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

answer to all

Postby becat » Fri Sep 10, 2004 9:16 pm

n/a
Last edited by becat on Mon Dec 28, 2009 2:02 am, edited 1 time in total.

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

report

Postby becat » Mon Sep 13, 2004 3:53 am

Hi everyone,
I just wanted to check in and report that I am still doing beautifully with my new path. I messed up Friday and had a Coke to late. That kept me up til about 5:30 am.........I learned my lessen the hard way. Lesson Learned.
We had a short car trip on Sat. and it made me a bit sore and I did a few gymnastics in the front seat, but all in all it was ok. I would probably say that it was the lack of sleep the night before.
I wanted everyone to know, I THANK YOU for your support and your loving care. This place, these people have given me more than I ever thought was out there for a kid (ha) like me. It's been a wonder and a half to have the shoulders to lean on, ears to listen, the hearts to open, and the education of a lifetime.
More importantly, ya'll make me feel braver than I would ever be alone for MYSELF. I like knowing that I might be helpful, and supportive to you as well. It's a gift to feel needed, isn't it? I think the fighting spirit I have always had, just gets tougher knowing what I go through might change it for someone in the future. You all give me the back up and the kick in the pants to go out there and find a life. A quality of life. Sounds sappy I know, but I'm not trying to be. I sincerely care for many of you I've gotten a chance to know. Wonder people, I might not have ever met. You've helped me. Maybe, because I knew I wasn't alone on this path I got stronger. Maybe, because I know that if it goes wrong with the docs. I have people that understand.
I do believe together we make a bigger fist. I do believe we are here with this for a reason. I know I'm blessed.
I'll let you know at the end of the month how the GateKeeper reacts and how my progress is going.
Thank you and bless you right back.

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jan3213
Posts: 1706
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Location: Illinois

Re report

Postby jan3213 » Mon Sep 13, 2004 9:43 am

Becat, it's Jan

I know this is your Journal and maybe I'm not supposed to respond, BUT, you know me better than that by now. AND, speaking of being sappy--your're receiving a post from the Queen of Sap!!! And, I think being sappy is just fine!!!

This forum was developed to help people talk about their individual problems with a disease. However, it has another, very important side, human side. I think people need to express their emotional needs as well and I'm amazed at how free we all are to be able to do that here in this place. RLS effects your WHOLE body--not just your physical, but your MENTAL health as well, and I think you expressed it beautifully when you said that you've met some good friends here. So have I. Friends that mean something so very special because we share such a common bond that most people don't understand.

I'm so glad that things are going so well for you! You are such a special person, giving person and I'm anxious to hear your next installment!

Much love,

Jan
No one is alone who had friends.

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Postby Sole » Mon Sep 13, 2004 3:58 pm

Becat,

It's wonderful to hear you're still doing so well. Please keep updating, like you have been. It's so important for people to know when someone is finding relief. It gives us all hope.

Always adoring you! :-)
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

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

I still have hope

Postby becat » Sun Sep 19, 2004 1:01 pm

n/a
Last edited by becat on Mon Dec 28, 2009 2:03 am, edited 1 time in total.

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

shocked

Postby becat » Wed Sep 29, 2004 3:47 am

n/a
Last edited by becat on Mon Dec 28, 2009 2:03 am, edited 1 time in total.

jumpyowl
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Location: Yantis, TX
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Hello, Becat:

Postby jumpyowl » Wed Sep 29, 2004 8:45 am

This is wonderful! I know that you are putting yourself at some risk, and how vulnerable it can make one feel when not up to par physically before a great challenge.

But it is so wonderful for the SOUL! And this is so important. I feel that you will return - perhaps a bit bruised - but victorious! That is the way to go!

......but a life without constant pain is more than hopeful. My headaches have lessened, which is more than a gift. I feel I made the right choice FOR ME. I am not as hopeless as I have been the past many years. I pray it last long enough for my body and mind to heal a bit.


It was so gratifying to read this. Life in constant pain is literally hell! Perhaps hopelessness is gradually turning into helplessness which is a giant step forward. Especially, because you are not even helpless any more! You are taking charge and that glimmer of hope will do wonders.

I should write something about achieving collaboration with our health-care professionals. The tone of this web site and of our group was gradually turning to be a bit hostile - and I started it, I admit! Years of frustation can do that!

It is not right, however. One has to stand up for oneself but never in a hostile manner which often backfires. Besides, most doctors would want to help. They have a tough profession and have their own frustrating conditions to labor under.

I will write a separate post on that. Right now, Good Show, Madame! I just know you will keep on improving.

