Stranger and stranger...Update from restlessstoz.

[restlessstoz]

I really haven't known how to write to the forum since seeing my GP last Friday and writing RL medication disappointment. I read all the responses and took on board every comment. However, I couldn't go on like I was- I had work that I had to go back to and there was no way I could drive to work let alone do the work, in the zombie state I was in. I also was so tired I was in tears a lot and therefore worried that my depression would kick in and I would spiral down into a different hell.

I decided to take my doctors advice and start the Edronax (reboxetine) as well as going back onto a 0.25 mg dose of pramipexole which was still half the dose that I was on. I expected to perhaps reduce the sleeplessness a little (i.e. the RLs) but really, still be much the same as I was. I didn't expect much from the Edronax.

In fact, since I took the 0.25 mg of pramipexole and the Edronax I haven't suffered even 1 bout of RLs. Now, I am baffled. It has been nearly a week and I have slept without waking with legs. The first two nights I had 10 and 11 hours sleep! Since then, although my sleep hasn't been as long, even if I'm awake, I can still stay in bed and relax. Even if my pain from arthritis is bad, and would have triggered RLs in the past, I have had no RLs. I went to the podiatrist this morning and usually, when the sanding 'machine' is on and vibrating like anything, I get twinges of legs, this morning there was nothing.

I don't know what to think and certainly can't explain what I've experienced. Any ideas? I will continue to decrease the pramipexole over time, though do it gradually and slowly- my GP thinks it a good idea regardless of how my legs are now. I would be happy to hear from anyone who has some ideas about this.

[Hidden]

You did what you needed to do!! You made the best decision for you; you should be proud of that!! I for one will definitely not argue with that!! Also, we are not the doctors and we don't know your medical history. Your doctor does. He did what he thought best for you at this moment in time and you made the best decision by following his advice. Please don't ever be afraid to tell us about that!!

[restlessstoz in reply to Hidden]

Thanks Jess. I really was a bit anxious to 'bare all' as I felt as if I 'failed' everyone here by going back on the pramipexole after all the horror I'd been through but I really HAD to go to work. I am still on the road to being rid of it but it will just be a bit longer.

What I don't understand is the 'no legs' bit that continues. I had a massage today, a gift from my friend, and for the first time in years, was able to lay and relax and enjoy it completely instead of partially due to legs being irritated. Wonderful!

[Hidden in reply to restlessstoz]

Yeah, RLS is weird like that. I've had two separate experiences over the past couple of years where my movements just disappeared!! It was awesome!! I hope yours last for a long time! Who knows why it happens? The second time it happened, I did exactly what you're doing and posted about it because I was confused. I felt as though I acting cynical in searching for a reason as to why I was experiencing what we all want (totally calm legs,) but I just couldn't leave it alone.

[RLSgirl in reply to Hidden]

I too have experienced episodes where my RLS just completely went away. And I cannot explain it. the irony is that the one longest time it happened to me for more than a month. During which time I had a sleep study scheduled. I was so interested in what the sleep study would show, and then all of a sudden my legs went calm for a month! lol

The doc. convinced me to go ahead with the sleep study anyway as it still may reveal some issues. But I feel like I wasted that sleep study. I should have canceled it and rescheduled a month later when the RLS returned!

[Hidden in reply to RLSgirl]

Hello again! Yeah...your legs were probably interested as well

It must have to do with big distractions. What do you think? I was in a tremendous amount of pain the second time I noticed that my movements weren't there, so I was focused on the pain and not my legs.

[RLSgirl in reply to Hidden]

Interesting thought. Thinking back on it I was in the process of buying my house and moving. that is a pretty big distraction! ...hum so how can we test this theory? or how can we become permanently distracted?

[Hidden in reply to RLSgirl]

Yeah, I wonder.... Maybe others reading this will have ideas on how to test this and find ways to have big, permanent distractions.

We make a good team

[involuntarydancer]

So glad to hear of your good spell. I think you are adopting a very pragmatic approach to your treatment. It is good that you aspire to get off the pramipexole in the long term but you do need to live your life also. I would say enjoy the good spell and regroup for now. I would also say don’t be tempted to increase the dose of pramipexole if it stops working. Find something else to manage any breakthrough symptoms. Small doses of multiple drugs is often far more effective for treating rls. I hope this good patch lasts long for you.

[restlessstoz in reply to involuntarydancer]

I certainly WON'T be increasing that awful drug! I'm definitely going to reduce perhaps by quarter of a what I'm on: 0.25; each fortnight so be off it in 8 weeks or so. I do hope that will not cause huge problems but if it does, so be it. I too hope that the good period lasts. I really don't understand it at all but am grateful for it.

[involuntarydancer in reply to restlessstoz]

It truly is a mystifying condition. You could lose the small amount of sanity that survives the sleepless nights trying to find patterns.

[restlessstoz in reply to involuntarydancer]

Respite over! I'm now standing up typing this. The weather has been very hot the last week and dry. Now there is a cold change with smatterings of rain and wind. I know my arthritis pain is worse so is that triggering RL now? Why did it switch back on? I have had bad pain this week and no RL.

You're right- one could go very mad. Meanwhile I will distract and try to get back to bed when it settles.

[Zbirth1]

Yahoo!!!! Sweet dreams & peaceful slumbers 🌝😴😴😴😴