Hi,
I'm new here, though not new to RLS. I was diagnosed nearly 10 years ago at the age of 40 and have been battling this ever since. I feel like a lab rat. I've been prescribed a total of 11 different medications over that time. I have severe RLS in my legs and arms. I seem to be very sensitive to drugs. Many I've tried have caused augmentation including Sinemet and Mirapex. At the present time I'm on Mirapex .5 mg 3 times per day, Nuerontin, 600 mg at night and Sinemet 25/100, 1/2 pill when I really need it. Because the Mirapex is causing augmentation, my Dr. has put me on Hydrocodone temporarily to try a drug holiday from Mirapex.
I'm not getting much relief. Granted, it's only been 3 days, but I still cannot reduce the dosage of Mirapex yet without having severe break through symptoms. I live a stressful life, I not only have my own business (as an artist) but I run another with my daughter (art gallery) and this RLS is wreaking havok with my life right now. I almost NEVER am able to sit except at the computer. I miss cuddling with my husband on the sofa in the evenings, probably the worst place there is for setting off my symptoms. I hate to travel, even short distances. I haven't had a good night's sleep in a long time. I feel sometimes that I live in my own private little hell because no one understands what I go through and there are no support groups in this entire state (SD). My Dr. acknowledges that I have the most severe RLS of anyone that she treats.
I guess I'm rambling, just needed to vent. I'm feeling pretty lonely and needed to talk to others who relate to what I'm going through. I love my life, I live on a ranch with a loving husband who tries to be understanding and supportive but feels helpless. I love my art, but the RLS interferes with that as well as time needed just to relax. I'm losing touch with what 'peace' feels like. My daughter and partner in business does not understand my condition and is very demanding of my time. She has a 'just get over it' attitude towards my misery and I become very frustrated with her. Ironically (at 26) she's having mild occasional RLS symptoms herself, so someday she may understand, though I would NEVER wish this on anyone.
Sorry so long, I just thought if anyone had any suggestions or advice, I'm certainly open to listening. I'm so glad you're here. This is a lonely disorder. Thanks for lending an ear..........
Brenda
Frustration
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ViewsAskew
- Moderator
- Posts: 16576
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
It is a lonely disorder isn't it? This community is like an oasis for many of us. Even if there isn't anything helpful here (and there is a lot!), just knowing that everyone who reads it REALLY GETS IT is the most indescribable feeling!
Vent away. We're here and will listen. If you want, do some reading. There are posts about augmentation that might help you help your doctor provide better treatment that actually works.
Welcome, Brenda, welcome to the club. I just wish we were more exclusive
so that our club wasn't needed. Since it is, though, I'm glad we're here.
Ann
Vent away. We're here and will listen. If you want, do some reading. There are posts about augmentation that might help you help your doctor provide better treatment that actually works.
Welcome, Brenda, welcome to the club. I just wish we were more exclusive
so that our club wasn't needed. Since it is, though, I'm glad we're here.
Ann
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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SheTiger68
- Posts: 4
- Joined: Tue Jan 31, 2006 2:19 am
Absolutely vent! I, myself, have only been a member for a few days, but boy, it sure helps to log on and read that others feel the same way. It is lonely, and I think part of it is that there is this stigma that RLS is just an annoyance to those that have it.
If I have learned one thing on here, it's to not give up hope. There are plenty of shoulders to cry on, and there are such incredible folks on here. I truly hope things get better for you.
If I have learned one thing on here, it's to not give up hope. There are plenty of shoulders to cry on, and there are such incredible folks on here. I truly hope things get better for you.
I live my life by these five simple words-"Everything Happens For A Reason"
Hi Brenda,
So sorry to hear about the frustrations you are having. It is challenge to find what will work and sometimes it seems hopeless, but you are not alone.
I am also an artist with RLS. I am 51 and its been bad for just a few years. Anyway, I was touched by your post and really hope that you will be finding some relief soon.
I am sending you a little cheer and I hope you get it right away!
Sherry
So sorry to hear about the frustrations you are having. It is challenge to find what will work and sometimes it seems hopeless, but you are not alone.
