Hi everyone, this is my first time posting, however, I have been lurking reading posts for some time now. I have learned so much from the people here! I would like to share my story and ask for suggestions. I am 29 years old and have RLS. I realize now I have had it for most of my life in a much less severe form, I just didn't know what it was. When I was younger, it only occured when I would take meds like benadryl or when I was stressed out. My current issues started about 14 months ago. I had my second child and was having some issues with PPD, so my family doc put me on Zoloft. I was on the medication for about 3 months, and my RLS symptoms got much worse during that time before I realized the Zoloft might be the cause. I stopped taking the medication and my symptoms improved, unfortunatly not much though. I was starting to have issues with my lack of sleep and worsening symptoms, with the problem starting to move into my arms. After reading some suggestions here, I took a vicodin that I had leftover from having my son, and it worked wonderfully. I decided to see my doctor to get something to help, because by this time I was not able to sleep and was having issues during the day as well. My only option for meds was opiates because I am still nursing my 16 month old and meds like requip inhibit lactation, and benzos build up and can pass through milk to the baby. Anyway, my dr. prescribed me vicodin with instructions to only take 10 per month. Fine, but am I supposed to only sleep 10 nights per month? I understand the issue with prescribing narcotics, but I have no history of drug abuse, and this is what works. My system is basically to take 1 vicodin per night, with a 2 day break about every ten days so I am not becoming dependant. Last week I went to my doctor again to discuss my treatment. I explained to him how much vicodin I have been using (basically 25 5/500's per month) and asked about the possibilty of trying something like tramadol so I wasn't taking unneccessary acetaminiphen. He said he wanted me to continue with the vicodin, but to try something else for half the time. Either one night with the vicodin, one with the other med, or one week with vicodin and another with the other med. Okay, great, sounds good. So the other med he gave me is Vistaril. Anyone see a problem with that? I looked up Vistaril and found that it can aggravate RLS similar to benadryl. I decided to go ahead and try it on the off chance that maybe I was wrong and it would work. OH MY GOD. I took it on Saturday and it was seriously one of the worst days of my life. The RLS took over my whole body and was extremely painful. Even after 2 doses of 2 vicodin I wasn;t getting any relief. So, now I know not to take it anymore, and figured once it was out of my system I would go back to normal. Wrong. Here it is 3 days later and I am still having severe painful RLS in my arms and legs 24/7. I am terrified it is not going to go away! The vicodin is taking the edge off, but not eliminating it. Plus, I have used almost my months supply of 15 just trying to get it under control. Please someone tell me this is just a reaction to the medication and it will get better. I called my dr.'s office this morning and told them about the reaction to the vistaril, they said well its a sedative, I dont know why you would have that reaction. I told the nurse how I had told the dr. I have the same reaction to benadryl, and she said well thats ridiculus, people with RLS have the opposite reaction than that to benadryl. It calms and relaxes them. WHAT????? Um, no, that is totally wrong. AHH, I am so frustrated. I just wish I could get the dr. to prescribe me one vicodin per day, or something else that works. I am also so angry that the doctor would give me a medication that is one of the worst things to give to someone with RLS. I asked today to speak to the dr. about all this, but never got a return phone call. I am also worried, because the last time I called for my vicodin refill the nurse said you are taking too much and they wouldn't refill it yet. Thats why I went in to see the doc and thats when he prescribed this other med. I don't want to look like a drug seeker, but its what works. And its not that much anyway. Anyway, sorry this is so long, I am just so scared and in pain right now. I want someone to tell me that this reaction to the vistaril will go away, and if anyone has any suggestions on how to talk to my dr about this please let me know.
thanks,
Emily
Scared and in pain......
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ViewsAskew
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Hi Emily,
I can imagine how scary it seems right now.
First, you were right, doc was wrong. Well, let's say, uninformed. It's just so difficult for us when we know this stuff and they don't, yet they have authority, so we don't trust ourselves to tell them NO, I will NOT take that.
