Please help me!

Juska · Post by **Juska** » Thu Apr 19, 2007 8:56 am

Hi, Im Juska and new to the boards and this whole site. I am 20 years old and was officially dianosed with RLS a little over a year ago I think now. But really, I have been experiencing this horrible thing called RLS since I was 16. Heh, its embarassing but I also cried when reading through the posts and everything here, because I can relate to everything so well. The reason for me getting so emotional is because no one really believes me when I tell them what I am going through, nor do they really seem to care.

I have been on so many different medications for my RLS, including mirpex (sp?) which a lot of you seemed to have been on as all, that didnt work though, along with almost everything else they have given me. I am currently taking vicodin at night for my RLS, they are 5mgs of hydrocodone each I suppose, and I take 1 and a half at night, and they are the only thing that really works for me. But the thing is that I feel so bad taking it because everyone says that I dont really need it, they say that I am making up my pain and calling me an addict because they said that narcotic pain killers arent usually perscribed to people with RLS. I dont know what to do, I wish to god that I didnt even have RLS, or that at the very least I could take a friggin asprin and it would go away. They dont understand that I have been more than willing to take other things, that I have but they didnt work..they didnt even help in the slightest. Im sorry the only thing that works for me is a damn narcotic pain killer, but at the same time I dont feel I should have to apologize. I dont know what to do.

I am having major issues with my mother. She has RLS as well. And for the past while I have been taking 2 and a half pills of vicodin a day because my legs bother me all day and night (mind you I am only perscribed to take 1 and a half). So I take one when I wake up, my half about the middle of the day, and the other one when I lay down to goto sleep. But even that isnt enough to allow me to have a normal day, I still experience sever pain but am not "allowed" to take any more. She says that that is even a problem, in her own words she said "There is absolutely no reason why you should be taking 2 and a half pills a day, I deal with it so, you can too". I dont know what to do! My mom is a drug and alcohol counselor and I think she is too quick to write me off as one of her friggin patients. She doesnt understand that I am not like her, that my pain and the amount of it is different from hers. She even says that hers is "more painful" and so I have no real reason to "*****" about my pain because if she can deal with it, I should be able to deal with it as well (you have no idea how much that annoys me to no end) . But I cant, I'm losing my mind. RLS is ruining my life. My sleeping patterns and eveything has been messed up for years. I never feel like doing anything and I am quick to snap at anyone And god help you if you wake me up, that absolutely angers me to no end. And everyone, my friends and family dont understand whats going on with me. I dont know what to do any more.

It seems that a lot of people with RLS have it throughout their legs, mine has always just been in my knees. Ive had all kinds of tests done, including vials and vials of blood taken for tests and they all come back with me being fine. Lately I've been thinking of taking a hammer to my knees.

I feel all alone in this. Even my own mother who has RLS doesnt even understand what I am going through. I am afraid to goto the doctors because I need some real pain releif, and I am afraid they wont believe that I am really in pain and will deny me from taking any more pain killers. I dont even want to live any more. This is ruining everything in my life. I dread waking up in the morning because I know how the day will go.

Can anyone help at all with anything? I really dont know what to do. :cry:

ray · Post by **ray** » Thu Apr 19, 2007 1:21 pm

Hey Juska,

let me just say that I'm sorry you have this thing and at such a young age. No, you are not a drug addict looking for drugs, like many of us things like hyrdrocodone are the only things that work. I'm sure a few others will chime in with some direction but I'd have your mom and your doctor take a look at this website and something else called the Mayo Algorythm. It lists the different drugs that help RLS and the dosages. You can print it out if you need to and show it to your mom or Dr.

I'm not a DR. but I will say that if you have RLS 24 hours a day the amount your now taking seems low. Do NOT feel guilty for having RLS or needing more medication. Your old enough to make your own appointment with a Dr. and discuss this. Also on this site you will find links to Dr's by state are familiar with RLS and can help.

Hang in there....You need to get pro-active though and get the help you need.

