Hello from IN!

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Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

I checked that list of meds out and I dont see anything that I may have been on 3 months ago.
This actually all started before the winter last year and I didnt know what it was so I went to the ER and they gave me Flexeril and Ultram and said it was parastesias..
I was given a shot for nausea in the ER but that was only 3 weeks ago and I dont know what it was..
My symptoms were already severe at that time..
I dont know..

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

I am guessing that not knowing is pretty frustrating...
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.

Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

It really is.
I dont like to complain but Ive never experienced pain like this..
I have all those symptoms so I have a pretty good idea but they keep sending me back and forth I guess to rule out underlying causes but in the meantime, Im still hurting and getting hardly any sleep..
Not sure if my dcotor knows much about RLS because he referred me to the Neuro for all my leg problems..
Im gonna have a big talk with her Tuesday about all this and maybe try out something strong like Ultram ER or something..
I dont know what else to do or where to turn..

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Jeff, I think the pain part of RLS can be a bit difficult. Initially, pain wasn't considered to be part of RLS. Even now, some docs feel that intense pain isn't RLS; for example, when explaining how pain can be part of it, they say things like even tickling can become painful over time. But, people with pain and RLS don't equate it that way. It's not the creepy crawly that gets painful because it doesn't stop.

But, that said, shooting pain isn't really what I think of as painful RLS. Neuropathies can be burning, but also shooting. People with fibro often talk of shooting pain in the legs. Pain that shoots down from the buttocks is consistent with sciatica, which is unbelievably painful, so says my mother and a brother-in-law. Back problems can also involve shooting leg pain. People with MS also complain of pain in the legs.

Some of us guess that there are either multiple "types" of RLS and they don't yet distinguish them and/or that there is still something else happening that is yet to be identified (something that comes with RLS that isn't yet known). Either way, the docs have to call it something and that's usually RLS.

Because there still could be something else happening, please consider that you have RLS AND something else. While it may be RLS and nothing else, if it is something else and no one presses to find out, it could be serious. Sometimes someone here will assume only RLS for years, only to eventually find out it's RLS plus something else.

You may have to try different drugs in different combinations. When taking them, try to see if they help resolve different things. For example, maybe the need to move goes away but the pain is still there.

Zach mentioned a diary - this could be really helpful. Include anything that helps or hurts, too.

I hope you get answers quickly.
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.

Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

I appreciate all the feedback.
I bet a diary would look the same all the way down the pages for me! :lol:
It's the same old stuff each night..
I woke up with a painful charley horse again this morning as I do alot..
I'm open-minded about this.
I know it could something completely different but I know RLS is involved for sure..
I think they should give me something to calm my legs and then do an MRI seeing as I cant lay flat for very long with my legs the way they are!
That sleep study the other night was horrible!
Thanks again!

Neco
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Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
Contact:

Post by Neco »

It sounds like you really need to push hard for an opiate of some kind.

I know you said Vicodin made you queasy, so just keep in mind, other opiates may do that to you too, and with some of them it may actually go away after the first couple of doses.

Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

I dont think I wanna gamble pushing for one up front the first time but then again, Ive been through this long enough with no relief.
Maybe I should..
I really appreciate you guys.
I gotta go see the Neuro tomorrow so Im hoping for the best!

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Jeff, I hate to be the one to say this, but.....here goes.

Keep a part of yourself skeptical for this appointment. Many of us have been in your shoes and it's almost impossible not to lay everything at the doors of this appointment. But, it's very possible that this won't fix everything....or even anything.

The neuro you see may not get this. He or she may only see part of it or not have the education needed to handle this (but won't admit it or even know it).

I want you to come here tomorrow and say, "Hey, this neuro is going to help me and it looks promising." But, I also know that you might have to come here and say, "Hey, this neuro is an idiot," or "Hey, this neuro only wants to use Mirapex," or, "Hey, this neuro wouldn't even listen to me."

I hate this part about seeing new doctors. Hate it, hate it, hate it.
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.

Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

I know what you mean.
Ive seen her once before for an EMG (which looked good).
She's also a sleep specialist so Im *hoping* she know's about RLS..
She did mention "you may have Restless Legs" last time I was there for the EMG..
I hope for the better.

Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

Ok, well I seen the Neuro today and a diagnosis of RLS was made.
She's starting me out on Sinemet and I'll find ot what dosage when I pick up the meds..
Hope that helps.. :?

Neco
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Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
Contact:

Post by Neco »

Sinemet?

Good god man... Well, ok I guess.. At the FIRST SIGN OF AUGMENTATION you need to flush it down the toilet... I know its kind of expensive but Sinemet has one of the worst augmentation rates in history. And if you keep taking more to try and keep it at bay you'll end up miserable.. I did this to myself 3 times of my own accord because I simply could not secure opiates until my refill wait was up, but it was not fun either.

Did you take the Algorithm with you?

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

My reaction to that is the same as Zach's. Sinemet?! According to all reputable sources that I've read (Mayo Clinic thingee and others) Sinemet is NOT to be used for daily RLS. So yeah, ditch it at the first sign of augmentation. I know that a couple people around here have been able to take it daily without problems for a while, though.
Susan

Jeff
Posts: 29
Joined: Fri Jun 12, 2009 12:04 pm
Location: Greenfield, Indiana

Post by Jeff »

So with ahving the symptoms 24/7, Sinemet isnt recommended?
I told her it was a 24/7 thing and I forgot the algorithm(my thinking has been off lately)..
I dont really notice when the symptoms start so how will I be able to tell if augmentation kicks in?
Bare with me, this is all totally new to me.. :?

ViewsAskew
Moderator
Posts: 16216
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Ditto times 2 -

Sinemet CAN be a great RLS drug....just NOT for daily RLS.

Grrrrrrrrrrr :twisted:
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.

Neco
Posts: 2297
Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
Contact:

Post by Neco »

When you augment you will know it.. Believe me.

Your symptoms will get more intense, then you will notice a pattern of them clearly appearing earlier and earlier as the days go on. You may find yourself slowly losing efficacy as well.

That is how my augmentation started.. I took my meds, and then that dose wasn't enough, I would take additional doses until I finally fell asleep. That went on for 2 weeks.

Also even though I tried it several times, each times many months apart, each successive time I tried to take it, it became insanely worse to cope with, to the point where I blew through 30 pills in less than a week on my last attempt.

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