Could I be done with RLS?

[SleepyBhamster]

I haven't been on these forums in several months because I have not had any recurrence of RLS symptoms, even though my first and only iron infusions were in Sept/Oct of 2020. I was told here that I should expect to need another round of infusions 6-8 months after the first one.

The last doctor I saw was Dr. Arthur Walters in July 2021 (via Zoom). He told me that we would wait to do anything further when I started to show RLS symptoms again, but as stated, I haven't yet.

So here's my question: as I look back at the past 3-5 years, this all started with severe benzo withdrawal. When everything else cleared up after a few years, I still had the kicking at night. My psychiatrist told me that that was not at all a possible withdrawal symptom and it must be from something else. But now I have to wonder if my RLS did indeed start with that and somehow has finally cleared up after that iron infusion.

Does this seem at all likely or possible? I see my rheumatologist tomorrow and was going to give him all my RLS materials--as I don't think I will be needing them anymore.

Thanks!

Celine

[badnights]

Just from my personal perspective, I would say it's entirely possible. It might not technically have been withdrawal, but something in your body needed to recover from being on benzos, and it took a few years to adjust.

I think the same kind of thing might happen to those of us who have augmented on dopaminergic medications. It might take 5 or even 10 years to recover; the damage is long-term but not permanent.

[ViewsAskew]

Agreed with Beth!

[SleepyBhamster]

I'm sorry I never saw the replies from Badnights and ViewsAskew! Would have helped relieve my mind a great deal. But as I recall, I'm pretty sure my rheumatologist thought it might be possible as well.

So now once again, I am seeing him tomorrow and wondering if I should have him test my iron levels even though I'm probably all right. The only thing I notice is that if I'm particularly stressed out, I will kick around in bed a bit. If I had never heard of RLS, I wouldn't think anything more than, "I'm anxious." But now it's always an extra source of anxiety: "Is RLS coming back?"

I may not kick around as much at night starting now if I simply tell myself that I'm done with RLS and anything else is just muscles wanting a stretch--which is entirely possible in my case as I"m going through PT for knee problems and some weak quads.

Thanks so much--still very grateful for all the help I got here!

Celine

[Polar Bear]

Sleepy8hanster - you mention PT for knee problems and what just comes to mind is that too much physical exercise can make our rls symptoms temporarily worse, give us a bad night. As indeed can too little exercise.

[SleepyBhamster]

Yes! One reason I hate starting a new exercise regimen--but of course I shouldn't have stopped the old one.