I have been experiencing RLS symptoms since childhood. I remember agonizing "growing pains" and "insomnia" as a young child. As I grew up I went through phases where it was difficult to sit through movies. I had no idea why, and it was so frustrating! I am currently 24 years old (female) and in college. Last semester it reached an all time high during finals. I definitely find a correlation between stress and my RLS. It became so horrible that I couldn't sleep and I would cry every night wondering what was wrong with me! Eventually it began to affect my classes during the day - I felt the horrible sensations in my left leg to the point where I couldn't stay in class. One day I finally broke down and went to the University Health Clinic and when the nurse asked why I was there I just started bawling and handed her a list of my symptoms that I had written down in the waiting room. I had recently seen a commercial on RLS and had a pretty good idea of what it was at this point but I still felt like there was something very wrong with me and it was driving me INSANE! Definitely not what I would describe as "mild" or even "moderate" symptoms. My doc honestly didn't seem to know much about the disorder and she prescribed me Trazadone which I didn't feel comfortable taking. I have also tried Xanax, Klonopin, Requip, Muscle Relaxers, pot, chiropractic work, natural remedies (stretching, hot baths, etc.) but to no avail! It became soooooooo incredibly frustrating and no one seemed to understand what I was going through. Through research on RLS.org I saw that hydrocodone was a possible treatment. I had some left over from some dental work and tried taking 1/2 of a 5mg pill and found my symptoms to ease drastically! Finally, some RELIEF!!!! This got me through finals but I tried not to take it too much for fear of "addiction". This summer I had more dental work done and got 3 more bottles, which I have been using to self medicate the symptoms. I have read up on taking "holidays" from the drug so as not to become addicted and so I try and take breaks from it every now and then (whether it be a week or a day). However, I would feel much more comfortable under the care of a doctor if this is the treatment for me. I know this has the possibility of being a very powerful drug. Honestly I have taken it occasionally in the past for recreational use and so I struggle internally with it being a recreational drug and also a genuine medication for relief of RLS symptoms (1/2 to 3/4 of a 5 mg. pill at night depending on how bad the symptoms are). I think I tend to over analyze almost everything (I also suffer from daily anxiety) and so I worry that taking this isn't good for me. Luckily I am about to get onto a "real" insurance plan so I can see a "real" doctor who specializes in the disorder. I am afraid to tell him I have been using hydrocodone on my own to treat this because I know that so many doctors have such an extreme reaction to the drug. I am open to other treatments as well - I just haven't found any others thus far that have worked.
The doctor I am going to see is recommended by rls.org. Do you think they will freak out if I tell them what I've been doing? Any advice on how I should approach this? Am I over thinking this? I don't want him to think I'm "out to score". That is so far from my intent. I am simply trying to find relief in an educated manner.
I am so glad to find this community because I don't know anyone else who has experienced RLS as severely as I have. Any help would be greatly appreciated! TIA
~ Jaime
Hi, new here - Hydrocodone for treating RLS, advice wanted
Hello and welcome.
1. If your RLS doc freaks out, leave, they all should understand by now that we are willing to try anything that helps, after we reach a certain stage of this torture.
2. Educate yourself well about RLS and the most common meds used. There are sticking notes at the top of the thread, New to RLS. They are often overwhelming, but you need the best educations for 2 reasons.
a. if you know more than the doc, you may have to leave or educate them. Print off the RLS Algorithum, one for you and the doc.
b. With a great RLS education you have already given yourself a wonderful and the best defense you'll likely need all along the way.
most docs do not like to start out with pain meds, as there is a process followed, but who knows your doc may be wiser.
Try to remember this as a rule:
the lowest dose, of the lowest class, in the cleanest form, for the longest time. That is an old rule about medication, but a good one.
Also, your college may, shoud offer you help through the same system any special needs student office uses. Again you may need to educate about RLS, lack of sleep and all that goes with that, but they can be helpful while getting your education. I know the man that runs this program at Texas Tech and after he was my hostage on a plane for a couple of hours he agreed that this should be taken in to consideration for all RLS students. So see if they can help.
Glad you found us and always post as you wish. We're family here, so welcome.
Lynne
1. If your RLS doc freaks out, leave, they all should understand by now that we are willing to try anything that helps, after we reach a certain stage of this torture.
2. Educate yourself well about RLS and the most common meds used. There are sticking notes at the top of the thread, New to RLS. They are often overwhelming, but you need the best educations for 2 reasons.
a. if you know more than the doc, you may have to leave or educate them. Print off the RLS Algorithum, one for you and the doc.
b. With a great RLS education you have already given yourself a wonderful and the best defense you'll likely need all along the way.
most docs do not like to start out with pain meds, as there is a process followed, but who knows your doc may be wiser.
