New and Have Questions

[dwilk831]

Hi All,

I am new here and I've been struggling with RLS for 10 years. I have a few questions on medication and how to go about asking my Doctor for help but also have some questions on withdrawals from opiates.

About 5 years ago I saw my Primary Care and after many visits thereafter I was prescribed Hydrocodone for my battle with RLS. I began taking the medication and my life drastically changed, no longer did I have RLS and I was able to actually get a good night sleep. About one year ago my primary care passed away and my new doctor decided that Hydrocodone was not the answer. I've been slowly weaning myself off for about a year while seeing Rheumatologists and Pain Management doctors. During this time I've also been prescribed Tramadol which literally has no effect on the RLS.

I do have an upcoming appointment with a Neurologist to talk about my issues and had a few questions:

In todays day and world with prescription drug abuse I fully understand a doctor's hesitation in prescribing hydrocodone but I have an ongoing problem with RLS that has only eased with hydrocodone. How do you go about asking a doctor for this medication? I've never had to actually ask, my previous primary care understood the pain and awful feeling us RLS sufferers go through.

As far as withdrawal goes, have any of you ever been through it? I am currently down to taking (2) 2.5 mg pills per day, morning and night. I was originally prescribed 10mg three times daily. Even though I am suffering, I've done it knowing the possibility I will not be prescribed this medication anymore.

Please help and thank you for answering my questions in advance.

[rthom]

Hi, sorry to hear you're going thru this. I came off the hydromorph not too long ago. I will get back to you in more detail, I just have a few errands I have to run at the moment. Talk to you soon

OK I'm back. I have gone on and off the hydromorph several times over the years, all of which were because society is concerned that I'll become that dope addict strung out and ruining my life as well as that of others. This is the wrong reason to suffer with RLS/WED. I was feeling guilty about taking the one type of medication that allows me some relief. Sounds just a bit insane when you put it that way doesn't it? I had tired of fighting with society and had given in believing that they (who know nothing about me) must be right.

About the withdrawal, I had only physical changes each time no stress or mental changes. I got a bit of loose stool as the medication is constipating, so when i stopped taking it... I also got a bit of hot/cold sweats but this was from the stool thing. I took Imodium for 1 day and it fixed that too. The only other thing was the RLS?WED went nuts which is the norm for me without meds.
Basically i did not have withdrawal just my normal self without the medication. I am always surprised and thankful that i do not have the withdrawal like a lot of folks do.

My specialist told me to try a few different types of drugs but figured the dopamine drugs weren't likely to help (and he was right) So I am now having to accept that i need whatever works for me. Whether i (also others) like it or not. I hate taking the stuff but we all have to do things we don't like, for me it's taking this stuff and being grateful that it exists at all. After all how can i complain that I have to take it then turn around and complain that there's nothing to take for the symptoms?
Remember they don't have to live in your shoes and are likely sleeping while you toss and turn or pace etc.
As the old timers say if it works don't fix it, just keep a good eye on it!

About the dr. h/she works for you. Get what is right for you (not always what you want) and if you can't fire them! You only live once and you have to do the living /suffering at home while they sleep-they can't possibly truly understand unless they have a personal connection to it.
It's alot like mechanics--don't take a Ferrari to a Mazda dealership for repairs!

Good luck and keep us informed. randy

[Polar Bear]

Welcome to the discussion board.

Well done so far in reducing your hydrocodone, this cannot have been easy.

If you use the link in my signature it will take you to a document which is full of useful information and includes details of the medications used for WED, and which states that opiates are used to treat WED. This document is provided by the RLS Foundation and one of the RLSF medical advisors is Dr Buchfurer who is a highly respected expert and the co author of many books on the treatment of RLS/WED.

Usually other medications are tried before opiates. Have you ever tried Requip or Mirapex, or the anti convulsants i.e. Lyrica or gabapentin. These would often be tried prior to the opiates. Or often a cocktail of these medications.

However you have already been using hydrocodone for approximately 5 years and it would be interesting to know what your new doctor considers you should now use for symptom relief. And what have you been using to help while the hydrocodone is being reduced.