That was one of my first, and hardest, RLS lessons. That doctors don't always know more than we do about RLS and if we know something, we have to stay strong and not let them tell us to do something we know is not helpful (or actively harmful). Like you, I paid a price for that with extremely escalated RLS.
Next, I wish I could tell you that this will pass. It should. It usually does. But, there are some of us that had permanently increased RLS from a drug that aggravated it. I know you don't want to hear that, but it is a possibility. Given that it is a possibility, even though remote, I think it would help to work from a different frame of reference.
What you need right now is a doctor who will listen to you and treat this RLS agressively for the short term. . .and stay with your longterm as you may not find an easy solution.
For the short term, the drug that seems excellent in similar circustances is methadone. I just did a quick search on methadone and breastfeeding. According to this research article, it is safe in doses less than 20 mg every 24 hours. Now, I'm not a doctor and you'd have to do more checking to ensure this is accurate, but if it is, this may be your temporary solution. http://pediatrics.aappublications.org/c ... 111/6/1429
Methadone is usually effective at doses in the 5-15 mg range, though some people do need up to 30 mg. As long as you can tolerate at least some opioids, chances are that you could tolerate this as well. There is no high involved (there is with Vicoden) and you don't have to worry about sleepiness or anything. It seems to be very effective for people whose RLS has been exacerbated by other drugs. For many of us, it helps calm the RLS down over a period of a week to a few weeks. After that point, you can then assess what next steps are. In addition, there are research studies about it being effective with RLS. That can be helpful in persuading the doc.
I am not suggesting it is the only drug, just that it is likely to work in a dosage that is considered safe for you and your child. Since Vicodin is not working at this time, it seems safe to guess that you'll need a stronger opoiod than Vicodin, which is considered in the moderate range for RLS.
What we really need most is a doctor who is willing to listen, to partner with you, to not discount what you say or discredit information you bring in. A doctor who will read what you bring in, whose ego isn't battered by a patient providing info.
Several of us have written about this many times over the last few years. To me, it's a very fine line you have to walk to get the help you need. If you are too emotional? They will think you are depressed or suicidal or drug seeking. But, you have to show them you are having difficulty. Would someone close to you come in with you? Explain what your life is like - another person's opinion can really help your cause.
Also key is to allow your doc to save face. He made a mistake, and just like you and me, he doesn't want his nose rubbed in it. Still, you have to find out what he might suggest next. You could ask him if he's ever had a case like this and what did he do. You could tell him that you realize that he probably doesn't put much stock in random Internet information, but are hoping he finds information from places like the Mayo Clinic and published research from places like PubMed to be acceptable.
Only you can decide if educating and working with this doctor is a possibility. In the past, has he shown that he can listen? He clearly didn't know that Vistaril could be harmful, but I'm guessing that you didn't yet realize that. If you can get him to talk to you, and you let him know that you have information from an RLS specialist and researcher that the drug he gave you can exacerbate RLS, and that you also have information from the Mayo Clinic about how best to treat RLS that is difficult, will he listen? If so, give it a whirl.
If you don't think he will listen to you, is there another doc - of ANY type - that you trust and that has listened well to you in the past? If so, call him or her up and see where you can get. If not, ask every person you know for a recommendation.
Hang in there Emily.
I can imagine how scary it seems right now.
First, you were right, doc was wrong. Well, let's say, uninformed. It's just so difficult for us when we know this stuff and they don't, yet they have authority, so we don't trust ourselves to tell them NO, I will NOT take that.
That was one of my first, and hardest, RLS lessons. That doctors don't always know more than we do about RLS and if we know something, we have to stay strong and not let them tell us to do something we know is not helpful (or actively harmful). Like you, I paid a price for that with extremely escalated RLS.
Next, I wish I could tell you that this will pass. It should. It usually does. But, there are some of us that had permanently increased RLS from a drug that aggravated it. I know you don't want to hear that, but it is a possibility. Given that it is a possibility, even though remote, I think it would help to work from a different frame of reference.
