changing extremities

[pexj]

This evening, I watched several YOUTUBE videos sponsored by this foundation and they were great. What I did not hear was my issue of movement from one extremity to another. When I go to bed at night, I never know where the RLS will show up, if it does. Could be just one arm or just one leg, the next night it might be a different extremity. Recently, it I take an afternoon nap, I may wake up suddenly with the sensations in both shoulders. The shoulders thing is relatively new. Do others have it move around like this also?

[buglegs]

I stopped taking all Dopamine Agonist over approx.10-months ago and haven't taken anything in its place since...During the beginning of those 10-months I've had all sorts of weird symptoms, including the symptoms moving around, kind-of-like cycling through different muscle groups but those symptoms were transient, sometimes it would cycle into my Bicep/Tricep muscles and my arms would appear as if I had been lifting weights at the gym..Additionally, I was getting these symptoms that you describe before I finally figured out it was actually Augmentation which was being fought with an overdose of 2-MG Mirapex daily (believed to be equivalent to 12-MG Requip)...After taking these drugs for over 20-plus years, and being Overdosed on these deadly drugs for many years, the biggest thing I'm fighting at this point is...DAWS... but those symptoms have become way less intense nor as often, couple more months and I fully expect these symptoms to go away completely.... Hopefully.... I'd check and see if any other medicines that I was taking could eventually lead to Augmentation...

[badnights]

buglegs has guessed the same as I will guess: you might be augmented. Are you taking dopaminergic medications for your WED/RLS? Symptoms in arms and shoulders are often (not always) associated with augmentation, which is a worsening of WED/RLS caused by the very medications that are supposed to help it.

Other than augmentation, symptoms do move from leg to leg a lot for some people. Or arm to leg, but as I said, involvement of arms seems way more common in people whose disease has been augmented by dopaminergic meds.

[DontLikeRLS]

I stopped taking 0.5mg Pramipexole two months ago. I had taken it for about 10 years, and over the last 2 years, symptoms spread to my legs, and flared up in the evening, as opposed to just at night. I was augmented on the drug, but had not heard of augmentation. I just assumed my RLS was getting worse. While I was augmented on Pramipexole, my symptoms moved around just like yours. It could start up in one location during the night, and I could wake up later with symptoms in a different location. I could go to bed with a sore wrist. My legs would be fine. I found that frustrating, as to me, my RLS was absent, but my darn wrist would not let me sleep. I could then wake up with symptoms in my left leg. I might wake up later with symptoms in my right leg. My RLS generally attacked one part of my body. If it was in an arm, I would not have symptoms in my legs. I would not have symptoms in both legs at the same time. Every night was different as to where my symptoms would begin. So the location of my symptoms varied through the night and from night to night. I am so glad to be off Pramipexole. That drug caused me so much grief. And I now understand, it has probably permanently altered my brain.

[buglegs]

Well I don't know if I'd jump to the conclusion that it has probably permanently altered your brain...I was overdosed on Pramipexole for little over (1) year and stopped taking it cold turkey, restarted 4-MG Ropinirole next day, slowly stopped that over about 2-month period..the Withdrawal Symptoms combined with the Augmentation had me beginning to question had my brain been seriously altered permanently because the side effects and withdrawals were really weird. Its been 10-months since I last ingested any type of dopamine agonist or any other recommended drug for RLS and I feel like I'm "ALMOST" over the terrible side effects I've suffered from taking dopamine agonist drugs...It just takes time I believe your brain will eventually rest / heal itself, takes time for your receptors to recover and most likely different length of time required for each individual person...Don't know if you taking another medication in place of the Pramipexole but if you are be aware of the side effects, especially if it can cause Augmentation and/or worsen your RLS...

