Now dealing with RGS
Hello,
I have severe RLS, been about 28 years, tried all the meds, Mirapex 0.75 works the best, So many nights I just want stab my legs, yes it's that bad. They never want to stop moving. If you don't have it, you can't understand the feeling and frustration. Someone needs to cure it! So now i'm in my mid 60s and I now Restless Genital Syndrome, What in the world is this. It's bizarre friends! In my life I never thought of a Restless Vagina, but here I am as if the legs aren't bad enough! There is not alot of info or studies ! Can we get crackin on this please! You can't die from it but suicide has crossed my mind many nights because living with this is a crappy quality of life. Do you see a sleep Doc, Neurologist? I want a doc that specializes in RLS. Can't find one of them. I wouldn't wish this on anyone.
Thanks Lori! I do have support, not sure they can fully understand how bad this is though. Thanks for the info, I will look into it for sure. I really wish my PCP and other PCPs would get on board with a lot more knowledge and understanding. Felt like mine brushes me off.
My heart goes out to you,
. I don't think you are alone in feeling like you do. RLS can have a significant impact on mental health if it's untreated. Finding a specialist who understands RLS can make a huge difference. Here is a tool from the Restless Legs Syndrome Foundation that might help you find someone in your area: https://www.rls.org/find-HCP. It might even be worth traveling for someone who is especially good, especially if you can do follow-up visits virtually. Restless Genital Syndrome is not as uncommon as you might think. Here is an article about it for those who are unfamiliar with it: https://restlesslegssyndrome.sleep-disorders.net/living/restless-genital-syndrome. Please know that we are here for you whenever you need support or a place to vent. Do you have support from those closest to you? Thinking of you and sending lots of gentle hugs your way. - Lori (Team Member)