What you need right now is a doctor who will listen to you and treat this RLS agressively for the short term. . .and stay with your longterm as you may not find an easy solution.
For the short term, the drug that seems excellent in similar circustances is methadone. I just did a quick search on methadone and breastfeeding. According to this research article, it is safe in doses less than 20 mg every 24 hours. Now, I'm not a doctor and you'd have to do more checking to ensure this is accurate, but if it is, this may be your temporary solution. http://pediatrics.aappublications.org/c ... 111/6/1429
Methadone is usually effective at doses in the 5-15 mg range, though some people do need up to 30 mg. As long as you can tolerate at least some opioids, chances are that you could tolerate this as well. There is no high involved (there is with Vicoden) and you don't have to worry about sleepiness or anything. It seems to be very effective for people whose RLS has been exacerbated by other drugs. For many of us, it helps calm the RLS down over a period of a week to a few weeks. After that point, you can then assess what next steps are. In addition, there are research studies about it being effective with RLS. That can be helpful in persuading the doc.
I am not suggesting it is the only drug, just that it is likely to work in a dosage that is considered safe for you and your child. Since Vicodin is not working at this time, it seems safe to guess that you'll need a stronger opoiod than Vicodin, which is considered in the moderate range for RLS.
What we really need most is a doctor who is willing to listen, to partner with you, to not discount what you say or discredit information you bring in. A doctor who will read what you bring in, whose ego isn't battered by a patient providing info.
Several of us have written about this many times over the last few years. To me, it's a very fine line you have to walk to get the help you need. If you are too emotional? They will think you are depressed or suicidal or drug seeking. But, you have to show them you are having difficulty. Would someone close to you come in with you? Explain what your life is like - another person's opinion can really help your cause.
Also key is to allow your doc to save face. He made a mistake, and just like you and me, he doesn't want his nose rubbed in it. Still, you have to find out what he might suggest next. You could ask him if he's ever had a case like this and what did he do. You could tell him that you realize that he probably doesn't put much stock in random Internet information, but are hoping he finds information from places like the Mayo Clinic and published research from places like PubMed to be acceptable.
Only you can decide if educating and working with this doctor is a possibility. In the past, has he shown that he can listen? He clearly didn't know that Vistaril could be harmful, but I'm guessing that you didn't yet realize that. If you can get him to talk to you, and you let him know that you have information from an RLS specialist and researcher that the drug he gave you can exacerbate RLS, and that you also have information from the Mayo Clinic about how best to treat RLS that is difficult, will he listen? If so, give it a whirl.
If you don't think he will listen to you, is there another doc - of ANY type - that you trust and that has listened well to you in the past? If so, call him or her up and see where you can get. If not, ask every person you know for a recommendation.
Hang in there Emily.
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.
Emily, don't think that there is much more that I can add that Ann has not already said. As I have said before...the bad news is that you found us...the good news is that you found us. I truly know that with good information and tenacity you will...you will...improve your status. Do not feel you are alone or have to go through this alone. Enlist the help or friends and loved ones and lean on us too. You are not the only "long post" on this forum. We are here to be "long" (belong) with you. Sincerest wishes.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
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SquirmingSusan
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Hi Emily, so sorry you are suffering with this condition and the doctor either doesn't know what to do or isn't willing to do it. Unfortunately most of us here in this message board have been through similar situations, and many of us have had to keep trying different doctors until we found one who gets it.
Do bring a copy of the Mayo Clinic Algorithm to the doctor and maybe even to the nurses. If they aren't willing to learn, then you'll know it's time to look for a new doctor.
Unfortunately many doctors are too scared of the DEA to prescribe narcotic pain meds on a long term basis; and some even for the short term. It can be difficult to find a doctor who is willing to give you the meds you need even though the risk of addiction is way overblown, and all the current literature on RLS talks about opioids as being one of the most effective meds.