I am so proud of you, Becat, I could burst! Happy ballooning, honey! :)
Jumpy Owl

e.holquin

rls

Postby e.holquin » Wed Sep 29, 2004 11:49 am

Hi all been reading on all your forums and got lots of good info. have had rls on and off since I can remember. had insomnia on and off all my life am67yrs old .rls came on strong2yrs ago ,and dr. pres. carbi-dopa-l-dopa100mgs. 1yr later had to increase to 250mgs it does help alot if I take it every 4-5hrs. Am also on Clonazpam as needed for sleeping.Past
2months my bones on my shoulders,hands,feet hurt and Iget like shooting
pains in them. and my feet hurt alot and they get swollen. Is this the
progression of rls? I am having one of many sleepless nights 330am.
so im not too bright at the moment, This is my first post so I am nervous
Thank you. evah

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jan3213
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Location: Illinois

Hello Jumpy

Postby jan3213 » Wed Sep 29, 2004 12:00 pm

It's Jan

I'm going to "butt in" again--hope you don't mind, but I just felt like you're being too hard on yourself. You said in response to Becat's wonderful post regarding her upcoming trip hot air ballooning:

The tone of this web site and of our group was gradually turning to be a bit hostile - and I started it, I admit! Years of frustation can do that!


I have a different take on the whole thing, Jumpy. Maybe some others might see it a different way, but the way I see it is I don't think you've made us HOSTILE at all. I think you have pushed a lot of us to become more educated about RLS to the point that we know much more about the syndrome that we ever thought possible--we know much more about our own bodies. We have had wonderful discussions with other sufferers--OPEN and FREE discussions about all kinds of things, which at the time may have seemed to have had no relevance, but often turned out to have a connection to RLS. You have made us (me) remember things in our past that perhaps we would not have remembered which helped put the puzzle pieces together. Now, I'm not giving you TOTAL CREDIT here (ha!). Maybe we would have done this anyway. But, as I read former posts, I see you in the background, quietly "waiting" until the right moment, then posting a comment here and there--at least making me think about something, or suggesting something. And then, when all of this information is put together, and I can only speak for myself, I started thinking about the doctors who have treated me and I started realizing that they are not "gods"--they are humans, who really don't know much more about RLS than some of us do, as we become more educated. I don't think we're becoming hostile--I think we're realizing that we are HIRING them, that they are not doing US a favor by seeing us and making us wait in their waiting rooms for hours. I think we're finally realizing that we have a RIGHT to GOOD MEDICAL CARE and that if we don't get it, then we should hunt for the right physician--one who will LISTEN TO US. I don't think that's being hostile, I think that's being smart--that's what I think you've taught us, Jumpy!!!

Jan

P.S. This is not "flattery", Jumpy. This is exactly how I feel. I hope you take it the way I meant it!!!!!
No one is alone who had friends.

jumpyowl
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Hello, Evah:

Postby jumpyowl » Wed Sep 29, 2004 12:46 pm

I am your senior with a few years and I also started to recognize the symptoms of RLS fairly recently. The shooting pain could be the result of RLS but neuralgia can have many sources. It is also possible that you have augmentation, the drug you are taking has this effect on about 80% of the patients.

Talk to your doctor, there are other drugs that can take over and have less side effects and less chance of developing augmentation (increase of severity of the symptoms and their appearance earlier in the day). For example Mirapex or Requip or even Neurontin that would also be good for the pain.

I a glad klonopin (clonazepam) is working for you. It has a long half life so patients are druggy next day. Again there are similar drugs with shorter half lives e.g. lorazepam, that you may find equally effective, provided the long-lasting effect of Klonopin becomes a problem for you.

Welcome, Evah among us. If you would like to complete a survey form on RLS, just let me know, my private e-mail address button is shown below.
Jumpy Owl

jumpyowl
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Hello, Jan!

Postby jumpyowl » Wed Sep 29, 2004 12:57 pm

Thank you for your nice comments and I agree that you have a good point. However, if you read some of the venting you will see that doctors some time were judged severely when actually they were right. We just do not know enough to be right one hundred percent of the time. Actually nobody does. As long as we do not become personal but stick with the issue it is fine. But it is also hard to stop there. Especially if someone only slept 2 hours the night before.

I am quite sure that our discussion group here, much as I like it, do not meet with the same enthusiasm by the doctors and health personnel. I have good reason to think that. And I can see their side. Nowadays, many of them are between a rock and a hard place. They work hard, try to help patients, and recently they are getting renumerated less and less.

Anyway, no lasting harm has been done I hope but I thought that I will bring it out in the open.

Thanks also for your insightful remarks, Jan. So you noticed the nudging? I thought nobody would. Very keen of you. :)
Jumpy Owl

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sardsy75
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WOW! Becat!

Postby sardsy75 » Wed Sep 29, 2004 12:58 pm

Hey girl!

I know, it's taken me an absolute age to get to read through your "diary", and I do apologise for being so slack!

Boy oh boy, you have been riding one helluva rollercoaster with not only your RLS, but your Docs, the drugs, emotions, and life in general ... and yet, you are still with us, and have grown into a much much stronger and wiser person because of it.