[DontLikeRLS]

From what I've read, there is research showing those who have augmented on Pramipexole and other DAs, may have permanent changes to the structure of their brains. That is not necessarily related to the withdrawal symptoms resulting from discontinuation of the DA. Those withdrawal symptoms will generally decline with time, but apparently a residual change to the brain structure remains. I haven't read anything regarding any symptoms relating to the change in brain structure. Perhaps there are none. I hope so. Two months ago, I started on codeine, taking 60mg 1 hour before bed, and 30mg when I wake up in the middle of the night. It's not perfect, but I'm infinitely better off than I was augmented on Pramipexole. It's early days, and it will be some time before I can really evaluate the drug. Apparently tolerance is unlikely to develop, and I hope that is the case for me. I'm on codeine, because that is all my doctor is prepared to prescribe. He will also not increase my dose. He does not support the use of opioids in the treatment of RLS. I have another doctor lined up, if he is not prepared to fully support me. I have a referral to a motion disorder clinic, and I will pursue drug options at that time. It is difficult to get an opioid prescription in this part of the world. My current doctor has no idea how to get me methadone, and will not prescribe Oxy to anyone for any reason.

[badnights]

From what I've read, there is research showing those who have augmented on Pramipexole and other DAs, may have permanent changes to the structure of their brains.

Some specialists have hypothesized that augmentation (from the use of DAs) causes permanent damage. That damage would presumably be something to do with how our neurons create dopamine receptors. The evidence for this suggestion is the way so many of us who augmented on DAs, and stopped them, were left with symptoms worse than before we ever took them. Our baseline level of symptoms had gone up.

[DontLikeRLS]

The thing that puzzles me, is how much of my steady state post withdrawal symptoms (several months after stopping the DA, and not replacing the DA with any drug - a theoretical situation) are due to the natural progression of RLS over time, and how much was caused by the DA? That is, what would my med-free symptoms be like now if I had never touched a DA or any other RLS drug? Would my med-free symptoms be milder now if I had never used a DA? I don't think there is any way to establish that. If it is indeed the case that my med-free symptoms would be worse now because of the DA, then I'm a little annoyed. I did not sign on for this when I started the drug. I know no one knew about augmentation when the drugs were introduced as treatments for RLS, yet augmentation has been known for many years, during which I was on the drug. At least my doctor did not increase my Pramipexole dose above 0.5mg, as many doctors did, causing additional suffering for their patients.

[buglegs]

Well here's the real question(s): Did the dopamine agonist drugs change the structure of our brain causing our RLS symptoms to become worse over time? OR Has the RLS symptoms progressed to higher intensity levels with time (Worsened With Years)? If the dopamine agonist drugs has altered our brain how would we really know based on the two questions above? Hopefully, if the dopamine agonist does somehow change or alter our brain in some way that its not a permanent alteration...but, IF it is permanent, hopefully the alteration turns-out to be a positive one.....

[pexj]

I feel I am doing better now than when my Mirapex augmented. When I stopped taking it last fall, quality of life was such that I considered ending it. Now I take one hydrocodone (10mg) and two gabapentin (300mg each) at 4pm and two hydrocodone and two gabapentin at 8pm. It is better now but RLS has not gone away. The symptoms vary from day to day. Then it happened, one-night last week I slept until 8am. It was like WOW! I have no idea why, it just happened. Nothing different in my schedule. I have to laugh; normal people have no clue what we go through. But the concern of permanent brain damage from Mirapex is frightening. I finally have an appointment with a movement disorder neurologist the end of March, I have never seen a specialist like this before, maybe that will help.

[badnights]

The thing that puzzles me, is how much of my steady state post withdrawal symptoms (several months after stopping the DA, and not replacing the DA with any drug - a theoretical situation) are due to the natural progression of RLS over time, and how much was caused by the DA? ....Would my med-free symptoms be milder now if I had never used a DA? I don't think there is any way to establish that. If it is indeed the case... then I'm a little annoyed. I did not sign on for this when I started the drug. I know no one knew about augmentation when the drugs were introduced as treatments for RLS, yet augmentation has been known for many years, during which I was on the drug.

