
Sorry for the rambling but I'm just a total mess right now. I feel that I'm going a million miles an hour and getting nowhere.
Lot's of thanks, Lots of love,
Ray