I have to go to a pain clinic to get my methadone, and have to pee in a jar for the state regulating authorities and the DEA every 3 months. It took about 2 months to get my first appointment there, and by law they can't prescribe opioids on the first visit. I had to resort to extreme measures to just get through those 3 months - I found an internet source for the meds I needed. Nowadays I just have to drive downtown every month to pick up the prescription, and see the doctor every 3 months.
Some people get so frustrated with the situation that they fly off to see Dr. Buchfuhrer in LA. Thinking back, I think that would have been better than all the stuff I went through trying to get treated!
Just know that it's difficult but not impossible to get good, effective treatment, and that with a lot of persistence you WILL feel better.
I've had very aggressive treatment - methadone, physical therapy for the pain, iron infusions because my ferritin was very low. I've gone from doctor to doctor to doctor. And I'm feeling much better. Not 100%, but better.
Hang in there! And keep us posted.
Do bring a copy of the Mayo Clinic Algorithm to the doctor and maybe even to the nurses. If they aren't willing to learn, then you'll know it's time to look for a new doctor.
Unfortunately many doctors are too scared of the DEA to prescribe narcotic pain meds on a long term basis; and some even for the short term. It can be difficult to find a doctor who is willing to give you the meds you need even though the risk of addiction is way overblown, and all the current literature on RLS talks about opioids as being one of the most effective meds.
I have to go to a pain clinic to get my methadone, and have to pee in a jar for the state regulating authorities and the DEA every 3 months. It took about 2 months to get my first appointment there, and by law they can't prescribe opioids on the first visit. I had to resort to extreme measures to just get through those 3 months - I found an internet source for the meds I needed. Nowadays I just have to drive downtown every month to pick up the prescription, and see the doctor every 3 months.
Some people get so frustrated with the situation that they fly off to see Dr. Buchfuhrer in LA. Thinking back, I think that would have been better than all the stuff I went through trying to get treated!
Just know that it's difficult but not impossible to get good, effective treatment, and that with a lot of persistence you WILL feel better.
I've had very aggressive treatment - methadone, physical therapy for the pain, iron infusions because my ferritin was very low. I've gone from doctor to doctor to doctor. And I'm feeling much better. Not 100%, but better.
Hang in there! And keep us posted.
Susan
Wow...thanks so much for the quick replies. It helps just to know someone is out there listening Unfortunatly, it is now 1 am and here I am...not sleeping. I plan to call the dr office first thing in the morn. I'll probably end up going in, seems like the only way to talk to the doc. One more question, does anyone know where I can find info to support the fact that this medicine is still causing my RLS to be aggravated even though it is out of my system? Thanks so much for the help!
Emily
Unfortunatly, it is now 1 am and here I am...not sleeping. I plan to call the dr office first thing in the morn. I'll probably end up going in, seems like the only way to talk to the doc. One more question, does anyone know where I can find info to support the fact that this medicine is still causing my RLS to be aggravated even though it is out of my system? Thanks so much for the help!
Emily
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Polar Bear
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ViewsAskew
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Emily, I only have a second (I'm on a conference call!), but saw this.
I do not know of any way. It has not happened to that many of us, but it HAS happened. Dr Buchfurer might know and might be able to direct the doc to something. You can email him - I'm out of time and have to return, will get this later.
I do not know of any way. It has not happened to that many of us, but it HAS happened. Dr Buchfurer might know and might be able to direct the doc to something. You can email him - I'm out of time and have to return, will get this later.
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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ViewsAskew
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OK, finally off the call (it was 3 1/2 hours long!!!!).
You may or may not have heard of Dr Buchfurer. His book, written with two other excellent doctors, Kushida and Hening - is a GREAT book to have and use with your doctor. I have taken in it several times with something highlighted. Doctors often will accept that, because it was written by 3 specialists and published by the Academy of Neurology.
