More adventures with doctors

For everything and anything else not covered in the other RLS sections.
SquirmingSusan
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Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
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Post by SquirmingSusan »

Dr. B's website is: http://www.rlshelp.org

His email addy is: somno@earthlink.net

cornelia

Post by cornelia »

Oh Jeannie, I didn't read your message well enough. But now I know what is the culprit for your crying: it's the Wellbutrin.

I had EXACTLY the same experience. I was on it for 5 days and I cried almost all the time. It was horrible. I called my neuro in despair and discontinued the medication. The crying stopped. Apparently crying is a side effect for some people. I have seen more people experiencing the same thing on the Internet, but not many. I sent my remaining pills to my niece in Arkansas (I live in Europe), who is happy with Wellbutrin. Good for her, but I will never tak it again.

Dr Buchfuhrer mentions Trazodone to be RLS friendly and probably Desipramine.

Corrie

stitch
Posts: 168
Joined: Wed Feb 14, 2007 8:47 am
Location: Virginia
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Post by stitch »

Corrie, Thank you so much for your answer about the Wellbutrin and I have a call into my doctor today. I was on wellbutin once before to help stop smoking but it didn't help with that either but I don't remember the crying. So it's not in my heard about all this crying,lol

I lived in Germany for 5 yrs way back in 1958 until 1962.

I might have to mention those other to my doctor because the paxil does seem to upset the RLS. Thanks, Jeannie[/b]

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

Post by jan3213 »

Hey Stitch---It's Jan

I received a PM from Lynne--just got home last night--and I wanted to tell you about my bone grow stimulator.

I'm supposed to wear it four hours every day---but, I'm honestly not good about wearing it. As Lynne said, they gave it to me the day I left the hospital. It helps with fusing. I have started to fuse, which is a good thing. As I understand it, it can take as long as a couple of years for everything to fuse--but sometimes, not that long.

I with you the best of luck! Oh, if you could stop smoking, that would help with fusion, also. I know that has to be very, very hard, though. As far as crying is concerned, believe me---sleep deprivation can make you cry and cry. And, OMG, just everything you've gone through.

Hang in there (you, too, Susan). I hope this information helped.

Hugs
Jan
No one is alone who had friends.

stitch
Posts: 168
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Location: Virginia
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Post by stitch »

http://www.ans-medical.com/patient/basi ... /index.cfm

Jan this is the site where I would be using for my back and I believe it's different. Thanks Jeannie

Susan I sure hope you are getting help today. I had a melt down this morning and it scared my husband big time so we are seeing someone on Wednesday. Good luck Hun :wink: Jeannie

SquirmingSusan
Posts: 2991
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
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Post by SquirmingSusan »

And then... a miracle occurred. I got to sleep at midnight last night. I've been working it backward from 4am, and I actually got to sleep by midnight. Of course, I had to get up at 4am to take my son to the airport, but I can always sleep in the morning, so I got back to sleep.

And I'm getting sleepy tonight, too. I have procured some Welbutrin, no thanks to the doctors, and I think it's starting to do its job of helping straighten out my dopamine system.

Today is the first day that I haven't had any leg pain or any RLS stuff at all during the day, since before I took that darned Requip. I had some arm pain, but not leg pain.

Emotionally, I'm very fragile, but feeling a bit better. I've been to 2 emotions anonymous meetings in 3 days and that helps. If I can get in to see a psychologist before I fly out of town on Wednesday, I'll do it, but I doubt that's going to happen.

Anyway, I figured I'd better check in or you all would be worried about me. This is one depressing condition. Has anyone else noticed how many of the new people who are joining this forum are suicidally depressed? I guess we just have to hang in there and those who are being successfully treated can give the rest of us hope.

Susan

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
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more adventures with doctors

Post by ctravel12 »

Hi Susan I am so glad that you are doing better. Being sleep deprived can be miserable and am glad that you are sleeping better and your rls is doing better.

Good luck and keep us posted on how you are doing.
Charlene
Taking one day at a time

stitch
Posts: 168
Joined: Wed Feb 14, 2007 8:47 am
Location: Virginia
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Post by stitch »

Susan that is wonferful that you are getting some sleep. Everything work's different for people. I am working my way off the wellbutrin because all I did was cry.

Also, started going to bed earlier and here I am at 4am walking and kicking. I am suspose to be getting off the requip but I had to take 1 just now and lyrica at 4am when the left leg woke me up. They are still kicking :(

I sometimes feel like I am working backwards with this, things were good for afew days, all but the crying. Then Monday morning I had a complete melt down in the shower. Scared my husband and now we are going to see a councalor on wednesday.. I wish someone would get the meds right.