Again..I'm sorry you feel this way and that you have this crazy thing. There's LOTS of great folks on this board that will help you, I know because they have helped me.

Ray

SquirmingSusan · Post by **SquirmingSusan** » Thu Apr 19, 2007 6:46 pm

Oh, Juska, I think we can all relate to the feeling that no one understands what we're going through. But we do understand, in this forum. I'm so sorry that you're going through this at such a young age.

The first thing to do is to arm yourself with knowledge. Check out the Mayo Clinic Algorithm. There's a link to it in one of the sticky posts in the "New to RLS" forum. It talks about appropriate meds to treat RLS, including opioids like Vicodin. Many us us have tried everything else, and have only found relief with meds like Vicodin, oxycodone, or methadone.

It's right there in the Mayo Clinic Algorithm, and yet I've had several doctors tell me that narcotics are not appropriate treatment for RLS. Even my sleep doctor wouldn't give me enough Vicodins to actually relieve my symptoms. (I fired him.)

Please don't feel bad that the only thing that works for you is the Vicodin! When used to treat pain or RLS symptoms, the opioids are very safe. You may build some tolerance to the med, but that is not the same as addiction. Addiction is rare when the meds are used properly. But some people just get hysterical when you mention that you are using those drugs. Sounds like your mother is one of them. :roll:

Hang in there. You've found something that gives you relief, now you just need to advocate for youself in getting enough of that med. Please stop feeling bad about it.

Susan

D4 · Post by D4 » Thu Apr 19, 2007 10:56 pm

Juska, I'm so sorry that you have this at such a young age.

I haven't found the right combination of meds that works for me, but Vicodin is the one med that I know helps me. I just need the right 'cocktail' of meds and haven't found it yet.

Sleep deprivation is horrible and can really mess your mind up. It's no wonder you feel like you do. I recently realized the poor quality of my life was depressing me so I started seeing a psychologist. It has helped some. Is there anyone you can talk to?

This is the 'Rodney Dangerfield' of disorders. It doesn't get respect. Other people can say they had a bad night sleep, but they just don't get what it's like when every night is like that. You will find understanding and compassionate people on this forum, so post whenever you want.

I agree that you and your mom should both read the Mayo algorithm. It will also show her that Mayo has defined different levels of RLS. Not everyone has it to the same degree, so what works for one person (your Mom) may not be enough for someone else (you and me).

If you're taking Vicodin during the day, do you take it at school? If so, are you following all the school rules for medicines? My youngest graduated from high school last year and her school had a zero tolerance for any kind of medicine. Kids couldn't even have Tylenol with them or they would be suspended. You had to have a doctor note for anything and it had to be stored in the nurse's office and dispensed by the nurse. I'm only mentioning this because if you take it at school, I don't want you getting in trouble.

You have it rough with your mom not understanding that you need more Vicodin than she thinks you do. So unfortunately you don't have your mom's support in telling the doctor you a higher dosage.

If you're taking more than you're prescribed, you must be running out of your drugs sooner than you should. How are you handling that? I'd suggest talking to your doctor or his nurse about your need for a higher dosage before you run out. If your doctor thinks your abusing it, he will probably be less likely to write your prescriptions. You can read other posts here where doctors accuse people of being drug seekers. Also, with your age, he might worry that you could be sharing/selling the additional dose. (Believe me, I don't think for a minute that you'd do that, but once a doctor gets that in his head, they might not write any more prescriptions for you and then you're really in a mess.)

What kind of doctor are you seeing? Many of us see a neurologist.

I wish you the best.
Diane

Juska · Post by **Juska** » Fri Apr 20, 2007 12:08 am

I went college, and at my college there was no problem with it if it was a perscription in my name. I dont goto college any more through, or right now anyways because of my lack of sleep and not wanting to get up in the morning.

I do often run out of my perscription way early. My mom is perscribed to take 4 at night if needed. So i end up taking 1 from her.

