The RLS plague

[zoeyandcleo]

Hello to all you fellow sufferers,

This is my first post, and I'm a bit nervous about it, but here goes.

I've had RLS for about 12 years. When I first talked to my Doctor about it, he knew what it was, but was not too familiar with potential treatments. Well, we went through some trials...First Parlodel (Horrible side effects), then Sinemet (Horrible side effects).

He sent me to a Neurologist, and WE tried other things...Neurontin (Caused itching all over my body. Mirapex with the same results. I asked the Neurologist about Opioides, and he said that these were not on the list of treatments for RLS, and they would not be one of his choices anyway.

Went back to my Doctor, and he gave me OxyContin...Worked like a dream! No side effects at all, just relief. Finally.

Well, I've been on Narcotics for about 11 years now, and I can't say that they've made my life better. They completely relieve my symptoms, but they also are addicting, and are causing me all sorts of problems in that regard.

This post could go on, and on, and on, but I'm going to leave it at this point for now.

I just wanted to enter the discussion group, and thank you all for letting me know that I'm far from alone, and to let you know also, that I'm very sympathetic to ALL of your troubles, worries, doubts and concerns.

I hope that in the end, there will be someone that I can help in some way.

Regards,

Kip

[ksxroads]

Welcome to the fold, Kips. Sorry that you have RLS, glad to have your input. Looking forward to learning more about you.

Hazel

[tashton]

Kip... Welcome. I read with interest that you have been on narcotics for 11 years and have had relief from RLS during that time. I just started on opioids about two months ago after trying medication after medication . I have found relief but have wondered if that would change over time. Have you been able to maintain a steady dose or have you had to increase in order to continue to get results? What is your experience with the addiction part? We are all addicted to the meds we take because without them life is hell. I can tell when it is time to take another dose because the RLS begins to manifest itself but I don't crave the drug or have any euphoria feeling. In fact I don't sense any of that. If you can tell us more I would appreciate it since I am wondering where I go from here. I am hoping that I have found long term relief. Would like to hear from others that have been on opioids long term what their experiences are.

[ViewsAskew]

Hi guys, just poking my nose in regarding addiction. I hope I don't ruffle any feathers here! I just think it's really important that we all know the difference between addiction and dependence and it's important that we remember it - I don't want my doctor or myself thinking of me as an addict. I am dependent on my meds, not addicted. Heck, I'm already crazy!

Physical dependence is what happens within a few weeks of taking opioids and benzodiazepines. Actually it also happens when we take some of the anti seizure drugs and anti-depressants, too, and when we take dopaminergics. We can't just stop any of those without our body having problems.

Our bodies get used to the chemicals we take and alter the chemicals they make. When we stop them, our bodies do not know what to do! They are missing chemicals and not used to making them on their own.

Dependence can be much tougher in some drugs that others. Benzos are some of the hardest to stop for some people. Opioids are moderately hard, but can be easier or harder depending on the person. Some SSRIs can take years to stop!

Choosing to take opioids is a hard choice. Most of us choose it when we have few other options, if any. They, like any drug, exact a price. And stopping them will be hard, and very hard for some. For a very few, addiction occurs. Addiction is actively seeking to take a drug to get high, to want to increase the amount to feel high, to feel emotionally that we MUST have the drug, etc.

Of

[ksxroads]

Ann,

You are one my favorite HEROs or is it es! Thank you for reminding us of how important it is to consider our terminology. So many here suffer from RLS because of the *addiction* fear among the medical profession in regards to opiods etc.

Hazey

[Guest]

Statement by Dr. Robert Bennett, Chairman of the Arthritis and Rheumatic Diseases Division at Oregon Health Sciences University.

The use of opioids in non-malignant pain is still controversial, but it is slowly gaining greater acceptance as more doctors become educated on this topic. Although nearly all patients on opioids become physically dependent (they will suffer severe pain and anxiety if the drug is abruptly withdrawn), true addiction (which means craving the opioid for the psychological lift it might provide) is rare in chronic pain patients. As a general rule-of-thumb, if prescription opioids result in patients being less distressed and more functional, continued prescription is usually worthwhile.

full text to his interview...

http://www.fmnetnews.com/pages/bennettQA.htm[/quote]

[ViewsAskew]

Thanks, guest! Articles like that really help us educate ourselves about what fears are real and what are overblown, and helps us educate our doctors.

[jan3213]

Thanks, all of you, for this very important discussion. And, thanks for the great information, Guest, and for the link. You don't have to have a malignancy to suffer from chronic pain, as many of us here know.

Ann, you very clearly defined the difference between dependence and addiction. Thanks!

Jan

[Kip]

Hi to everyone, and thank you for your warm welcome,

You know, after re-reading my first post, I'm wondering if I should join the group...That statement is not a sympathy plea, believe me.

I mean, I gave the impression that the use of Narcotics meant that addiction was inevitable. I know that that's not true, and I would be a bit more thoughtful before making any future posts.

I know that addiction is far from automatic, because my wife takes the same medication in the same dose that I do, and has absolutely no problem doing so...She is dependent, but she is not addicted.

If your doctor and you are considering Narcotic therapy, and it's something that you think may help, by all means, give it a try. Taking Narcotics is not the beginning of the road to ruin...I know this from first hand experience, and please forgive me for giving that impression.

The other statement that I made was that "Hopefully I could help someone along the way". How beatific!...If I am able to help someone, then great, but I joined this forum because I need help as much, and maybe even more than a lot of people in this group.

Thinking of you all, and wishing you all the best. And please accept my apology for being such a fool.

