Relaxing Bringing on Symptoms

For everything and anything else not covered in the other RLS sections.
coaster
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Location: Wisconsin

Post by coaster »

Sleuth wrote: I see myself being a drug addict. Dale

Dale, this attitude is simply a result of acompletely misguided and misdirected social stigma on the part of the general population who has no idea of what it's like to live with a chronic illness. Let me help you free yourself from that incorrect thinking and reorient your attitude toward one that puts medication use in its proper light with respect to your situation:

The word "addiction" derives from a Latin root word that has several meanings, one of which implies dedication or devotion, as in you are devoted to something. Look at it this way: you are now devoted to or dedicated to your illness in the sense that it's something that fills your life and demands your complete attention. Even in the sense in which the English word is used, it's appropriate in that addiction refers to something over which a person has no control. Right now your illness is in control, so that fits as well.

You are not, you will not, you cannot be addicted to drugs.

You ARE addicted to your physical ailments.

Medications are simply a way for you to be able to cope with your addiction. Perhaps to neutralize that illness addiction and put you back in control. Nice, twist on the addiction theme, eh?

Even from a completely pragmatic and physical standpoint, it's been demonstrated in clinical studies with chronic pain patients that when the level of pain medication is adjusted so that it's just enough to take care of the pain, but not so much as to cause a "high", then even the strong restricted pain medications such as Oxycontin do not produce physical addiction in most people with chronic pain issues.

Go for it!! :D
~ Tim ~
hot topics & current events: The Bill Sebastian Forum

coaster
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Location: Wisconsin

Post by coaster »

Hey, Dale, something just occurred to me. I mentioned it in passing earlier in the thread, but didn't think of its significance until now. You mentioned a psychiatrist, and you're describing depression (no stigma, I've had it and I'll bet many here have or do) so the following is really important:

many anti-depressants -- the ones in the Selective Serotonin Reuptake Inhibitor (or SSRI) class, such as Prozac, Zoloft, Paxil, Celexa, and Cymbalta (and others) -- aggravate RLS symptoms

make sure you discuss this with your doctors, especially your psychiatrist if you're taking an anti-depressant. Psychiatrists like to treat everything with medication nowadays, and they're always favoring the newer drugs, such as Cymbalta. For me, an old drug is what helped my depression without aggravating my RLS: Wellbutrin (bupropion). If you're on an anti-depressant, it cannot be immediately switched. It's necessary to gradually titrate the doses of the ones you're coming off of and the one you're going on.

Sorry if you know all this already; I think it's important when RLS and depression are mixed, as they often are.

Best wishes & good luck!! :)
~ Tim ~
hot topics & current events: The Bill Sebastian Forum

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

depression/sleep deprived

Post by mackjergens »

Dale,
The very first med given to me for rls, was zoloft because my dr at that time thought I was depressed.. I wasnt, I was sleep deprived and when you live on 2- 4 hrs of sleep for yrs, you appear depressed.

I did how ever try the zoloft and it made me have plmd. my arms, legs would just jump in the air while i was trying to sleep, my hand actually flew up many times hitting the headboard of the bed. I stopped taking the zoloft and the plmd went away.. but still have the rls.

I went back to my Dr and told her I stopped the zoloft. She was not happy about it, but I told her I am NOT depressed, I am sleep deprived. Well she didnt believe me .. So I found another Dr, that was willing to listen to me and finally convience him to let me take hydrocodone, which I discovered would control my rls, when I had dental surgery and was given hydrocodone for mouth pain. That was over 10 yrs ago. I can assure you I am not addicted. I do not feel any type high when taking this med. It simply controls my rls and its wonderful!!!

Sleuth
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Location: New York City

Post by Sleuth »

I have been taking anti-depressants for years now. Right now I am on an MAOI, which I've been on for years. It didn't affect my RLS. It was the Abilify I took for 4-5 months that brought on the symptoms 24/7.

I don't have problems with RLS when I'm sleeping. My problems are when I'm awake. My problem with sleeping is that I wake up every 20 minutes or so and did that long before the RLS. I can't remember the last time I slept for more than a couple of hours straight. I can live with that. Right now, my aim is to get rid of the RLS symptoms when I'm awake so I can have a life again.