Susan we seem to be going back and forth with this sleep and no sleep. I am sorry but I can't typing any more, have to get the leg to stay still. Love you all and take care Susan, Jeannie

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

Post by becat »

Hi Ya'll
Susan you brought up something I think about all the time meeting new people here, even some of our older members.....Hopelessness, depression, and the thoughts that, hopefully, stay only thoughts and never action.

It's fact that I stay here for several reasons.
1. I'm a lifer of the RLS disorder. Its been normal my whole life. Unless I get lucky and research catches up fast or God Heals Me...I'm always going to be a person that lives with RLS. As my grandmother did, far braver and gracefully than I could hope for.

2. I found this site for the second time in 2004 and honestly had to get my guts in order before I ever posted. I had gone past rock bottom and was really trying to follow my doctors wishes. He asked that I come here and get educated, find some support, as part of my treatment.
When I did post, I was met by an angel, a small group of angels. ( Makes me cry to think about who I was then and how well the cared for me until I could fly myself.)
These people understood something that was so large about my life and so hidden. The were really torked off like I was. That treatment was hard to find, and then, life long for most of us.......It was so overwhelming. To little to learn and so many to be educated.
There was a joy in really knowing I was NOT THE ONLY ONE.
This board gave my life back to me, the people on it and the way we shared. Good people. Real life heroes in my book.
I knew early on I owed this foundation and this board, these people, I owed them something. They gave me so much. Still do.
I never wanted anyone to feel alone in this again. No matter at what level you suffer, how you treated it, or don't......No one will be left behind here. I'm lucky that there are several people that feel the same.

3. I have been chemically depressed, because of a medication I took. It was nothing like I had ever dealt with before. Thank God I knew enough to start trying to figure it out. Again these people here gave me a wonderful education.
I have been depressed because life happens. We have depression for good reasons to get us through and deal with traumatic and painful times.
I could be wrong, but I always thought that it was important to be sad when life calls for it. That reflection is the inspiration of growth.
After a lifetime of painful, but manageable RLS.....12 yrs ago I was thrush into 24/7 RLS. Morphed as my doc puts it. I wasted 7-8 yrs just living or trying through it. I wasn't raised to go to doctors and medications were always a NO in my family.
When I did start looking for help it was expensive, painful, humiliating, and time consuming. It took yrs to find and a couple of yrs to help.
However, I never got depressed........I was hopeless that things could change. Get better.
What that small group of angels and I learned along the way was not easy, but worthy for sure.
I had to grieve for who I use to be, who I was now, and who I would never be. That lady I thought I'd grow into.
I'm not who my husband married and not who I thought I'd be....or what I would be limited to.
My career choices changed. My focus changed. I had to learn to stand proud in my family using medications.( sounds silly to many I'm sure)
I had to find my fight. I owned it at one time and it slowly got eaten up by my health issues, which mounted as the RLS got worse. I know now that sleep deprivation will do that faster, than bad living.
I found my fight. I found my voice. I am finding this me, who I can be.
Others can find that too, it's all here in the post......the people.......the hope is ours to have. Some days others row for me, many days they have.....but we are in the same boat and we are headed to the good side.....we row for each other and change those thoughts to good ones.
Hopefully at least. God Help US that stays true.

I look at this board like the ship, if we have to pull you off an island or find you afloat, no diffenece.......we are here just for that. Your not alone, your not going to drift alone, or climb up a tree alone.......our ship carries us all.
Sorry I didn't mention you needed a snack to read all of this. :D
Love and hugs and a moon full of love.
Lynne

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

Lynne, I have read your post many times. It is a sad, tragic, but true commentary about the misundestood and underestimated raveges of rls/plm. While conveying this sadness and truth, your post is filled with resolve, resolution, and, I think, peace. You have penned thoughts which I have thought then tryied to forget and am afraid to think again. What strength you must have and how proud your family and friends should be of "who you have become" despite enduring all the adversities of this evil. They are lucky to have you. I sincerely wish the future will be kind and gentle to you and to all who visit this place.

If we are afloat and this board is a ship then you are a shiny beacon in the night.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

Polar Bear
Moderator
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Location: N. Ireland

Post by Polar Bear »

Lynne, I was very moved by your post. I joined this board about 3 months ago, and more and more I am drawn to it, just to read, to learn, and to see how folks are doing. Thank you for your thoughts,
Betty
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

stitch
Posts: 168
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Location: Virginia
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Post by stitch »

Lynne,

I have read your post about three times now and there is so much to understand and learn that I know I will probably read it several more times.

