Please Help

[keana]

I am a 24/7 RLS sufferer I am taking 4mg. of requip and 2mg. of clonazapam this is no longer helping and my symptoms have progressed from just my legs to now both arms mainly my left side. Also I have deep pain in both calves I do not know if this is RLS but hell it could be.
I was prescribed Norco for a sugery I had several moths ago and it was a miracle my RLS was gone. So I researched and found that this is a treatment for some with RLS. I went to the Dr. so excited about getting this drug and having my life back I explained that while I was taking this I could sit and play with my 4 kids again, hell I could finally sit and relax, I had a 15 day glimpse of what a normal life was like. Well she ripped up the Mayo Clinic Algoithm and said these drugs are addictive ect..My hope was destroyed. She said I was just depressed well yeah I am but it is because I have no life I cannot sleep more than 3-4 hrs. I've lost friends because of this no one understands I've had to quit school because I cannot concentrate I've lost my job also. I feel so hopeless.
So I stepped outside the confines of my HMO and have a appt. with a new DR. this Tues. This is where I need your help. I want to ask her for the Norco but I'm afraid to come off like a drug addict wich I am NOT! Am I asking for too much 10mg. 3-4 times day? I have found if you come in asking for a certain narcotic you are deamed a drug abuser, I just want my life back. I have tried other drugs Neurontin included but nothing has helped like the Norco did.
Please advise me on how to approach her, she is my last hope. I have never been on miramax and I don't even want to try it because my symptoms are so severe and I have suffered the side affects of requip for years, I just want what I know will help me.
Please respond I need not only advice but friends who can relate to my suffering. Sorry this is so long but I'm just a wreck.

[Polar Bear]

Hi Keana

I have rls 24/7 and have been a sufferer for over 30 years. I take 3mg requip throughout the 24 hours and supplement with tramadol (Ultram) in the evening followed by a sleep aid around midnight. This helps a great deal. And I am sorry the requip did not work for you.

I cannot believe that a doc tore up the Mayo Algorithm. I took this to my GP and he uses this as a guideline. I'm sure you felt like punching doc on the nose !!!

Yes, lack of sleep, rls symptoms.... anyone would feel depressed ... until my treatment worked, I felt depressed, also anxious, tired, crabby etc. etc. etc.

Good luck with new doc. I have been lucky with my doc and don't know quite what would be the best way to approach new doc to get a narcotic.

Have you tried tramadol, which is not a true opiate, and so it easier to have prescribed.

You will be telling your story as you did in your post here - what worked and what did not. And I would not give up on the Algorithm. All docs will not be like your last one.
Others will certainly have more thorough advice as to how to go about this.

[keana]

Thank you for you response. Yes I have tried tramadol and it did not work for me I have also tried Darvoset and that was awful.
I have tried to get a sleep aid for 22 yrs. but my Docs. say NO WAY thats addictive ect.. I have exsausted all of the over the counter sleep aids they don't help at all. I do take melatonin 10mg. for 2 months. then a week break (thats what the directions on the bottle say) so I do it. I cant say that it helps but it may be whats allowing me to get the 3-4 hrs. of sleep that I do get.
Again thank you for listening I fel so Isolated with this RLS.

[SquirmingSusan]

Hi Keana. Welcome to the forum.

First let me tell you that no doctor is EVER your last hope. Some of us have changed doctors and changed doctors and have finally found one who is willing to work with us. Some of us haven't, so we fly somewhere where there is a doctor who is known to be helpful. It's frustrating, and it's hard to deal with when we're already at our wit's end. Also remember that your doctor works for you and you have the right to fire a doctor who is not helpful. Sometimes even changing doctors within the same clinic can make a difference. But every HMO has many, many doctors. You may want to try a sleep doctor or a neurologist. You should be able to find one who is covered by your HMO.

The next thing is to never, ever just ask for narcotics. We here all know they work and are NOT addictive when used to treat pain or RLS, except in a tiny minority of patients when they over-treat their symptoms. The bigger concern is that the government cracks down on doctors who prescribe a lot of painkillers. But I digress...