I am also an artist with RLS. I am 51 and its been bad for just a few years. Anyway, I was touched by your post and really hope that you will be finding some relief soon.
I am sending you a little cheer and I hope you get it right away!
Sherry
Hello to all
Hello to all,
I'm catching up on some of the postings I've missed in the last week or so and this caught my eye.
Brenda your truely among friends here, many of us artist as well.
As you have seen by the repsonse you've gotten, there are more than a few of us willing to lend an ear while one of us needs to vent.
Medications, what a laugh somedays. I think most of us have a small pharmacy within our own houses. I'm sorry that your not getting any relief, but as stated before, don't give up hope.
It does feel like it's a private hell more often than not, no one is awake to keep us company, they sleep so soundly, this could almost make us mad, right? That is how my favorite art project started, I had to do something quiet while I was awake and frantic, but didn't stir the whole house.
Even though you've had RLS for so long, I think being here you'll see that many of us have to learn to live with it and learn how to teach others. I'm sorry your daughter has it as well. Let's hope she always stays mild and manageable. But, don't count yourself or your feelings about this out. Your seriously coping the best you can and of course the others don't undrestand, but they can empathize better for you. Your worth it and what your going through counts, even if they can't see it.
I hate traveling as well. What used to be a wonderful thing is simply painful now. Long car trips meant great conversations, now I medicate and pray I sleep through them. I'm learning different tricks and coping skills, they help most of the time. When we retire i want a large motorhome to travel in. As we drive down the road I can walk back and forth, I'll count those laps as excericse and maybe then we can start up those long conversations again. LOL
Hang in there, you've got the best support group anywhere right here.
hugs to all
I'm catching up on some of the postings I've missed in the last week or so and this caught my eye.
Brenda your truely among friends here, many of us artist as well.
As you have seen by the repsonse you've gotten, there are more than a few of us willing to lend an ear while one of us needs to vent.
Medications, what a laugh somedays. I think most of us have a small pharmacy within our own houses. I'm sorry that your not getting any relief, but as stated before, don't give up hope.
It does feel like it's a private hell more often than not, no one is awake to keep us company, they sleep so soundly, this could almost make us mad, right? That is how my favorite art project started, I had to do something quiet while I was awake and frantic, but didn't stir the whole house.
Even though you've had RLS for so long, I think being here you'll see that many of us have to learn to live with it and learn how to teach others. I'm sorry your daughter has it as well. Let's hope she always stays mild and manageable. But, don't count yourself or your feelings about this out. Your seriously coping the best you can and of course the others don't undrestand, but they can empathize better for you. Your worth it and what your going through counts, even if they can't see it.
I hate traveling as well. What used to be a wonderful thing is simply painful now. Long car trips meant great conversations, now I medicate and pray I sleep through them. I'm learning different tricks and coping skills, they help most of the time. When we retire i want a large motorhome to travel in. As we drive down the road I can walk back and forth, I'll count those laps as excericse and maybe then we can start up those long conversations again. LOL
Hang in there, you've got the best support group anywhere right here.
hugs to all
Hi everyone, I'm new to the board
I have had RLS since I was about 10 but did not know what it was until about 14 years ago. I found a Doctor that sent me to have a sleep test for sleep apnea which I have and that doctor dignosed me with RLS also. I am a diabetic so that makes it worse. The sleep doctor put me on Pergolid Meslate and it has worked wonders. 
I will not say that I do not have problems but I can sleep most nights and I do not cry all day anymore. I tried several different drugs that either did not work or I was allergic to before this one was found. I have RLS reall bad everyday all day long so I have to take at leat 3 pills a day and sometimes 4 but that is okey as long as it helps. I have lots of medical problems-diabetes,heart failure,high blood pressure,etc. so I have lots of pills that I take everyday. I have a great Doctor that listens to me when I complain and tries to help and as long as he is here I will be okey but I will be lost without him. I have found that exercise does not help RLS as a matter of fact is cause it to act up worse. The Doctor that diagnosed me with RLS told me that it would. I have met and talked to lots of people with RLS since I found out that I had it. It is not well known around here but once you start telling people they realize that they have it also. My father and grandfather had it and my son has it. My sister does not but her daughter and her granddaughters have it. That to me is strange how did she missit. I have been told that RLS would not kill you but it will drive you crazy and believe me when I say that that was where I was headed when I found out what I had. Ido lots of crafts,jewelry making,paintin sewing, and reading and computer work to keep my mind busy. I am disabled with AS so I can't work anymore. I am glad that I found this board so I can have someone to talk to about this. 