Try to remember this as a rule:
the lowest dose, of the lowest class, in the cleanest form, for the longest time. That is an old rule about medication, but a good one.
Also, your college may, shoud offer you help through the same system any special needs student office uses. Again you may need to educate about RLS, lack of sleep and all that goes with that, but they can be helpful while getting your education. I know the man that runs this program at Texas Tech and after he was my hostage on a plane for a couple of hours he agreed that this should be taken in to consideration for all RLS students. So see if they can help.
Glad you found us and always post as you wish. We're family here, so welcome.
Lynne
Lynne (that's my middle name btw, same spelling 
) -
Thank you for the warm welcome and advice. I am a research freak so I'm all about researching these meds! Unfortunately I do usually know more than the docs I see which I find frustrating. Because of my age they often tend to talk down to me so I feel like I am often stuck between a rock and a hard place.
I do have another question -
I have been reading about people experiencing pain with RLS. I have been having horrible pains on the outsides of my legs (mainly the left leg which experiences the RLS). At first I thought they may have been brought upon by wearing flip flops (ah, Texas summers!) but I have since switched to tennis shoes and although it is not quite as severe, the pains are still there. Could this be related to the RLS?? When present, these pains can become even more agonizing than the normal RLS urges (to move my leg, stretch, etc.)
~ Jaime
) -
Thank you for the warm welcome and advice. I am a research freak so I'm all about researching these meds!
Unfortunately I do usually know more than the docs I see which I find frustrating. Because of my age they often tend to talk down to me so I feel like I am often stuck between a rock and a hard place.
I do have another question -
I have been reading about people experiencing pain with RLS. I have been having horrible pains on the outsides of my legs (mainly the left leg which experiences the RLS). At first I thought they may have been brought upon by wearing flip flops (ah, Texas summers!) but I have since switched to tennis shoes and although it is not quite as severe, the pains are still there. Could this be related to the RLS?? When present, these pains can become even more agonizing than the normal RLS urges (to move my leg, stretch, etc.)
~ Jaime
Hey~
I'm not Lynne, I'm Jan--an old timer on here who just doesn't post much anymore.
I found your message and question this morning and wanted to chime in.
You were greeted by one of our very best, btw.
As far as pain and RLS are concerned, a small percentage of people who have RLS have painful RLS (Lynne is one of those people). I experience pain, also, but not nearly to the extent that Lynne does. So, the answer is, I would suspect that the pain you are experience is probably from your RLS, but I'm not a doc, so I really can't diagnosis. LOL However, I would sure mention this to your doc.
Sometimes, my legs hurt so badly--they are tight, sore and painful and I know it's from my RLs.
I am so sorry you are having to deal with this. RLS is horrible and add the fact that you have to sit through classes. UGH! I can't imagine doing that anymore.
Good luck and, please let us know how you get along.
Jan
I'm not Lynne, I'm Jan--an old timer on here who just doesn't post much anymore.
I found your message and question this morning and wanted to chime in.
You were greeted by one of our very best, btw.
As far as pain and RLS are concerned, a small percentage of people who have RLS have painful RLS (Lynne is one of those people). I experience pain, also, but not nearly to the extent that Lynne does. So, the answer is, I would suspect that the pain you are experience is probably from your RLS, but I'm not a doc, so I really can't diagnosis. LOL However, I would sure mention this to your doc.
Sometimes, my legs hurt so badly--they are tight, sore and painful and I know it's from my RLs.
I am so sorry you are having to deal with this. RLS is horrible and add the fact that you have to sit through classes. UGH! I can't imagine doing that anymore.
Good luck and, please let us know how you get along.
Jan
No one is alone who had friends.
Hi Jan, thanks for chiming in!
I will continue to update my progress in this thread.
I have been trying to put off any meds for as long as possible at night time in order to check on my symptoms (see if they're still there - unfortunately they are). I've found that some nights I have very tight pressure feelings in both of my lower calves. This happened the other night and my fiance and I both found it odd because we really hadn't done anything strenuous that day that would have caused such pain. It is more of a throbbing pain that didn't even go away with hydrocodone. I added some tylenol, herbal rose hip tea and a warm whirlpool bath and was finally able to get some relief combining all of these things.
Oh, I might add in here that I also take .5 - .75mg of Klonopin nightly for anxiety.