I have switched between a lot of doctors because they dont understand how to handle whats going on with me. I guess I see a "regular" doctor or whatever. However, after going through a lot of these threads and everything it seems that a lot of people are seeing a neurologist, ive never thought to see one. But now I am thinking I should.

Juska · Post by **Juska** » Fri Apr 20, 2007 2:04 am

I also read a lot of other threads where it said stuff about what can make your rls worse. I also have allergys and for a long time I took benedryl and my rls always got worse but it took me a while to figure out that the benedryl made it worse. Also tylonol pm, that always made my legs go crazy..so now I refuse to take those meds. I am also on an anti-depressant called celexa and I read on another site that a lot of anti-depressants made rls worse and mine was listed as one of them. but i am afraid to talk to my doctor about my celexa too because if i even miss one day of it, i get these horrible head rushes that happen about every 10 seconds and i have to lay down the whole time until i can take my pill again. i learned my lesson with that when i forgot to call in to get a refil and had to wait days laying in bed with headrushes and feeling phisically ill. that has happened a few times with me. so i wonder if she switches me to a different anti-depressant if ill just feel horrible because the old one isnt in my system. i hate being reliant on pills.

becat · Post by **becat** » Fri Apr 20, 2007 2:16 am

HI Juska,
Welcome to the board.

I have to agree with D4 on this one, you need to talk to your doctor about helping you.

I would not take the meds from your mom, your setting yourself up for trouble, both with her and your doc......not to mention that your mom could be in trouble for not controlling her own meds..

This is not easy for many of us and your in the right place to learn so much from the people on this board. Awesome group we have here.

I have a wonderful friend here that taught me long ago that we can't compare pain. I can't stub my toe and expect that you know how it feels, so don't try to compare your RLS to your moms, and hope mom learns the same.

She is looking out for you. I know it's hard to see that, but she is. Your going to be the one to fix this with your doctor. Your going to have to be brave, educated, and ready to talk the truth.

It's not fair, your so very young, breaks my heart for you. BUT Hope lives in these threads. Again agree life just looks different without sleep and some control.
Your reading and that is great for your own defense.

And changing meds can be awful, but there is a way. Most of the meds mentioned around here have to be stepped off of. Cold turkey is not really a good idea, so again, talk to the doctor about changing your meds. and make sure you come off of something the right way.

Hang in there and welcome to the board. Keep reading we'll keep posting back. Remember that hope is here and lives.
Lynne

Juska · Post by **Juska** » Fri Apr 20, 2007 3:09 am

I am trying. Ive gotten to the point where I am angry now. I am finding out for myself everything that I can about RLS. I just made a doctors app for this wend and Im going to have a long talk with my doctor and I am going in armed with information. I am also going to ask her if she can refer me to a neurologist. I cant live like this any more, I'm going to fight to get the treatment that I need and deserve. No one deserves to live like this, I wouldnt even wish this upon my worst enemy.

Post by **ViewsAskew** » Fri Apr 20, 2007 3:15 am

You go, girl.

Honestly, getting educated and printing out that stuff is the best thing you can do. You are so right - you deserve to get the right treatment.

While you are looking for stuff, make sure you go to the "sticky" posts in each section. They have a lot of info, including some non-pharma stuff that helps some people. You already know that many things can make it worse - including the anti-depressants. Consider that it's a possibility that part of the reason you feel badly is because you aren't sleeping. While there may be other reasons, some of us have found that we were depressed because we were tired. When we get sleep? We are like different people.

Glad you found the site. I hope you find what you need here.

Juska · Post by **Juska** » Fri Apr 20, 2007 3:18 am

Oh, I've been dianosed with depression when I was young, or younger. It was quite a long time ago, before I had any syntoms of rls at all, but my depression is so much worse when going through all of this. I was concered about my current anti-depressant because i thought it might be making my rls worse.

