Need Help

[chamudie]

I have so many questions that I dont know what to ask first.....I was diagnosed in 2004 and started on Mirapex. I noticed in April that I was having augementation, so the doctor increased the amount of the Mirapex ( well I would also decide if I need to take more at anyone time...unfortunately I am at the stage where I need to take something everynight). I moved to Israel in July and I cant get Mirapex here, that was a joke, first we have HMO's here, so the first I checked with the doctor I was assigned to was to find out if she knew what RLS was ( she did), I also have sleep apnea, but more docs seem to now about that. Unfortuantely, she went on vacation when I was ready to change my meds, I would need to see a Neuro here to get the scripts I need and its 3 months to get aqn appointment, so the doctor started me on Dopicar, which made me sick . Since I did not tolerate it and was getting kinda desperate, I went over to the clinic where they work and played stupid ( what? you need an apointment? cant he see me in my broken hebrew) Imanaged to get an appointment 5 days later. This doctor put me on Jumex, but I had so much augmentation, that it was not the best solution either. However, right now I am a student, for the first time in many years and with Jumex it was the first time I could sit still w/o the movement, that was kinda neat. With all the changes in my meds I ended up in the hospital here were I ended up meeting my Neuro to be. He quickly changed my meds from Jumex to requip, from Xanax to Clonex and is trying to get me to stop taking the narcotic. My questions are this:
I am taking
1.5 mg of Requip at night
1.0 mg of Clonex at night
1 - 2 percoset a day ( depending on the pain level), but I am having the following issues:
some augmentation that comes and goes, with the primary areas my knees and ankles, followed by my elbows and wrists and now I feel it in my shoulders, does this happen?
has anyone had problems with joints due to this disorder? I walk alot here and even when I dont over do it I have problems or when I have a busy day I dont feel any worse....I have yet to figure out the pattern here, with the exception of some hormone connection.
what about temperatures? I found the hnumidity here drove my legs crazy, yet now that its colder here ( and in my area we dont have "central" heat in our homes its obthering me alot too..)
How about food? I keep my caffiene comsumption to a minimum ( am only)
stiffness in my joints when I dont have pain, either in the am when I get up or when I sit a long time.
I am concerned that as this condition progresses I will run out of options.....

any insights? I see the neuro in January and want to bring up these issues....

Thanks all,

[ViewsAskew]

My questions are this:
I am taking
1.5 mg of Requip at night
1.0 mg of Clonex at night
1 - 2 percoset a day ( depending on the pain level), but I am having the following issues:
some augmentation that comes and goes, with the primary areas my knees and ankles, followed by my elbows and wrists and now I feel it in my shoulders, does this happen?
has anyone had problems with joints due to this disorder? I walk alot here and even when I dont over do it I have problems or when I have a busy day I dont feel any worse....I have yet to figure out the pattern here, with the exception of some hormone connection.
what about temperatures? I found the hnumidity here drove my legs crazy, yet now that its colder here ( and in my area we dont have "central" heat in our homes its obthering me alot too..)
How about food? I keep my caffiene comsumption to a minimum ( am only)
stiffness in my joints when I dont have pain, either in the am when I get up or when I sit a long time.
I am concerned that as this condition progresses I will run out of options.....

any insights? I see the neuro in January and want to bring up these issues....

Thanks all,

Chamudie, one of the best things you can do is to slowly read the old posts. I think you are already doing that - it is time consuming, but so much rich info in them.

We are all concerned that we will run out of options. But, most of us won't. We can always recycle - trying a drug now that we became tolerant to five years ago, may allow it to work again - even if it's only for awhile - it's better than without any! And, there are at least five new drugs in the pipeline, some great research is going on, etc.

Diet may affect RLS. Problem is, we aren't all affected the same. Read the "sticky" in the New to RLS section. There are many things to look at, not just diet - alcohol, exercise, and more.

Augmentation and progession are sometimes hard to tell apart. If you are on ANY dopamine agonist and your symptoms worsen within a period of less than a year, it's most likely augmentation. Since you augmented with Mirapex, you are probably also augmenting with Requip. The solution? Stop ALL DAs. Read the algorithm in the New to RLS sticky (oh, can get to that from the link in my signature below).

I understand the doc's concern about addiction, but stopping Percocet and replacing with a benxo doesn't make good sense. To an RLSer, the benzos are more likely to cause problems than opioids. First of all, Percocet isn't a good choice - you don't need the added pain killer (bad for liver) and the low-potency opioid doesn't help much, if at all. At this point, after augmenting on two DAs, you would be better off just trying a high-potency, longer acting opioid for at least a couple of weeks and seeing what happens. Can someone ship you Dr Buchfurer's book on RLS? There is a great section on using opioids. You can take this to your doctor. There is also other great info on the other drug categories, augmentation, etc.

Temperature affects many of us. It sort of sucks.

Hormones affect women and make RLS worse for some of us. Not sure why yet, but it's unfortunately true.

There is much unknown. Some RLSers have joint problems that are not diagnosed as anything else. Some have none. So, there is no way, as of yet, to know if this is a problem that is yet to be recognized as RLS, or another disorder that comes with RLS or another disorder unrelated to RLS, both that are still to be identified. We just know some people have problems. For those people, taking antiseziure drugs and opioids (or Ultram) are the most likely things to help.

Hope your neuro is well-versed. Many are not - they had the rudiments down, but don't know the nuances of it and of treatment. I wish you luck using the health system there (or anywhere) as many of us find ourselves between rocks and hard places and need to either pay for care out of pocket, change docs multiple times, etc.

Happy reading!