I have just joined the site, and this is an odd opening question maybe, but I'll explain......
I am 40 yrs old, and have severe RLS from the neck down, 24/7.
I have been taking pramipexole for years, and it usually keeps things bearable, but not always.
I have a few other problems, which I know are commonly connected.........
1. Part-syndrome narcolepsy (I can stop myself falling asleep, but it requires a certain amount of effort). Apparently I will fall asleep in less than 6 minutes every time I'm asked to!!! I take modafinil to keep me functioning through the day. This was prescribed by the sleep centre in London. They also diagnosed me with .......
2. Sleep apnoea - it doesn't wake me though! I have yet to get a 'Darth Vader' machine, as I keep forgetting the appointments!
3. Depression - life long coper (I refuse to wallow in it!). On and off anti-depressants since age 14.
4. Hyper mobility - Ehlers Danlos type 2 to be precise.
I smoke - but giving up for 9 years made no difference, it still kept getting worse regardless.
I am overweight, but not hugely!
My iron levels are always low - I've tried every type of supplement available, but level stays low!
If my lower back is slightly out, this makes the RLS completely unbearable, but without meds it's unbearable anyway
But, my bladder query.......
My first memory of RLS was at age 14. I was with a friend at a gig. I was terrified of getting lost, so I ignored my body's desire to go to the loo for 7 hours in total. The 2 hour coach trip home was horrendous - due to what I now know as RLS!!!
After that, I occasionally got an attack, but thus increased as years went on.
Now, it occurred to me one day that RLS is more common in women, during pregnancy, and in old age. One thing in common with the latter 2 is loss of complete bladder control. Add that to what I said about me not going to the loo for hours on end, and you will see why I am asking!
Other than that, if anyone has a miracle cure, please chuck it my way!!! As someone who doesn't really like 'western' medicine, I'd love to stop rattling as I walk lol!