My experiences with RLS

My issues with jumping legs or RLS started when I was 21 and pregnant with my first son, who sadly also suffers from RLS and Fibromyalgia.

I am an active busy 73 and I can honestly say that this life destroying condition has gnawed away at me constantly over this time.

My sleep has been deprived most nights with my legs unable to relax and keep still. My only time of respite was when at the age of around 49 I was put onto an iron supplement during menopause, I was anaemic due to heavy periods. That was utter heaven but as soon as they took me off it all came back!

Finally about 2-3 years ago I was put on Pramapexole which worked but I now regret as it gives bad augmentation. After a few months symptoms gradually creep back in. I was on a dose of just one tablet so decided to wean myself off as I was fearful of meds and symptoms escalating. I did that but it was hard, then I needed a replacement, so was given Rotigotine, a patch dopamine. One patch seemed to do the trick…. then 2… then back symptoms came again.

So I went back to Pramapexole and was up to two .088 mg tablets and back creeps the dreadful RLS symptoms, afternoon evening and night-time.

Having had a discussion with about the 6th different dr at my surgery 🤦‍♀️, I was told I could go on iron (my suggestion) ferrous fumarate every other day. Having read multiple reports of RLS I am fully aware that even if your iron levels appear within normal range, although at the low end of normal, that is relevant to RLS. It is also important to understand, which I don’t think a lot of drs do, that if your levels come back normal you can still have low iron levels within your brain, which is more relevant to RLS. Doctors don’t seem to identify this very important fact.

So then I was taking 2 Pramipexole per day and iron every other day, now increased to every day.
I was told to think about what I wanted to do ... who is the dr here!!! Carry on with Pramipexole or change to Gabapentin or Pregabalin (non dopamine drugs) but very strong and addictive I believe.

2 weeks ago I decided wean myself off Pramapexole, 2/8th of a tablet less every week, I got down to 1 and 1/4 but had zero sleep. Couldn’t speak to a dr until September, told I could be given a referral to a pharmacist, he said Pramapexole wasn’t addictive … ha, and I should be taking more if my symptoms are worse not less. I can see the logic in that but where does it end?

I had another call from the surgery receptionist telling me I have to go back to 2 tablets and am due to speak to yet another different dr next Friday.

Yes my restless legs are back to being fine but feel my agonising few weeks have been a waste of time. Just do not know what to do for the best, both present and long term. It is very scary.