I will not say that I do not have problems but I can sleep most nights and I do not cry all day anymore. I tried several different drugs that either did not work or I was allergic to before this one was found. I have RLS reall bad everyday all day long so I have to take at leat 3 pills a day and sometimes 4 but that is okey as long as it helps. I have lots of medical problems-diabetes,heart failure,high blood pressure,etc. so I have lots of pills that I take everyday. I have a great Doctor that listens to me when I complain and tries to help and as long as he is here I will be okey but I will be lost without him. I have found that exercise does not help RLS as a matter of fact is cause it to act up worse. The Doctor that diagnosed me with RLS told me that it would. I have met and talked to lots of people with RLS since I found out that I had it. It is not well known around here but once you start telling people they realize that they have it also. My father and grandfather had it and my son has it. My sister does not but her daughter and her granddaughters have it. That to me is strange how did she missit. I have been told that RLS would not kill you but it will drive you crazy and believe me when I say that that was where I was headed when I found out what I had. Ido lots of crafts,jewelry making,paintin sewing, and reading and computer work to keep my mind busy. I am disabled with AS so I can't work anymore. I am glad that I found this board so I can have someone to talk to about this. I am new at this so I do not know a lot about the things that you ask for. If you need this please tell me what it is.
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Ovr53
is this the pits or what?
I can certainly relate to everything that is being said here. I have been dealing with RLS for a couple years now. I have scoliosis, and stenosis, so I was told this could be causing the RLS, because I am not aware of it being in the family. I have been on Sinemet, but it just made it worse, so I quit taking it. I have been on Restoril, to help me sleep because of the pain from my stenosis, and it seemed to help me sleep without too much wakefullness from the RLS. When I heard about Requip, I told my Dr. I would like to try it, well so far, it hasnt been very successfull, I had to work myself up to 2mgs, 4 tablets, I understand thats a pretty hefty dose. I also have percocets for pain, and they usually put me to sleep, but then those being so addicting, my Dr. doesnt like giving me those too much, and I understand. i use to have to sleep in my living room chair so I could go to sleep because it hurt so bad to lay down with my arms hurting me, but my legs got so bad sitting up, even with them on a nice footstool, that I cant sleep sitting up anymore, and because of my arms, I cant lay down. 
I would roam the house aimlessly till all hours of the night. needless to say I have become a zombie, just not getting anywhere the sleep I need. I now have a hospital bed so at least I am little more comfortable, and can get at least some sleep, if my legs arent flyin around the room, lol, but thats not really funny either. I got the hospital bed because of my arms, not the RLS. I woke myself up a couple nights ago with my legs jerkin so hard my knees were burning. I dont know much about if anything at all about this Requip, i know it is for parkinsons, but used for RLS, something tells me its going to be like the others and do nothing for the severe cases 
I am emotionally drained, and start crying everytime I cant sleep. I know I should count my blessings and be glad I am not terminally ill, but never getting enough sleep is like being tortured! I am sure you all feel the same way, Its nice we all have a place to come vent though!!
I would roam the house aimlessly till all hours of the night. needless to say I have become a zombie, just not getting anywhere the sleep I need. I now have a hospital bed so at least I am little more comfortable, and can get at least some sleep, if my legs arent flyin around the room, lol, but thats not really funny either. I got the hospital bed because of my arms, not the RLS. I woke myself up a couple nights ago with my legs jerkin so hard my knees were burning. I dont know much about if anything at all about this Requip, i know it is for parkinsons, but used for RLS, something tells me its going to be like the others and do nothing for the severe cases I am emotionally drained, and start crying everytime I cant sleep. I know I should count my blessings and be glad I am not terminally ill, but never getting enough sleep is like being tortured! I am sure you all feel the same way, Its nice we all have a place to come vent though!!