Like PB said, just go in there and tell the doctor exactly what you told us. Tell him/her that your symptoms are horrible, they are ruining your life, and that the only time you've had relief is after surgery when you were prescribe the Norco. Tell her what you've tried, and then ask if there is anything else available that might help you. Be open to trying different things within reason. If she won't prescribe what works, ask for a referral to a pain clinic or sleep specialist within your HMO. You may even want to ask about tramadol, which works like hydrocodone, but isn't controlled, so it's a lot easier to get. And it can help with energy and depression a bit.

Do bring the Mayo Clinic Algorithm again. Most doctors won't tear it up. I haven't found one who is willing to read it yet, but at least it's worth a try. In another section of the message board we have an ongoing thread about some of the outrageous things that doctors have told us. You're not alone here. Sadly doctor ignorance seems to be an epidemic. But we all know and understand what you're going through with this.

Hang in there. There's hope, there's relief. It might take some time, but you'll get there.

[Neco]

I am so mad...

This doctor actually tore up... in front of you - The Mayo Algorithm ???

If so I STRONGLY urge you to contact your state medical board and lodge a complaint. That is downright rude and unprofessional. It is one thing to say to a patient that you are not interested in reading it, or that you have other reasons for not wanting to see it, but to rip it up in front of a patient?

No.. that demands justice.. Also if this is the same doctor who refuses to prescribe you even anything and keeps using the same excuse about addiction, then you need to tell them about that too.

Also if your HMO has a complaint system where you can complain about doctors in their network, I would lodge a complaint with them as well. This kind of behavior goes beyond the pale, that was outright derogatory and negligent.

Don't give up hope. You have to pull through and get yourself to as many doctors as you can. I agree you shouldn't just outright ask for opiates.. You might do something like this though..

When you see this doctor, take a copy of the Mayo Algorithm with you... If you still have the ripped up one, you might even take that and tell them what this other doctor did and why and what they said to you..

You can start off like so... "I have been having a horrible time and my symptoms are getting worse, and my medication is no longer helping. But I noticed when I had surgery that my RLS got better, and when I read the Mayo Algorithm I found out that the Norco they gave me was on the recommended list of medication and when I took it to show my doctor and ask about switching, she tore it up right in front of me and lectured me about addictive medication! I feel so helpless now and nobody seems to believe how much pain I'm in. She told me I was just depressed, you'd be depressed too if you had to live like this!"

If that doesn't at least elicit a pensive thinking kind of look, or an automatic comforting of some sort, then I would begin asking questions about the quality of doctors in your area..


Also.. There have been reports that Requip and Mirapex actually cause leg pain in some patients, and its also possible you might be augmenting.. Make sure you tell this doctor every medication you have been given. If they don't help you, you HAVE to keep looking.. Maybe even go to an urgent care center or Emergency Room and try and get some help.. If you are ever put in that situation, make sure you tell them how this other doctor treated you and make sure you make it clear you are in pain.

[woodsie357]

I would agree with zach. I can't believe she did that, that's horrifying.

I will say the best thing to do, that's helped me is to bring a few lists in. One list of every med you've been on even over the counter with the dose you took best you can remember. And how well it worked or didn't work, what side effects you had with it. Second bring a record of your sleep pattern. When you went to bed how long before you had to get out of bed, when you were able to go back to bed. Include how many times you were waken in the night and when you got up for the day. Third write a list of consequences for your sleeplessness. Most of us have bad memories and several stories or examples of it.

I myself have never gone in asking for a specific medicine, I've just let them see what I've already tried. I'm very sorry that they seem to be so afraid of drug abusers. They are terrified of it. I personally don't understand why they are. The more info they have on what you've tried, whats happened to you, they should be more willing to help you. That said they are still afraid of the stuff that works.

I don't know if your depressed, or just stressed out from RLS. I suspect if your RLS was treated you wouldn't be depressed. I think it's important to let them know in the past when your RLS was under control you felt happy energetic, or how ever you did feel, and since then whats changed for you.

My thoughts and prayers are with you. Take one day at a time. Keep your chin up.

[Neco]

I don't understand the fear of addiction either..

I mean we are a relatively small minority of the RLS community, who experiences the worst RLS has to offer, and require very strong medication. Even in that minority out of everyone here I am the only recovering addict.