Also have you had your ferritin level checked. Your level should be over 50 and nearer 100, especially if Requip or Mirapex is considered for treatment. This requires a blood test requested specifically and it checks the iron level stored in the brain rather than a normal iron blood test. Doctors generally consider 20 to be normal but this is much too low for a WED sufferer.

I have no experience of weaning off opiates and have no doubt that other members may be able to talk to you in this regard.

[ViewsAskew]

I was very lucky that when I stopped methadone I had no issues. Not sure why, but I didn't. I mean, sure, the RLS/WED went nuts, but I had no withdrawal issues.

If you've tried other treatments and they didn't work, your may need to find a new doctor if the neurologist won't help you. The document the Polar Bear linked to is an excellent one. I haven't looked at it in a long time, but it used to say that patients that didn't respond to other therapies should NOT have opioids withheld from them. They are an appropriate treatment. You haven't abused them, you are not addicted - and if you're not by now, you're not going to be most likely. Your body is physically dependent on them...but that happens to all of us.

I hope the neuro is open. If you haven't tried the drugs Polar Bear mentioned, you may have to try them. If they do not work, then a good doctor will prescribe opioids again. Some doctors would say, hey, the opioids are working and the patients isn't having any issues, so why not continue on them? it depends on the doc and how much he/she has treated WED.

If you have tried them and they didn't work, that's the intro to the doc. Explain what you went through, how hard it was to find something to work and that this allows you to have a normal life.

[badnights]

I agree with the above! Your doctor is suffering an irrational fear of prescribing opioids.

patients that didn't respond to other therapies should NOT have opioids withheld from them. They are an appropriate treatment. You haven't abused them, you are not addicted -

Opioids are an appropriate treatment!, and indeed the only treatment available for some people.

I can't understand what your doctor must be thinking, to put you through this needless withdrawal. Maybe it's good for the body to do that now and again, I don't know, seems like a lot of stress on the system tho. And no benefit in terms of RLS/WED. Your doctor should not be toying with things s/he doesn't understand; s/he should have referred you to a specialist before messing with your meds.

Do you have another condition that requires you to see a rheumatologist? If your GP has taken a year to figure out that RLS/WED is neurological not rheumatological, get rid of him as fast as you can.

[dwilk831]

Hi Everyone,

Thank you for the replies. I have also been put on lyrica and meloxicam. The reason they sent me to a rheumatologist was because they suspected possible arthritis as a cause of the pain/creepy awful feeling I get.

Not sure if the meloxicam had any effect, I don't think so. The lyrica was just way to tough on my body. It basically put me to sleep during the day and to me ultimately had no effect on the rls.

Unfortunately I have to wait until the 27th to see Neuro. So we will see.....

[Polar Bear]

If you go walkabout when the WED symptoms start does this help take away the pain/creepy feeling. And if it doesn't take it away does the movement help it.

If the movement helps the horrible sensations then I personally would consider that it is not arthritis causing the creepy sensations (although it is still possible that you have arthritis and that this is causing pain). Also, does walking improve the pain symptoms.

You are in a position to state that you have already tried Lyrica etc.
what about the requip or mirapex, it is just possible that a doc may want you to try these to see it they help prior to considering an opiate.

Be well informed and have all your medication history written down before seeing the expert. Also on the RLS Medical Bulletin (see link in my signature) print it out and highlight the relevant text, so doc doesn't have to go through the entire document.

[badnights]

And don't be shy about providing educational material to your GP, or the Pain dude, or the neurologist. Even specialists need to learn about less well-known diseases, which unfortunately RLS/WED is, even though it's fairly common; and need to keep up -to-date, which they do by reading things like the document in Polar Bear's signature. It was written for medical professionals.

[Betty/WV]

I'm sorry you are going through all this. Just a couple thoughts-----My neuro is also afraid of prescribing opiates. He knew very little about WED when I first went to him. But I stuck with him because he seemed to want to work with me. He did put me on Mirapex which helps so much. But I still have insomnia, which I think the Mirapex contributes to. At least, the WED is calm and I can lie down, which before I couldn't, I had to keep moving. He will gives me 10 opiates at a time. I save them for the extreme times.