But, Dr B also will answer patient questions on the rlshelp.org site. You can go there are read his responses, and ask him a questions. This sounds like the perfect question for him: "I've augmented after my RLS doctor told me to take a drug, Vistaril, that he thought would help. Needless to say, it made my symtoms much worse. I only took one dose, but the symptoms haven't abated in over three days. Currently, I am not sleeping at all and the drug I have, Vicodin, is just helping a bit, but not stopping the RLS. My doctor doesn't believe that this drug could have caused this. Please tell me 1) what can I cite or tell him to convince him that this is the cause of the increased RLS and 2) what treatment would you recommend to him?
Or something like that
He usually gets to responses quickly, but was on vacation a few weeks ago - ot sure if he's back yet.
You may or may not have heard of Dr Buchfurer. His book, written with two other excellent doctors, Kushida and Hening - is a GREAT book to have and use with your doctor. I have taken in it several times with something highlighted. Doctors often will accept that, because it was written by 3 specialists and published by the Academy of Neurology.
But, Dr B also will answer patient questions on the rlshelp.org site. You can go there are read his responses, and ask him a questions. This sounds like the perfect question for him: "I've augmented after my RLS doctor told me to take a drug, Vistaril, that he thought would help. Needless to say, it made my symtoms much worse. I only took one dose, but the symptoms haven't abated in over three days. Currently, I am not sleeping at all and the drug I have, Vicodin, is just helping a bit, but not stopping the RLS. My doctor doesn't believe that this drug could have caused this. Please tell me 1) what can I cite or tell him to convince him that this is the cause of the increased RLS and 2) what treatment would you recommend to him?
Or something like that
He usually gets to responses quickly, but was on vacation a few weeks ago - ot sure if he's back yet.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 so much, Ann. I just emailed him. I hope you don't mind, you question was worded so perfectly that I just cut and pasted it into my email, with a few small changes. I am still waiting on a call back from my doctors office. I spoke with someone this morning and told them I had to get a call back today. I just put my son down for a nap and accidently fell asleep with him. I had to wake up just a few minutes later to attend to my five year old, and my pain is so much worse now, it feels like fire under my skin on my arms and legs. And, I am out of vicodin, so now I have absolutly nothing to deal with the pain. Seriously, I don't understand how people can live like this, it is unbearable 
Emily
Emily
Hello Emily,
I am so very sorry for all of this RLS crap you've been going through. I very well know the hopeless feeling of it all. Shortly after finding this board and these wonderful people, I got myself a neurologist like others had suggested to me, and basically like everyone else on here.
And that made such a difference. You may just have to do some shopping around with doctors, I know I had been no stranger to it. It took me a long time to find a primary care giver that seemed to care and have some knowlege in what RLS was. My neurologist was the one who really helped me though. I have been on a bunch of medications, and unfortunaly, vicodin (opiates) are the only thing that gives me real relief. I am currently taking about 6 a day myself, so one a day for you doesnt seem like much of anything. My RLS is horrible, to the point of where on my last visit my neurologist suggested possibly putting me on morphine soon because he was worried of all the tylonol I was taking. I tell ya, I am only 20 years old..and the though of having to take 6 vicodin is crazy to me..and now maybe morphine? I dunno.
Just know that you are not alone. That this board has totally awesome people on it, and there is always atleast one person who can help. These people actually gave me hope and made me snap out of being quiet and shy about getting the treatment I need. I feel I will always be in dept for that, it changed my life so so much.
Quickly referring to benedryl, what the hell man. I cannot take that crap as well, my legs go CRAZY when I take that stuff..and it took me a while to figure that out too. Basically antihistamines (sorry if i cannot spell that) I cannot take. So I would rather just sneeze for a few hours than be in increased RLS pain all day from taking benedryl or something of the like.
I am so very sorry for all of this RLS crap you've been going through. I very well know the hopeless feeling of it all. Shortly after finding this board and these wonderful people, I got myself a neurologist like others had suggested to me, and basically like everyone else on here.
