My RLS Mountain....

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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lyndarae
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Joined: Mon Jul 19, 2004 6:55 pm
Location: pocatello,Idaho
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Postby lyndarae » Mon Nov 01, 2004 9:42 am

Brady, It's Lyndarae I'm an alcoholic with almost 18 months recovery. I will always be an alcoholic there is no cure!!!! I dont know if you have read any of my post but I'll tell you what I had to fight for my life to get zanax and ultram. I nightwalked for 12 months and had finally hit the bottom. I did not want a drink and I did not want to get high. My doc would not give me any addicting meds either. So I think I saw her at least 3 times a month, I had many visits when I was in full panic and could not sit still. She finally got the parmasits in on the visits and I usually only see him now. He knows alot about rls and listens to me. Dont give up!!! I finally took the medical bulliten into my doc to prove to her that people need benzos for sleep and something for pain. I have been taking both for about 2 months now and havent even thought about taking more just to get a buzz. After going without sleep for so long Im getting high on getting a few zzzzzs at night. Good luck to you and fight for what you need to make your sobrity worth it. Have your wife control the meds, tell the doc that is what you will do, tell them anything they want to here. There are millions of people in AA that have to take addicting meds for one thing or the other. Dont feel guilty for wanting to enjoy your sober life. I told myself if I started poping more pills than I should that I would have my sis regulate my meds. Maybe you could suggest this to your doc. You have worked so hard you deserve to have some rest... Lyndarae

Becat, hey girl whats up? Its so good to here from you man I'm so jealous hot air balloning is something I have never done and would do in a heartbeat. I was at work tonight and the graveyard staff came to the door and I could not get up and walk to the door, it was embarrasing, my feet hurt so bad I could not walk. And in the mornings forget it Im learning to crawl again it works good cause I can vacume with my hands at the same time ya I got it going on. The down side is I keep having to buy new jeans cause I'm wearing out the knees LOL. I live alone so know one knows about this, lets keep it a secret ok????Well my zanax is kicking in time for bed, love to all Lyndarae (no pun intended)

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jan3213
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Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Hi Brady

Postby jan3213 » Mon Nov 01, 2004 10:13 am

It's Jan

If I'm understanding you correctly (and please forgive me if I'm not because it's 3:56 a.m), your doctor won't prescribe pain meds to you because of your former addiction, correct? Interesting. Because, about 5 years ago, my neurologist, who practices at Barnes Hospital, St. Louis, MO, who, in my opinion is one of the very best in the U.S., told me, and I'm paraphrasing: "Who cares if you get addicted. There is no cure for RLS and what's more important--living with pain and legs that make you go crazy or becoming 'addicted' to a drug that you are probably going to have to take the rest of your life anyway." That's the gist of his statement to me. This was during a conversation in which he said that if the medication I was on didn't help, the next step would be a narcotic. He also told me that he has had patients come into his office who have told him that if he couldn't help them, they would kill themselves. That sounds rather harsh, but we all know how RLS can drive you crazy. One time, my neuro said he had the flu and he felt so bad, that he mistakenly took too many Tylenol. As a result, he had reaction to the Tylenol that was much like RLS. He said that he now knows what his patients go through. I wish you could find doctor like mine, Brady. Since there is no cure, I, like my doctor, don't see any big deal. Quality of life is what's important to me. I'm sorry you are having to suffer!

Jan
No one is alone who had friends.

bradyferguson
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Joined: Tue Sep 21, 2004 1:29 pm

Postby bradyferguson » Mon Nov 01, 2004 1:14 pm

bye
Last edited by bradyferguson on Fri Mar 18, 2005 12:14 pm, edited 1 time in total.

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lyndarae
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Location: pocatello,Idaho
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Postby lyndarae » Mon Nov 01, 2004 9:43 pm