Kip

[Walking After Midnight]

Kip...
I thought it was a great first post, very honest. It's hard to be honest. I don't know about everyone else but it seems like, personally speaking, I like to put on appearances like I've really got it together, really got a handle on this whole RLS thing, my attitude and my meds.
I take Vicoden everyday. My Neuro tried the Mirapex, Requip, Carbatrol...all that stuff on me and it either didn't work or made me sick. Klonopin and Vicoden are the only meds that I can take daily without bad side effects. It's helped me out tremendously but I'm not lying when I say there's days I struggle with just taking "One at bedtime". My RLS doesn't limit itself to bothering me only at bedtime and there's days I'd rather come home from work in the afternoon, take a couple, drift off and forget about my RLS and everything else. I just feel so much better when I'm taking Vicoden. So when you say it's "addicting", I know exactly what you mean.
So please don't apologize or talk about "being a fool" when you're just being honest and open about how things are. I'm pretty sure we all know exactly where you're coming from, maybe some more than others but we all know. It's no secret.
This is one place you can be honest and not worry, that's what this forum is all about.
Take care.
Randy

[becat]

Hi Kip and Hugs to the others in this thread.....of course a hug for Kip as well.
I love this topic and these types of conversations. Why? Well, I think we all TRY to put on a good face for the rest of the world, like WAM said, but truth is that this RLS crap is over the top somedays for us all.
No I'm not addicted to my meds (percodan and Ambien), but I will not go with out them. So I'll take the physically dependent route. However, if this is what it takes to make me "normal and functioning" in my daily life......heck call me what ever you'd like, I'm sticking with the meds.
Life before was simply hell and I was not living I was just here.
Simple pain control and some sleep made me a new person, a likeable one. The kind of person that might have friends or a family, a job.....I wasn't any good to any of them in the 9 yrs. I suffered silently and just took the high road and bit my lip. Or scratch until I bled. Or got so stiffen up that I could not walk normally during major attacks. I got an avg. of 2 hours sleep a day for over 9 yrs straight.
Kip, I don't take enough to be totally without pain, ever. But I have a life and I'm apart of it. Like WAM, most people never know what I'm going through. A shower ( every sat in Texas. lol ), a little make up, comb my hair and smile.......most people would never know what my body feels like all of the time. I have no scars, wounds, or anything that shows them what is really going on. No one really knows that by noon my pain level is already at a 5 or 6.
We have each other here, we have people that really care and understand. We are blessed that even on good days RLS sucks and we can come here and say it out loud. Scream it, vent it, and know that we loved just the same.
Yes, there are days we all row the boat we share. There are days others row for us. Most of the time we're all hoping everyone else is rowing with us.....LOL duct taped orrs in hand!
Your post was wonderful and it was from your heart, you'll never go wrong with us here doing it that way.
Glad you found us and good to read everyone.
This family here is always in my moon.
Lynne

[jan3213]

Kip, it's Jan

I totally agree with both WAM and Becat---your post was just great! Honest and forthright. That's the way to do it!

I just want to add one thing. You kind of hinted that you were wrong in saying you could help the rest of us. Well, guess what?! You can and probably will!!! We all learn from and help each other. It doesn't matter if you've been a member of this forum for 2 years or 2 minutes!!!

We are glad to have you, Kip! Good luck and please keep us posted!!

Jan

[rlsseattle]

I feel like a little like a broken record. I started having RLS symptoms when I was in my late teens-early twenties. It has moved progessively throughout my body, and now involves not only my legs, but also my arms and chest. I am 58 now and have constant leg pain in addition to the other symproms

I went through all of the regular medications and had many bad side effects--the oddest being I could not sleep at night on mirapex or requip, but had narcolepsy during the day. Had to quit when I found myself nearly asleep when driving more than once.

I started on low dose time release ms-contin (morphine) 6-7 years ago. I have moved from 15 mg (about 1/2 a normal dose) twice a day, to 15mg 3 times a day--but that the increase was largely because I started exercising heavily and the pain part increased significantly as it would in anyone exercising like that (walking 6-8 miles per day, 5 days a week (hint--if you do something like that, audiobooks are the only thing that deals with the boredom. Too much music is required to get you through it several days in a row) The combination of the two forms of pain made that a logical side effect.

I have no RLS any time. Complete relief day and night. Absolutely no feeling of RLS, and very little pain.

I feel no craving for the drug and never got a high. My doctor(s) have no qualms about this approach because people with true pain don't risk the high as much, and the low dose, slow release limits the likelihood of a high and of addiction. (Pretty hard to get too high on 1/2 a dose evenly spread over 8 hours.)

There are monitoring issues--have to see the doctor periodically, just to talk about symptoms and to get the written, non-refillable prescription) and the medical center required a "narcotic contract" which simply states the terms on which they will continue to prescribe maintenance narcotics.

My advice is to discuss this issue with a doctor familiar with narcotic use and pain control. Having a doctor who knows about RLS is obviously a plus. You definitely will be dependent--but aren't you dependent on any RLS medication, your heart medication, and others?

rlsseattle

[jan3213]

I totally agree---pain management is so important. It's not that easy where I live, but I'm going to a new neuro the 16th--- Hopefully, she'll understand... Being in pain 24/7, no matter what "level" your pain is, isn't living, IMHO.

Jan

[ksxroads]

The most important impact on me when I first joined aside from the wonderful people here, was the Quality of Life statment. Being miserable a majority of the time, physically and Drs assuming that it was all mental!, I had no concept of such a statement. I like to think of myself as a positive person, and the thing was I had to be or I would have jumped ship long ago!

So happy you are here, Kip, RLSSeattle, Becat, Jan, WAM, Ann, Nadia, Lyndarae, Jumpy Owl, Dragons and Butterflies, and you too. Rowing all those years alone had a purpose! How wonderful it is to have found the group, and I sincerely hope that you will continue to comment, stir up discussion and always remain hopeful.

Hazey