The Pain Clinic

SquirmingSusan · Post by **SquirmingSusan** » Sat Apr 07, 2007 3:44 pm

I had my appointment with the doc at the pain clinic yesterday. He actually seemed to understand that RLS can come with horrible aching pain in the legs and arms and wherever else you get the RLS symptoms.

He also actually listened to me when I told him about the drugs that aggravate RLS - he suggested Cymbalta for the pain, and I reminded him that it was a drug that can make RLS worse. I told him that I had procured some Wellbutrin online and that it was working well for me. He was a bit horrified that you can get meds online, but ran off and looked up how Wellbutrin works. Then he came back and was a bit excited and told me how Wellbutrin works as a dopamine reuptake inhibitor, and that RLS patients need more dopamine. (Yeah, I know that.) It was kind of cute, and he was happy to write me a script for it.

They can't prescribe narcotics on the first visit - I think that's some kind of DEA rule, but did say he wants me off the Vicodin - but for the right reason - because of the acetaminophen content that harms the liver over time. He said that if my urine test comes out clean of marijuana the next time, he'll probably put me on methadone.

He asked me if there was a support group that I was a part of - he seemed impressed by my knowledge. And then he asked me what seemed to work the best for people, and I told him that the people on methadone seemed to have good symptom control. He said that yes, that's what he was thinking of starting me on.

In the meantime he started me on Lyrica, and gave me a script for Celebrex for joint pain, so that I quit tearing up my guts taking so much Aleve.

All in all, it was a good experience. I do kind of resent having to take a urine test for illicit drugs every visit, but he was happy that I told him that I had tried the marijuana for the RLS.

He also said that it's probable that the medical marijuana bill is going to make it through the legislature this year, but only for terminal cancer patients, not for chronic pain patients.

Oh, and they have a psychologist on staff. Those of you who've read some of my recent posts know that I really, really need to talk to a psychologist. My coping mechanisms have hit rock bottom.

But things are looking better now. It seems like this doctor has a handle on what RLS is all about and is willing to work with me.

Susan

ctravel12 · Post by **ctravel12** » Sat Apr 07, 2007 3:55 pm

Hi Susan Thanks for the update on the pain clinic. It seems that things are starting to go down the right path for you. Congratulations and please keep us posted on how things are going for you.

Thank you for sharing this info with us. Sharing this can also help someone else that is having the same problems or similar ones.

D4 · Post by D4 » Sat Apr 07, 2007 3:57 pm

Susan, I had been anxiously awaiting your post on your pain clinic visit.

I'm glad it was a pretty successful visit. It's amazing how WE know more than docs on what drugs we need to avoid (even some docs that deal with RLS a lot) and we need to tell them things that are known to be bad for RLS.

I agree that seeing a psychologist might be useful. I decided to go to one on my own a few weeks ago when I realized I was hitting rock-bottom in my mental health. This disorder can really drive you crazy! I go back to him Thursday. Some of the things he advised really helped me a lot and my hubby noticed some improvements in me. However, since that visit, my sleeping has gotten even worse and I think I'm not handling it very well. Sleep deprivation is torture!

I've read lots of good things about Methadone, too and I wonder if I'll ever be put on that. Right now, I'm in a holding pattern until I go to Mayo Clinic.

It's hard to find a doc that will work WITH you, so I'm glad he might be the one for you. Best of luck!

Post by **ViewsAskew** » Sat Apr 07, 2007 4:44 pm

Wow, what a great guy - I can imagine that it feels like you are seeing the light at the proverbial end of tunnel. I, too, would resent that test every time. . .did you have to sign a contract?

becat · Post by **becat** » Sat Apr 07, 2007 5:31 pm

Susan were you ok with the jump from Vicodin to Methadone?
There's so many choices in between?
Just wanted your thoughts on that.
Hugs Lynne

Post by **ViewsAskew** » Sat Apr 07, 2007 7:26 pm

(I know you didn't ask me - just butting in) It's weird, Lynne, I never thought of it that way until you posted that question to Susan. No question, I prefer the Methadone to any of the stronger opioids - it has no pronounced "high" effect, yet has the same safety (maybe even safer in many ways). The thing I don't like is the stigma

.

SquirmingSusan · Post by **SquirmingSusan** » Sun Apr 08, 2007 4:33 am

Thanks, all, for your interest and concern. It's so great to have your support on this often lonely journey with RLS.

Yes, I feel like I am seeing the light at the end of the tunnel. Of course some of that is just having gotten meds online and worked it out myself. But at least the doc at the pain clinic agreed with "my" treatment plan.