We all live with this terrible thing called RLS and some have it with pain and others kicking and the list goes on, but it still comes back to one thing RLS.

Sometimes we have it under control like I did for a few years and then we hit a bump in the road or maybe a pot whole and we are back to square one again, or at rock bottom. I have been through all of them while in a very bad marriage for 22 yrs and that didn't help. But each time I picked myself up and put my hat back on, worked my way back up the ladder only to be kicked off again.

And yes now I have a very understanding husband that only wants the best for me and that is to be pain free and a good nite sleep. There are many other things he wants for me but we will just talk about these two things. LOL I have had lots of good nites sleeping but then things happen and it all come back and this time it was too much for me to handle. That is why I can understand where Susan is coming from and being at the end of her rope. I am so glad we get to tie a square knot in the rope and hang on.

I did go see the counselar today and hubby went to and I think this is going to work and help me rethink some things and try to do some of the things I use to love doing but taking it all slow. I didn't get the name stitch for nothing, I love to do counted cross stitching and maybe I can do that again and knit and read but small steps to start with.

Our stories are all very different but they are all the same RLS and dealing with this problem. My RLS does not cause me to have pain but the need to move them for hours. My pain is from the 4 back surgeries and I hope we are once again closing in on that problem.

I start the water therapy tomorrow and I know that will help because I have done it many times already. Seeing the Counselar will be good and now I hope the pain doctor can help me to decide which way to go with that.

Like I said before this is a nice soft place to fall and everyone here understands in different ways what we are going through. So Susan hang in there. Lynne you are becoming my dear friend and seem to understand me so well and that in it's self is scarey. Charlene, Ann, Mark, Jan, Donna and so many others thank you again for being my angels and soft place to fall. And yes I will teach you all the electric slide.

Everyone take care and if I missed someone's name I am sorry, so lets all fall into our sofe spot and love you all for being here when I need you, Jeannie

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

Post by becat »

Thank you all for your lovely warms words.
I'm just doing what someone was willing to do for me. That is nothing bigger than most of us do in any given day.

To Mark, I thank you for your wishes. I hope my family is proud to have me......they don't really get a choice, I'm sticking around. Like I will be here.
Honestly it's just been my life, I'm jut trying to live in it.
I also find you a kind soul and someone that never waivers to offer much needed support around here. A blessing lives in your heart my dear sir.

Betty, Your welcome. I did just the same thing. Only difference was the highly charged air about the people here when I started....They believed action and we all worked together to bring a bigger voice to this community. It was my honor to have found them when I did.

Stitch, my dear you are right. I am your friend and I do understand.
Life will go on without us and we'll never get to dance, if we only wait for the perfect song. I like to dance to anything, so Electric Slide is fine by me. Doesn't have to be perfect, just filling and fun.
We need that know in the rope don't we.
I, too, understand where Susan is coming from......I just wanted her to know that one day it could be far better and much different than today.
Like you have said to me before we have good days and bad days. I'm here for both and often share my good and bad just the same.
Our path is one that is being cleared as we go.

I love you all, for it is you that rows for me and that I will willingly row for any day.
Lynne

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
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more adventures with doctors

Post by ctravel12 »

Hi everyone. You know when I finish reading all of these posts I just thank God what a wonderful group of friends who are now my endearing family that I have..

I do not know what I would do if I did not have each and everyone of you to rely on. If I have never said thank you before, well I am saying a big thanks to all of you and love you all from the bottom of my heart.

You have been there for me in good and bad days and I want to make sure that I am there for each of you always.

Thank you a million of times.
Charlene
Taking one day at a time

D4
Posts: 120
Joined: Sun Oct 29, 2006 1:33 am
Location: Illinois

Re: more adventures with doctors

Post by D4 »

ctravel wrote:Hi everyone. You know when I finish reading all of these posts I just thank God what a wonderful group of friends who are now my endearing family that I have..

I do not know what I would do if I did not have each and everyone of you to rely on. If I have never said thank you before, well I am saying a big thanks to all of you and love you all from the bottom of my heart.

You have been there for me in good and bad days and I want to make sure that I am there for each of you always.

Thank you a million of times.


Charlene, you said it best. I feel the same about this group. My husband is surprised how I NEED to check this board every day and how I open up so much here on what I'm going through. I try to explain that nobody understands like you guys do. I'd be completely miserable without this group because I'd feel so alone in this.

Diane

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