Dr. B, who was mentioned before, says that if you take the opiates as prescribed by the doctor, you won't become addicted. If the doctor prescribes them correctly. He said no patient of his has ever become addicted. I take other meds for other conditions, such as blood pressure meds., I have to take them regular, am I addicted to them.? I guess you would say I am because if I don't take them I'm going to have trouble.

WED is a condition, like no other. Its a trial and error thing. I have had WED for over 40 years. Many of those years I had no idea what was wrong with me. Doctors thought I was nuts, one made fun of me. The WED has destroyed many years of my life. I don't know how I functioned. When I finally accidently found this site, I began to understand more about my condition. I found people who knew exactly where I was coming from and they really helped me. So stick around and you will find help here. Get Dr. B's book, "Restless Legs Syndrome, Coping with Your Sleepless Nights." (Dr. Buchfuhrer) I got mine from Amazon.com, it was very reasonably priced and a wealth of information.

Wish you success in dealing with this horrible condition.

BETTY/WV

[Polar Bear]

I take other meds for other conditions, such as blood pressure meds., I have to take them regular, am I addicted to them.? I guess you would say I am because if I don't take them I'm going to have trouble.

BETTY/WV

In my opinion you wouldn't be addicted to your blood pressure meds, I reckon you would be dependent on them.

[dwilk831]

Hi again,

I have a question for the person who was on hydromorphone.....I am not familiar with that drug. Is it stonger than hydrocodone, the same or less? Just trying to gauge what I may experience if I am no longer able to stay on the hydrocodone.

I will bring that link with me to my Neuro appointment, has anyone ever done that before? What was the reaction to telling a doctor who says opiates are not the answer and then BAM I pull out an article that says opiates are an approved drug for RLS. Not sure how that reaction would be.

Thanks again for your help

[Polar Bear]

dwilk831: I hope your doctor is amenable to new information particularly when it is from a respected source.

I have been fortunate that my GP is willing to listen to me and willing to take note of Dr B and his book. My GP was in the past reluctant to take the road of opiates but eventually gave me tramadol to supplement my requip. I am not sure how he would deal with the matter if or when I perhaps need something stronger but I'll cross that bridge if and when I get to it.

I have taken Dr B's book with me and highlighted extracts.
I have also taken a copy of emails between myself and Dr B where I have sought advice.
They were accepted ok by the GP.

[ViewsAskew]

You've hit the nail on the head - you must be careful when presenting information - I don't like looking stupid, and I'm sure doctors hate it even more!

Do preface it with something like, "this may not be new to you, but it sure was to me. I really helped me understand how doctors choose the medications they use to treat RLS. I brought it because it helps me understand what you're thinking. Would you please use it with me so I understand?" That allows him to escape admitting it he's seen it before and makes it a lot less threatening.

Do say it's from the RLS Foundation and their medical advisory board and that it came from initial work done at the Mayo Clinic. You don't have to say it's on the internet! Anything on the internet is immediately suspect.

For what it's worth, it takes about 15 years for new research to become commonly known and accepted, so even though it's several years old, it's absolutely new to most doctors, so he may never have heard of it.

He will probably need time to digest it. You can say something like, "I was surprised to see that when other drugs do not work that opioids actually remove symptoms and are considered OK to use. Now I know why this worked for so long." See what he says. You'll know pretty quickly if he's listening to you and willing to work with you.

If he throws it to the side and doesn't look....you may have to work with him some more. If he says he doesn't agree...you may have to find a new doctor.

[Polar Bear]

As Ann indicates..........I try not to mention the internet and think that it is therefore good to have the printed RLS Medical Bulletin (and also Dr B's book ) to refer to. And I always refer to the involvement of The Mayo Clinic which carries weight. So that it doesn't look like I'm trawling the internet reading anything and everything.

Its all about giving the doc his 'place'.

[rthom]

I'm not really sure I have had both meds and --I think--the hydromorph is stronger than the hydrocodone. Hydromorphone is short acting and Hydromorph contin is the long acting version.

Good luck