I like the fact that this clinic has a psychologist, biofeedback training (although too much relaxation brings on the RLS), and physical therapists, as well as doctors who specialize in pain management.

Eventually, when they get your treatment plan worked out and stabilized, they send you back to your primary care doctor to continue the treatment. That will make things a bit easier, and hopefully he won't want the monthly urine test, not that I want to do illegal drugs anyway. I just don't like having my options taken away from me. I get rebellious. :twisted:

I see my former primary care doctor on Tuesday, and hopefully he'll still be the same good guy who delivered my first baby. Hopefully he hasn't become "deranged." :roll:

I'll let you all know how that all goes.

Susan

SquirmingSusan · Post by **SquirmingSusan** » Sun Apr 08, 2007 4:45 am

becat wrote:Susan were you ok with the jump from Vicodin to Methadone?
There's so many choices in between?
Just wanted your thoughts on that.
Hugs Lynne

Lynne, he hasn't prescribed methadone for me yet. They don't prescribe narcotics on the first visit, and not to those who have used marijuana recently. I did try it for a few nights, and unfortunately it didn't get rid of the creepy-crawlies, or I would have skipped the whole pain clinic thing and just been an "outlaw." I'm a bit tired of doctors, don't ya know!

But no, I don't really have any trouble with the idea of switching to Methadone from the hydrocodone. The doctor says it causes less mood swings than the other opioids, and also has less issues with tolerance. And the half life is longer, too.

And Ann, I don't know if they'll make me sign a contract. I've heard of primary care doctors doing that, but I don't know if a dedicated pain clinic will make me, especially since I have to pee in a jar for them every month.

To me it doesn't seem like methadone has any more of a stigma than Vicodin or Oxycontin or morphine. We can thank Dr. House on the TV show for some of the hysteria about Vicodin - but I do like that show. What I can't figure out is the guy is supposed to be a doctor and has legitimate chronic pain and can't get better drugs than Vicodin??? Must be for dramatic effect or something. And then you get people like Rush Limbaugh abusing Oxy, so that's getting a bad rap. Makes no sense to me, the stuff just doesn't make me the least bit high.

The other thing is that we go to a cancer support group, and a lot of cancer patients take methadone because it's such a powerful pain killer with such minimal side effects. I'm pretty up front with people anyway. It makes them take your medical condition more seriously if you tell them you take methadone for your neurological condition.

I'll keep you posted about how I like the methadone compared to the Norco, when I actually get some. :wink:

Susan

Neco · Post by **Neco** » Sun Apr 08, 2007 4:58 am

To my knowledge, it's mostly for dramatic effect and character development.. If I were a Doctor - and could get away with half the sh** he does, I'd be just like him, down to the personality.

As far as I know Vicodin is simply his drug of choice.. Though he does have a morphine backup.. For me it was the same way..(less the morphine naturally, or I wouldn't be typing this) Other things, stronger or weaker, worked.. But - well it's like your favorite flavor of kool-aid, or your favorite color.

It's good to see you are getting some great help.. As for the urine tests.. Don't sweat it. There is no actual point to it other than to detect when a bonafied, true and true addict has been trying to cheat their treatment program in either one or two ways.. Going out and selling their stuff to other addicts so they can buy the real stuff.. Or taking the real stuff with the methadone anyway.

Nothing really happens when you do that though, since the methadone carries the stronger opiate affinity and blocks the real narcotic from tagging alone like usual.. No incentive for someone like us to take it if we were at relief levels.

SquirmingSusan · Post by **SquirmingSusan** » Sun Apr 08, 2007 5:01 am

D4 wrote:I'm glad it was a pretty successful visit. It's amazing how WE know more than docs on what drugs we need to avoid (even some docs that deal with RLS a lot) and we need to tell them things that are known to be bad for RLS.

What was more amazing, Diane, is that he actually listened to me and seemed to have some respect for my knowledge!

I agree that seeing a psychologist might be useful. I decided to go to one on my own a few weeks ago when I realized I was hitting rock-bottom in my mental health. This disorder can really drive you crazy!

No kidding this can drive people crazy. I have depressive tendencies anyway, and with all the stress in my life in the last few years, I should have signed myself up with a psychologist a long time ago. One of my worst character flaws is thinking I can deal with life all by myself. It takes me until I'm a total basket case to admit to another human being how much pain I'm in. But yeah, months of minimal sleep can make you looney all on it's own, not to mention the frustration of dealing with medical professionals who don't get it and don't listen.