Post by **ViewsAskew** » Fri Apr 20, 2007 3:41 am

It could be making it worse, Juska. I'd highly recommend getting a book called RLS (snappy title, huh?) by Buchfurer, Hening and Kushida. It lists all the treatments to try, the ones to avoid, and the antidepressants that will worsen RLS and a few that tend not to worsen it. This will be so helpful to you.

What's really weird is that while most antidepressants tend to worsen RLS and most people who take them have at least one they try that is awful, sometimes they find one that no one else can take, but they can. So, one option is to cycle through them to find one that works for both. But, some people just don't want to do that. They find one that works for depression and then just take more RLS drugs to prevent the RLS. Only you and your doc can determine what the best strategy is for you.

Juska · Post by **Juska** » Fri Apr 20, 2007 4:44 am

Thank you, ill go see if i can find that book online some where now

SquirmingSusan · Post by **SquirmingSusan** » Fri Apr 20, 2007 5:05 am

Juska, for the book you can go to Dr. Buchfuhrer's website at: http://www.rlshelp.org

As for the antidepressants, please don't panic about your particular med making RLS worse. You may need to switch meds, or you may need to just use more RLS meds to cover the symptoms, like Ann said.

I take antidepressants as well, and it was a long, long process to find one that agreed with me and actually made me feel good. So switching to a different one isn't an easy thing.

Also, if you have painful RLS symptoms, the antidepressants can really help with pain.

It's all stuff to talk with your doctor about, and the more you know the better care you'll get. And if your doctor won't listen to you or read the Mayo Clinic Algorithm, there are other doctors who will.

Best wishes with it. You'll find your way through this and will be able to live your life again. Really. It just might take some time.

Susan

Neco · Post by **Neco** » Fri Apr 20, 2007 5:55 am

Don't give in to the criticism Juska. I'm 24 and have been taking painkillers since my original diagnosis a few years ago.

Although I don't have to deal with constant criticism, it still does hang over my head sometimes too. I actually have a harder time getting people to accept that I can't eat certain things (unless I feel like it) due to my IBS.. They always try to make comparisons "If you can eat this, then you can eat that".. So I kinda know how it is to deal with your mother..

At any rate, you have nothing to be ashamed of, and the important thing is to present yourself as confident and authoritative when discussing it with others. They don't know what is right for your body and what works for you, because it is your body, not theirs.. Something people should be reminded of imho.

Find a doctor who will listen to you for sure. Explain everything to them, especially about it messing up your sleep pattern and affecting other areas of your life. Sadly, you may have to go through several doctors before you find one who will listen.

Also, one alternative Doctors are more relaxed in prescribing is Ultram (tramadol), because it is not a controlled substance and for some stupid reason everyone thinks it's "safer" than stronger painkillers. I am taking tramadol right now currently myself, after fighting a losing battle with narcotic addiction, but it works and that's what is important.

If you do decide to try Tramadol and don't have an issue getting it, PLEASE be careful.. Especially if you are going to take anti-depressants.. You drastically increase your risk of seizure when taking them together. I had a seizure the other month due to this problem, so I just stopped taking them - which sucked because the one I was on was really helping.

In any case, Tramadol is something to look at as a possibility if you are getting stone walled in any way. Hope you find a good doctor.

eliza · Post by **eliza** » Fri Apr 20, 2007 3:26 pm

Hi Juska,

I'm so sorry you've got this. It's a horrid disease.

Try asking your doc if he/she can find you a neurologist who has a special interest in RLS. Mine did that for me.

Previously I'd gone to a top neurologist in the region, but she was concerned about my brain function at the time and even forgot to write down that I had RLS. I thought it had been a major complaint during my appointment.

Even a lot of neurologists don't really understand RLS. They may just hand you a pack of Requip. It was my general doc who tested me for ferritan and has been the most help - now she feels I'm beyond her expertise - so she researched and found the right neurologist for me.

Maybe someone on this board can even send you a PM recommending a neurologist they go to in your area.

Just some thoughts - have hope - there’s a combination of meds out there for you. The trick is being informed and getting to someone who "gets it."

Eliza