Am I in a parallel universe?

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.
pedrime
Posts: 82
Joined: Sun Dec 09, 2007 7:29 pm

Am I in a parallel universe?

Post by pedrime »

Just wanted to post a lighthearted comment to diffuse my RLS frustration. Seems like every time I check this forum someone's doc OK's opioids for their treatment (and I can truly feel your relief).

Am I really on the same planet as everyone here or on the "Lost" island? All I ever hear from friends and family is how drs undertreat their pain and practically make them beg for opioids. This includes my elderly, suffering dad who takes them as rarely as possible and a cousin who had a stroke and is in an extended, painful recovery process!

I've waited 1.5 weeks for my 'wonderful' neuro to send me a script for PNEUMATIC LEG COMPRESSORS!!! Not even a pharmaceutical!!! And I've posted previously about my experience with acquiring opioids so believe me...with the Requip not working out I am not entering that battleground again anytime soon.

What is going on here in Cleveland Ohio?? :roll: Arrrggghhh.

SquirmingSusan
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Post by SquirmingSusan »

Pedrime, unfortunately no, you're not in a parallel universe. You're in the same frustrating one that the rest of us live in. It seems like most of us who take opioids have struggled a lot to get the meds. I know I had to live through a nightmare before I finally got some relief.

Hang in there. It's worth the fight to get relief.
Susan

ViewsAskew
Moderator
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Location: Los Angeles

Post by ViewsAskew »

Ditto. Good heavens have most of us struggled. Not all, but many.

I actually drive over 60 miles to see my doc because I cannot find one closer who will treat me with the same treatment. Each time I drive in the Chicago traffic, I tell myself how lucky I am to have just this one doc.
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.

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

Post by Sojourner »

P, I do think it is the luck of the draw. I won't mention the "Mistake by the lake" thing and if I do it is only in a good natured way :). You just have to keep at it or think about changing. What are the reasons given for not prescribing? Right now I am pretty luck as my doc typically will list and ask me what I think and need. Hope you have better luck in the future.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

pedrime
Posts: 82
Joined: Sun Dec 09, 2007 7:29 pm

Post by pedrime »

As always, thank you for your reassurance. Sometimes just feel like I'm losing it. Think I sound articulate, I keep things low-key, know how to play the docs for lack of a better description. So not coming off like the nutcase I truly am when dealing with the docs office.

So 1.5 weeks later call the office today very sweetly asking if there's a problem with my request, sorry to bother them. Get a condescending speech from sec'y about the leg compressors not very well documented, doc prefers I stick with the dopamine agonists. Tell her gained 7# in 5 weeks on minimal dose + wake up every morning crying when I am an otherwise sunny person.

'Script's in the mail today' Aggggghhh.

Ohh and Mark, tease away about my hometown. We've done much to bring on our fate--voting in the same lousy politicians, poor city planning/architectural decisions, you name it. Just a matter of time before my family will have to move due to lack of opportunity. IMHO

Neco
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Post by Neco »

That sucks.. The last time I got any kind of looking-down upon by a secratary I told my doc, and he said they should not be doing that, and if it ever happens again to tell him and he will take care of it..

I've been pretty lucky with my doc.. He seems fairly educated about a lot of stuff, even if he isn't an expert by any means. But he has been very open minded and lenient about my use of opiates.

Cowboy Dave
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Joined: Wed Aug 15, 2007 4:42 pm
Location: Tennessee

Post by Cowboy Dave »

I'm with you. Dr.'s act like your some kind of dope addict if you ask for pain relievers. Nothing has helped my RLS except pain releivers and all I can get is a mild darvon. Releives some of the pain, but I still kick and switch myself to sleep each night.

Sojourner
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Post by Sojourner »

CD, Don't recall seeing any of your previous posts. If I have not welcomed you before...welcome. Love the handle.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

lorabell
Posts: 84
Joined: Sat Jan 12, 2008 4:14 am
Location: NO. IL.
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Our Universe

Post by lorabell »

Hi, our basic problem is our universe is so different from a normal persons. lol Normal people sleep at night, some even sleep all night.
What we need is better teaching methods for sleep disorders, which is pretty low on the totem pole.
I went to the ER thur, 21, for a shot of demoral and got the same darn dr, I had last year. I was so bad I called a friend to take me and made her go back to the exam room with me. She was stunned by the dr. He told me he couldn't give me a shot, so I said, call my pc an he'll ok it.
He then asked why I hadn't called my pc and I told him, it's his job, that's why I was at the ER.LOL He had no clue what to do so I said, "just give me the phone and I'll call for you "so he did it all by himself.lol
My dr. , bless the man, ok'd the shot, and I went home dopey, but happy and basically slept for 4 days. wonderul, blissfull sleep.
When I reach the point that I am walking into walls and faling over the coffee table,and crawling al over the floor, it's time for drastic measures.
My friend was amazed at how the dr. reacted to me. When he told me to lay down and relax, I explained to him, ( very nicely I thought ) that if I could lay down and relax, I WOULDN;T BE THERE !
I had a follow up appt with my dr. on Mon and told him the guy ws a moron and he needed to be talked to.
The nurse was more sympathetic, but still had no clue about rls. My bp was up too high, and i said, " I haven't slept for 4 days and nights, that might be part of it ", she said, ' "oh, you need to get some rest, "
I still kept my cool, but , it wasn't easy.
By the time the moron came back and said I could have the shot, i was leaning into the counter and rocking back and forth. Nurse gave me the shot, and I got to go home.
You should have seen my friends face when i climned into her front seat and faced backwards so i could kick on the way to the ER.!
We just have our universe that not many understand and even less that want to.
I think we should all start a letter writing campaign to the heads of hos. encouraging them to give more time to studying rls and plmd and sleep disorders in general.
I wish our universe was as easily understood as some of those with other serious problems.
Maybe someday, huh. Till then, embrace our universe, it's the only one we have.
Lorabell
aka
wowobl
Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