On another note, I tried 1 50mg tablet of Tramadol last night (doing the drug holiday thing) and it worked fantastic on my RLS but I experienced insomnia, some anxiety and when I closed my eyes I would see scary visuals. I didn't end up falling asleep until 3am (after taking 1mg Klonopin). Bummed about these side effects since it seemed to work so well and (if I remember correctly) is a non-narcotic pain reliever.
I will continue to update my progress in this thread.
I have been trying to put off any meds for as long as possible at night time in order to check on my symptoms (see if they're still there - unfortunately they are). I've found that some nights I have very tight pressure feelings in both of my lower calves. This happened the other night and my fiance and I both found it odd because we really hadn't done anything strenuous that day that would have caused such pain. It is more of a throbbing pain that didn't even go away with hydrocodone. I added some tylenol, herbal rose hip tea and a warm whirlpool bath and was finally able to get some relief combining all of these things.
Oh, I might add in here that I also take .5 - .75mg of Klonopin nightly for anxiety.
On another note, I tried 1 50mg tablet of Tramadol last night (doing the drug holiday thing) and it worked fantastic on my RLS but I experienced insomnia, some anxiety and when I closed my eyes I would see scary visuals. I didn't end up falling asleep until 3am (after taking 1mg Klonopin). Bummed about these side effects since it seemed to work so well and (if I remember correctly) is a non-narcotic pain reliever.
RLS-- the hospital I work has a policy that states that patients are not considered opioid "tolerant" until they have reached the oxycodone 20 mg dosage per 24hrs. (this equals roughly 4-5 tabs of vicodin per day). I have never seen anyone become "dependent" physically to narcotics by taking 1-2 tabs of vicodin or percocet per day.
I take 10 mg of oxycontin per day and when I "forget" to take it- I only experience RLS symptoms-- no "withdrawal" or "addiction" symptoms. So on that note, I wouldn't worry about it.
Also- if you've found vicodin to be more "recreational" in your mind-- you may benefit from trying another narcotic? You should definitely find a good MD and try and get someone who will partner with you on this endeavor.
I take 10 mg of oxycontin per day and when I "forget" to take it- I only experience RLS symptoms-- no "withdrawal" or "addiction" symptoms. So on that note, I wouldn't worry about it.
Also- if you've found vicodin to be more "recreational" in your mind-- you may benefit from trying another narcotic? You should definitely find a good MD and try and get someone who will partner with you on this endeavor.
Josh
I agree with fidget boy. While trying to find new meds, I had fun with the vicodin. I actually abused it for the nice feeling. I have been on Percocet for 4 months, and have run out. I haven't had the urge to abuse it, and have used more than prescribed daily for extreme foot pain, which it helps immensely. So I am presently out of the Percocet, and I am have no withdrawal symptoms after using if for 4 months.
My doc won't prescribe more than 120 pills a month, so I have 2 weeks to go before I get them back.
I wouldn't be afraid to bring the Mayo Clinic Algorythm to your doc and let him/her know that the Hydrocodone works great for your symptoms.
Good luck, and welcome!
Walter
My doc won't prescribe more than 120 pills a month, so I have 2 weeks to go before I get them back.
I wouldn't be afraid to bring the Mayo Clinic Algorythm to your doc and let him/her know that the Hydrocodone works great for your symptoms.
Good luck, and welcome!
Walter
Hello Jaime!
I am sorry if this sounds weird, but I got a bit happy when reading your post! My name is Juska and I am 20 years old..and my rls is mainly in my left leg as well. You're like the first person that I have seen that seems a lot like myself. I know how you feel about the doctors talking down to you and what not...I am no stranger to that as well, seeing as though I am just 20. Vicodin seems to be the only thing that works for me as well. I have been on it for a few years now. Currently I am taking about 6 a day (am prescribed to take up to 6 a day). During my last doctors visit, my neurologist said he might want to put me on either methadone or morphine because he is worried about all the tylonol in the vicodin. So but yeah, I know how you feel. You have to kind of go into the doctors office armed with information. Stand up for yourself and dont settle for a doctor who doesnt listen to you. It was hard for me because I am such a quiet person..but I went in with a stack of papers that I had printed and all these questions I wanted answered. Yeah
Sorry, I am really really tired right now. I hope this might help a bit.
