Restless Legs Syndrome (RLS) Discussion Board

Not sure what tawil might be, but pregabatin might be pregabalin which is Lyrica.

Does this mean you now have to find a new primary care doctor.

Could it have been Talwin? That might have been a good choice. It's a strong opioid that's unlikely to cause tolerance and dependence. Here's some information: http://en.wikipedia.org/wiki/Pentazocine

It's awful to not have a doctor you can trust. I have a friend who has a whole pile of serious medical stuff - lupus, RLS, fibro, etc. She told me that she doesn't go to doctors anymore because she doesn't find them helpful. I can so relate to that, but I still prefer to get treated for some of my conditions. Sometimes we just have to keep trying.

She was going to give me opiates so that might have been it. If she didn't answer me, how was I to know? I can't help it, but when I take strong medications, I want to know there is a person at the other end who will help me if I run into problems. Most of them downright lie about side effects, so if you are experiencing something you are at sea.

I honestly don't know what I'm going to do about the RLS. There are no doctors in NY I can see for this condition. I've been trying for two years to find someone. All they do is make you wait months for an appointment and then you either find out that they don't know which end is up or they prescribe the medicine du jour from the PDR and won't waver from that.

I have come to strongly dislike doctors as well. They seem to have lost the human touch or any imagination. Maybe it is the computer age that has done this. Years ago, I went to a baby doctor (right out of med school) for leg cramps. I sat there telling her the sypmtoms, which she typed into her computer. Then she said ,"Aha, I have the diagnosis." She was googling everything I told her. I just stood up, thanked her and walked out.

Two years later, on my own, I found out that the cramps were a side effect of a cholesterol drug I was taking. This was after seeing more doctors than I'd like to mention. Oh, I told each doctor I was taking this medicine.

Dale

ViewsAskew wrote:Not sure what tawil might be, but pregabatin might be pregabalin which is Lyrica.

I just checked her email and the way I spelled the medications in my prior posting is exactly how she spelled them. They were obviously typos, but how was I supposed to know which meds she was referring to. I think this makes it even more egregious that she didn't answer my email asking about these meds.

Dale

I would be very annoyed by that.

I have had a similarly hard time finding a good doctor in Chicago. I have one now that was generous enough to follow what my previous doc was doing, but was terrified of doing anything on her own. She also wanted me to see a psychopharmacologist. I wouldn't go.

I am on the hunt again now that I don't have insurance. The last time I talked to 15 doctors before finding her. I'm not looking forward to this.

Hi Dale
I did a little bit of searching and found this http://www.rls.org/Document.Doc?&id=428

If you scroll down to where it discusses 'Pain Relievers when RLS is Severe' it mentions Talwin NX (pentazocine).

Dale,
I also have this one
http://www.rls.org/Document.Doc?&id=346
which refers to rls and depression.

I have this document and the above mention one, saved on my Favourites for ease of referral. Could be good information for a doctor.

Maybe you should see if any local media would be interested in reporting on your situation, and maybe helping you find / or get your appeal out to a doctor who will actually help you.

If anything, stories like these need to be brought to the public.

There has got to be someone out there that would want to do a story on you and the way you've been treated and then ignored by all these doctors, especially with our current healthcare political climate.

Hate to being politics into it of course, but in this case it would be good exposure for RLS, and it could help so many people who may be in the same position but don't know they should or could fight back.

Hmmmm.... a case of - I've got a medical condition called RLS.... can at least one soctor in this big city help me get adequate treatment !!

Sorry - that should of course have read doctor!!

That's a great angle, Zach. You'd think you could interest a smaller paper (probably not the Times, lol) to take on something like this. I briefly started a master's in journalism; I would have loved a story like this .

Or, do a YouTube interview/video and let it go viral. That could be a really fun piece. It's just that none of us are in NY with Dale to help her do either...must be something we could do together.

Sleuth, So do I have this straight? Your primary physician suggested Talwin(an opiate) and Pregablin (Lyrica) and you are frightened to return to her office because of a bad email. First of all may I suggest, no more emails. You really need to address something as important as RLS/new meds face to face. Second of all, both of these meds together are a great choice and I'd take the prescriptions and run. You can figure out side effects later.You may not have any at all. If you make an appt. to see her, forget about all the poor communication problems in the past. The past is the past. Also, just from my experience, even my physician (whose been very liberal in writing for opiates), has been very frustrated at times especially when I was augmenting from the DA's. This is not an easy disorder to control, much less understand if your not a sufferer. So maybe the bad emails was out of frustration because she cannot find a solution to a hurting and miserable patient. I hope and pray that you do get some relief soon and reconsider giving your primary another chance.

Sleuth,
Please listen to me. I'll jump in this one last time, I promise. Take the medicines that lady doc wants to give you, pleeeeez. The Tailwan or whatever the spelling is, hon, that is morphine. It will stop the RLS symptoms OVERNIGHT. Now, the Lyrica, you can get that and wait to take that after you get used to the morphine drug, if you want. I can tell you what your side effects will be.

The Tailwan morphine stuff, it will give a lift to your mood, it will kill ALL activity in your legs for around six hours or more. You can take it and feel like a normal person again. Initially, for a week or so, you might feel a little sleepy when you take it, so start with it where you're gonna be able to pass out for 12 hours. Ha! This is becuz you've been lacking in sleep so long, where you lay down is where you're a'gonna stay overnight that first time. Many people here will report exactly the same thing, that they have never forgotten that feeling of pure bliss when they woke up and the pain was gone. Sometimes that medicine will make your digestion a little slow, so drink extra water as a habit, and eat fiber like a salad or oat cereal or blueberries as a snack often.

The pregabalin, as the other poster said, that's Lyrica. I also take that. It has some powerful side effects that almost all go away within a week or so. What it does is, it stops nerve pain, muscle aches, sharp pain in the back, that sort of thing. It's an anti-spasm type medicine and also prescribed for folks who have fibromyalgia, which is all-over pain. It will give you a buzz, even more than the morphine, and it'll cause you to kind of lose your balance, so right after you take it, just stay in your house until you see how that is. I'll be walking down the hall, holding onto the wall, so I don't lean into it. But you feel so good, it's just funny. As long as you don't take too much of it, you won't get any "visuals," but they happen becuz yo'ure slowed down, so if a few strands of you hair fall into your eye, you'll think you've seen a movement in the room, when it's just your hair. But wait on taking that until you settle in with the Morphine, so you can distinguish betwee the two.

But there is no question in my mind, having taken opiates and pregabalin, the very stuff prescribed to you, that you have FINALLY gotten your drug that you need to stop the RLS. Soon you'll be feeling SO much better, you will not believe how wrecked up you've really been, and your frustration and movement will get better. Contrary to popular belief, as long as you stick to what is prescribed on the morphine stuff, you can stay on the same dose for a few years before needing an up in dose. Lyrica is diff, you need to up dose four times within a few months if you get on it regular, until you plateau out in relief.

So, I don't care if you gotta stand on your head to get back with that lady doc, JUST DO IT. I will be very upset if you do not go get it IMMEDIATELY and, like Zach said, if you don't, I'LL notify the media! Ha!
GG

I agree so much with Dogeyed and Runkrun...... please just go back to your primary care doc, face to face, and try these meds. How can you say you have tried and done everything when your doc has offered this treatment and you haven't tried it.

When your symptoms are this bad, is it not worth trying these meds? I cannot see how you could be offered anything much better. (in my limited pharmacology awareness).

Despite your reservations is it not worth carefully trying this. I would have been over the moon to have had these meds offered.

Can you not imagine the joy of relief (some relief) from rls symptoms