ctravel12
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Post by ctravel12 »

Oh Lora good post. If we could only educate the drs. that is why we tell everyone to arm yourself with as much info before seeing a dr. I am not saying that will work 100% but it is at least a start in the right direction.

Lora so sorry for what you had to go through. No one should have to go through that but sorry to say but alot of us have.

I hope that you are having a better day today. Please take care of yourself my friend.
Charlene
Taking one day at a time

lorabell
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The E R

Post by lorabell »

Hi Char.
Thanks for the empathy.
I was glad that my friend saw first hand how an rlser is treated. Now she is worried about me bless her heart.,
One thing I plan on doing when I restart the support group is ask about a meeting with the different dr;s to try ro educate them on how to treat us in the ER. .if we are didn;t feel so lousey , we woldn't be going there.
I am doinng much better today.
Again, the group here has pulled me thru.. How gratefull I am, how fortunate to have such caring pwoplw to lean on. Hugs,
Lorabell
aka wowobl.
Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

pedrime
Posts: 82
Joined: Sun Dec 09, 2007 7:29 pm

Post by pedrime »

Really sad to read these follow-up posts. Some advice--work on your con game. I have 13 yrs sales experience and as such am a pro BSer. Have learned to never outright ask for the pain meds, or reveal too much knowledge about medicine. Could hurt the doc's fragile pride.

Am currently playing along with my doc, pretending to worship him, be the model patient. This may take months or even a year ++ but if I'm out of options and the guy's a true RLS specialist, what choice will we have but to explore the last resort.

Not happy thinking about length of time it may take but I pray a lot, try to think about people worse off than me, and believe in "The Secret" and what's preached in "A New Earth" If you think it, believe it, it will come.

Good luck everyone. About to go tourniquet my legs in heating pads.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

Why not just simply discuss pain meds and how they are known to help RLS,(actually they are recommended on RLS web sites as a good med for rls print that out and give to your Dr) then ask if you could simply try them with a prescription of 30 pills per month. Use those 30 pills wisely and you might be surprised at how your Dr will work with you on pain pills later. I have been seeing this Dr for almost 2 yrs, I have prescription for hydrocodone 30 pills per month, then I also have a prescription for Ultram, between the two I am able to control my rls most of the time. by taking one BEFORE my rls kicks in.

I went to the Dr last week to have all my prescriptions renew for 6 mos, the Dr ask me "do you need MORE hydrocodone pills", I politely said NO thanks I am doing just fine with rotating the two pills. I dont think I will ever have a problem getting him to prescribe more hydrocodone IF ever I feel the need for them! You do have to build up confindence in your Dr, by letting him know you are not seeking pain pills. Yep there are times I could use afew more hydrocodone some months, but I would rather suffer a few times in a month than to take a chance of my Dr saying NO more pain meds! This does not seem fair to those of us that really need this drug to control our RLS, but I will continue down this path, simply because I well remember what it was like to have NOTHING to help my with my RLS.

Now having said ALL that, I only have RLS at night, I do have it every night, but I dont often have it during the day time. So I am sure that makes it easier on me to get by with less meds.

lorabell
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Mack

Post by lorabell »

Hi Mack
I agree with you. I only accept the rx's when it is time. My Sleep Dr. is wonderful, and works with me to keep my RLS.PLMD under control. He wsn not happy when i told him about the Dr. in the ER. I asked him if he would have the time to back me up when I try to get the local Dr.s to a meeting. He said he would. Gotta love someone thst is so good and so willing to help. A good Dr.is worth his charges.
Hugs,
Lorabell
aka
wowobl
Always remember, if you cut off your limbs, you'll have phantom rls and nothing to rub .LOL

Neco
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Post by Neco »

At this point I'm happy to make my meds last a month.. Which I did do this past Feb.. Walked out of my appt today with a script for now and 2 more for the next two mos.

As long as I keep being a good boy and handing my pills over to my mom, I think I'll do alright, and maybe even develop a habit of responsibility when I have no one to hold them in the future... Well a guy can dream can't he :?

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