The decision to fire one doctor and find another is quite daunting (don't i know it - and i'm heading for my third neuro!); but i am lucky in that i have a family GP who has stood by me the whole way ... even when i've decided that my neuro knows nothing about what drugs i should be on and have switched to self-medicating.

It is a big step sometimes to get into a public forum like this and expose a side of you that you have been brought up to keep private ... but you know that we are all here for you, day and night; and sometimes, just getting in here and "typing it off your chest" is often the much needed release that you need.

BTW, you mentioned that your migraines are on the increase; are you on any particular medication for these? If so, be very wary of the "ingredients" as a lot of migraine meds have the base ingredient of good old Caffeine!!!! I found that out the hard way with my migraines!

And another BTW, just because you snore doesn't mean you have Sleep Apenea LOL. I've just gone through this same saga with my mum; as our GP was convinced that she has it; yet my dad, my sis and myself, all know that she hasn't, and having the test would be a complete waste of time. She just snores. My hubby snores too, but he's far from having sleep apenea.

I envy your hot air balloon jaunts!!! I wish I could come with you!!! Make sure you cherish and enjoy every minute you have while you are feeling pain-free and POSITIVE. You have come a loooong way in your journey my friend and you deserve to enjoy every minute of life to its fullest! Keep looking out for Numero Uno! You are always in my thoughts and you already know how the power of praying, meditation and positive thinking can assist with the healing of the body and soul ... so keep it up!

Get out there and enjoy life!!

Take care of you girl!!

Luv and (((((BIG HUGS))))) to you
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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

WELCOME

Postby becat » Wed Sep 29, 2004 1:00 pm

Hi E. Holquin,
Welcome to our little family. We're a great bunch of people here. No need to be nervous here. You couldn't possible talk about anything we haven't already touched on and if you do that's great for us.
You've caught us at a calmer time than most. You'll soon see the board jumping as usual. We would love to have that be your first post, never your last. You'll find an education on this board. Support for your good or bad days. People that know what your going through and will listen and share with you. You may even find yourself in a position to help one of us or someone new. We hope you stick around and keep us up to date on your progress. I Have been living with RLS for all my life and I can tell you that this thread was the first big Yahoo I've had in a very long time. There's hope here, even if it is a bit slower to some than others. It's here.
Jumpy, I will respond to you a bit later........you know I have an opinion, just not too much time right now.
Love to all.

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

My soft response

Postby becat » Thu Sep 30, 2004 2:10 am

n/a
Last edited by becat on Mon Dec 28, 2009 2:05 am, edited 1 time in total.

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

Doctors, RLS, Life, etc.

Postby jan3213 » Thu Sep 30, 2004 1:00 pm

Hi Becat, Sardys, Jumpy--It's Jan

This is going to be short (and I hope sweet!). I think we ALL have made valid points. Becat, I so admire your determination and fighting spirit, which I, personally, don't find hostile (no offense intended, Jumpy). I know that you are only deeply concerned about eradicating RLS so future generations won't have to struggle with this awful thing like all of us have to. And I know that you, as well and myself, have come across physicians who are not always willing to listen, even though they may be GOOD DOCTORS in many other ways. I even had a conversation with my own GP, who is a personal friend and a wonderful doctor, who told me last week, that many doctors don't believe that fibromyalgia is "real". I KNOW people who suffer terribly from that disorder. Doctors are HUMAN--I think we often expect them to be like GOD--RLS is hard to diagnose. There is no blood test, no x-ray--all doctors have is our personal history. And, I've talked to people who have just graduated from nursing school who haven't even heard of RLS. So, evidently, they are not even being taught anything about the syndrome. I don't feel that's it's their fault , necessarily. That's why I think it's OUR responsibility to educate ourselves as much as possible. No, we don't know EVERYTHING. My goodness, no one does!! I would never profess to know it all. And, I don't think that's what you meant, Jumpy! I didn't take it that way. Lots of things sometimes have to be "ruled out". That's what a good doctor does. You're right, doctors are often between a rock and a hard place. BUT, I do know that a lot of doctors are "hard headed" and, I'm afraid Becat's right--their egos get in the way. I've had doctor'sask me what's wrong when I go into their exaiming and when I tell them what I think might be wrong, I have often gotten the answer: "I'm the doctor, I'll tell you what's the matter!" I guess this has gone on longer than I thought it would. Surprise!!! Ha! Anyway, the main concern here is eradicating RLS any way we can. I'm so glad you started the questionnaire, Jumpy and I'm so excited that you are going to be able to present it to people who might be able to help us in November!!! We can agree to disagree, but the bottom line is we agree on the important thing----that is that something has to be done about RLS!!!

Thanks for all you've done and thanks to everyone for contributing!!!

Jan
No one is alone who had friends.


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