I am sorry if this sounds weird, but I got a bit happy when reading your post! My name is Juska and I am 20 years old..and my rls is mainly in my left leg as well. You're like the first person that I have seen that seems a lot like myself. I know how you feel about the doctors talking down to you and what not...I am no stranger to that as well, seeing as though I am just 20. Vicodin seems to be the only thing that works for me as well. I have been on it for a few years now. Currently I am taking about 6 a day (am prescribed to take up to 6 a day). During my last doctors visit, my neurologist said he might want to put me on either methadone or morphine because he is worried about all the tylonol in the vicodin. So but yeah, I know how you feel. You have to kind of go into the doctors office armed with information. Stand up for yourself and dont settle for a doctor who doesnt listen to you. It was hard for me because I am such a quiet person..but I went in with a stack of papers that I had printed and all these questions I wanted answered. Yeah
Sorry, I am really really tired right now. I hope this might help a bit.Everyone is different, not every medication works the same for everyone.
Hi Juska,
Nice to see someone who can relate so well!
I am very frustrated today because I found out I was denied insurance coverage due to high blood pressure.
Last night I took my usual dose of hydrocodone but I still couldn't go to sleep until about 12:30 even though I was really tired around 10pm.
I slept 9+ hrs (didn't have class this morning) but was really tired throughout the day, even after drinking green tea (I'm pretty sensitive to caffeine). It dawned on me then that maybe the sleep I'm getting is not good quality.
My right calf has been aching today, even when walking and driving. Not sure what's up with this, if it's related to the RLS or not. Ibuprofen didn't help. It is so frustrating and my fiance told me to go to CareNow but I tried to explain to him that they have no clue when it comes to this kind of stuff and probably aren't any better than the school health clinic. I feel so moody and it's making us get into fights which I hate.
Now I have to call a doctor who knows about RLS to see what kind of cash price I can get. Looks like a sleep study is out. Ugh, I am so frustrated right now I just feel like crying.
Nice to see someone who can relate so well!
I am very frustrated today because I found out I was denied insurance coverage due to high blood pressure.
Last night I took my usual dose of hydrocodone but I still couldn't go to sleep until about 12:30 even though I was really tired around 10pm.
I slept 9+ hrs (didn't have class this morning) but was really tired throughout the day, even after drinking green tea (I'm pretty sensitive to caffeine). It dawned on me then that maybe the sleep I'm getting is not good quality.
My right calf has been aching today, even when walking and driving. Not sure what's up with this, if it's related to the RLS or not. Ibuprofen didn't help. It is so frustrating and my fiance told me to go to CareNow but I tried to explain to him that they have no clue when it comes to this kind of stuff and probably aren't any better than the school health clinic. I feel so moody and it's making us get into fights which I hate.
Now I have to call a doctor who knows about RLS to see what kind of cash price I can get. Looks like a sleep study is out. Ugh, I am so frustrated right now I just feel like crying.
-
susieandirenes
- Posts: 28
- Joined: Thu Jul 27, 2006 7:00 pm
- Location: Cinncinnati
Go ahead and cry! You deserve to do it.
After 40 or so years of dealing with rls I've reached a point where augmentation is wreaking me. I have been online here and not only found great information, but honestly, others who knew exactly what I am going through. One night while reading some responses to my posts, I just sat at the computer and cried. My husband came in to see what was wrong and was surprised at my tears. I think it was the first time he really realized how tough this is for me.
Read all of these posts that you can find the time to read.
Peace to you.
After 40 or so years of dealing with rls I've reached a point where augmentation is wreaking me. I have been online here and not only found great information, but honestly, others who knew exactly what I am going through. One night while reading some responses to my posts, I just sat at the computer and cried. My husband came in to see what was wrong and was surprised at my tears. I think it was the first time he really realized how tough this is for me.
Read all of these posts that you can find the time to read.
Peace to you.
Juska, if you take either, it will be a lot better for you and your liver. I was at a point once, where I would stop caring about my liver, and take 13, or 14, or 15 5/500's... It's not some place you want to end up.
Morphine is one of the most addictive things out there... so you want to be careful about it.. You can ask him about MS Contin, a time released version, so you don't have to deal with a lot of the addictive potential of immediate release, standard pills. Plus a time release means less pills to take, and I think they are 12 hours, so maybe only 2 a day or so, once you find an effective dose..
Methadone is also a good choice. Take that if all else fails for you. It's cheap and it lasts for a long time. I've recently started looking into getting it for myself actually.. Though that may be a long, hard road.. since my doc won't prescribe it.. I may end up at some expensive clinic instead..
Good luck, get off the tylenol crap ASAP
edit: you can also ask about Buprenorphine (Suboxone, Subutex)
Morphine is one of the most addictive things out there... so you want to be careful about it.. You can ask him about MS Contin, a time released version, so you don't have to deal with a lot of the addictive potential of immediate release, standard pills. Plus a time release means less pills to take, and I think they are 12 hours, so maybe only 2 a day or so, once you find an effective dose..