Dale

ViewsAskew
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Post by ViewsAskew »

Dale, you have stopped the Abilify, correct? But you still have symptoms? Sometimes, over time, the symptoms decrease, so there is that hope.

I honestly think that this has to be one of the most unfair things...that you take something to help you and you end up with uncontrolled RLS. I commiserate because I took a drug to help the periodic limb movements that were keeping from getting good sleep and it gave me 24/7 RLS. I had RLS before, but it was infrequent and mild.

I hope that was Coaster said was helpful....you are not an addict if your RLS responds to opioid drugs and you find that they control it for you. If you had diabetes, would taking insulin make you an addict? Uncontrolled RLS can cause many problems, so it needs to be controlled. Uncontrolled RLS also can be as difficult emotionally as having diabetes or any other chronic disease, according to a recent study.

My heart goes out to you. Things sound very difficult right now. I hope that you are able to find things to help you to get to a better place, physically and emotionally. We'll do all we can to help with the RLS part and we're always here to listen.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

dogeyed
Posts: 441
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Post by dogeyed »

Dear Sleuth,
WELL, after reading your tale of woe in NYC, I have an idea to help you with your life situation (aside from the forward-thinking bit I offered before). Let's see, your mother lives in Florida and in her own place, and soon will have no help on account of insurance. You are living in the middle of a construction zone with strangers as neighbors, and you got RLS and misery. Consider visiting your mother, take a train or plane, and get the one-way ticket money by selling some of your stuff at a yard sale. The area youngsters will drool over your "antiques." Box up the rest, maybe consider storing them (cheap), pack several bags to take, and let the place go or sublet it.

Go live with your mom, help her out, sleep on the floor if her place is tiny. When she takes a nap, lay out on the back porch and catch some rays. Take the bus to the beach and wade in the ocean. Out in the countryside in Florida, you can find a palace for what you get in NYC. If you decide you might want your own place down there, populate your new sunny home with a couple dogs and a cat, get a couch and rug and TV at someone else's yard sale, and maybe even bring over your mom. Just an idea, take it or leave it, don't mind me.

On the medicine front, there is no question whatsoever that opiate type drugs are not only the best medicine for RLS, it will also (a) stop the pain forthwith, and (b) won't addict you, despite drug-war politics to the contrary. Since you're already scared to death of them, that will serve to police any wild all-night parties.

Anyhow, we'd like to know when you're going to the doc to get the right meds. And if you ain't gonna move, stay in nice hotel rooms once a month or something, 50 stories up where no racket other than the hooo-hoooo of doves exists, just to give yourself a break once in a while, for crying out loud.
GG
"It's not how old you are; it's how awful you feel."

Sleuth
Posts: 238
Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

GG,

I knew someone would suggest I move in with my mom. :wink: That is out of the question. First off, I detest Florida and always have. I call it the monotone state. I also don't know how to drive, so would be a prisoner down there.

My mother lives in a one-bedroom condominium in one of the oldest, most run down communities down there. None of the residents even talk to each other. It is pretty awful there.

On the medicine front, I am worried that I will be stoned and not able to conduct my business like a normal person. When you take these narcotics, can you function like a normal person?

I have a small at-home business, so need to be pretty sharp.

Dale
Last edited by Sleuth on Sun Apr 12, 2009 3:00 pm, edited 1 time in total.

Sleuth
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Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

Ann,

I stopped the Abilify about a year ago. If the RLS symptoms were going to abate, they would have long ago. Not only haven't they eased up, they have progressively become worse. I don't know why that has happened because I haven't changed any of my medications during this time. In fact, I'm taking the same medications I've been taking for almost ten years.

Dale

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

i take pain meds every night and during the day at times, and they do not affect me in any way! The only thing they do is stop the rls. I also have a friend that has Firbro and takes alot of pain meds during the day, and continues to work in a bank as a teller and has had no problems doing her job.

Having said all that, you must understand that each drug reacts differently with each person, so you would have to try to find out just how they would affect you. But I honestly think you will be find taking pain meds, as long as you dont over do it.

coaster
Posts: 58
Joined: Fri Jul 14, 2006 12:56 am
Location: Wisconsin

Post by coaster »

Sleuth wrote:... I detest Florida and always have. I call it the monotone state. ....