Brady you know yourself better than anyone else does, my brother inlaw has 9 years of sobrity,BUT he had a back injury working for the railroad. I have watched him suffer for two years!! He has to take pain meds to function. I loved pills too! I HEAR YOU LOUD AND CLEAR!! But you also said you are a different person now. You will always be an addict, and so will I. I tried for a year to deal with the pain and nightwalking because I was afraid of useing too!! My life was horrible, I finally had such a bad panic attack I just knew I could not cope with it anymore.When I got sober I had one of those spiritual awakings!!! I say this lightly because it was so deep. For me meds actually keep me sober. I was also very worried about everyone in AA judging me(A DRUG IS A DRUG IS A DRUG) thing. My own house was not in order, the answers would not come, I was a walking zombie. For me I took the risk because I know that I do not want to get high or abuse my meds. I just want to have a someone pain free life and be able to rest when I need it.You know what the big book says about docs. Some people just need medication, and I think if you had cancer or something you wouldnt be so hard on yourself about taking meds. I know how painful RLS is and I cant handel it without meds and docs care. Im not trying to tell you what is right for you only you know that. I just know how hopeless you feel cause I've been there. I wish I didnt have to take medication but the bottom line for me is I do and I will for the rest of my life. This is my journey!! The medication is just that to me medication not drugs to have fun with but medication so I can feel some fun. Once I figured that out in my head I gave myself a break. I got sober to become a functioning human being and I take medication to maintain that. good luck to you and LET GO LET GOD!!!! take care hope this helps a little Lyndarae

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Hello to all (((((((hugs))))))

Postby becat » Thu Nov 04, 2004 4:24 am

n/a
Last edited by becat on Mon Dec 28, 2009 2:09 am, edited 1 time in total.

Guest

Postby Guest » Thu Nov 04, 2004 5:00 am

Oh, Becat--

That sounds much better than hoped. I'm so happy. Know you're worn out, but glad you posted the news for all of us.

Big hugs!
Sara

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lyndarae
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Location: pocatello,Idaho
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Postby lyndarae » Thu Nov 04, 2004 8:30 am

Hey good job there girlfriend it is amazing when youve had some sleep and some education how much better those gatekeepers are huh!!! I think that is so cool about you wanted to start a support group. I have thought about that too. Pocatello is only about 60,000 people and I know it would be easy to get going here. I have started many different support groups when I lived in Maine and Im pretty good at it and I enjoy it too. I think I will ask my doc for some back up to~~~~~~~~~~~~~~~~~~~~~ thanks becat Im happy you had a good visit its good to here some good news!! Lyndarae

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Hiya

Postby becat » Wed Nov 10, 2004 4:39 am

Hiya to all,
Thanks to you both Sara and Lyn for the posts. You never know where good things will happen, do ya? I really did pray my behind off before I went in.
Much like I'm praying now that my trip to Long Beach goes that well. I'm looking forward to seeing some family, and meeting some others (new family) in person. It's not been to long ago that I was a different person. This place, you wonderful people changed me forever. I can't begin to tell you all how much you inspire me........daily.
It's a supportive, educational, loving place to be. May all of us have the wings to keep this place hopping and going strong. Viewaskew, said it , this could be big. I think so too. It's going to take us all.
I will try to check in while I'm gone, send an update or two.
Hugs and love to you all.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Toto, we're home now

Postby becat » Thu Nov 18, 2004 7:09 am

Well, this has little to do with medications, but more about my trip to Long Beach. A few days away from it and it's is slowly breaking down into useable thought. LOL
I learned that I have Travelers RLS, I was glas to hear the term, travel is painful and disruptive. I travel so often most of the time, so what a pain in the catooter. I learned there are things I can do to help me avoid it. WE talk about the RLS REBEL here, but she's really put some thought into living without medication for as long as possible. Don't get me wrong, I medicated for sure, but not as much as I normally would. Still bugged me, but I had more control. Took my 45 minutes to eat a sucker. That was 45 minutes that I took control.
http://www.rlsrebel.com/
You know, I highly recommend going to next year's meeting. Those of us that have connected here, should all meet together. It was truely the strangest thing to be there in person. I know now I have several new people in my heart, in just the strangest way. Not in a bad way, mind you. The best way. I met the people that have supported, listen, cared, and laughed with me. We do have an awesome bunch here. Honored, to know the people I call my friends.
It was unreal to be in a room where I felt normal, just being there. I wasn't bad for be comfortable. If I need to walk I did. Think about going next year. I think the more of us that go, the bigger our voice. Really.
It was interesting to meet the people that work on our behalf. Some of then were what we always dreamed they would be. Interesting conversations in every corner. I hope to be able to break it all down in a useable form soon.
Ruby, and Neph really sat through the meetings so listen and ask questions if you have them. I ran around too much and had to read the stuff in my room and the plane. I hope to sit through more next year. :oops: It was all they way it should be. Gave me the chance to meet many wonderful people and make some interesting connections to some.