Statistically they should be more afraid of giving painkillers to people with broken body parts than to us, by their logic

[mackjergens]

Try to explain, that you are not depressed, but you are sleep deprived, due to your rls, tell the dr how many hours of sleep you get each night and that your mind/ body is just becoming totally worn out . And that you simply can not continue to take care of your family and life without proper sleep!

FiRST read and educate yourself about the pros/cons of RLS, on www.rlshelp.org you will find a list of meds used in treating rls, and the effects of those meds,such as so many of the parkinson meds, such as mirapex and requip will cause you to have rebound and augumentation, which means your rls will happen earlier and become more intense. I have read on this message board and other rls message boards, many people that were taking these meds, that their rls became worse and their Dr just kept increasing the dose of meds, finally when the Dr took them off or changed meds, they discovered their rls went back to what was normal in the beginning. so they discovered that parkinson meds can cause augumention and rebound. I believe all that info is listed within the info about meds.
you will also find that the narcotic pain meds are listed as used in treating rls.

Also please be aware that many otc meds such as tylenol PM and other pm meds usually make rls reallllllly so much worse. other meds known to make rls worse are cold meds, antihistimines, and antidepressants. you will find all that info listed also.

There are some foods, such as ice cream that can make rls worse in some RLSer's. Soooo much to learn. just read and print out anything that you think will be helpful to you.
I keep a list of the meds to help and the meds that can cause rls to worsen at all times with me, and if the Dr prescribes a med for another problem I always check my list to make sure its not a med that will increase my rls. I have saved myself many nights of horrid rls by saying NO thanks to some prescription meds, there are usually another med that can be substituded.

As you just discovered most Drs know very little about rls, so you must know all there is to know about rls, if not you will end up trying some med that is actually known to make it worse. There are many drs who will prescibe Sinemet(carbo-lev) which used to be the one med suggested for rls, but is now known to really be more harmful to most rlser's. you will find that info on the wwwrlshelp.org web site also.

I am one that takes pain meds for my rls and do NOT have painful rls, just the creepy crawlies feelings that make me walk the floor all night, I discovered pain meds thru dental work and finally convienced my dr to let me take it rather than the parkinson meds. I was lucky as he didnt like the Parkinson meds. i have been taking hydrocodone 7.5 for well over 8 yrs and have NO addiction problem, I also have ultram(tramadol) and usually the tramadol will help IF I take it before the rls kicks in, but if my rls strong that night, I always end up taking the hydrocodone.

just try not to sound like a know it all, but do let him know you have extensive knowledge about rls, mention the mayo clinic info, and ask if he/she would like to read it, as you found it full of great info.
But as others have said be careful asking for the narcotics, because most drs are very worried when someone comes straight out and ask for a controled substance.

Again read read read.
www.rlshelp.org
www.wemove.org
www.mayoclinic.com
www.rls.org

[ViewsAskew]

Hi Keana - crud, I just lost a LOOOOOONG post. Here goes again.

1. Buy this book: Clinical Managment of Restless Legs by Hening, Buchfurer and Lee. It is written for Primary Care doctors BY leading RLS doctors. It can be very helpful to take in with you. And, it can't be ripped up so easily! You won't get it before the appointment, most likely, so in the meantime, any reading here is great - sticky posts especially.

2. Read in this threadabout augmentation - see if this is what is happening. Your dose of Requip is very high and I'm guessing you've been told to increase it to resolve the RLS which keeps getting worse. But, it may be the drug causing it.

3. Do a search on Requip and leg pain. It's a known side effect. Take that printout to the doctor. Lots of people here have had it, but I seem to remember it's listed on other websites as a potential problem. If you do have augmentation and this leg pain is caused by Requip, you need to get off of it!

4. Take a friend, parent, partner, or other close loved one with you to the doctor. They can speak with you, for you, and back you up. They can ask questions, and help you make sure you capitalize on your opportunities to be heard and to hear what the doctor says.

5. Write to Dr Buchfurer - rlshelp.org is the website where you can see the letters people have written to him and see his responses. Ask him what you should do from a medication perspective.

