NEW to the Community

[NOsleep4Me]

I hope that this site is still current. Hello!! I just found this site and I am SOOOO glad!!! I have had RLS since I was very young, 5 or 6 years old. I am now 48. In the last few years I have been having this weird issue that I have not been able to verify until I found this site.

I, too, have the pee issue and RLS getting worse. I thought I was crazy. And when I tried to explain it to new doctor (I recently moved to another state), she just looked at me like I was making this crap up.

I am so glad to see that the pee/RLS issue I have is REAL AND ACTUALLY EXISTS. The pee issue has just recently started in the past few years. I thought at first it was UTIs or bladder infections, but I had NO OTHER SYMPTOMS. No constant rush to the bathroom to pee and then nothing, no burning--nothing. That kind of weirded me out.

But this got worse and made sleeping and relaxing almost impossible. I, too, get up several times a night, feeling "FULL" but then nothing, a trickle. This "full" feeling definitely worsens my RLS, when I go my RLS subsides a tiny bit. I am on ropinerol (spelling?) and it helps a bit, but the whole pee/bladder thing really kicks my RLS into high gear. I have to get up 4 or more times a night to relieve the feeling, but then its the same thing over and over: just a trickle.

Sadly even during the day my RLS and this pee issue affects my daytime routine; this has gotten worse as well over the last few years, my daytime routine being slammed by this condition.

If anyone has any suggestions for people like us in regards to other sites or resources I would love to hear about them, and from you. Thanks!

[involuntarydancer]

Hi and welcome,

What you describe is on a whole other level from the link I found between rls and full bladder. For me it is merely that if I empty my bladder it sometimes eases my rls. I don’t have that ‘full’ feeling when actually there is only a tiny trickle.

I’m not sure what to say about it but more generally two things spring to mind. First, have you had your serum ferritin checked as raising iron levels to over 100 is now a first line treatment amongst expwerts in rls. Secondly, ropinerole can eventually start to make rls symptoms much worse - especially if you start to increase the dose - and you find you need more and more to control the rls. It could be that ropinerole is contributing to this sensation of rls being connected to needing to pee.

[Parminter]

Yes, we're all here.

The only connection I know of between RLS and anything to do with the bladder is that RLS becomes common in serious renal disease.

Check your kidneys as soon a possible.

[marsha2306 in reply to Parminter]

I have the same issue. When my bladder is full my RLS kicks in. It goes away after emptying my bladder. I do not have renal disease or any other renal issues. Many of us have this same issue.

[Hidden]

Hi No Sleep - Welcome to the site - and yes, it is still very much active. I'm so sorry that you have dealt with this for so long.. man that is hard...

Yeah - I have the same issue. What is weird for me is that when I am in that state and asleep, I start dreaming about needing to find a bathroom in my dreams. That has led to some really strange dreams, for sure.

I don't really have a suggestion for this, except if you can, just try to limit your fluids right before you go to sleep. During the night, our hearts work to pull excess fluids out of our systems automatically, so it can just make it worse. I can't help with much during the day because I don't have an issue then. Best of luck and again, welcome!

[NOsleep4Me]

Thank you all!! I appreciate the input and thoughts. I will look into the renal disease. That never occurred to me. But then again, I am not a medical professional and have no idea what to ask or what to look for.

I have always had low iron, I have to constantly work at keeping my levels up. Some weeks and months I do great with diet &/or supplements and then I fizzle due to getting life slams--you know...one thing after another after another in succession.

I am starting to get refocused on my diet to help this issue. I just wish I knew what to ask or bring up with my doctor. I need to get in for this. I am just so TIRED of meds!! I have been them for so long. However, I never have increased my dosage. It has been .25 for over two years now. It is also the only Rx I take. I wish there was a better way to deal with this than with Rx. Maybe my RLS is worsening just due to the fact I have been on ropi so long? Anyways, thanks everyone! I hope to be of encouragement to others as well, but I am so glad I found a place that actually GETS this condition.

[CPDB-RLS]

I have just spent most of my Sunday listening to a very well-known compounding chemist whom I have consulted ion the past. He was brilliant, as usual, to hear about the new remedies. Even though I am, at the moment, having a bit of respite from my RLS (and hope it continues with the use of Folic Acid) I am going to see him tomorrow about it and

my osteoarthritis as it is impacting on my hobbies.

Have you thought of talking to a compounding chemist about your problems and RLS as many (most) GPs are loyal to the big drug companies and will not consider alternatives.

I do not know where you live but if it is near/in Newcastle NSW Aust, it really would be worthwhile to go to Visionary Health Compounding Chemist Hamilton (Newcastle) NSW.

I hope you have success with your dilemma.

CPDB-RLS

[involuntarydancer]

That’s a great suggestion Nosleep4Me