You're much more gracious than me if you're only a little annoyed. I am blazingly angry. Every time I read that yet another newcomer to this board has been driven into augmentation by a doctor who didn't know something that has been in the medical literature for almost three decades, I see red.

At least my doctor did not increase my Pramipexole dose above 0.5mg, as many doctors did, causing additional suffering for their patients.

Yes, at least you have that to be grateful for. But gee. Why did you ever have to get augmentation and a worsened baseline? There should be no need for all this suffering, yet patients are still - even today! - being told to take more dopamine agonists. I wish I could do something to change that.

[badnights]

Well here's the real question(s): Did the dopamine agonist drugs change the structure of our brain causing our RLS symptoms to become worse over time? OR Has the RLS symptoms progressed to higher intensity levels with time (Worsened With Years)? If the dopamine agonist drugs has altered our brain how would we really know based on the two questions above? Hopefully, if the dopamine agonist does somehow change or alter our brain in some way that its not a permanent alteration...but, IF it is permanent, hopefully the alteration turns-out to be a positive one.....

You're both right, of course, there's no way to know, except statistically by comparing the severity of WED/RLS in people who never used a DA against those who augmented and stopped the DA. As far as I know, no one has done that, but medical clinicians have a sense for what the answer would be. Also, those of us who augmented quickly have a sense of the answer too: I augmented within days, and was on DAs less than a year; I know my level of symptoms was much higher after than before.

Seven years after my horror show with the DAs began, my symptoms improved, and eight years after that, they improved again. Both times, I did extreme lifestyle changes (that I've posted about on here - one was the Wahls diet and the other was the Gupta Program). So I think the improvements were due to the lifestyle changes, but it could be argued that some long-term effect of augmentation was finally wearing off.

[badnights]

I feel I am doing better now than when my Mirapex augmented. When I stopped taking it last fall, quality of life was such that I considered ending it. Now I take one hydrocodone (10mg) and two gabapentin (300mg each) at 4pm and two hydrocodone and two gabapentin at 8pm. It is better now but RLS has not gone away. The symptoms vary from day to day. Then it happened, one-night last week I slept until 8am. It was like WOW! I have no idea why, it just happened. Nothing different in my schedule. I have to laugh; normal people have no clue what we go through. But the concern of permanent brain damage from Mirapex is frightening. I finally have an appointment with a movement disorder neurologist the end of March, I have never seen a specialist like this before, maybe that will help.

I'm so glad you're doing so much better! And you made it though the Mirapex withdrawal, that is always hellish, good on you!

You can rest easy about "brain damage". There may be long-term changes in the way dopamine receptors are organized but the only consequence of that is WED/RLS symptoms. There is not brain damage in the sense of having a stroke or dementia, it is not the same thing at all. So don't worry about that.

Not all movement disorder specialists know about WED/RLS so you should prepare by learning as much as you can. Even though it's not what we were raised to believe, it's true that sometimes we are the ones enlightening our doctors about things.

[DontLikeRLS]

I augmented within days, and was on DAs less than a year; I know my level of symptoms was much higher after than before.

Thanks Beth. I believe you have answered my question. As I recall, prior to starting meds for RLS, my symptoms did not become a lot worse over a year. It was a relatively slow process. So it appears from your experience that DAs didn't just do a little harm, they did a lot of harm. It's nice to know there is some possibility of healing from this assault on my nervous system somewhere down the road. Also nice to know the brain damage only relates to RLS symptoms.

Regards,

[badnights]

As I recall, prior to starting meds for RLS, my symptoms did not become a lot worse over a year. It was a relatively slow process. So it appears from your experience that DAs didn't just do a little harm, they did a lot of harm.

Absolutely.

It's nice to know there is some possibility of healing from this assault on my nervous system somewhere down the road. Also nice to know the brain damage only relates to RLS symptoms.

Always reason to hope