I've read lots of good things about Methadone, too and I wonder if I'll ever be put on that. Right now, I'm in a holding pattern until I go to Mayo Clinic.

The one thing about the schedule 2 narcotics is that, I believe, the doctor has to see you every month and hand you the prescription. There's no calling in refills. So, unless they are able to hand over your care to your local doc, I don't know how you'll get your scripts for methadone or even oxycontin or one of those. But there must be a way. I hope the docs at Mayo are able (and willing) to help. Hopefully they will have at least read their own algorithm. It's funny, I used to live in Rochester, and we all hated Mayo because they only deal with the really tough cases. You just didn't want to go there for routine medical care, unless you were King Hussein or Ronald Reagon.

But now I live 75 miles away, and I'd consider going there to see a sleep specialist. I'm totally unimpressed by the sleep clinic I go to now. We'll see. The pain doc seems to really get RLS, so I may not need the sleep clinic anymore.

It's hard to find a doc that will work WITH you, so I'm glad he might be the one for you. Best of luck!

Thanks! And to you as well.

Susasn

becat · Post by **becat** » Sun Apr 08, 2007 7:08 am

Hi Susan,
I wanted to expand and explain my question.
I feel (just me tonight) that it may have come off wrong to some.
It's not really my place to say what anyone should or should not take something for their RLS. Honestly, you Quality of Life counts to me. How you achieve that Amen.
So forgive me if I offended anyone, I was just thinking through my brain. it's full right now, lol, and maybe a bit unorganized. BUT

I'm pretty old school, (ha like most of what we all know is old scool, LOL We really are teaching the docs along the way.)
Example for me this week. I had reason to call my RLS Sleep doc office. His hold message, I usually ignore til I hear a real human.
What the hold message use to be, soothing calming strings music, elevator stuff on a downer, when your calling your sleep doc, to learn to sleep. Now it's someone talking about the clinic's commitment to "you Quality of Life".......that was cool.
anyway,
I honestly dont' care what it takes to make someone manage better with their RLS. I really care that everyone gets the chance and the right to manage.

Just a couple of years ago I heard Dr. B speak in Orlando and I had to just appluad, he got something of what we were voicing as a group. I thinks he's being that one doctor that understand the bag full of trick and the scope of it all, much better than some.

This is what caught my eye and lifted my thoughts to a higher level and a much different idea of treatment. I don't know if he still calls to this or what he says now. No, I have his book but not read it yet. I know, :oops:

But I took it to heart:
Take the lowest dose, of the lowest class, for the longest time possile.

Whatever happens, you better come out good. Ready to rebuild and conquer. You've got my prayers and my shoulder anytime.
Hugs and a moon full of love,
Lynne .

D4 · Post by D4 » Sun Apr 08, 2007 6:55 pm

SquirmingSusan wrote:The one thing about the schedule 2 narcotics is that, I believe, the doctor has to see you every month and hand you the prescription. There's no calling in refills. So, unless they are able to hand over your care to your local doc, I don't know how you'll get your scripts for methadone or even oxycontin or one of those. But there must be a way. I hope the docs at Mayo are able (and willing) to help. Hopefully they will have at least read their own algorithm. It's funny, I used to live in Rochester, and we all hated Mayo because they only deal with the really tough cases. You just didn't want to go there for routine medical care, unless you were King Hussein or Ronald Reagon.

Interesting information. I sure wonder what Mayo will do with me (tests and treatment.) And I hope if they figure out some treatment for me that they'll transfer the plan back to my local neurologist to handle. (Mayo is over 500 miles away.)

After my doctor referred me, Mayo doctors had to review my records before they'd agree to see me. They said if their doctors identified some tests or treatments that could be done locally, they'd recommend it to my doctor instead of seeing me because they only want to see the worst cases. Apparently they agree I'm really screwed up. :wink:

I'm praying they'll figure out how to help me. If they can't, then I don't know who can.

Post by **ViewsAskew** » Sun Apr 08, 2007 8:46 pm

Per the Methadone, different docs handle it differntly. Some work with your primary and THEY write the script for you each month. FYI, it is legal in Illiniois for them to write two months worth at a time. Your insurance, however, will not cover it that way. So, you can go every other month, but then you have to pay for it out of pocket. Since it's cheap, it's not a big deal all things considered (like Mirapex was $35 a month and my Methadone is $18 is I pay out of pocket). I have also heard of doc mailing the scripts using FedEx (so they don't get lost and get there on time). Not sure what the legality is, but I have heard of them doing it. . .