6. Read the book I suggested you get before you see the doc. Get familiar with the options. Norco may be a good option...but there may be better ones for a variety of reasons, including helping limit addiction chances. For example, some opioids last much longer in your system, so work for as long as 12 hours; others only work for 3-4. If you only take something once or twice a day, you run less risk of dependence. Also, some of these meds cause less "high" and so help minimize risk of addiction. Opioids work well for me, so I think they are worth considering, but there ARE potential hazards. Be sure to get a big picture. If you sound educated about it rather than desperate and signal that you want to minimize your risks, you will have a better chance.

7. You probably won't have the book by the time you go, but you can take your support person and the letter from Dr B. I'd approach her like this: You don't know me and you don't have any reason to believe me. I am in a very tough spot because of severe RLS (and augmentation if it applies) and I need a doctor to help me. I don't know how much you know about it, but I have read that it's complicated when it is severe and can be hard to treat. I am willing to read books and do whatever I can to learn. I need to know if you will be willing to partner with me in this. I need a doctor who will listen to me, who will take me seriously, and who will pay attention to ideas I bring if I substantiate them from serious medical doctors. I don't know the answer, but I do know what has helped and I'd like to share that with you. I'd like to tell you my story and how I came to be here. If you would, I'd like you to listen and then decide if you can agree to be my partner and help me.

Or something like that. You do NOT want to sound desperate. You do NOT want her to think you are upset or depressed. You DO want her to take you seriously and agree to working WITH you. You DO want her to find empathy for you. You do NOT want her to be alienated that you know more or that you already have the answer.

8. Don't give up. There are many more doctors. It may seem she is your last hope (I've thought this myself), but she isn't. She may be perfect - and I hope she is - but she may not be. Better to move on if she won't work with you and become educated, because chances are very slim she will have the background to help you without her getting some education. And, chances are slim she'll prescribe opioids without getting to know you a bit better, if she'll do it at all. A Pain Clinic is an option if she won't, as is getting a referral from her to see a sleep doc/neurologist/psychiatrist - someone who understands both RLS on a much deeper level than the last person you saw. Someone who won't withhold a drug that helps you because they are afraid.

9. Keep posting and reading. We're here to help.

[woodsie357]

Views hit the nail on the head with bringing a parent, friend, partner etc. When we are sleep deprived it's much harder to communicate and be understood. Its my personal opinion that we also misunderstand a bit more then those who get full restful nights of sleep.

[keana]

Thank you to each and everyone of you who responded to my post. I will take this all into consideration and use many of your ideas at my next Dr. appt.
I do have fear of coming off as depressed and maybe I am but it is because of RLS, I've had 7 different Drs. that have tried giving me anti-depressents instead of listening to my reasons. I alway's try to stress how bad this is effecting me but with lack of sleep I come off as a blubbering idiot.
Just to clarify I've been to over 20 Drs. with this problem.
Well I'll post after my appt. and let you know how it went. I got this Drs. name off this board so I'm guessing she has a lot of knowledge in this area.
Now if you could all come with me .......lol

[woodsie357]

[quoteI alway's try to stress how bad this is effecting me but with lack of sleep I come off as a blubbering idiot.[/quote]

Me too! Out of all the anti-depressants I've been on, and there are many. Cymbalta was actually really effective and did not bother my RLS. It was however a 50$ copay, and I can't afford to take it. But it did help when I took it.

best of luck to you, can't wait to hear how your appointment goes.

[ViewsAskew]

Keana, PM me or email me if you are anywhere around Chicago. I've been to many, many doctors, too.

[Neco]

Make sure if they try to push anti-depressants on you, you say NO and ask them why they would try to give you something that will make your RLS worse... I'd be quite amused to find out their response if they tried to push them on you...

Just be strong, remember to take the Mayo, highlight important bits about medications you are interested in, and highlight anything listed as bad medicine to take with RLS.. If you can take a friend or spouse or someone who has seen how the condition affects you, they will be your strongest advocate.

[SquirmingSusan]

Now if you could all come with me .......lol

Wouldn't it be awesome if we could travel in herds like that. I bet the doctors would learn not to mess with us. It makes me smile just thinking of it.