Lost in my Oxycodone haze

[Polar Bear]

You go girl !!! you've put a great smile on my face. What a wonderfully positive post, as positive as it can get from someone suffering from WED.

Pain free knees - how brilliant. And to wean of pramipexole, what an achievement.

You are now on Ropinerole. I take it also and I started it a few years ago when it was considered that 4mg daily was an ok dose and that's what I take.
More recently it has been considered that 4mg is way too high and that Ropinerole 1mg is the daily max.
That means that you and I are both well above the daily max but no way am I strong enough at present to consider reducing it or trying to convince my doctor to give me enough of a strong medication to cover the withdrawals, he is very willing but it was a big step for him to give me codeine/tramadol.

It has been so good to hear from you again and super good that you are doing so well.

[QyX]

That means that you and I are both well above the daily max but no way am I strong enough at present to consider reducing it or trying to convince my doctor to give me enough of a strong medication to cover the withdrawals, he is very willing but it was a big step for him to give me codeine/tramadol.

Why not? There is this new study out about opioids for RLS. The study is done to the newest scientifc standards and represents good evidence that (strong) opioids are a save and effective way to treat RLS/WED.

[ViewsAskew]

Always makes me happy when things work out, pamndoor. I am so glad things are working out so much better for you.

[Polar Bear]

QyX - At first GP gave me tramadol to supplement my ropinerole/requip which helped a little. Also, eventually, a few 8mg cocodamol for occasional use. The 8mg cocodamol helped somewhat.
On a different occasion I was then prescribed some 30/500 for chronic neck/shoulder pain and they really helped my WED.
My neck pain hasn't required medication for some time but I still get the prescription,
I haven't seen my main GP in case he decides...... these meds could do with a review.
I do have printed papers for backup (including your above mentioned new study - thank you) for if and when he decides to look at my meds.

[QyX]

Okay! I take 80 mg of Morphine these days who equal 800 mg of Codeine or 800 mg of Tramadol. I don't develop a tolerance to this dose. It just stays this way. Very often I can reduce the dose to 60 mg because I don't always need Morphine in the morning.

My RLS is 95% gone at this dose but I can't fall asleep and don't know why!

Trying to find the right sleeping pill now.

[pamndorr]

I wondered what the dose for the Ropinirole was these days. I know I was started at the 2mg at 1pm and started with only .5mg at 6pm. That dose didn't hold the pain back. When I upped the 6pm dose it got ahold of it. But...and here it comes....this dose is not holding off the pain for the whole day. I know it will have to be adjusted again....or the dose increased. Now I understand and get it that I HAVE to take the lowest dose possible and deal with some discomfort as long as I can. I am sure that is why the doctor added the Oxycontin...12 hour. Hoping to hold off any increases in the Ropinerole. I remember a time a few years ago that I was up to 14mg of Requip a day. That was when doctors had no idea of what they were doing for me. They just knew that if the dose was increased the WED would calm down. I am much smarter and more educated on WED now and will not let that happen again.

This is a learning experience and I am learning....the hard way!! I see the doctor the end of the month so I will be able to talk to her then about the next step. In the mean time....I feel free...I feel like a person. I wish I was well enough to go back to work but I don't think that will ever happen again. As my hubby likes to remind me...I am better..a lot better..but I am not well enough to return to the workforce. That has been a hard one for me. I loved working and now that I feel a bit better I miss my job. But I had a job working with animals and I had to be on the ball or I could kill something. I am just not that sharp still and I imagine with the drugs I never will be that sharp again....not that I ever was the sharpest knife the drawer!!!

[badnights]

Thank you all again for all your kind words. I did read them all. I just couldn't respond at the time. I read them and I cried and I read them and I tried to understand that I wasn't alone. That is important...we are not alone. There are others out there like us. Some of us happen to get this with the full force and it is relentless but we can make it if we help each other out. I am here if anybody ever needs a shoulder.

This board saved my life, too. Some wonderful people here, and just knowing that there are others living with this has helped. Acceptance is something I am still trying to find ... I'm getting there, but rocky road.

[cornelia]

The maximum dose of Ropinirole according to dr B is 1 mg a day. If you need more I think (but am not 100% sure) that he prefers a patient to take the Neupro patch because of augmentation issues especially when you went through that already.