I hear ya!! Cute name. :D Years ago I used to travel there several times a year. It's a great place to go for a week in the winter, but there's no way I've live there. Not even as a part-time snowbird. It's just boring. Sorry if I offend any members here from Florida; feel free to say nasty things about cheese if you want. :lol:
~ Tim ~
hot topics & current events: The Bill Sebastian Forum

ViewsAskew
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Post by ViewsAskew »

Sleuth wrote:Ann,

I stopped the Abilify about a year ago. If the RLS symptoms were going to abate, they would have long ago. Not only haven't they eased up, they have progressively become worse. I don't know why that has happened because I haven't changed any of my medications during this time. In fact, I'm taking the same medications I've been taking for almost ten years.

Dale


The same happened to me, but they tell me that can't happen, lol. Right! They say that when you stop the drug and it's out of your system, it's supposed to go back to normal.

I keep hoping that it won't happen to anyone else, but once in awhile, someone else is in the same club. Sorry it's you :cry:

Yeah, living with one's mom isn't always a good thing....I'm lucky as my mom and I could easily live together and I trust her never to live anywhere I'd hate! Now, my dad????? Completely different situation.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

Sleuth,
you do know that stress will certainly add to your rls. So this might be why yours seems so much worse at this time. If there is anyway to reduce the stress you are under, you might find your rls to become milder.

Yes I understand how hard it is to deal with stress, but maybe you can find some way to reduce the worry over your situations, in order to help your rls.

Before I had meds to help control my rls, after reading alot of info about rls and message boards, discovering the stress problem to rls. I never stress when having an attack, I just get up and get busy doing something that makes my legs move. cleaning, rocking, walking , just something that will kill that terrible nerve racking creepy crawley feeling in my legs,.. I use to flip/flop in bed, beat on my legs, cry, scream or what ever until I learned about stress making it worse. it is so much better on me and my rls to just get up and get busy,no matter what time of day or night it happens.

Neco
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Post by Neco »

Remember that RLS is a progressive illness, so you can not change anything for years and it will still get worse.. There is nothing you can do about them except adjust your treatment protocol as your symptoms dictate, either with increasing medication, or finding one that controls the symptoms better..

As far as opiates are concerned. When most people take opiates for the first time, there will be a period in the beginning where they will have the most effect on you. Whether it is knocking you out, or just making you pretty relaxed/loopy.

However as long as you do not unnecessarily increase your dose beyond what you need, those effects WILL fade after a short time and you will begin to notice that taking the same amount dose not really phase you at all. You will be able to do any job you like or task you could do before. Different opiates have effects in different ways and at different strengths, so it's a matter of trial and error and what feels like the best med for you.

Sleuth
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Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Post by Sleuth »

Ann,

The same happened to me, but they tell me that can't happen, lol. Right! They say that when you stop the drug and it's out of your system, it's supposed to go back to normal.

Every doctor I saw told me that the Abilify was the reason why my RLS got so bad. Everytime I hear a commercial for that drug on the television, I race to change the channel.

I searched for Abilify litigation. I found a few large lawfirms who handled Abilify litigation. When I went to their website and clicked on "Abilify," a message appeared that they were not handling Abilify litigation any longer. I wonder why. My initial reaction is that the company producing that drug made some sort of settlement/deal whereby there would be no further litigation. Conspiracy theories abound. 8)

Dale

ViewsAskew
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Post by ViewsAskew »

Dale - it was a different drug that did it to me. We've had a few of us - I guess about five or six - who had permanent worsening of RLS from taking a drug, but the drug is different in most cases. The doctors say that it can't happen.

What we all had in common was that it was either an anti-depressant or a dopamine agonist (mine was Mirapex). You're the first I've heard of who had it happen using Abilify. That doesn't make it any less horrible, just that this is something that happens to so few of us and isn't documented in scientific literature....I doubt we'd have any chance of winning anything legal. I know I am not cut out to be suing anyone - it sounds much to painful to focus on something negative for that long. I just want a reasonable life, though sometimes I have a passing moment of fury all over again.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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