Well, for know that's all, except:
my hugs and best wishes to all.
Last edited by becat on Mon Dec 28, 2009 2:10 am, edited 1 time in total.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Making the Mountain a Molehill

Postby becat » Sat Jan 01, 2005 8:33 am

n/a
Last edited by becat on Mon Dec 28, 2009 2:10 am, edited 1 time in total.

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jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

AWWWWWWWWWW BECAT!!

Postby jan3213 » Sat Jan 01, 2005 11:59 am

An absoluely beautiful post!!!!! What would we do without you!!!

Love you

Jan
No one is alone who had friends.

Guest

Postby Guest » Sat Jan 01, 2005 7:01 pm

I am truly sad to see that you journey has come to an end. It has been truly mindblowing to whatch you Lyn as you have blossomed in to a true Leader of our group. I was fortunate to meet you lyn early in your journey. You have gone from "FRUSTERATED Surfer of the internet" to a 1 women recking ball fighting RLS. You lyn have been setting the standard as to what we in this community can strive to become.

You may be saying "Ya Whatever"

But that is the old broken you talking. The new Lyn turly knows how to recieve a compliment. Lyn you know that we have a history as far as this site goes. It is something that I hold dear to myself. You were proof that I needed that Humans can be sympathetic, compassionate and carring.

Who would have thought that you would have the foresight to call this post my rls mountain. But that it truly has been for you.

PS
If you thought that you had gotten rid of me think again...... I have been trying to teach myself to be more of a listener..... They say in my family that we have the gift of the gab....Well the gab is only a gift if you have the ability to listen.


Hi Jan Happy New Year(to you and your family).... what is that boy of yours up to anyway?????

Guest

Postby Guest » Sat Jan 01, 2005 7:23 pm

Well it would be nice if I signed my work. Thought I was logged in ...

The above post was sent by me Yours truly ....


Later


Brady

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

It's all come down to hope

Postby becat » Sat Jan 01, 2005 7:36 pm

n/a
Last edited by becat on Mon Dec 28, 2009 2:11 am, edited 1 time in total.

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Postby Sara » Sat Jan 01, 2005 7:55 pm

Hey, Becat--

You know you're a wonderful way to start my new year. :D

I think that it's been so important for you and others of us to speak out...."locally" with family and friends, and "globally" through the internet and the conferences and such. I'm more and more mentioning RLS, sometimes in passing where it's appropriate, and I'm getting used to the odd looks people give me. :wink: :lol:

But it seems well WORTH those weird looks and sometimes quick explanations to get the word out that it's NOT a mythical disease, not all in our heads, not a sign of weakness or wimpiness or low-pain-tolerance... and that's it's NOT an easy condition to live with/through!!!!

I had to take a pre-midnight nap last night in order to ring in the New Year with my husband and sons, but I took it without guilt or manufactured excuse. I was tired and my feet were driving me nuts, so I took myself upstairs to lay down rather than be uncomfortable for three hours just trying to sit still and wait in front of the TV.

(The thought occured to me very suddenly last evening, though, and I wonder if anyone else feels this way...... I've never been a HUGE TV fan --partly because I was ignored for the TV when I was a kid-- but I WONDER if it's partly because I just don't enjoy sitting still with limited brain activity for long periods of time because I'm just not all that comfortable? Hmmmm.... interesting thought I'd never had before. :wink: )

But I digress as usual... Fortunately for me, taking the edge of my fatigue took the edge off my RLS symptoms, and I woke up cheerful and ready to "party" with about 20 minutes to spare. A year ago, under similar circumstances (and maybe even six months ago), I might have suffered through the evening instead of doing what -- for me,thankfully, is the best short-term "cure".

And I probably would not have bothered to simply SAY, "Hey, my feet are bothering me, so I'm going to lay down for a while. Have fun, and I'll see you close to midnight." AMAZING how much SIMPLER and MORE PRACTICAL that is than suffering in silence or making up some other excuse... and God bless them, my family can obviously HANDLE that frankness, too.

I guess it's a good lesson that we don't ALWAYS have to protect and "save" the whole world. SOMETIMES we deserve (and others may even welcome) the chance for us to be human and cut ourselves the necessary (or even the optimal) slack for our own good. :D

Happy, happy New Year to everyone here who's helped me learn to live with and despite RLS... and given me hope and heart to face whatever my RLS future may bring!

Hugs-- Sara :D


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