I'm so glad you feel better and I can relate that in better periods the craving for a normal life is paramount. I think it is because you have time for this now whereas in bad periods you have to live around the symptoms all dayand are busy with doing that. Well, that's what I think.
Corrie

[pamndorr]

I have tried the neutron patch. Same bad side effects that I was getting with the Mirapex/Pramipexole. Granted at the time some doctor had me using the patch with the Mirapex. Bad combination for me. I guess I will find out on the 27th when I go for a check up what the long range plans are for me. I do know drugs will have to be adjusted because I have more break through discomfort each week. For now it is tolerable... and I like Requip/ Ropinererole best. It is the only drug so far that I can tolerate and be half way normal.... but it has to keep being increased to stay on top of things. I am just glad I finally have a doctor that seems to get it!!!

[badnights]

For now it is tolerable... and I like Requip/ Ropinererole best. It is the only drug so far that I can tolerate and be half way normal.... but it has to keep being increased to stay on top of things.

Don't land yourself in the same hell again, love.

[lynneat]

What is the oxycodone for? What does it do for you? Do you have pain? Thanks.

[ViewsAskew]

What is the oxycodone for? What does it do for you? Do you have pain? Thanks.

Most people with WED find that opioids work very well. Once you try all the other classes and you can't take them, you augment, or they do not work, opioids often become the only thing many of us can take. Taking them removes WED and its symptoms - it's truly a wondrous thing.

[Sojourner]

lynneat wrote:
What is the oxycodone for? What does it do for you? Do you have pain? Thanks.

As my WED manifests primaily as pain, Vicodin/Hydrocodone (an opiod like Oxycodone) simply, but thankfully, eliminates or relieves the pain enough so that sleep is at least a possibility.

[pamndorr]

lynneat wrote:
What is the oxycodone for? What does it do for you? Do you have pain? Thanks.

Hi Lynneat...I just wanted to let you know that when I first started the Oxycodone I was in a lot of "pain" and in a "mental haze". From reading back through my posts I was not doing well at the time. I was switched from Oxycodone to Oxycontin . I truly am not sure what the difference is between the two...but I can now take the Oxycontin 10mg twice a day and I am able to function and live a fairly normal life..or as normal as it is going to ever get. I am not pacing and up all night anymore. It took my brain awhile to adjust to the Opioids but once it did I see how important they are to treating WED. I didn't want to start them...I had some unfounded fear of becoming addicted to them or not being able to function. But that is not the case....at least not at this dose. I do know that soon the dose will have to be increased....but for the time being I am doing much better. It's a roller coaster ride....got to enjoy the ups because you know the downs are soon to come.

[badnights]

What is the oxycodone for? What does it do for you? Do you have pain? Thanks.

I guess this has been answered a number of different ways, but I'll add my two cents. Oxycodone and other opioid analgesics are not only for treating pain. Parkinson's meds, anti-convulsants, and opioids are the three classes of medication that have been found to relieve WED symptoms. So, just like the Parkinson's meds are not only for treating Parkinson's, and the anti-convulsants are not only for treating convulsions, so also opioids are not only for treating pain.

WED symptoms actually can be classified as pain, though. WED symptoms tend to come in two major varieties, with lots of individual variation, but most people's symptoms fall into either the creepy-crawly electrical kind, or the painful kind. This is just a way of describing sensations that have no counterpart in the normal realm of experience, so we struggle for words to describe them. No matter the individual variations, they are deep, and they are dynamic. Here comes a small lesson in semantics: The painful kind gives the sense that bodily tissues are being harmed; the non-painful kind does not. Pain has been defined in its broadest sense as any sensation that gives rise to a negative emotion in the person feeling it, so the creepy electrical WED sensations are pain, too, even though they don't give the sense of harm to bodily tissue.

Your husband, if he has WED, will be feeling some unpleasant, dynamic sensations deep in his limbs that he has difficulty describing. For it to be WED, he must feel an accompanying urge to move the affected limb, feel some relief from the sensations at least as long as the movement lasts, have the sensations triggered by resting (sitting or lying down), & have them triggered more easily in the evening or night.

Opioids are one of 3 classes of drugs that can actually remove those sensations. How it works is a mystery. Autopsies have shown that WED patients have less naturally occurring, human-body-made opioids (endorphins, enkephalins) in certain parts of their brains than non-WED people.These human-body-made opioids play a role in the nervous system (including the brain) and - believe it or not - in the gut. Their complete role is still a mystery.

Hope this is helpful.

That's