Methadone is also a good choice. Take that if all else fails for you. It's cheap and it lasts for a long time. I've recently started looking into getting it for myself actually.. Though that may be a long, hard road.. since my doc won't prescribe it.. I may end up at some expensive clinic instead..
Good luck, get off the tylenol crap ASAP
edit: you can also ask about Buprenorphine (Suboxone, Subutex)
Hi - new here - Hydrocodone for treating RLS, advise wanted
Hi RLS 83 and welcome to this group. I have been out of town for the past two weeks and just read your posts. I am so sorry for what you are going through but you received some good advise.
I have had rls for 20+ yrs and mine is painful too. I do take clonazapem and mirapex and both do work for me. I know what works for one may not always work for another. Like you said that you have been on a cocktail of meds and so far nothing is working. I agree with what Lynne said that if the dr gets freaked out find another one. Your quality of life is important.
I do not know if you read the forum New to RLS there is a sticky post "Managing RLS" Mayo Clinic Algorithm has an excellent article. If you have not read it, please do and if you are able to, print it out and bring it to your dr.
Believe me we all have been down this road and if you feel like crying do it. I have many of times and this group has been there for me all the way and we will be there for you too whenever you need us.
I hope that you find the relief that you so deserve. Please keep us posted on how you are doing.
I have had rls for 20+ yrs and mine is painful too. I do take clonazapem and mirapex and both do work for me. I know what works for one may not always work for another. Like you said that you have been on a cocktail of meds and so far nothing is working. I agree with what Lynne said that if the dr gets freaked out find another one. Your quality of life is important.
I do not know if you read the forum New to RLS there is a sticky post "Managing RLS" Mayo Clinic Algorithm has an excellent article. If you have not read it, please do and if you are able to, print it out and bring it to your dr.
Believe me we all have been down this road and if you feel like crying do it. I have many of times and this group has been there for me all the way and we will be there for you too whenever you need us.
I hope that you find the relief that you so deserve. Please keep us posted on how you are doing.
Charlene
Taking one day at a time
Taking one day at a time
It's kinda interesting, the stigma involved with management of RLS or other pain issues, generally speaking...
I totally understand the fear of your dr. thinking you are "trying to score"...
I remember some minor surgery I had a couple years ago and I asked the dr. for some tylenol 3's and he grudgingly agreed and said something about wondering what the street value was on 20 tylenol 3's... I took it as a joke, but really...
It was the same thing when I mentioned to my primary care doc that opiates often used as part of the RLS management plan... he laughed, said that was probably not right as there was so much addiction potential. I told him there was no more potential there than there was with the Klonipin...
I guess I am getting at that I feel like some common criminal just for asking for some pain relief...
I totally understand the fear of your dr. thinking you are "trying to score"...
I remember some minor surgery I had a couple years ago and I asked the dr. for some tylenol 3's and he grudgingly agreed and said something about wondering what the street value was on 20 tylenol 3's... I took it as a joke, but really...
It was the same thing when I mentioned to my primary care doc that opiates often used as part of the RLS management plan... he laughed, said that was probably not right as there was so much addiction potential. I told him there was no more potential there than there was with the Klonipin...
I guess I am getting at that I feel like some common criminal just for asking for some pain relief...
Catfish
***
If you see the Buddha on the road, kill him...
***
If you see the Buddha on the road, kill him...
I would print out some information from the foundation's website that lists the recommended medications so that your dr. can see for himself that opiates are on the list. Go in there armed with as much information as possible. Be succinct and get your point accross in a brief and sincere way and see what happens. Just don't go in there sounding like a flake and hope to get your dr. to understand you need the hydrocodone. As long as you sound like you know what you're talking about and have the hard copy information to back you up - then you should atl east be able to expect that your dr. listens to you and tries to work with you. And like everyone else says - If he wont' listen to you or work with you - get rid of him. and TELL HIM - I really need a dr who will take me seriously and work with me because i"m suffering and I don't feel like that's happening so I think I need to find someone who will do that. - Let them know why you are leaving!
Good Luck. I'm in the same boat. nothing works for me but strong opiates and I have to feel like a crack head trying to get them. it's not fair.
Good Luck. I'm in the same boat. nothing works for me but strong opiates and I have to feel like a crack head trying to get them. it's not fair.
The light of a good character surpasseth the light of the sun
I know when I printed out the piece I found on methadone, on Pubmed, my doc pretty much handed it over. You should find out what a source they trust is and show them something they feel ok about.
Should we have to do that? No. But it's better than the possibility of no meds that could help, at all. At least in my book.
Should we have to do that? No. But it's better than the possibility of no meds that could help, at all. At least in my book.