- CASE FILE
I have RLS...over 45 years now! It has turned my life upside down. I don't know how much more I can take. I need relief!
ABOUT THIS CASE FILE
45 year condition so far. Have seen many doctors over the years. At first I was told "it's all in your head". Then the meds started; along with all the side effects. I felt like the test dummy for pharmaceutical companies. When I found one that worked, sooner or later it would have horrible side effects or stop being effective. The discomfort and lack of sleep and rest is now at an all time high. I have dreaded nightfall for some time but it is happening during the day and it's in my arms, too! I can't sit more than a few minutes until the symptoms kick in and I have to get up. Riding/driving in a vehicle, sitting to watch tv, read a book, work on my hobbies, see a movie, work on computer, play games with grandkids, attend their school functions, sleep/nap with grandkids, nap, etc are all things I can't do as frequently as before. My legs and arms must agree as well. My life has changed dramatically.
I spend my nights walking from room to room, hoping I will pass out somewhere. All I seem to use my craft room for is to keep my meds and try to fall asleep on the pallet I made on the floor. The urge/need to move and stand on my legs is powerful; same with my arms. I've tried mind over matter, meditation to no avail. I've had maybe 5 sleep studies and all but last diagnosed or confirmed sleep apnea. I'm constantly kicking and moving. I've knocked things off the wall, tear up a bed, do things I don't remember, eat like I'm starving. I will try to sleep anywhere...kitchen and bathroom floors, on the toilet, walk into walls and doors. I was once outside on gravel driveway. I will sit on my legs, lay on floor with my legs up on bed or sofa.
As I get more exhausted, I cry and often scream out, pleading for God to forgive whatever I've done and take it all away and desperately try to find meds that might knock me out. I currently take Ropinirole; quite often taking the max recommended. If I have any Percocet, I will take one. I have a 50% chance of knocking myself out. I take for FMS pain but it does help with the restlessness.
I use a weighted blanket but don't see any changes. I must have a fan blowing on me constantly.
Other medical conditions: Fibromyalgia, restless leg syndrome, high cholesterol, depression, sciatica, widespread numbness, etc.
Widespread pain, burning feelings in my feet and hands, numbness in hands, legs, abdomen, feet, back, constipation, muscles in lower legs tense up preventing me from urinating, muscles hurting, when urge to move begins, I almost always have to urinate!
I am now 63 years old. I don't know if my aging body can handle all of this - physically and emotionally! I am also worried that without proper rest, I will not be able to continue providing care to my husband who has Parkinson's. Just being able to tell my grandkids I'll do things without having to say "let's wait and see if Mimi feels better", that, along with some restful sleep is the relief I want!