Restless Legs Syndrome (RLS) Discussion Board

Betty enjoy your 10 days off and you are more than welcome. Here's hoping sleep comes your way and stays that way.

Naaaah... No sleep, tried at around 2am, tried for an hour and ended up in the spare room, got an hour or so around 5am. Office xmas lunch today... I've been reducing my sleeping med to half, but think I'll forget about that and up it again.
Well here we go, last day.... boy .. I'm really looking forward to this.
Betty

Randy, I know exactly where you are coming from. I'm on medication to help me sleep, oxygen and CPAP, I'm doing the healthy sleep habits and still can't sleep. New tests? What for? Bah, Humbug! With that said, please go in at some time and get the test done. Rule out all you can and maybe they will find out the problem and fix it. Sorry so very much for the pain, trouble, confusion, sleeplessness, etc that all are suffering everywhere. Wish and hope that 2008 will be better.

Now I know how you all feel. Before...when I was on Vicodin EX twice a day I always wondered why you were all in such discomfort. I wondered why don't they just get on Vicodin? Till my Neuro refused to put me back on it.
It has come full circle around to me.
I am an complete and utter misery right now and I've had one of the toughest weeks of my life. My legs hurt so bad right now, my RLS is really intense, it is relentless in my legs and in my arms and shoulders.
What am I gonna do? Take a Klonopin? I've taken them when it's real bad and guess what, I get very very sleepy, yet unable to sleep because of RLS. It's double misery. Shall I take a 200mg Lyrica? Maybe two? Maybe four and just fry myself.
I've discovered that Ultram works very well for my leg and foot pain for a week and a half (it doesn't do anything for RLS) and then it starts making my legs and feet, ankles and wrists ache and makes my brain feel like Satan is sitting next to me. (well maybe that's an exaggeration). I'll never take another Ultram.
So here it is. One of the worst weeks of my life, RLS/Pain wise. I called off work Tuesday. I woke up when the alarm went off. Put my clothes on and that's as far as it went. I knew I was never going to make it. I just couldn't do it. I made a phone call and just sat there. I went to my family Doctor that day and basically said, just give me a note for work...I've had it with you guys. What'd THEY GO TO FLIPPING MEDICAL SCHOOL FOR?!?!?! I've made it to work the rest of the week, just groaning and grunting my way through. One more day.
Sitting is no comfort. This has helped, getting my mind on making my fingers work at something.
So...sorry. Don't wanna be a bummer. I'm off. (I really mean OFF)(!)

Oh WAM I am so sorry for what you are going through. I wish that I could take the pain away. If I could I would do it in a heartbeat.

I hope that your dr can give you something that will give you total relief.

You are not being a bummer. We are here and will give you the support you need but I know right now you want the pain to stop. If this will be any comfort to you, I will add an extra prayer for you.

Please take care and let us know how you are doing.

Randy I am so sorry to hear about this, sounds like your doc and mine have been talking. Long story.

I know where your at, gosh I lived that way for 7,8,9 yrs. and no, I have no idea how I'm still here.

I wish I could take it from you, I would my brother. It's a day at a time, and then there are those days its moments at a time. I know it seems there are few choices, but you have some. No it;s never easy to find a new doc. and if you have to, go to the ER if it gets too bad.

Nothing good has ever come from just plain suffering. I'm sure you understand what I mean by that, its just lost time and suffering.

No I don't get it why the docs seem to fight against us.
No, I don't want to be understanding when my family here suffers, or me for that fact.
NO, I no longer wish that no one speaks up for us, its not right.

Advocacy is needed and in a huge way.
I'm sad to hear this my friend.
I have hope though, yes I honestly do. See, it takes more than one voice to change things.....sometimes. We need to start screaming again.

Tender hugs to you my brother, prayers so many flying to our moon, and mail on it's way tomorrow. You'll understand when you get it.

Love Lynne

Randy, I am so sad that you are unable to continue with a regimen that was so successful for you. I don't get it. It's bad enuf trying to find something that works and then when you find it they take it away. I don't get it. Is the banishment of the vicodin permanent? Is it possible to ask the doc to prescribe it on some type of rotating basis or something such as one month on one month off or something like that. Did he give you a reason for not continuing? Like others, I will keep you in my thoughts and prayers and hope the doc comes to his senses. Best wishes, my friend.

M.

WAM, it just breaks my heart that your doctor is making you suffer like that. I really hope you can find a new doctor/clinic who is helpful. Is there any way you can book a flight to LA and see Dr. B? Or go to a pain clinic? I know it can take months to get into a pain clinic, but it can be worth the wait.

Big sigh. I hate the government regulations.

Okay, where is this doctor and how do I get to him? I have my pointy toed boots ready and all I ask is that he bend over.

It's easy to sit here and say "try a new doctor", yeah, where and how? Fuss and fight with the current doctor, usually doesn't get you anywhere. Maybe if you try emailing Dr. B and asking for advice? What would help us is if we had a staff of doctors who would be willing to talk to our doctors when things like this happen. Maybe hearing from another professional, one who is knowledgeable about RLS would help. And maybe not.