And that made such a difference. You may just have to do some shopping around with doctors, I know I had been no stranger to it. It took me a long time to find a primary care giver that seemed to care and have some knowlege in what RLS was. My neurologist was the one who really helped me though. I have been on a bunch of medications, and unfortunaly, vicodin (opiates) are the only thing that gives me real relief. I am currently taking about 6 a day myself, so one a day for you doesnt seem like much of anything. My RLS is horrible, to the point of where on my last visit my neurologist suggested possibly putting me on morphine soon because he was worried of all the tylonol I was taking. I tell ya, I am only 20 years old..and the though of having to take 6 vicodin is crazy to me..and now maybe morphine? I dunno.
Just know that you are not alone. That this board has totally awesome people on it, and there is always atleast one person who can help. These people actually gave me hope and made me snap out of being quiet and shy about getting the treatment I need. I feel I will always be in dept for that, it changed my life so so much.
Quickly referring to benedryl, what the hell man. I cannot take that crap as well, my legs go CRAZY when I take that stuff..and it took me a while to figure that out too. Basically antihistamines (sorry if i cannot spell that) I cannot take. So I would rather just sneeze for a few hours than be in increased RLS pain all day from taking benedryl or something of the like.
Everyone is different, not every medication works the same for everyone.
update
Thanks again for all the responses. I finally got in touch with my doctors office. They called in a new prescription for more vicodin. I have taken 15 mg this evening and am feeling better. Its strange though, I don't have pain, but I am still having the sensation and my arms and legs are feeling really jumpy/twitchy which isn't the norm for me. Basically it feels like it is still there, it just isn't bothering me as much, does that make sense? I feel like everything is tense inside my body. The doctor basically said to use the vicodin as needed until things improve. I think maybe he did some more research and realized what a mistake the vistaril was. I am really hoping to get a good nights sleep tonight. I am just really worried about staying like this. Just like when I took zoloft before, stopping the medication didn;t stop the problem. You know what else, I've decided the name Restless Leg Syndrome is really stupid. It makes it seem like a minor thing, and the syndrome part makes people not take it seriously. Its not just legs and its not just restless....its a real neurological condition. anyway, thats just my vent.....
Emily
Emily
Emily, so much information and so many things for you to think about...gets kinda overwhelming at times. I think if you have posted to Dr. B. a reply will be forthcoming. He likely will give you some suggestions that perhaps will give you and your doc further guidance. In the interim, though things are not perfect, it sounds like you are better and have something that is helping. Hopefully, as things begin to settle in your system you will feel even a bit better. We all know here that being proactive and dealing with the symptoms before they even start is best. Once the horse is out of the barn it is difficult to get things under control. So, keep with your regimen.
You may also want to use this time when things are not completely out of control to perhaps think about finding other rls providers in your area in case you decide to make a switch for whatever reason. Also, gathering or searching for some of the information suggested in posts such as the Algorithim or a copy of Dr. B's book might also be beneficial. I guess what I really mean is that maybe this is a good time to begin putting together a Plan A or Plan B should that become necessary.
I think you are very brave dealing with the hand you are currently holding. I commend you for the positive steps you have already taken and building determination and comfort in advocating for yourself. I'm glad you are finding some relief and hope things will continue to get better for you.
You may also want to use this time when things are not completely out of control to perhaps think about finding other rls providers in your area in case you decide to make a switch for whatever reason. Also, gathering or searching for some of the information suggested in posts such as the Algorithim or a copy of Dr. B's book might also be beneficial. I guess what I really mean is that maybe this is a good time to begin putting together a Plan A or Plan B should that become necessary.
I think you are very brave dealing with the hand you are currently holding. I commend you for the positive steps you have already taken and building determination and comfort in advocating for yourself. I'm glad you are finding some relief and hope things will continue to get better for you.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
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Polar Bear
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