Total relief from RLS!!

[Lor7]

Just had to share, I had/have a urinary frequency issue. Was prescribed Mirabegron, didn’t help my urinary frequency but, suddenly realized, amazingly, my RLS (had for 30 years) just stopped! Consultant said carry on taking it then for RLS but told him couldn’t because it was making my urinary frequency worse, which he said does happen with some people! If you can it’s worth a try I was amazed.

[involuntarydancer]

That’s weird. I never heard of mirabegron before but google says it stimulates the adrenergic receptors in the detruser muscle in the bladder. The thing is, my rls, usually very reliable, has been barely evident in the last few weeks. This has coincided with me having a huge amount of adrenaline constantly coursing through my system as a result of some very anxious-making events going on in my life. I have been wondering if there is a connection between the adrenaline and the improved rls and now you post about relief using a drug that interacts with the adrenergic receptors.

Another one to add to the list to be discussed with my GP.

I wonder has anyone else noticed a connection between periods of improved rls symptoms and anxiety serious enough to raise adrenaline levels appreciably.

[Pam34 in reply to involuntarydancer]

On the contrary. I find my RLS is exacerbated by anxiety to the point where I’m not sure which comes first. Anxiety in anticipation of my RLS starting or my RLS kicking in and causing anxiety. But maybe my anxiety is ‘chronic ‘ and not ‘acute’ as yours appears?

Certainly something to investigate! I hope you manage to come through the events in your life that are causing this even if it means the return of the dreaded RLS.

[LisztLover in reply to Pam34]

I agree with you Pam as anxiety and added physical activity make my RLS worse.

[involuntarydancer in reply to Pam34]

I hear what you say but this is not like what I would think k of as ‘normal’ anxiety (and I don’t mean by that to down-play anxiety - it is a curse). It is more like I am in a constant state of ‘fight or flight’ as a result of a huge life event - heart pounding, inability to focus on anything but the problem, constantly needing the loo (when normally I am blessed with excellent bladder and bowels - please excuse the tmi). It’s definitely the adrenal system in play - or maybe that is what acute anxiety feels like? I am not a particularly anxious person normally. Of course it could be coincidence, rls is so unpredictable. I am always interested in your views, Pam.

[Restlesssinger in reply to involuntarydancer]

I highly recommend EMDR (eye movement desensitization and reprocessing) therapy to help with the anxiety you have as a result of that "huge life event," involuntarydancer. You can learn more about it at emdria.org. Best wishes to you.

[Pam34 in reply to involuntarydancer]

Yes, I suppose the anxiety, like I said, is more chronic. It’s a dull, nagging feeling that precedes the start of RLS or can come along during an episode. My heart rate is raised, I have that fluttery feeling and often feel flushed.

It’s an uncomfortable feeling so I’m not sure I would like to live in a raised, constant state of panic just to relieve my legs!

It’s an interesting thought though and one to read up on like so many others! Sometimes my brain gets so overwhelmed with possible causes, promised cures, try this, try that, that the stress of it all brings an attack on!

Unfortunately my current episode can only be blamed on a late night and one too many glasses of wine! Christmas do, my fault!

[Hidden in reply to involuntarydancer]

I know that there is a connection in my case, but I’m still trying to figure out what it is. My legs don’t seem to know either since they act up whenever they feel like it (ex. sometimes will act up in times of high anxiety, sometimes in times of low anxiety, sometimes when excited, other times when bored out of my mind, etc.).

The only pattern I’ve pinpointed is them acting up when sick (like now, although more excited about going home for Christmas than sick so even that isn’t a set pattern). So frustrating!

Good luck with everything and hope you pull through okay!

[martino]

That is interesting. I take Mirabegron but am on several other things that keep the RLS at bay. I guess unless I stopped taking them I’ll never know.

[Hidden]

Wow!! That’s amazing!! So happy for you!

[Lor7]

Yes it was great while it lasted. But caused me more issues for the condition it was supposed to treat so have had to stop them. So, now the RLS is back! Apparently they work on the Beta 3 adrenoceptors which my urologist says is why they probably had a positive affect on my RLS.

[Hidden]

Sounds great. I've just looked it up and it appears that it won't be suitable for me due to other medical problems but looks as if it could well be another solution for some or even many and maybe ' they' will research further and find something similar with less side effects if we plug away.

I discovered Pregabalin helped my RLS many years ago when prescribed for the discomfort of peripheral neuropathy - effect later wore off. At the time I thought it was wonder drug and I contacted the information dept at the drug company and asked if they knew about this effect and was any research being done. They said they had had some other anecdotes of the effect and were just about to start controlled trials.

Now it's a standard treatment for RLS.

Might you be able to do the same or also write to Dr B in California or Dr Earls at John Hopkins? It might give them another arm to research.

I keep hoping someone will research the thing I and others have reported about the easing of symptoms during fever.

We have to keep plugging away!

[Lor7 in reply to Hidden]

Yes I know it worked for me but may not work for others. But I intend to write to the company to ask if there is anything they can do to make this work for RLS but not act on the bladder.

[Comunity]

Its strange you should mention the bladder as i have always thought my rls was related to either bladder or bowel. I have suffered for 50 years and i have also had 3 weeks sleep after my covid jab i thought it was because istarted taking magnesium but its come back