Along with everyone else, I wish I could take this away from you. We could spread it around. Share the wealth...

Love ya, Ruby

Randy

It makes me sick to think you are going through this misery..and for what?! Because a doctor, in his"wisdom", decides you shouldn't or don't really need to take Vicodin again? Geeze!

I totally---so totally--understand your frustration. As Ruby said, it's so easy to say "get a new doctor--try a new doctor". I've been there, Randy. Starting over with a new doctor, going through all of the history (not to mention why you left the old doc), just isn't that easy to do. Sometimes, it seems impossible. I know!! I could go on and on, but that doesn't help you.

You are such a great guy, Randy. You are full of life, love your family so much, have so much to offer society. It's a darn shame that you have to live like this. Well, it's a shame anyone has to live like this. I think one sure cure (possibly) for these doctors in their ivory towers is to spend just one day and night living in our bodies, feeling what we feel, going without sleep, being utterly miserable. I'm sure they would deem that cruel and unusual punishment.

All I can do for you is listen, be your friend, and pray. That I will do, Randy. Hang in there, my friend, and please let us know how you are.

Hugs
Jan

All that love makes it better and I aint just saying that.
Thank you.

Tami told me today she thought she was going to have to take me to the emergency room. I layed down on the couch in front of the fireplace where it's warm. After getting up and down, walking around talking to myself a few times, I was down again and drifted off, but the next thing I know the devil woke me up (figure of speech)(I hope) and I'm not exaggerating when I say my arms and shoulders, thighs and calves were their own entity. I probably said that wrong.
I was so miserable. I was flailing around on the couch, first my legs kicking and shaking them, then my arms. Good gosh I was so miserable.
She walked by and put her hand on my head, I knew what she was doing and she asked me today was I conscious when she put her hand on my head. I said yes she said she prayed for me then went to bed.
In a half hour, I got up...and I could barely get up because I took a 200 Lyrica and one and a half Klonopin and I was just so darn tired anyway and then stumbled into the bedroom. It was cold in there. I layed down and went to sleep....just like that. I felt really good today. Tired. My legs were fatigued and my feet were hot and really really tired but my body felt good and no RLS yet today.
So there it is. My life story.

Tomorrow I'll tell you about the time I bought my first car. It was a 1971 Plymouth Duster, orange with a black vinyl top. It smelled like beer inside and did great brake torque burn outs. It had an 8-Trak player in it and Bob Dylan "Blood on the Tracks" was continually waifting out the windows, especially the drivers window that wouldn't roll up for awhile. But I'll save all that for next time.

Love you all and thank you
Randy

Randy thanks for posting that. You have a wonderful and caring wife and loves you very much and know that it is mutual between the both of you.

I am so glad that you finally went to sleep last night and thankfully no rls today.

Looking forward to hearing your story about the 1971 Plymouth Duster.

I also said an extra prayer for you last night and tonight too.

Walking After Midnight wrote:Tami told me today she thought she was going to have to take me to the emergency room. I layed down on the couch in front of the fireplace where it's warm. After getting up and down, walking around talking to myself a few times, I was down again and drifted off, but the next thing I know the devil woke me up (figure of speech)(I hope) and I'm not exaggerating when I say my arms and shoulders, thighs and calves were their own entity. I probably said that wrong.
I was so miserable. I was flailing around on the couch, first my legs kicking and shaking them, then my arms. Good gosh I was so miserable.
She walked by and put her hand on my head, I knew what she was doing and she asked me today was I conscious when she put her hand on my head. I said yes she said she prayed for me then went to bed.
In a half hour, I got up...and I could barely get up because I took a 200 Lyrica and one and a half Klonopin and I was just so darn tired anyway and then stumbled into the bedroom. It was cold in there. I layed down and went to sleep....just like that. I felt really good today. Tired. My legs were fatigued and my feet were hot and really really tired but my body felt good and no RLS yet today.
So there it is. My life story.

And, THAT, my friend, says it all. You are a wonderful man with a wonderful wife. You are blessed beyond belief. I wish I could convince you what a wonderful writer you are, as well.

Thank you for posting this message. I'm sure it will give hope to many who read it. Now, about that 1971 Plymouth Duster.....

Fondly
Jan

Randy, In my prayers that you will have many more good days ahead.

M.

Hey Randy

It's wonderful to know that you have such a supportive and understanding wife. I think that's half the battle sometimes ... our significant others sometimes arent quite sure how to handle us when we're kicking and thrashing and demanding access to chainsaws; but once they've got the gist of things it surely does make what's usually an horrific ordeal a little easier to get through.

Sucks that you're having such a gawdawful time after such a great run. I sometimes wonder if we jinx ourselves; we get to the six month mark of having everything down to the right mg or mcg and then suddenly *BAM* we're back at square one ... again. I envy those in our midst who have managed to find a blend of things (both medical and non-medical) that have worked for years.

Keep your faith and wits about you. It will all come good again.

Love ... hugs ... and positive thoughts for both you and your wonderful wife ...